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>>WELCOME.

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YOU'VE JOINED THE PANEL ON 

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TOWARD MORE DIVERSE PARTICIPANTS

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AND HUMAN NEUROIMAGING RESEARCH:

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OPPORTUNITIES AND CHALLENGES.

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I'M SUSAN WOLF.

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REGIONS PROFESSOR AND LAW 

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PROFESSOR OF PUBLIC POLICY AT 

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THE UNIVERSITY OF MINNESOTA AND 

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FACULTY CHAIR AT THE 

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UNIVERSITY'S CONSORTIUM ON LAW 

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AND HEALTH ENVIRONMENT.

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IF I COULD HAVE THE MODERATOR, 

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SLIDES PLEASE.

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GREAT.

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WE'RE HERE TO TACKLE AN ISSUE OF

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TREMENDOUS IMPORTANCE TO 

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EVERYONE HERE IN THE BRAIN 

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COMMUNITY WHICH IS HOW EMERGING 

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M R EEUCHLT AND OTHER TECHNOLOGY

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CAN HELP ADVANCE A MORE DIVERSE 

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SET OF PARTICIPANTS IN OUR 

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RESEARCH AND ENGAGEMENT.

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WE WANT TO TALK ABOUT THE 

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OPPORTUNITIES, BUT ALSO THE 

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CHALLENGES WITH A TERRIFIC PANEL

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OF FIVE EXPERTS.

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NEXT SLIDE, PLEASE.

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THIS IS OUR FUNDING 

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ACKNOWLEDGEMENT.

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THANK YOU.

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NEXT SLIDE.

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SO THE FOCUS OF THIS PANEL IS 

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THE ETHICAL, LEGAL, AND SOCIAL 

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IMPLICATIONS THE L C ISSUES THAT

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EMERGE FROM EXPANDING EXCLUSIVE 

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IMAGES FROM NEUROIMAGING 

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RESEARCH.

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AND THIS PANEL GROWS OUT OF A 

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BRAIN FUNDED IF YOU LOOK ON THE 

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RIGHT SIDE OF THE SLIDES WE'VE 

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GOT DR. LENETTE JONES AT THE 

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UNIVERSITY OF MICHIGAN SCHOOL OF

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NURSING.

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DR. FRANCIS SHEN WHO IS 

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PROFESSOR OF LAW HERE AT THE 

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UNIVERSITY OF MINNESOTA WHERE I 

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AM AS WELL AS FACULTY MEMBER.

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DR. MILDRED CHO THE ASSOCIATE 

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DIRECTOR OF STANFORD CENTER FOR 

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BIO MEDICAL ETHICS AND 

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DR. JONATHAN JACKSON WHOSE 

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EXECUTIVE DIRECTOR OF THE 

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COMMUNITY ACCESS RECRUITMENT AND

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ENGAGEMENT RESEARCH CENTER AT 

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MASS GENERAL AND HARVARD MEDICAL

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SCHOOL AS WELL AS AN INSTRUCTOR 

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OF NEUROLOGY AT MGH.

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SO THIS IS JUST A QUICK CONTEXT 

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SLIDE TO GIVE YOU A SENSE OF 

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THIS PROJECT.

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DR. JACKSON IS A PARTICIPANT IN 

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OUR WONDERFUL WORKING GROUP AND 

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YOU'LL SEE WE HAVE TWO AIMS.

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ONE TO SERVE THE GENERAL PUBLIC 

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AS WELL AS EXPERT STAKEHOLDERS 

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TO PROBE LIKELY USE CASES FOR 

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HIGHLY PORTABLE MRI, THE ISSUES 

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THAT FLOW FROM THAT, POTENTIAL 

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SOLUTIONS AND FOR THE PUBLIC, 

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WILLINGNESS TO PARTICIPATE.

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ALL OF THIS IS AND SOLICITED 

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FEEDBACK.

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A LOT OF THESE PEOPLE WILL BE 

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KNOWN TO YOU INCLUDING ONE OF 

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THE PLANNERS FOR THIS EVENT.

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NEXT SLIDE.

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THEN AFTER ALL FIVE SPEAKERS 

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HAVE PRESENTED WE'LL GO TO 

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TALKING WITH EACH OTHER AND 

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PRESENT YOUR QUESTIONS.

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WITH THAT, I'D LIKE TO WELCOME 

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DR. DOTSON.

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>> THANK YOU SO MUCH TO
DR. WOLF

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AND DR. SHEN FOR THE ABILITY TO 

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BE PART OF THIS PANEL.

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THE LONG AND SHORT OF THINGS IS 

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THAT THE RESEARCH WE'VE BEEN 

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DOING IN COGNITIVE AND ETHNIC 

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NEUROSCIENCE.

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IN A REVIEW PAPER THAT I 

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CO-AUTHORED A COUPLE OF YEARS 

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AGO, WE TRIED TO PUT SOME 

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NUMBERSES ON THIS PROBLEM THAT 

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WE WERE IDENTIFYING THAT 

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DIFFERENT ASPECTS OF DIVERSITY 

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WHETHER IT BE RACE, ETHNICITY, 

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SOCIO ECONOMIC STATUS WE CHOSE 

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TWO WELL-KNOWN COGNITIVE JOURNAL

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SCIENCES.

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AND LOOKED AT EACH OF THE 

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ARTICLES THAT WERE PUBLISHED FOR

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AN ENTIRE YEAR AND WHAT WE FOUND

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ACROSS 208 ARTICLES IS THAT THE 

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NUMBERS WERE QUITE DISHEARTENING

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IN THE SENSE WE ONLY HAD ABOUT 

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14% OF STUDIES THAT EVEN 

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REPORTED ON RACE OR ETHNICITY.

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ONLY 18% REPORTED ON SOCIO 

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ECONOMIC STATUS AND LESS THAN 1%

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EXAMINED RACE OR ETHNICITY AS A 

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MEASURE OR SOCIO ECONOMIC STATUS

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AS A PREDICTOR IN THEIR STUDIES.

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SO NOT ONLY ARE VERY FEW STUDIES

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REPORTING THE NUMBERS, BUT EVEN 

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FEWER ARE TRYING TO USE THEM AS 

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A PREDICTOR.

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THERE WERE THREE OF THE SAMPLES 

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THAT WERE 100% NONHISPANIC 

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WHITE.

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SO IT HELPS JUST PUT AGAIN SOME 

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NUMBERS ON THIS PROBLEM.

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I WILL ACKNOWLEDGE THAT THIS WAS

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DONE BEFORE 2020.

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A LOT OF THE FOCUS HAS BEEN ON 

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INCREASING THE STUDY EXAMPLES.

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BUT I DO WANT TO HIGHLIGHT WHERE

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WE'VE BEEN IN RECENT HISTORY AND

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THAT WE REALLY DON'T WANT TO GO 

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BACK THERE.

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WE WANT TO KEEP IMPROVING OUR 

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INCLUSION OF DIFFERENT GROUPS 

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WITHIN OUR STUDIES.

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CHRONIC VASCULAR DISEASE CAN BE 

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PREDISEASE POSED OR WHEN IT 

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STARTS TO AFFECT BRAIN NETWORKS 

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THAT ARE IMPORTANT FOR MOOD.

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AND AS YOU MIGHT EXPECT BASED ON

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THE FACT THAT VASCULAR DISEASES 

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ARE MORE COMMON IN SOME 

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POPULATIONS PARTICULARLY IN 

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BLACK, OLDER ADULTS, YOU WOULD 

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PROBABLY AND BLACK OLDER 

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ADULTIADULTS.

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AND THE ANSWER IS VERY LITTLE.

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WHEN SHE TRIED TO LOOK 

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SPECIFICALLY, THERE WERE ONLY 

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TWO STUDIES THAT CAME UP.

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THAT HAS TO DO WITH THIS 

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CO-MORBIDITY OF DEPRESSION AND 

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VASCULAR CONDITIONS.

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THEN WE FOUND A FEW MORE 

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STUDIES, BUT ONLY 30 USING THESE

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WITHIN THOSE STUDIES, THERE WAS 

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STILL ONLY ABOUT 67 PARTICIPANTS

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THAT WERE BLACK ACROSS THESE 

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STUDIES AND THE PERCENTAGE OF 

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THE SAMPLE WAS AS LOW AS 14%.

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BECAUSE WE'RE BEING LENIENT, WE 

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HAD INCLUDED THE STUDY.

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IMPORTANTLY, FOR WHAT WE'RE 

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TALKING ABOUT TODAY, ONLY ONE 

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USED IMAGING AND THAT'S 

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IMPORTANT BECAUSE WE THINK THAT 

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NEUROIMAGING IS THE BEST WAY OF 

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FINDING DEPRESSION.

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AND SO IN TERMS OF THE BEST WAY 

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OF DEFINING VASCULAR DEPRESSION,

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THERE WAS ONLY ONE STUDY.

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BRIEFLY, WE DID FIND THERE WAS 

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AN ASSOCIATION BETWEEN VASCULAR 

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CONDITIONS AND DEPRESSION THAT 

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HAVING THAT WAS ASSOCIATED WITH 

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COGNITIVE, SOCIAL OUTCOMINGS.

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AGAIN, THIS WAS USING VERY 

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LENIENT CRITERIA AND NOT 

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SPECIFICALLY LOOKING AT VASCULAR

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DEPRESSION.

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THE NEGATIVE CONSEQUENCES OF 

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VASCULAR DEPRESSION COULD BE 

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GREATER IN BLACK, OLDER ADULTS.

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FOR EXAMPLE, IN CERTAIN RECENT 

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ANALYSES WE'VE DONE IN THE LAB 

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AS STUDENTS DISSERTATION, SHE 

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FOUND THAT THE RELATIONSHIP 

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BETWEEN DEPRESSO SYMPTOMS WAS 

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GREATER IN WHITE OLDER ADULTS.

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THE VASCULAR DEPRESSION WAS 

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GREATER ON PROCESSING SPEED IN 

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THE BLACK SAMPLE COMPARED TO THE

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WHITE SAMPLE.

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SO WE'RE SEEING THIS PRELIMINARY

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EVIDENCE THAT NOT ONLY IS THERE 

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A HEALTH DISPARITY IN VASCULAR 

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DEPRESSION AND WHITE OLDER 

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ADULTS.

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DESPITE THAT, THERE'S SO LITTLE 

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RESEARCH OUT THERE THAT 

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ADDRESSES THIS VULNERABLE GROUP.

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SO IT'S FULLY RESEARCHED ON A 

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CONDITION THAT THEY'RE 

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PARTICULARLY VULNERABLE TO AND 

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THIS HAS A LOT OF IMPLICATIONS.

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SO SOME OF THE LIMITATIONS OF 

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THIS THAT THIS DEMONSTRATES 

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ACROSS STUDIES THAT DON'T HAVE, 

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YOU KNOW, ADEQUATE 

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REPRESENTATION ARE ABILITY TO 

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GENERALIZE FINDINGS IS GOING TO 

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BE LOWER WHEN THE PEOPLE WHO ARE

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STUDYING ARE NOT THE PEOPLE 

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BEING AFFECTED BY THE CONDITIONS

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WE'RE LOOKING AT.

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THERE'S A MISSED OPPORTUNITY TO 

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IMPROVE TREATMENT AND WE CAN 

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IMPROVE TREATMENT TO IDENTIFY 

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AND PERSONALIZE INTERVENTIONS, 

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BUT THAT CAN'T BE DONE WHEN 

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YOU'RE NOT INCLUDING A SAMPLE OF

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PEOPLE REPRESENTING THE 

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POPULATION.

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WE KNOW THAT WHEN WE DON'T HAVE 

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REPRESENTATION IN RESEARCH, WE 

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CAN PERPETUATE HEALTH 

225
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DISPARITIES AND BECAUSE WE'RE 

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NOT ABLE TO SPECIFIC ADDRESS HOW

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DIFFERENT GROUPS ARE AFFECTED 

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AND UNDERSTANDING HOW BASES OF 

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DIFFERENT DISORDERS COULD BE 

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DIFFERENT IN DIFFERENT GROUPS 

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AND I THINK ULTIMATELY, THERE'S 

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IMPLICATIONS FOR OUR ETHICAL AND

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MORAL RESPONSIBILITIES AS PEOPLE

234
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PEOPLE WERE FUNDED BY NIH AND 

235
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WANT TO DO RESEARCH FOR THE 

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00:12:03,200 --> 00:12:05,120
PEOPLE PAYING OUR TAX DOLLARS TO

237
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BE DOING THE RESEARCH THAT WE'RE

238
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DOING.

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THAT'S A BIG QUESTION WITHOUT 

240
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SIMPLE ANSWERS.

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I WILL SAY A FEW THINGS WE CAN 

242
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THINK OF RIGHT AWAY, ONE IS WE 

243
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CAN WORK ON INCREASING DIVERSITY

244
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OF RESEARCH SAMPLES.

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THAT'S EASIER SAID THAN DONE.

246
00:12:21,400 --> 00:12:22,720
DEPENDING ON WHERE YOU LIVE, 

247
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WHERE YOU WORK IN TERMS OF 

248
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TRYING TO INCREASE DIVERSITY, 

249
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BUT THERE ARE DIFFERENT WAYS 

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THAT CAN BE HELPFUL.

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I OFTEN RECOMMEND GIVING BACK TO

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THE COMMUNITY.

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RATHER THAN JUST SAYING I WANT 

254
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TO COME TO YOUR COMMUNITY 

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CENTER, SAY I'M GOING TO COME 

256
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AND GIVE A RESEARCH TOPIC IN 

257
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LANGUAGE AND FOCUS ON THE 

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COMMUNITY, GIVE YOU INFORMATION 

259
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THAT'S HELPFUL.

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BUT I'VE GIVEN YOU SOME 

261
00:12:56,480 --> 00:12:57,400
INFORMATION THAT'S HELPFUL.

262
00:12:57,400 --> 00:12:59,520
SO IF YOU'RE LIVING IN A PLACE 

263
00:12:59,520 --> 00:13:00,800
WHERE THE COMMUNITY AROUND YOU 

264
00:13:00,800 --> 00:13:02,600
IS NOT REPRESENTING DIFFERENT 

265
00:13:02,600 --> 00:13:05,240
ASPECTS OF DIVERSITY, WE CAN DO 

266
00:13:05,240 --> 00:13:07,240
BETTER BY HAVING STUDIES ENGAGED

267
00:13:07,240 --> 00:13:09,680
IN DIFFERENT PLACES SO YOU CAN 

268
00:13:09,680 --> 00:13:11,000
INCREASE DIVERSITY IN THAT WAY.

269
00:13:11,000 --> 00:13:13,760
WE CAN ALSO MAKE BETTER USE OF 

270
00:13:13,760 --> 00:13:16,240
EXISTING DATA.

271
00:13:16,240 --> 00:13:16,920
SO ONE THING WE'VE BEEN DOING IN

272
00:13:16,920 --> 00:13:19,080
MY LAB IS WHEN WE HAVE THESE 

273
00:13:19,080 --> 00:13:22,480
LARGE PUBLICLY AVAILABLE DATA 

274
00:13:22,480 --> 00:13:23,520
SETS, OFTEN TIMES, THE 

275
00:13:23,520 --> 00:13:24,680
PERCENTAGE OF THE POPULATION OR 

276
00:13:24,680 --> 00:13:27,480
THE SAMPLE THAT REPRESENTS 

277
00:13:27,480 --> 00:13:29,680
DIFFERENT GROUPS WHETHER IT BE 

278
00:13:29,680 --> 00:13:33,160
LOW SCS, THE PERCENTAGE MIGHT BE

279
00:13:33,160 --> 00:13:34,640
LOW, BUT THE ABSOLUTE NUMBER IS 

280
00:13:34,640 --> 00:13:35,440
NOT TOO BAD.

281
00:13:35,440 --> 00:13:39,440
SO YOU MIGHT HAVE 300, 400 

282
00:13:39,440 --> 00:13:41,120
PEOPLE WHO ARE REPRESENTING SOME

283
00:13:41,120 --> 00:13:43,320
ASPECT OF DIVERSITY AND YOU CAN 

284
00:13:43,320 --> 00:13:45,600
FOCUS ANALYSES ON THAT SUBSET SO

285
00:13:45,600 --> 00:13:47,720
THAT THE PLANNINGS ARE NOT 

286
00:13:47,720 --> 00:13:50,720
GETTING SO MUCH WATERED DOWN BY 

287
00:13:50,720 --> 00:13:51,600
HAVING THE OVERALL GROUP 

288
00:13:51,600 --> 00:13:51,840
ANALYSIS.

289
00:13:51,840 --> 00:13:55,040
WE CAN DO THESE SUBSAMPLE 

290
00:13:55,040 --> 00:13:57,400
ANALYSES AND ALSO INTEGRATE FROM

291
00:13:57,400 --> 00:13:58,680
DIFFERENT DATA SETS.

292
00:13:58,680 --> 00:13:59,960
SO YOU'RE COMBINING AND 

293
00:13:59,960 --> 00:14:00,640
COLLAPSING DATA TOGETHER.

294
00:14:00,640 --> 00:14:02,840
SO YOU HAVE A WAY OF INCREASING 

295
00:14:02,840 --> 00:14:04,840
YOUR SAMPLE SIZE.

296
00:14:04,840 --> 00:14:05,800
FINALLY, WE CAN BE MORE 

297
00:14:05,800 --> 00:14:07,040
TRANSPARENT IN REPORTING.

298
00:14:07,040 --> 00:14:09,600
THE VERY LEAST THAT WE DO IS 

299
00:14:09,600 --> 00:14:11,800
MAKE SURE EVERY STUDY WE DO, 

300
00:14:11,800 --> 00:14:13,160
WE'RE REPORTING ON DIFFERENT 

301
00:14:13,160 --> 00:14:17,200
ASPECTS THAT THE LEADER WILL 

302
00:14:17,200 --> 00:14:19,120
KNOW HOW WELL THE SUPPLY TO 

303
00:14:19,120 --> 00:14:23,080
DIFFERENT GROUPSES AND WHAT 

304
00:14:23,080 --> 00:14:26,080
STEPS MIGHT BE FOR THAT AREA OF 

305
00:14:26,080 --> 00:14:28,280
RESEARCH.

306
00:14:28,280 --> 00:14:29,680
LASTLY, I WOULD HIGHLY RECOMMEND

307
00:14:29,680 --> 00:14:33,440
HOW ASPECTS OF DIVERSITY CAN BE 

308
00:14:33,440 --> 00:14:34,320
AFFECTED IN OUR FINDINGS 

309
00:14:34,320 --> 00:14:34,680
DISCUSSIONS.

310
00:14:34,680 --> 00:14:37,440
SO AT LEAST TALK ABOUT IT.

311
00:14:37,440 --> 00:14:38,920
GIVING THAT FUTURE INSPIRATION 

312
00:14:38,920 --> 00:14:39,240
FOR STUDIES.

313
00:14:39,240 --> 00:14:40,840
AND, WORRYING WITH THE DATA THAT

314
00:14:40,840 --> 00:14:42,560
WE HAVE WHEN WE'RE NOT ABLE TO 

315
00:14:42,560 --> 00:14:44,600
GET THE SAMPLES THAT MAYBE WE 

316
00:14:44,600 --> 00:14:46,560
WANT, BUT AT LEAST BEING AWARE 

317
00:14:46,560 --> 00:14:49,200
OF HOW IT CAN AFFECT THE 

318
00:14:49,200 --> 00:14:49,640
RESEARCH.

319
00:14:49,640 --> 00:14:52,320
SO THANK YOU FOR YOUR ATTENTION.

320
00:14:52,320 --> 00:14:56,680
WITH THAT, I WILL TURN THINGS 

321
00:14:56,680 --> 00:14:59,480
OVER TO OUR NEXT SPEAKER WHO IS 

322
00:14:59,480 --> 00:14:59,760
DR. JONES.

323
00:14:59,760 --> 00:15:00,600
>> GOOD MORNING.

324
00:15:00,600 --> 00:15:01,200
AND THANK YOU.

325
00:15:01,200 --> 00:15:04,960
MY NAME IS LENETTE JONES.

326
00:15:04,960 --> 00:15:07,880
I'M AN ASSISTANT PROFESSOR AT 

327
00:15:07,880 --> 00:15:10,520
THE UNIVERSITY OF MICHIGAN 

328
00:15:10,520 --> 00:15:10,920
SCHOOL OF NURSING.

329
00:15:10,920 --> 00:15:12,320
I'VE BEEN INVOLVED WITH THIS 

330
00:15:12,320 --> 00:15:13,520
RESEARCH FOR MORE THAN 20 YEARS.

331
00:15:13,520 --> 00:15:15,280
SO I'M EXCITED TO SHARE MY WORK 

332
00:15:15,280 --> 00:15:20,640
WITH YOU, SO LET'S GET STARTED.

333
00:15:20,640 --> 00:15:24,640
BRIEFLY, I AM FUNDED BY THE NIH,

334
00:15:24,640 --> 00:15:26,120
I ALSO LIKE TO ACKNOWLEDGE 

335
00:15:26,120 --> 00:15:32,120
SUPPORT I RECEIVE FROM OUR 

336
00:15:32,120 --> 00:15:35,760
MENTORS SO FOR A SHORT TIME 

337
00:15:35,760 --> 00:15:41,840
TOGETHER, I'VE OUTLINED THREE 

338
00:15:41,840 --> 00:15:42,360
GOALS.

339
00:15:42,360 --> 00:15:44,720
NEXT, I'M GOING TO SHARE 

340
00:15:44,720 --> 00:15:47,080
FINDINGS FROM THREE OF MY 

341
00:15:47,080 --> 00:15:48,720
STUDIES FROM RELEVANT TOPICS.

342
00:15:48,720 --> 00:15:52,560
AND LAST I WILL SUMMARIZE 

343
00:15:52,560 --> 00:16:03,000
FINDINGS AS A SCIENTIFIC 

344
00:16:05,440 --> 00:16:08,520
COMMUNITY THE LEADING CAUSE OF 

345
00:16:08,520 --> 00:16:12,680
MORBIDITY AND G MORTALITY AMONG.

346
00:16:12,680 --> 00:16:13,280
SO APPROXIMATELY ONE IN THREE 

347
00:16:13,280 --> 00:16:16,560
U.S. ADULTS HAVE HYPERTENSION, 

348
00:16:16,560 --> 00:16:18,120
BUT AMONG AFRICAN AMERICANS, 

349
00:16:18,120 --> 00:16:21,000
IT'S MUCH HIGHER AT 54%.

350
00:16:21,000 --> 00:16:23,840
SO IN ADDITION, WITH COMPARED TO

351
00:16:23,840 --> 00:16:24,880
OTHER GROUPS.

352
00:16:24,880 --> 00:16:27,240
AFRICAN AMERICANS ARE TWO TIMES 

353
00:16:27,240 --> 00:16:30,760
LIKELY TO SUFFER A STROKE OR DIE

354
00:16:30,760 --> 00:16:31,400
FROM A CARDIAC RELATED DEATH AND

355
00:16:31,400 --> 00:16:36,440
OVER FOUR TIMES LIKELY TO BE 

356
00:16:36,440 --> 00:16:38,440
DIAGNOSED WITH END STAGE RENAL 

357
00:16:38,440 --> 00:16:38,680
DISEASE.

358
00:16:38,680 --> 00:16:43,480
SO THIS IS A VERY IMPORTANT 

359
00:16:43,480 --> 00:16:46,480
PROBLEM TO ADDRESS.

360
00:16:46,480 --> 00:16:48,760
SO ALSO, WE KNOW THAT 

361
00:16:48,760 --> 00:16:50,120
HYPERTENSION CAN BE MANAGED WITH

362
00:16:50,120 --> 00:16:52,040
LIFE STYLE CHANGES SUCH AS 

363
00:16:52,040 --> 00:16:54,600
CHANGES IN EATING PATTERNS, 

364
00:16:54,600 --> 00:16:56,360
INCREASING EXERCISE, AND 

365
00:16:56,360 --> 00:16:57,880
ADHERING TO MEDICATIONS.

366
00:16:57,880 --> 00:17:00,360
HOWEVER, ALL OF THESE ACTIVITIES

367
00:17:00,360 --> 00:17:02,080
TAKE COGNIZANT EFFORT AND WORK.

368
00:17:02,080 --> 00:17:06,200
AND SO IN ADDITION TO THE ISSUES

369
00:17:06,200 --> 00:17:12,600
I OUTLINED ON THE PREVIOUS SLIDE

370
00:17:12,600 --> 00:17:14,320
AFRICAN AMERICAN ADULTS ARE MORE

371
00:17:14,320 --> 00:17:16,680
LIKELY TO HAVE COGNITIVE 

372
00:17:16,680 --> 00:17:17,000
IMPAREMENTS.

373
00:17:17,000 --> 00:17:19,320
SO THESE PROBLEMS WILL BENEFIT 

374
00:17:19,320 --> 00:17:21,120
FROM SCIENTIFIC INVESTIGATION 

375
00:17:21,120 --> 00:17:22,960
INCLUDING NEUROIMAGING STUDIES 

376
00:17:22,960 --> 00:17:24,120
TO SEE EXACTLY WHAT'S GOING ON 

377
00:17:24,120 --> 00:17:29,760
IN THE BRAIN AND WITH BRAIN 

378
00:17:29,760 --> 00:17:30,760
MATTER.

379
00:17:30,760 --> 00:17:32,760
SO WE SHARE MODELINGS IN OUR 

380
00:17:32,760 --> 00:17:34,360
APPROACH TO ADDRESSING THESE 

381
00:17:34,360 --> 00:17:34,600
PROBLEMS.

382
00:17:34,600 --> 00:17:37,600
THE OVERARCHING GOAL OF MY 

383
00:17:37,600 --> 00:17:41,200
PROGRAM OF RESEARCH IS TO REDUCE

384
00:17:41,200 --> 00:17:42,320
HEALTH DISPARITIES WITH CARDIAC 

385
00:17:42,320 --> 00:17:45,120
RELATED ILLNESSES.

386
00:17:45,120 --> 00:17:47,480
OUR FOCUS ON AFRICAN AMERICAN 

387
00:17:47,480 --> 00:17:49,960
WOMEN WITH HYPERTENSION AND 

388
00:17:49,960 --> 00:17:50,640
ENHANCING BLOOD PRESSURE 

389
00:17:50,640 --> 00:17:50,880
CONTROL.

390
00:17:50,880 --> 00:17:53,080
THERE ARE TWO PILLARS THAT 

391
00:17:53,080 --> 00:17:54,920
SUPPORT OUR PROGRAM OF RESEARCH.

392
00:17:54,920 --> 00:18:00,120
I LOOK AT HOW WOMEN SEEK, SHARE,

393
00:18:00,120 --> 00:18:03,560
AND USE HEALTH DECISIONS ON HOW 

394
00:18:03,560 --> 00:18:04,560
THEY MANAGE BLOOD PRESSURES.

395
00:18:04,560 --> 00:18:06,240
I DETERMINE WHAT WE CAN LEARN IN

396
00:18:06,240 --> 00:18:11,320
THE SCANNER AND HOW WE CAN USE 

397
00:18:11,320 --> 00:18:14,880
THAT INFORMATION TO SHAPE 

398
00:18:14,880 --> 00:18:15,880
BEHAVIOR OUTSIDE.

399
00:18:15,880 --> 00:18:18,040
SO THE FIRST STUDY THAT I 

400
00:18:18,040 --> 00:18:20,240
CONDUCTED, WHAT WE DID, WE DID 

401
00:18:20,240 --> 00:18:24,760
SOME SURVEY WORK AS WELL AS 

402
00:18:24,760 --> 00:18:25,840
CONDUCTING SCANS.

403
00:18:25,840 --> 00:18:29,520
SO WE CREATED A PROTOCOL VIDEO 

404
00:18:29,520 --> 00:18:31,880
TO LOOK AT CHANGES IN BRAIN 

405
00:18:31,880 --> 00:18:32,960
ACTIVITY AND BLOOD FLOW WHEN 

406
00:18:32,960 --> 00:18:34,360
THEY WERE LOOKING AT THIS 

407
00:18:34,360 --> 00:18:35,160
PARTICULAR VIDEO.

408
00:18:35,160 --> 00:18:37,160
SO THE FIRST THING THAT I FOUND 

409
00:18:37,160 --> 00:18:38,120
IS THAT HEALTH INFORMATION 

410
00:18:38,120 --> 00:18:40,160
SHARING WHICH IS ONE OF THE 

411
00:18:40,160 --> 00:18:41,840
BEHAVIORS THAT I STUDY IS 

412
00:18:41,840 --> 00:18:43,880
ASSOCIATED WITH ACTIVATION IN 

413
00:18:43,880 --> 00:18:46,720
THE VENTRAL MEDIUM PREFRONTAL 

414
00:18:46,720 --> 00:18:48,480
CORTEX WHICH WE WERE LOOKING AT 

415
00:18:48,480 --> 00:18:50,920
SOCIAL, EMOTIONAL, AND 

416
00:18:50,920 --> 00:18:52,200
EMPATHETIC PRACTICING.

417
00:18:52,200 --> 00:18:54,520
IN THIS PARTICULAR STUDY, THERE 

418
00:18:54,520 --> 00:18:56,640
WERE 19 AFRICAN AMERICAN ADULTS 

419
00:18:56,640 --> 00:18:58,680
WITH PRE-HYPERTENSION, SO 

420
00:18:58,680 --> 00:19:00,240
ELEVATED BLOOD PRESSURE, BUT NOT

421
00:19:00,240 --> 00:19:01,680
NECESSARILY DIAGNOSED WITH 

422
00:19:01,680 --> 00:19:02,720
HYPERTENSION AT THAT TIME.

423
00:19:02,720 --> 00:19:05,920
AND SO THIS REALLY CREATED A 

424
00:19:05,920 --> 00:19:06,560
FOUNDATION AND INTEREST FOR ME 

425
00:19:06,560 --> 00:19:08,720
OF WHAT MORE CAN WE LEARN 

426
00:19:08,720 --> 00:19:12,560
THROUGH THE NEUROIMAGING STUDIES

427
00:19:12,560 --> 00:19:13,200
ABOUT AFRICAN AMERICAN ADULTS 

428
00:19:13,200 --> 00:19:14,680
WITH HYPERTENSION THAT WOULD 

429
00:19:14,680 --> 00:19:16,440
HELP US TO ENHANCE THEIR SUB 

430
00:19:16,440 --> 00:19:20,600
MANAGEMENT ACTIVITIES.

431
00:19:20,600 --> 00:19:22,400
NEXT UP WAS TO CONDUCT A 

432
00:19:22,400 --> 00:19:23,960
SYSTEMATIC REVIEW.

433
00:19:23,960 --> 00:19:26,360
AND SO THIS WAS INITIALLY A 

434
00:19:26,360 --> 00:19:27,920
LITERATURE SEARCH, THE SEARCH 

435
00:19:27,920 --> 00:19:29,480
FOR NEUROIMAGING EVIDENCE 

436
00:19:29,480 --> 00:19:31,240
SPECIFIC TO AFRICAN AMERICAN 

437
00:19:31,240 --> 00:19:33,080
WOMEN WITH HYPERTENSION.

438
00:19:33,080 --> 00:19:35,720
SIMILAR TO OUR FIRST SPEAKER, 

439
00:19:35,720 --> 00:19:40,000
DR. DOTSON, I DID NOT FIND -- I 

440
00:19:40,000 --> 00:19:41,200
FOUND ONE STUDY THAT WAS RELATED

441
00:19:41,200 --> 00:19:42,960
AND SO NOT REALLY A HUGE 

442
00:19:42,960 --> 00:19:44,760
CONTRIBUTION AND SO I HAD TO 

443
00:19:44,760 --> 00:19:46,280
CHANGE THE CONSTRAINTS OF MY 

444
00:19:46,280 --> 00:19:48,360
STUDY AND BROADEN THE SEARCH TO 

445
00:19:48,360 --> 00:19:49,720
SEE WHAT OTHER EVIDENCE WAS OUT 

446
00:19:49,720 --> 00:19:50,080
THERE.

447
00:19:50,080 --> 00:19:53,440
AND SO WHAT I DECIDED TO DO WAS 

448
00:19:53,440 --> 00:19:57,440
TO LOOK AT INDIVIDUALS THAT HAD 

449
00:19:57,440 --> 00:19:59,840
CARDIAC RELATED ILLNESS AND WHAT

450
00:19:59,840 --> 00:20:01,040
STUDIES HAD BEEN CONDUCTED.

451
00:20:01,040 --> 00:20:03,360
SO WHEN I EXAMINED THE 

452
00:20:03,360 --> 00:20:04,480
DEMOGRAPHICS OF PARTICIPANTS IN 

453
00:20:04,480 --> 00:20:08,240
THESE STUDIES, I FOUND THAT SOME

454
00:20:08,240 --> 00:20:10,400
DID NOT EVEN REPORT RACE, 

455
00:20:10,400 --> 00:20:12,720
ETHNICITY, SOME DID NOT REPORT 

456
00:20:12,720 --> 00:20:13,160
GENDER.

457
00:20:13,160 --> 00:20:15,960
THE DEMOGRAPHICS WERE DEFINITELY

458
00:20:15,960 --> 00:20:18,760
LACKING AND SO FOR A SCIENTIST 

459
00:20:18,760 --> 00:20:20,960
LIKE MYSELF, THERE REALLY WASN'T

460
00:20:20,960 --> 00:20:22,840
MUCH EVIDENCE TO GO OFF OF AND 

461
00:20:22,840 --> 00:20:26,680
IT WAS VERY DISHEARTENING.

462
00:20:26,680 --> 00:20:30,600
SO ONE OF THE THINGS I'VE TALKED

463
00:20:30,600 --> 00:20:31,200
ABOUT IN THE DISCUSSION IS A 

464
00:20:31,200 --> 00:20:33,120
STRINGENT MORE DETAILED 

465
00:20:33,120 --> 00:20:36,560
COLLECTION FOR PARTICIPANTS 

466
00:20:36,560 --> 00:20:41,520
ENROLLED IN THE STUDIES.

467
00:20:41,520 --> 00:20:44,360
SO IN THE MOST RECENT STUDY I 

468
00:20:44,360 --> 00:20:46,400
CONDUCTED WAS A FACEBOOK STUDY 

469
00:20:46,400 --> 00:20:50,680
THAT LINKED TO A SURVEY AND SO I

470
00:20:50,680 --> 00:20:53,440
WAS VERY INTERESTED IN 

471
00:20:53,440 --> 00:20:55,080
DETERMINING IF METRO DETROIT 

472
00:20:55,080 --> 00:20:56,400
WOMEN WERE INTERESTED IN 

473
00:20:56,400 --> 00:20:58,400
PARTICIPATED IN RESEARCH.

474
00:20:58,400 --> 00:21:02,640
AND WHAT MIGHT BE SOME OF THE 

475
00:21:02,640 --> 00:21:03,520
FACTORS THAT HINDER OR 

476
00:21:03,520 --> 00:21:05,000
FACILITATED PARTICIPATION.

477
00:21:05,000 --> 00:21:08,680
SO THIS IS A STUDY OF 257 

478
00:21:08,680 --> 00:21:10,680
AFRICAN AMERICAN WOMEN WITH 

479
00:21:10,680 --> 00:21:11,560
HYPERTENSION.

480
00:21:11,560 --> 00:21:13,880
THE SOLE PREDICTOR PREDICTED 

481
00:21:13,880 --> 00:21:17,160
THAT FUTURE PARTS IN STUDIES WAS

482
00:21:17,160 --> 00:21:18,720
IF THEY HAD SOMEBODY TO 

483
00:21:18,720 --> 00:21:20,520
ACCOMPANY THEM TO THE LAB WHICH 

484
00:21:20,520 --> 00:21:22,240
IS SOMETHING I HAD NOT THOUGHT 

485
00:21:22,240 --> 00:21:24,520
OF IN PREPARING STUDIES IN 

486
00:21:24,520 --> 00:21:27,400
TRYING TO FACILITATE 

487
00:21:27,400 --> 00:21:28,520
PARTICIPATION.

488
00:21:28,520 --> 00:21:33,000
SOME PARTICIPANTS WERE NERVOUS 

489
00:21:33,000 --> 00:21:37,120
ABOUT THE SMALL SPACE OF THE 

490
00:21:37,120 --> 00:21:39,040
FMRI, SO WE'RE GOING TO TALK 

491
00:21:39,040 --> 00:21:40,720
ABOUT HOW IT'S IMPORTANT IN THIS

492
00:21:40,720 --> 00:21:45,360
COMMUNITY.

493
00:21:45,360 --> 00:21:51,800
19% SAID THEY WERE CLAUSER 

494
00:21:51,800 --> 00:21:53,440
PHOBIC AND CONCERNED ABOUT THE 

495
00:21:53,440 --> 00:22:04,520
LENGTH OF TIME THWERE IN IT.

496
00:22:11,840 --> 00:22:16,200
STUDIES ARE NEEDED THAT FOCUS 

497
00:22:16,200 --> 00:22:16,840
SPECIFICALLY ON THESE GROUPS AT 

498
00:22:16,840 --> 00:22:17,440
THIS TIME.

499
00:22:17,440 --> 00:22:20,600
AND ALSO IN FUTURE STUDIES, WE 

500
00:22:20,600 --> 00:22:23,800
NEED TO CONSIDER DIVERSITY WITH 

501
00:22:23,800 --> 00:22:24,480
THE PARTICULAR SAMPLING METHODS 

502
00:22:24,480 --> 00:22:25,880
AND THINKING ABOUT HOW WE'RE 

503
00:22:25,880 --> 00:22:29,360
GOING TO CAPTURE A DIVERSE 

504
00:22:29,360 --> 00:22:30,680
SAMPLE SXL HOW THESE FINDINGS 

505
00:22:30,680 --> 00:22:31,560
WILL REFLECT THE ENTIRE 

506
00:22:31,560 --> 00:22:31,960
POPULATION.

507
00:22:31,960 --> 00:22:34,080
I ALSO WANT TO HIGHLIGHT THAT 

508
00:22:34,080 --> 00:22:35,720
AFRICAN AMERICAN WOMEN ARE 

509
00:22:35,720 --> 00:22:37,120
ELIGIBLE AND INTERESTED IN 

510
00:22:37,120 --> 00:22:39,800
PARTICIPATING IN FMRI RESEARCH.

511
00:22:39,800 --> 00:22:42,000
AND ONE OF THE THINGS SAYS WOMEN

512
00:22:42,000 --> 00:22:44,560
WON'T PARTICIPATE, WOMEN 

513
00:22:44,560 --> 00:22:48,440
ACTUALLY ARE FROM MY GROUP OF 

514
00:22:48,440 --> 00:22:50,360
INTERESTED IN PARTICIPATING IN 

515
00:22:50,360 --> 00:22:51,680
NEUROIMAGING STUDIES.

516
00:22:51,680 --> 00:22:53,480
SO THANK YOU SO MUCH FOR YOUR 

517
00:22:53,480 --> 00:22:53,840
TIME.

518
00:22:53,840 --> 00:22:56,080
I'M EXCITED TO TALK WITH YOU AT 

519
00:22:56,080 --> 00:22:58,400
THE END OF THIS PANEL AND NOW I 

520
00:22:58,400 --> 00:23:03,400
WILL PASS IT ON TO DR. SHEN.

521
00:23:03,400 --> 00:23:05,160
>> THANK YOU SO MUCH.

522
00:23:05,160 --> 00:23:08,400
THAT WAS GREAT.

523
00:23:08,400 --> 00:23:15,000
AND I REALLY AM SO EXCITED THIS 

524
00:23:15,000 --> 00:23:17,840
PANEL IS HAPPENING.

525
00:23:17,840 --> 00:23:19,320
I'M GOING TO TALK ABOUT SOME 

526
00:23:19,320 --> 00:23:23,120
POTENTIAL DOWN SIDES THAT WE CAN

527
00:23:23,120 --> 00:23:25,480
ADDRESS NOW ASSOCIATED WITH 

528
00:23:25,480 --> 00:23:28,000
EXPANDING AND HAVING A MORE 

529
00:23:28,000 --> 00:23:30,920
DIVERSE AND INCLUSIVE SET OF 

530
00:23:30,920 --> 00:23:31,920
PARTICIPANTS IN HUMAN 

531
00:23:31,920 --> 00:23:32,600
NEUROIMAGING RESEARCH.

532
00:23:32,600 --> 00:23:34,680
AND I WANT TO SAY AT THE OUTSET 

533
00:23:34,680 --> 00:23:36,880
I DO THIS NOT TO THROW COLD 

534
00:23:36,880 --> 00:23:38,960
WATER ON ANYTHING, BUT TO 

535
00:23:38,960 --> 00:23:40,760
HOPEFULLY BE PART OF THIS WHOLE 

536
00:23:40,760 --> 00:23:40,960
PANEL.

537
00:23:40,960 --> 00:23:43,160
I THINK IT'S PART OF AN EFFORT 

538
00:23:43,160 --> 00:23:46,480
TO GET AHEAD OF ISSUES THAT A 

539
00:23:46,480 --> 00:23:48,160
HISTORY TELLS US WILL LIKELY 

540
00:23:48,160 --> 00:23:49,560
EMERGE AND WE CAN HANDLE.

541
00:23:49,560 --> 00:23:55,760
I WANT TO COVER -- JUST IN MY 

542
00:23:55,760 --> 00:23:56,280
NOTES DISCLOSURES.

543
00:23:56,280 --> 00:23:59,840
I WANT TO COVER JUST THREE 

544
00:23:59,840 --> 00:24:01,280
THINGS TODAY AND MAKE JUST THREE

545
00:24:01,280 --> 00:24:01,840
POINTS.

546
00:24:01,840 --> 00:24:05,080
THE FIRST IS TO CONFIRM I THINK 

547
00:24:05,080 --> 00:24:08,680
WE'RE HEADING INTO A NEW ERA OF 

548
00:24:08,680 --> 00:24:09,800
NEUROIMAGING WHERE HOPEFULLY 

549
00:24:09,800 --> 00:24:11,440
WE'LL BEGIN TO ADDRESS THE 

550
00:24:11,440 --> 00:24:15,760
ISSUES THAT DR. DOTSON AND 

551
00:24:15,760 --> 00:24:18,160
DR. JONES RAISED AND WILL CHANGE

552
00:24:18,160 --> 00:24:20,280
DEMOGRAPHICS.

553
00:24:20,280 --> 00:24:21,000
BUT THEN I WANT TO THINK ABOUT 

554
00:24:21,000 --> 00:24:22,840
LOOKING BACK AND LOOKING AT 

555
00:24:22,840 --> 00:24:25,160
HISTORY IN PARTICULAR, AND 

556
00:24:25,160 --> 00:24:26,440
PARTICULARLY SCIENCE IN 

557
00:24:26,440 --> 00:24:28,480
NEUROSCIENCE THAT SUGGESTS TO ME

558
00:24:28,480 --> 00:24:29,960
WE SHOULD BE ANTICIPATING SOME 

559
00:24:29,960 --> 00:24:31,520
PROBLEMATIC USES AND 

560
00:24:31,520 --> 00:24:33,440
IMPLICATIONS OF THIS DATA.

561
00:24:33,440 --> 00:24:35,480
EVEN IF WE IN THIS COMMUNITY SAY

562
00:24:35,480 --> 00:24:39,280
THE HUNTERS SO PEOPLE LOGGED ON 

563
00:24:39,280 --> 00:24:41,720
HERE AREN'T GOING TO PURSUE 

564
00:24:41,720 --> 00:24:42,080
THESE THINGS.

565
00:24:42,080 --> 00:24:43,160
OTHERS MIGHT AND WE NEED TO 

566
00:24:43,160 --> 00:24:43,880
PREPARE FOR THAT.

567
00:24:43,880 --> 00:24:46,160
AND FINALLY I WANT TO THINK 

568
00:24:46,160 --> 00:24:48,760
ABOUT WHAT SOME PROACTIVE STEPS 

569
00:24:48,760 --> 00:24:49,680
MIGHT BE AND WE'RE GOING TO 

570
00:24:49,680 --> 00:24:55,800
THINK ABOUT WHAT WE CAN LEARN 

571
00:24:55,800 --> 00:25:01,840
FROM GENTLEMENN'TIC GENOMICS.

572
00:25:01,840 --> 00:25:03,680
SO NEW ERA.

573
00:25:03,680 --> 00:25:06,760
SUSAN MENTIONED THAT ALONG WITH 

574
00:25:06,760 --> 00:25:11,240
FRANCIS LORENZ AND JONATHAN, WE 

575
00:25:11,240 --> 00:25:13,000
ARE EXPLORING THE USE OF HIGHLY 

576
00:25:13,000 --> 00:25:13,840
PORTABLE IMAGING.

577
00:25:13,840 --> 00:25:16,480
SHOUT OUT TO ALL OF OUR AMAZING 

578
00:25:16,480 --> 00:25:20,280
WORKING GROUP AND WE THINK I 

579
00:25:20,280 --> 00:25:23,080
LIKE TO THINK ON BEHALF OF THE 

580
00:25:23,080 --> 00:25:24,800
WORKING GROUP THESE NEW 

581
00:25:24,800 --> 00:25:25,920
TECHNOLOGIES ARE GOING TO CHANGE

582
00:25:25,920 --> 00:25:27,520
THE FACE OF NEUROIMAGING.

583
00:25:27,520 --> 00:25:29,640
THE BRAIN SCANNERS COMING OUT OF

584
00:25:29,640 --> 00:25:33,360
THE HOSPITAL AND THE FACILITY 

585
00:25:33,360 --> 00:25:38,280
AND INTO THE FIELD ALLOWING YOU 

586
00:25:38,280 --> 00:25:40,000
TO SCAN ANYWHERE.

587
00:25:40,000 --> 00:25:41,440
PARTICIPANTS ARE CONCERNEDED, 

588
00:25:41,440 --> 00:25:43,680
HOW LONG DOES IT TAKE.

589
00:25:43,680 --> 00:25:47,800
TALKING ABOUT BEING 

590
00:25:47,800 --> 00:25:48,160
CLAUSTROPHOBIC.

591
00:25:48,160 --> 00:25:57,040
IT WILL ALSO DEMOCRATIZE.

592
00:25:57,040 --> 00:25:59,600
AND THIS COULD ALLOW FOR THE 

593
00:25:59,600 --> 00:26:01,120
SORT OFFICER POPULATION 

594
00:26:01,120 --> 00:26:02,600
NEUROSCIENCE AND BRAIN HEALTH 

595
00:26:02,600 --> 00:26:04,240
SCREENING THAT THEN WAS ALLUDED 

596
00:26:04,240 --> 00:26:04,640
TO ALREADY.

597
00:26:04,640 --> 00:26:06,720
SO THERE ARE A LOT OF THINGS 

598
00:26:06,720 --> 00:26:08,440
COMING THAT WOULD SUGGEST A NEW 

599
00:26:08,440 --> 00:26:09,480
ERA OF IMAGING.

600
00:26:09,480 --> 00:26:11,440
IF YOU WANT TO KNOW MORE, WE 

601
00:26:11,440 --> 00:26:15,120
TRACK ALL OF THOSE ARE AND ARE 

602
00:26:15,120 --> 00:26:15,400
EXCITING.

603
00:26:15,400 --> 00:26:15,760
ALL RIGHT.

604
00:26:15,760 --> 00:26:17,120
SO I'M REALLY EXCITED ABOUT 

605
00:26:17,120 --> 00:26:19,120
THAT, BUT I ALSO HAVE REAL 

606
00:26:19,120 --> 00:26:20,680
CONCERNS AND THESE CONCERNS 

607
00:26:20,680 --> 00:26:23,400
EMERGE OUT OF A LOOK-BACK AT 

608
00:26:23,400 --> 00:26:24,760
WHERE WE'VE COME FROM.

609
00:26:24,760 --> 00:26:26,960
IT'S A WONDERFUL PIECE IF YOU 

610
00:26:26,960 --> 00:26:29,040
DON'T KNOW IT EXPLORING THIS 

611
00:26:29,040 --> 00:26:29,280
HISTORY.

612
00:26:29,280 --> 00:26:30,760
THERE ARE OTHERS AS WELL, BUT 

613
00:26:30,760 --> 00:26:34,040
THIS IS A GREAT ONE AND I WANT 

614
00:26:34,040 --> 00:26:34,640
TO FLAG JUST THE END OF THIS 

615
00:26:34,640 --> 00:26:34,840
QUOTE.

616
00:26:34,840 --> 00:26:36,800
I THINK IT'S WORTH A READING 

617
00:26:36,800 --> 00:26:41,120
THAT SHIRLEY SAYS DR. EVERHART 

618
00:26:41,120 --> 00:26:43,880
IT WAS AT THE SITE OF THE BRAIN 

619
00:26:43,880 --> 00:26:45,440
THAT DIFFERENCES BETWEEN WHITES 

620
00:26:45,440 --> 00:26:48,040
AND BLACKS WERE MAPPED OUT 

621
00:26:48,040 --> 00:26:48,720
INITIALLY.

622
00:26:48,720 --> 00:26:50,720
EVERHART OFFERS A POSITIVE VIEW 

623
00:26:50,720 --> 00:26:52,120
OF OUR FUTURE THAT PERHAPS 

624
00:26:52,120 --> 00:26:54,000
NEUROSCIENCE IN ITS NEW METHODS 

625
00:26:54,000 --> 00:26:56,720
CAN ADDRESS THESE INEQUITIES, 

626
00:26:56,720 --> 00:26:59,240
BUT WE CAN'T IGNORE THAT THOSE 

627
00:26:59,240 --> 00:27:01,520
PREVIOUSLY QUOTE UNQUOTE DIVERSE

628
00:27:01,520 --> 00:27:04,200
SAMPLES INCLUDING BLACK AND 

629
00:27:04,200 --> 00:27:06,760
WHITE BRAINS LEAD TO REALLY 

630
00:27:06,760 --> 00:27:07,800
PROBLEMATIC SCIENCE AND SOCIAL 

631
00:27:07,800 --> 00:27:09,440
INCLUSIONS AND THEY REACHED THE 

632
00:27:09,440 --> 00:27:10,560
PUBLIC VIEW.

633
00:27:10,560 --> 00:27:13,440
SO I OFFER YOU ONE EXAMPLE, THE 

634
00:27:13,440 --> 00:27:15,760
PHILADELPHIA INQUIRE, THERE'S 

635
00:27:15,760 --> 00:27:16,960
THE HEADLINE, BEHIND THAT, THE 

636
00:27:16,960 --> 00:27:20,480
BEGINNING OF THE 20TH CENTURY, 

637
00:27:20,480 --> 00:27:23,720
THE SO-CALLED WORK SHOWING THE 

638
00:27:23,720 --> 00:27:24,920
DIFFERENCE BETWEEN BLACK AND 

639
00:27:24,920 --> 00:27:26,000
WHITE BRAINS.

640
00:27:26,000 --> 00:27:29,120
THE SYSTEM IS REALLY 

641
00:27:29,120 --> 00:27:29,400
PROBLEMATIC.

642
00:27:29,400 --> 00:27:30,640
I MENTION IT BECAUSE IT HAS 

643
00:27:30,640 --> 00:27:33,160
RAMIFICATIONS EVEN TO TODAY.

644
00:27:33,160 --> 00:27:35,160
OVER 100 YEARS LATER, RACHEL 

645
00:27:35,160 --> 00:27:36,960
RICK IS WRITING ABOUT HER 

646
00:27:36,960 --> 00:27:38,840
EXPERIENCE GROWING UP IN CANADA 

647
00:27:38,840 --> 00:27:41,320
AND WROTE MY WHITE TEACHER 

648
00:27:41,320 --> 00:27:43,920
ATTEMPTED TO HOLD ME BACK 

649
00:27:43,920 --> 00:27:46,360
EXPLAINING TO MY MOTHER THAT MY 

650
00:27:46,360 --> 00:27:48,240
BLACK BRAIN WASN'T AS LARGE AS 

651
00:27:48,240 --> 00:27:50,200
MY WHITE CLASSMATES.

652
00:27:50,200 --> 00:27:51,880
THIS STUFF STILL RESINATES AND 

653
00:27:51,880 --> 00:27:54,360
WE NEED TO BE AWARE OF IT.

654
00:27:54,360 --> 00:27:56,840
IT'S NOT HARD TO IMAGINE A 

655
00:27:56,840 --> 00:28:00,440
NIGHTMARE SCENARIO WHERE SOMEONE

656
00:28:00,440 --> 00:28:01,400
OUTSIDE OF THIS COMMUNITY BEGINS

657
00:28:01,400 --> 00:28:08,040
TO LOOK FOR DIFFERENCES THAT 

658
00:28:08,040 --> 00:28:12,160
AREN'T THERE OR THIS 

659
00:28:12,160 --> 00:28:12,640
DISINFORMATION CAMPAIGN.

660
00:28:12,640 --> 00:28:13,280
I THINK WE NEED TO INTERROGATE 

661
00:28:13,280 --> 00:28:16,240
WHAT MEAN BY DIVERSITY, HOW IS 

662
00:28:16,240 --> 00:28:18,120
THAT DIFFERENT AND WHEN AND HOW 

663
00:28:18,120 --> 00:28:20,640
DOES IN RACE AND THESE OTHER 

664
00:28:20,640 --> 00:28:21,400
DEMOGRAPHICS MATTER?

665
00:28:21,400 --> 00:28:24,240
RIGHT NOW, IN THE PARALLEL 

666
00:28:24,240 --> 00:28:25,440
DISCUSSION THERE'S THE 

667
00:28:25,440 --> 00:28:28,880
DISCUSSION OF THE NEW BRAIN 

668
00:28:28,880 --> 00:28:29,280
CELL.

669
00:28:29,280 --> 00:28:33,440
AND ONE OF THE NEW CHALLENGES 

670
00:28:33,440 --> 00:28:41,440
WILL BE TO USE POST MEDICAL 

671
00:28:41,440 --> 00:28:44,400
REPORT POST MORTEM HEALTHY 

672
00:28:44,400 --> 00:28:44,600
ADULT.

673
00:28:44,600 --> 00:28:47,960
WHICH DEMOGRAPHICS WOULD MATTER?

674
00:28:47,960 --> 00:28:48,400
THESE ARE IMPORTANT 

675
00:28:48,400 --> 00:28:49,680
CONVERSATIONS TO HAVE.

676
00:28:49,680 --> 00:28:51,120
IT'S ALSO REALLY IMPORTANT I 

677
00:28:51,120 --> 00:28:55,640
THINK TO THINK ABOUT SECONDARY 

678
00:28:55,640 --> 00:28:56,080
ANALYSES.

679
00:28:56,080 --> 00:29:00,200
SO UNDER NEW NIH BRAIN SHARING 

680
00:29:00,200 --> 00:29:01,920
POLICIES, THE DATA THAT'S 

681
00:29:01,920 --> 00:29:04,120
COLLECTED WILL BE PUBLICLY 

682
00:29:04,120 --> 00:29:05,840
AVAILABLE.

683
00:29:05,840 --> 00:29:07,600
THAT MEANS THAT SOMEONE ELSE CAN

684
00:29:07,600 --> 00:29:13,960
COME ALONG AND TAKE THESE MORE 

685
00:29:13,960 --> 00:29:16,160
DIVERSE DATA SETS AND THEY CAN 

686
00:29:16,160 --> 00:29:18,680
PUBLISH THAT AND IN SOCIAL MEDIA

687
00:29:18,680 --> 00:29:21,360
IT CAN END UP ANYWHERE AND THESE

688
00:29:21,360 --> 00:29:23,360
SECONDARY ANALYSES, I THINK 

689
00:29:23,360 --> 00:29:24,680
THERE'S JUST NO GUIDANCE AND 

690
00:29:24,680 --> 00:29:25,920
HERE'S AN EXAMPLE.

691
00:29:25,920 --> 00:29:36,480
HERE'S A STUDY THAT WAS AND NOT 

692
00:29:46,680 --> 00:29:48,280
CAREFULLY MEASURING THE VARIABLE

693
00:29:48,280 --> 00:29:49,120
THIS IS ABOUT.

694
00:29:49,120 --> 00:29:55,440
SO I THINK WE NEED TO BE CAREFUL

695
00:29:55,440 --> 00:29:57,840
AND SCIENTIFIC ABOUT THE WAY WE 

696
00:29:57,840 --> 00:30:00,440
MEASURE RACE, HISTORY, AN 

697
00:30:00,440 --> 00:30:00,720
SEGSTREE.

698
00:30:00,720 --> 00:30:03,520
AND WE'RE GOING TO HEAR ABOUT 

699
00:30:03,520 --> 00:30:05,440
THAT FROM DR. CHO.

700
00:30:05,440 --> 00:30:09,000
SO I THINK WE NEED TO BE REALLY 

701
00:30:09,000 --> 00:30:09,240
CAREFUL.

702
00:30:09,240 --> 00:30:14,680
THERE IS SOME GUIDANCE EMERGING.

703
00:30:14,680 --> 00:30:18,760
I PUT IT IN THE SLIDES WHERE 

704
00:30:18,760 --> 00:30:23,400
THEY TALK ABOUT SECONDARY DATA 

705
00:30:23,400 --> 00:30:23,920
ANALYSIS.

706
00:30:23,920 --> 00:30:29,160
ONE, I REALLY WANT TO ECHO WHAT 

707
00:30:29,160 --> 00:30:32,240
DR. DOTSON AND DR. JONES SAID 

708
00:30:32,240 --> 00:30:34,400
ABOUT DEMOGRAPHICS AND THINKING 

709
00:30:34,400 --> 00:30:36,040
CAREFULLY ABOUT THAT.

710
00:30:36,040 --> 00:30:38,600
OUR LAB DID THIS A COUPLE YEARS 

711
00:30:38,600 --> 00:30:38,800
BACK.

712
00:30:38,800 --> 00:30:41,440
IT'S JUST NOT DONE AND BECAUSE 

713
00:30:41,440 --> 00:30:47,000
IT'S NOT DONE, THIS IS NEW 

714
00:30:47,000 --> 00:30:48,040
TERRITORY.

715
00:30:48,040 --> 00:30:50,920
SO I'M GLAD THAT CONVERSATION'S 

716
00:30:50,920 --> 00:30:56,160
GOING, SECOND, THIS ISN'T THE 

717
00:30:56,160 --> 00:31:00,760
FIRST BODY OF RESEARCH, BUT WE 

718
00:31:00,760 --> 00:31:06,400
CAN LEARN A LOT FROM OTHER 

719
00:31:06,400 --> 00:31:07,000
GENTLE

720
00:31:07,000 --> 00:31:07,240
GENOMICS.

721
00:31:07,240 --> 00:31:12,680
FINALLY, WE NEED TO THINK MORE 

722
00:31:12,680 --> 00:31:15,680
CAREFULLY ABOUT ETH DISMISS TEA 

723
00:31:15,680 --> 00:31:18,760
OR ANYTHING IN BETWEEN IS GOING 

724
00:31:18,760 --> 00:31:21,040
TO IMPROVE THE DIVERSITY OF 

725
00:31:21,040 --> 00:31:23,960
SAMPLES IS GOING TO HEAR GREAT 

726
00:31:23,960 --> 00:31:25,400
SUGGESTIONS AND WE'RE GOING TO 

727
00:31:25,400 --> 00:31:29,800
HEAR MORE FROM DR. JACKSON AND 

728
00:31:29,800 --> 00:31:30,880
THIS IS GOING TO BE NEW TRAINING

729
00:31:30,880 --> 00:31:32,840
AT THE PROFESSOR LEVEL AS WELL.

730
00:31:32,840 --> 00:31:35,120
IT'S ONE THING TO ASPIRE TO DO 

731
00:31:35,120 --> 00:31:37,280
IT, IT'S ANOTHER TO ACTUALLY DO 

732
00:31:37,280 --> 00:31:37,440
IT.

733
00:31:37,440 --> 00:31:38,040
SO STAY TUNED.

734
00:31:38,040 --> 00:31:40,720
AND, WITH THAT, I WILL TURN IT 

735
00:31:40,720 --> 00:31:44,600
OVER TO DR. CHO.

736
00:31:44,600 --> 00:31:47,600
>> THANKS, FRANCIS.

737
00:31:47,600 --> 00:31:48,280
AND THANK YOU, SUSAN, BOTH OF 

738
00:31:48,280 --> 00:31:51,640
YOU FOR INVITING ME TO THIS 

739
00:31:51,640 --> 00:31:51,920
SYMPOSIUM.

740
00:31:51,920 --> 00:31:55,120
SO I'D LIKE TO SHARE SOME OF THE

741
00:31:55,120 --> 00:31:58,520
LESSONS I THINK OR I HOPE THE 

742
00:31:58,520 --> 00:32:01,560
FIELD OF GENOMICS HAS LEARNED 

743
00:32:01,560 --> 00:32:03,080
ABOUT IN RESEARCH.

744
00:32:03,080 --> 00:32:05,000
AND THIS FIELD AS YOU ALL KNOW 

745
00:32:05,000 --> 00:32:06,760
HAS BEEN SORT OF LAUNCHED INTO 

746
00:32:06,760 --> 00:32:08,520
ITS CURRENT FORM BY THE 

747
00:32:08,520 --> 00:32:11,640
SEQUENCING OF THE HUMAN GENOME 

748
00:32:11,640 --> 00:32:12,120
WHICH REPRESENTED THE 

749
00:32:12,120 --> 00:32:13,760
IDENTIFICATION OF THE DNA THAT 

750
00:32:13,760 --> 00:32:14,960
ALL HUMANS SHARE.

751
00:32:14,960 --> 00:32:18,040
BUT GENOMICS QUICKLY TURNED INTO

752
00:32:18,040 --> 00:32:20,320
THE STUDY OF DIFFERENCE AND 

753
00:32:20,320 --> 00:32:22,240
VARIATIONS BETWEEN POPULATIONS.

754
00:32:22,240 --> 00:32:23,520
NEXT SLIDE, PLEASE.

755
00:32:23,520 --> 00:32:26,160
HOWEVER, GENOMICS HAS A 

756
00:32:26,160 --> 00:32:27,600
DIVERSITY PROBLEM LIKE OTHER 

757
00:32:27,600 --> 00:32:30,520
TYPES OF BIO MEDICAL RESEARCH.

758
00:32:30,520 --> 00:32:34,400
FOR EXAMPLE, ALICE HOPEJOY AND 

759
00:32:34,400 --> 00:32:38,760
MARIA FULLERTON FOUND IN THE 

760
00:32:38,760 --> 00:32:41,320
WIDELY USED STUDY CATALOG, 

761
00:32:41,320 --> 00:32:43,840
THERE'S STILL A PREDOMINANCE OF 

762
00:32:43,840 --> 00:32:46,040
SAMPLES OF EUROPEAN ORIGIN WHICH

763
00:32:46,040 --> 00:32:48,280
IS NOT REPRESENTED IN ALL GLOBAL

764
00:32:48,280 --> 00:32:49,840
POPULATIONS OR EVEN THE U.S. 

765
00:32:49,840 --> 00:32:51,760
POPULATION AND THAT HAS NOT 

766
00:32:51,760 --> 00:32:52,360
CHANGED OVERTIME.

767
00:32:52,360 --> 00:32:55,320
AND YOU CAN SEE HERE ON THE 

768
00:32:55,320 --> 00:32:58,320
SLIDE, THE PIE CHARTS SHOW THE 

769
00:32:58,320 --> 00:33:00,440
PREDOMINANCE OF SAMPLES OF 

770
00:33:00,440 --> 00:33:02,920
EUROPEAN ORIGIN AT 2009 ON THE 

771
00:33:02,920 --> 00:33:04,920
LEFT AND 2016 ON THE RIGHT.

772
00:33:04,920 --> 00:33:10,480
NEXT SLIDE, PLEASE.

773
00:33:10,480 --> 00:33:11,840
GENOMICS ALSO NOW RECOGNIZES 

774
00:33:11,840 --> 00:33:14,080
THAT THE LACK OF DIVERSITY AND 

775
00:33:14,080 --> 00:33:16,600
RESEARCH SAMPLES WHICH YOU ALSO 

776
00:33:16,600 --> 00:33:18,920
HEARD FROM DR. DOTSON AND JONES,

777
00:33:18,920 --> 00:33:22,720
IN GENOMICS HAS REAL CLINICAL 

778
00:33:22,720 --> 00:33:25,200
IMPLICATIONS.

779
00:33:25,200 --> 00:33:26,280
FOR EXAMPLE, PATIENTS WHOSE 

780
00:33:26,280 --> 00:33:28,040
SAMPLES WERE IDENTIFIED AS 

781
00:33:28,040 --> 00:33:29,400
BLACK, NATIVE AMERICAN, HISPANIC

782
00:33:29,400 --> 00:33:31,120
OR MORE LIKELY THAN WHITE 

783
00:33:31,120 --> 00:33:34,720
PATIENTS TO HAVE A VARIANT OF 

784
00:33:34,720 --> 00:33:36,760
UNCERTAIN SIGNIFICANCE IN THEIR 

785
00:33:36,760 --> 00:33:39,320
GENOMES OR TO HAVE THEIR VARIANT

786
00:33:39,320 --> 00:33:41,280
MISS CLASSIFIED LEADING TO LACK 

787
00:33:41,280 --> 00:33:44,960
OF FOLLOWUP CARE OR 

788
00:33:44,960 --> 00:33:45,480
INAPPROPRIATE CARE.

789
00:33:45,480 --> 00:33:50,280
NEXT SLIDE, PLEASE.

790
00:33:50,280 --> 00:33:53,560
CURRENT PROJECTS AIMEDED AT 

791
00:33:53,560 --> 00:33:55,360
STUDYING HUMAN DIVERSITY SUCH AS

792
00:33:55,360 --> 00:33:59,600
THE ALL OF US REEFERS PROGRAM 

793
00:33:59,600 --> 00:34:02,160
HAVE DIVERSIFIED SAMPLES IN AN 

794
00:34:02,160 --> 00:34:04,040
ATTEMPT TO RECTIFY SOME OF THE 

795
00:34:04,040 --> 00:34:05,720
PROBLEMS WE'VE SEEN IN OTHER 

796
00:34:05,720 --> 00:34:06,120
RESEARCH.

797
00:34:06,120 --> 00:34:08,360
HOWEVER, ATTEMPTS TO STUDY 

798
00:34:08,360 --> 00:34:10,680
RESEARCH SUCH AS THE GENOME 

799
00:34:10,680 --> 00:34:12,280
UNIVERSITY PROJECT WERE MET WITH

800
00:34:12,280 --> 00:34:14,840
OPPOSITION AND EVEN CRIES OF 

801
00:34:14,840 --> 00:34:16,360
RACISM FROM INDIGENOUS PEOPLE 

802
00:34:16,360 --> 00:34:18,400
AND CONTINUE TO BE RIGHTLY 

803
00:34:18,400 --> 00:34:19,520
SKEPTICAL ABOUT HOW THEIR 

804
00:34:19,520 --> 00:34:20,960
PARTICIPATION IN THESE STUDIES 

805
00:34:20,960 --> 00:34:23,400
WOULD BENEFIT THEM.

806
00:34:23,400 --> 00:34:26,760
NEXT SLIDE, PLEASE.

807
00:34:26,760 --> 00:34:28,840
THE GENETIC STUDIES CARRIED OUT 

808
00:34:28,840 --> 00:34:31,360
BY SCIENTISTS AT THE UNIVERSITY 

809
00:34:31,360 --> 00:34:32,200
OF ARIZONA AND STANFORD 

810
00:34:32,200 --> 00:34:35,680
UNIVERSITY THAT LED TO A LAWSUIT

811
00:34:35,680 --> 00:34:38,280
BY THE HAVASU TRIBE CONTRIBUTED 

812
00:34:38,280 --> 00:34:42,200
TO EVEN MORE WITHDRAW OF 

813
00:34:42,200 --> 00:34:42,960
POPULATIONS.

814
00:34:42,960 --> 00:34:45,280
FOR EXAMPLE, THE NAVAJO NATION 

815
00:34:45,280 --> 00:34:47,360
PLACEDED A MORATORIUM IN 2002 

816
00:34:47,360 --> 00:34:49,360
AND THAT IS STILL ACTIVE TODAY.

817
00:34:49,360 --> 00:34:52,880
IN A RECENT ARTICLE CALLED 'THE 

818
00:34:52,880 --> 00:34:54,160
ILLUSION OF INCLUSION' PUBLISHED

819
00:34:54,160 --> 00:34:58,240
IN THE NEW ENGLAND JOURNAL OF 

820
00:34:58,240 --> 00:35:00,080
MEDICINE, THE BENEFIT OFFICER 

821
00:35:00,080 --> 00:35:00,800
RESEARCH FOR INDIGENOUS 

822
00:35:00,800 --> 00:35:02,320
COMMUNITIES AND THESE ARE 

823
00:35:02,320 --> 00:35:05,560
RECURRING UNRESOLVED ISSUES IN 

824
00:35:05,560 --> 00:35:07,400
GENETICS AND GENOMICS BUT THEY 

825
00:35:07,400 --> 00:35:09,720
ARE BY ALL MEANS NOT UNIQUE TO 

826
00:35:09,720 --> 00:35:13,560
THIS TYPE OF RESEARCH.

827
00:35:13,560 --> 00:35:17,000
NEXT SLIDE, PLEASE.

828
00:35:17,000 --> 00:35:17,880
ALTHOUGH MISTRUST OF RESEARCH 

829
00:35:17,880 --> 00:35:20,600
AND OF RESEARCHERS IS COMMONLY 

830
00:35:20,600 --> 00:35:26,520
CITED AS A BARRIER TO 

831
00:35:26,520 --> 00:35:27,000
PARTICIPATION OF 

832
00:35:27,000 --> 00:35:29,120
UNDERREPRESENTED GROUPS, THAT 

833
00:35:29,120 --> 00:35:30,520
ISN'T THE WHOLE STORY.

834
00:35:30,520 --> 00:35:32,480
THE STUDY ON WHY AFRICAN 

835
00:35:32,480 --> 00:35:36,800
AMERICANS SAY NO, THE AUTHORS 

836
00:35:36,800 --> 00:35:37,840
ALSO FOUND OTHER RELEVANT 

837
00:35:37,840 --> 00:35:42,280
CONSIDERATIONS SUCH AS REQUIRING

838
00:35:42,280 --> 00:35:43,320
UNCOMFORTABLE PROCEDURES.

839
00:35:43,320 --> 00:35:47,280
YEARS AND ACCESS TO OTHER 

840
00:35:47,280 --> 00:35:47,720
GENOMICS.

841
00:35:47,720 --> 00:35:50,440
ASPECTS OF THE RECRUITMENT 

842
00:35:50,440 --> 00:35:52,960
PROCESS THAT POSE SIGNIFICANT 

843
00:35:52,960 --> 00:35:56,200
BUT POTENTIALLY MODIFIED 

844
00:35:56,200 --> 00:35:56,680
ENROLLMENT BARRIERS.

845
00:35:56,680 --> 00:35:58,640
NEXT SLIDE, PLEASE.

846
00:35:58,640 --> 00:36:00,200
FOR EXAMPLE, REQUIRING 

847
00:36:00,200 --> 00:36:01,680
SIGNIFICANT TRAVEL AND HAVING 

848
00:36:01,680 --> 00:36:04,040
LESS FLEXIBLE SCHEDULES ARE ALL 

849
00:36:04,040 --> 00:36:06,320
FACTORS THAT INTRODUCE BIAS INTO

850
00:36:06,320 --> 00:36:06,720
RECRUITMENT.

851
00:36:06,720 --> 00:36:08,880
THE STUDY FOUND THAT RECRUITMENT

852
00:36:08,880 --> 00:36:11,280
IN THE OUTPATIENT VERSUS THE 

853
00:36:11,280 --> 00:36:12,920
INPATIENT SETTING WHERE PEOPLE 

854
00:36:12,920 --> 00:36:14,800
HAVE FEWER OBLIGATIONS AND 

855
00:36:14,800 --> 00:36:15,880
THEY'RE ALREADY ON SITE COULD BE

856
00:36:15,880 --> 00:36:17,600
A SIGNIFICANT SOURCE OF BIAS.

857
00:36:17,600 --> 00:36:21,120
THE STUDY DESIGN COULD INFLUENCE

858
00:36:21,120 --> 00:36:21,480
ENROLLMENT.

859
00:36:21,480 --> 00:36:26,800
NEXT SLIDE, PLEASE.

860
00:36:26,800 --> 00:36:29,880
ANOTHER STUDY DESIGN ISSUE THAT 

861
00:36:29,880 --> 00:36:32,720
FRANCIS TOUCHED ON HAS TO DO 

862
00:36:32,720 --> 00:36:33,840
WITH MEASUREMENTS.

863
00:36:33,840 --> 00:36:35,760
IN ORDER TO MAKE OUR RESEARCH 

864
00:36:35,760 --> 00:36:37,040
FOR INCLUSIVE, IT'S IMPORTANT TO

865
00:36:37,040 --> 00:36:38,600
UNDERSTAND THE ORIGINS AND 

866
00:36:38,600 --> 00:36:40,880
LIMITATIONS OF THE CATEGORIES WE

867
00:36:40,880 --> 00:36:42,920
USE TO CLASSIFY AND MEASURE 

868
00:36:42,920 --> 00:36:44,640
DIVERSITY INTO THE SCIENCE WE DO

869
00:36:44,640 --> 00:36:45,040
TODAY.

870
00:36:45,040 --> 00:36:46,600
FOR EXAMPLE, HOW WE MEASURE RACE

871
00:36:46,600 --> 00:36:49,040
IS MORALLY AND SCIENTIFICALLY 

872
00:36:49,040 --> 00:36:49,800
FLAWED.

873
00:36:49,800 --> 00:36:50,920
IT WAS DEVELOPED BY EUROPEANS 

874
00:36:50,920 --> 00:36:53,240
NOT AS A WAY TO SIMPLY 

875
00:36:53,240 --> 00:36:55,480
CATEGORIZE HUMANS BY OBSERVED 

876
00:36:55,480 --> 00:36:58,440
DIFFERENCES, BUT AS A HIERARCHAL

877
00:36:58,440 --> 00:36:59,960
ORDERING TO RECONCILE THE 

878
00:36:59,960 --> 00:37:01,960
PRACTICE OF SLAVERY WITH THE 

879
00:37:01,960 --> 00:37:04,040
NOTION OF ALL MEN PARTICULARLY 

880
00:37:04,040 --> 00:37:06,400
INCLUDING WOMEN ARE CREATED 

881
00:37:06,400 --> 00:37:09,280
EQUAL AS REFLECTED IN THIS QUOTE

882
00:37:09,280 --> 00:37:10,080
FROM THOMAS JEFFERSON ON THE 

883
00:37:10,080 --> 00:37:13,320
RIGHT SIDE OF THIS SLIDE.

884
00:37:13,320 --> 00:37:17,200
NEXT SLIDE, PLEASE.

885
00:37:17,200 --> 00:37:19,160
SO, AS I WROTE ABOUT IN AN 

886
00:37:19,160 --> 00:37:21,440
ARTICLE NEARLY 20 YEARS AGO 

887
00:37:21,440 --> 00:37:23,440
ABOUT RACIAL AND ETHNIC 

888
00:37:23,440 --> 00:37:25,280
CATEGORIES IN BIO MEDICAL 

889
00:37:25,280 --> 00:37:33,800
RESEARCH, I NOTED THAT 

890
00:37:33,800 --> 00:37:38,200
GENETICIST CHARLES HEALY WROTE 

891
00:37:38,200 --> 00:37:39,080
ABOUT IT.

892
00:37:39,080 --> 00:37:40,880
THIS HUMANA-PAREDES US TO 

893
00:37:40,880 --> 00:37:43,160
SCIENTIFICALLY AND MORALLY 

894
00:37:43,160 --> 00:37:47,520
FLAWED RESEARCH.

895
00:37:47,520 --> 00:37:50,400
TUSKEGEE THAT WITH HELD 

896
00:37:50,400 --> 00:37:51,000
TREATMENT AND BECAUSE OF THE 

897
00:37:51,000 --> 00:37:52,960
COERCIVE ELEMENT OF 

898
00:37:52,960 --> 00:37:53,280
PARTICIPATION.

899
00:37:53,280 --> 00:37:54,480
HOWEVER, THE STUDY WOULD NOT 

900
00:37:54,480 --> 00:37:56,240
HAVE BEEN CONDUCTED WITHOUT THE 

901
00:37:56,240 --> 00:37:57,560
ASSUMPTION THAT THE NATURAL 

902
00:37:57,560 --> 00:37:59,720
HISTORY OF SYPHILIS WAS SO 

903
00:37:59,720 --> 00:38:01,120
DIFFERENT IN BLACKS AND WHITES 

904
00:38:01,120 --> 00:38:03,000
THAT THEY WARRANTED AN 

905
00:38:03,000 --> 00:38:05,000
OBSERVATIONAL STUDY UNENCUMBERED

906
00:38:05,000 --> 00:38:05,520
BY TREATMENT.

907
00:38:05,520 --> 00:38:06,960
THESE ASSUMPTIONS ARE REFLECTIVE

908
00:38:06,960 --> 00:38:09,160
TODAY IN STUDIES THAT SEEK 

909
00:38:09,160 --> 00:38:10,640
GENETIC CONTRIBUTIONS TO RACIAL 

910
00:38:10,640 --> 00:38:13,440
DIFFERENCES IN THE EFFECTS OF 

911
00:38:13,440 --> 00:38:14,680
DISEASES SUCH AS COVID WITHOUT 

912
00:38:14,680 --> 00:38:18,320
ATTENTION TO WELL-KNOWN SOCIAL 

913
00:38:18,320 --> 00:38:20,920
DETERMINANTS OF INFECTIOUS 

914
00:38:20,920 --> 00:38:24,000
DISEASE SUCH AS EXPORE SURE, THE

915
00:38:24,000 --> 00:38:27,600
WORK ENVIRONMENT.

916
00:38:27,600 --> 00:38:29,680
AND DISEASES.

917
00:38:29,680 --> 00:38:30,920
NEXT SLIDE.

918
00:38:30,920 --> 00:38:33,000
FURTHERMORE, I WANT TO GIVE A 

919
00:38:33,000 --> 00:38:36,480
SHOUT OUT TO TWO OF MY POST 

920
00:38:36,480 --> 00:38:38,760
FELLOWS AND OTHERS WHO ARE 

921
00:38:38,760 --> 00:38:40,320
RECENTLY TOGETHER PUBLISHED THIS

922
00:38:40,320 --> 00:38:42,520
ARTICLE POINTING OUT HOW THE 

923
00:38:42,520 --> 00:38:47,640
IDEA OF RACIAL PURITY BECAUSE 

924
00:38:47,640 --> 00:38:49,520
THEIR DATA ARE REMOVED FROM 

925
00:38:49,520 --> 00:38:51,080
GENETIC ANALYSIS IN THE NAME OF 

926
00:38:51,080 --> 00:38:53,440
QUALITY CONTROL AND HERE I'M 

927
00:38:53,440 --> 00:38:56,440
REFERRING TO PEOPLE WHO ARE 

928
00:38:56,440 --> 00:38:57,440
CLASSIFIED AS BEING 

929
00:38:57,440 --> 00:38:57,840
MULTI-RACIAL.

930
00:38:57,840 --> 00:39:00,000
SO THIS REMOVAL OF DATA IS NOT 

931
00:39:00,000 --> 00:39:02,520
ONLY AN OBVIOUS WAY TO 

932
00:39:02,520 --> 00:39:05,440
EXACERBATE HEALTH DISPARITIES, 

933
00:39:05,440 --> 00:39:08,240
IT REFLECTS LOGIC THAT'S 

934
00:39:08,240 --> 00:39:09,720
SCIENTIFICALLY FLAWED.

935
00:39:09,720 --> 00:39:11,240
NEXT SLIDE, PLEASE.

936
00:39:11,240 --> 00:39:12,560
SO, AT THIS POINT, I'M COMMONLY 

937
00:39:12,560 --> 00:39:14,960
MET WITH THE QUESTION, ARE YOU 

938
00:39:14,960 --> 00:39:15,720
SAYING THAT I SHOULDN'T USE RACE

939
00:39:15,720 --> 00:39:19,280
OR ETHNICITY IN MY RESEARCH?

940
00:39:19,280 --> 00:39:21,600
MY ANSWER IS NO, BUT IT COMES 

941
00:39:21,600 --> 00:39:24,400
WITH A LARGE "BUT".

942
00:39:24,400 --> 00:39:25,800
NEXT SLIDE, PLEASE.

943
00:39:25,800 --> 00:39:27,760
SO FIRST, THERE ARE MANY 

944
00:39:27,760 --> 00:39:29,440
RECOMMENDATIONS NOW ON USING AND

945
00:39:29,440 --> 00:39:33,080
REPORTING RACE, ETHNICITY, AND 

946
00:39:33,080 --> 00:39:35,600
ANCESTRY IN BIO GENETIC RESEARCH

947
00:39:35,600 --> 00:39:37,800
AND THESE HAVE BEEN RECENTLY 

948
00:39:37,800 --> 00:39:38,120
PUBLISHED.

949
00:39:38,120 --> 00:39:39,760
MANY ARE APPLIED DIRECTLY TO 

950
00:39:39,760 --> 00:39:41,920
BRAIN INITIATIVE RESEARCH AND 

951
00:39:41,920 --> 00:39:43,200
I'VE INCLUDED A LIST OF THESE 

952
00:39:43,200 --> 00:39:44,600
RESOURCES AT THE END OF THIS 

953
00:39:44,600 --> 00:39:45,320
PRESENTATION WHICH I THINK YOU 

954
00:39:45,320 --> 00:39:48,040
CAN REFER TO IN THE RECORDED 

955
00:39:48,040 --> 00:39:49,240
VERSION OF THIS.

956
00:39:49,240 --> 00:39:53,920
SO NEXT SLIDE, PLEASE.

957
00:39:53,920 --> 00:39:55,760
THE KEY POINT THAT IS COMMON 

958
00:39:55,760 --> 00:39:56,760
BETWEEN THESE RECOMMENDATIONS IS

959
00:39:56,760 --> 00:39:59,640
THAT THE USE OF RACE AND 

960
00:39:59,640 --> 00:40:01,200
ETHNICITY AS VARIABLES IN 

961
00:40:01,200 --> 00:40:02,240
RESEARCH MUST BE JUSTIFIED AND 

962
00:40:02,240 --> 00:40:08,160
THEY CAN BE USED TO MEASURE 

963
00:40:08,160 --> 00:40:09,240
SELF-IDENTIFIED OR PERCEIVED 

964
00:40:09,240 --> 00:40:10,400
SOCIAL IDENTITILY IN ORDER TO 

965
00:40:10,400 --> 00:40:12,720
MEASURE SOCIAL EFFECTS SUCH AS 

966
00:40:12,720 --> 00:40:13,240
RACISM.

967
00:40:13,240 --> 00:40:15,000
HOWEVER, THERE'S BROAD CONSENSUS

968
00:40:15,000 --> 00:40:17,440
NOW THEY SHOULD NOT BE USED WITH

969
00:40:17,440 --> 00:40:18,640
THE ASSUMPTION THAT THEY REFLECT

970
00:40:18,640 --> 00:40:20,360
NATURAL BIOLOGICAL GROUPING.

971
00:40:20,360 --> 00:40:22,520
AND WE MUST USE THEM ONLY WHEN 

972
00:40:22,520 --> 00:40:25,200
WE BELIEVE THE POTENTIAL 

973
00:40:25,200 --> 00:40:28,200
BENEFITS OUTWEIGH THE POTENTIAL 

974
00:40:28,200 --> 00:40:29,800
HARMS NEVER FORGETTING THAT 

975
00:40:29,800 --> 00:40:32,440
RACIAL CATEGORIES ARE BORN OF 

976
00:40:32,440 --> 00:40:34,680
RACISM AND NOT SCIENTIFIC 

977
00:40:34,680 --> 00:40:35,000
CATEGORIES.

978
00:40:35,000 --> 00:40:36,160
NEXT SLIDE, PLEASE.

979
00:40:36,160 --> 00:40:37,880
SO I'LL JUST FINISH UP BY 

980
00:40:37,880 --> 00:40:39,360
SUMMARIZING SOME OF THE LESSONS 

981
00:40:39,360 --> 00:40:42,000
THAT I THINK WE HAVE LEARNED 

982
00:40:42,000 --> 00:40:45,920
FROM GENETIC AND GENOMICS FOR 

983
00:40:45,920 --> 00:40:46,920
IMPROVING DIVERSITY.

984
00:40:46,920 --> 00:40:48,040
FIRST THAT WE FIRST HAVE TO 

985
00:40:48,040 --> 00:40:50,560
IDENTIFY THE GAPS IN DIVERSITY 

986
00:40:50,560 --> 00:40:52,520
RESEARCH AND BEWARE OF THE 

987
00:40:52,520 --> 00:40:54,440
IMPACTS OF UNDERSERVED 

988
00:40:54,440 --> 00:40:55,560
COMMUNITIES.

989
00:40:55,560 --> 00:40:57,200
SECOND, WE SHOULD HONESTLY 

990
00:40:57,200 --> 00:40:59,280
ASSESS THE RESEARCH TO 

991
00:40:59,280 --> 00:41:00,200
UNDERREPRESENTED COMMUNITIES AND

992
00:41:00,200 --> 00:41:01,440
NOT OVERSTATE THEM.

993
00:41:01,440 --> 00:41:03,120
THIRD, WE CAN IDENTIFY WAYS THAT

994
00:41:03,120 --> 00:41:05,240
STUDY DESIGN AND PROTOCOLS CAN 

995
00:41:05,240 --> 00:41:08,680
BIAS RECRUITMENT AND ACT TO 

996
00:41:08,680 --> 00:41:09,920
MINIMIZE THAT BIAS.

997
00:41:09,920 --> 00:41:12,680
FOURTH, WE SHOULD UNDERSTAND THE

998
00:41:12,680 --> 00:41:13,840
MORAL AND SCIENTIFIC LIMITATIONS

999
00:41:13,840 --> 00:41:15,520
OF HOW WE MEASURE DIVERSITY.

1000
00:41:15,520 --> 00:41:19,520
AND FIFTH, WE SHOULD BE 

1001
00:41:19,520 --> 00:41:20,040
TRANSPARENT ABOUT THESE 

1002
00:41:20,040 --> 00:41:20,360
LIMITATIONS.

1003
00:41:20,360 --> 00:41:22,360
I'VE FOCUSED ON RACE AND 

1004
00:41:22,360 --> 00:41:23,840
ETHNICITY, BUT THE SAME METHODS 

1005
00:41:23,840 --> 00:41:27,000
CAN BE APPLIED TO OTHER TYPES OF

1006
00:41:27,000 --> 00:41:28,760
DIVERSITY REGARDING DISABILITY, 

1007
00:41:28,760 --> 00:41:34,080
SEX AND GENDER, SOCIO ECONOMIC 

1008
00:41:34,080 --> 00:41:34,760
STATUS, AND OTHERS THAT WE KNOW 

1009
00:41:34,760 --> 00:41:36,040
TO BE STRONGLY ASSOCIATED WITH 

1010
00:41:36,040 --> 00:41:37,040
HEALTH AND DISEASE AND I 

1011
00:41:37,040 --> 00:41:39,480
PROBABLY DON'T HAVE TO TELL THIS

1012
00:41:39,480 --> 00:41:43,040
AUDIENCE HERE ABOUT THE WAYS IN 

1013
00:41:43,040 --> 00:41:47,280
WHICH CLASSIFICATION OF 

1014
00:41:47,280 --> 00:41:50,880
COGNITIVE FUNCTION AND OTHER 

1015
00:41:50,880 --> 00:41:52,440
NEUROLOGICAL CONDITIONS ARE VERY

1016
00:41:52,440 --> 00:41:54,160
HOTLY CONTESTED AND FACE THE 

1017
00:41:54,160 --> 00:41:56,680
SAME LIMITATIONS AS THE OTHER 

1018
00:41:56,680 --> 00:41:58,320
CATEGORIES THAT HIVE LISTED 

1019
00:41:58,320 --> 00:41:58,520
HERE.

1020
00:41:58,520 --> 00:42:00,520
SO I'LL JUST FINISH IT UP HERE 

1021
00:42:00,520 --> 00:42:05,760
AND PASS IT ON TO DR. JACKSON.

1022
00:42:05,760 --> 00:42:06,160
THANK YOU.

1023
00:42:06,160 --> 00:42:06,880
>> ALL RIGHT.

1024
00:42:06,880 --> 00:42:09,400
THANK YOU SO MUCH, DR. CHO.

1025
00:42:09,400 --> 00:42:11,960
AND I AM BATTING CLEAN-UP HERE.

1026
00:42:11,960 --> 00:42:13,680
MY GOAL IS TO HELP YOU MAKE 

1027
00:42:13,680 --> 00:42:15,120
SENSE OF EVERYTHING THAT YOU'VE 

1028
00:42:15,120 --> 00:42:17,680
HEARD OVER THE LAST FEW 

1029
00:42:17,680 --> 00:42:17,920
SESSIONS.

1030
00:42:17,920 --> 00:42:22,680
WE KNOW THAT RACISM AND MAYBE 

1031
00:42:22,680 --> 00:42:24,120
THERE'S SOME SORT OF BIAS IN THE

1032
00:42:24,120 --> 00:42:27,040
WAY THAT WE ARE CATEGORIZING 

1033
00:42:27,040 --> 00:42:29,080
VARIABLES OR POPULATIONS IN OUR 

1034
00:42:29,080 --> 00:42:29,560
STUDIESES.

1035
00:42:29,560 --> 00:42:31,160
WE KNOW THERE'S A PROBLEM, WHAT 

1036
00:42:31,160 --> 00:42:32,560
DO WE DO NOW?

1037
00:42:32,560 --> 00:42:36,560
MY GOAL IN THE LAST SEVEN AND A 

1038
00:42:36,560 --> 00:42:38,320
HALF MINUTES IS TO HELP YOU 

1039
00:42:38,320 --> 00:42:39,240
IDENTIFY SOME CONCRETE OPTIONS 

1040
00:42:39,240 --> 00:42:41,040
IN TERMS OF WHAT YOU CAN DO 

1041
00:42:41,040 --> 00:42:41,400
NEXT.

1042
00:42:41,400 --> 00:42:43,280
SO WE'VE GOT A LOT OF GREAT 

1043
00:42:43,280 --> 00:42:45,760
ADVICE FROM ALL THE PRESENTERS.

1044
00:42:45,760 --> 00:42:47,960
I THINK DR. CHO'S ADVICE AT THE 

1045
00:42:47,960 --> 00:42:50,880
END OF HER PRESENTATION IN 

1046
00:42:50,880 --> 00:42:51,880
PARTICULAR IS VERY COGENT, BUT 

1047
00:42:51,880 --> 00:42:54,000
IF YOU'RE STILL LOOKING FOR 

1048
00:42:54,000 --> 00:42:55,560
CONCRETE ADVICE THAT IS WORKABLE

1049
00:42:55,560 --> 00:42:58,520
OR PRACTICABLE IN AN ONGOING 

1050
00:42:58,520 --> 00:43:00,240
STUDY, HOPEFULLY, I'LL HAVE 

1051
00:43:00,240 --> 00:43:01,520
SOMETHING THAT IS OF BENEFIT TO 

1052
00:43:01,520 --> 00:43:02,600
YOU IN THIS PRESENTATION.

1053
00:43:02,600 --> 00:43:05,440
SO I WANTED TO START OFF BY 

1054
00:43:05,440 --> 00:43:06,840
RECOGNIZING THAT THE PROBLEM OF 

1055
00:43:06,840 --> 00:43:12,800
DIVERSE RECRUITMENT IS REALLY 

1056
00:43:12,800 --> 00:43:15,800
SUB ASSUMED UNDER A BROADER 

1057
00:43:15,800 --> 00:43:18,040
PROBLEM OF RECRUITMENT.

1058
00:43:18,040 --> 00:43:19,720
THE INSTANCE OF PATIENT 

1059
00:43:19,720 --> 00:43:21,440
AVAILABILITY SHARPLY DECREASES 

1060
00:43:21,440 --> 00:43:23,320
WHEN A CLINICAL TRIAL BEGINS AND

1061
00:43:23,320 --> 00:43:27,680
RETURNS TO ITS ORIGINAL LEVEL AS

1062
00:43:27,680 --> 00:43:31,880
SOON AS THE TRIAL IS COMPLETED.

1063
00:43:31,880 --> 00:43:32,680
BASICALLY TAKE HOWEVER MANY 

1064
00:43:32,680 --> 00:43:34,520
PEOPLE CAN DO YOUR RESEARCH 

1065
00:43:34,520 --> 00:43:36,720
STUDY AND DIVIDE IT BY TEN AND 

1066
00:43:36,720 --> 00:43:38,080
THAT'S A CLOSER ESTIMATE OF WHO 

1067
00:43:38,080 --> 00:43:39,400
WILL BE ABLE TO ENROLL.

1068
00:43:39,400 --> 00:43:47,240
THESE TWO LAWS WERE WRITTEN WITH

1069
00:43:47,240 --> 00:43:49,520
TONGUE AND CHEEK BUT RELATIVELY 

1070
00:43:49,520 --> 00:43:50,000
SPEAKS TO THE ISSUE OF 

1071
00:43:50,000 --> 00:43:52,400
RECRUITMENT BEING A TOUGH 

1072
00:43:52,400 --> 00:43:52,640
CHALLENGE.

1073
00:43:52,640 --> 00:43:55,920
IN PARTICULAR WITH RESEARCH FROM

1074
00:43:55,920 --> 00:43:58,000
PRINCIPLE INVESTIGATORS HOW TO 

1075
00:43:58,000 --> 00:44:00,280
ENGAGE AND RECRUIT EXPANDS MORE 

1076
00:44:00,280 --> 00:44:00,520
GENERALLY.

1077
00:44:00,520 --> 00:44:03,080
OF THE PROBLEM IS, OF COURSE, 

1078
00:44:03,080 --> 00:44:04,600
COMPOUNDED FOR RE167 POPULATIONS

1079
00:44:04,600 --> 00:44:07,560
THAT ARE NOT NORMALLY ENGAGED IN

1080
00:44:07,560 --> 00:44:09,520
HUMAN NEUROIMAGING OR HUMAN 

1081
00:44:09,520 --> 00:44:10,720
RESEARCH IN GENERAL.

1082
00:44:10,720 --> 00:44:12,880
SO WHAT DOES THAT LOOK LIKE?

1083
00:44:12,880 --> 00:44:15,040
AND THIS SLIDE COMES FROM A 

1084
00:44:15,040 --> 00:44:22,400
PAPER THAT WAS PUBLISHED A FEW 

1085
00:44:22,400 --> 00:44:26,640
YEARS AGO BY CAREY GLEESON AND 

1086
00:44:26,640 --> 00:44:27,200
COLLEAGUES.

1087
00:44:27,200 --> 00:44:32,120
SO WHAT WE SEE HERE IS A CAPLIN 

1088
00:44:32,120 --> 00:44:33,440
MEYER CURVE LOOKING AT A 

1089
00:44:33,440 --> 00:44:35,880
PROGRESSION OF INDIVIDUALS WHO 

1090
00:44:35,880 --> 00:44:37,760
PRESENTED AT BASELINE WITH A 

1091
00:44:37,760 --> 00:44:40,000
DIAGNOSIS OF MYO COGNITIVE 

1092
00:44:40,000 --> 00:44:41,440
IMPAIRMENT AND AS YOU LOOK TO 

1093
00:44:41,440 --> 00:44:44,080
THE RIGHT, THE PERCENTAGE OF 

1094
00:44:44,080 --> 00:44:45,920
THAT GROUP THAT IS PROGRESSING 

1095
00:44:45,920 --> 00:44:49,760
OR HAS PROGRESSED TO A STAGE OF 

1096
00:44:49,760 --> 00:44:50,800
DMEN CHA.

1097
00:44:50,800 --> 00:44:52,280
EVEN THOUGH THIS IS COMING FROM 

1098
00:44:52,280 --> 00:44:54,760
THE DATA SET, THIS IS ONE OF OUR

1099
00:44:54,760 --> 00:44:57,320
LARGEST SOURCES OF INFORMATION 

1100
00:44:57,320 --> 00:44:59,360
THAT'S CONTRIBUTED TO EVERY 

1101
00:44:59,360 --> 00:45:00,240
ALZHEIMER'S DISEASE RESEARCH 

1102
00:45:00,240 --> 00:45:01,640
CENTER IN THE UNITED STATES.

1103
00:45:01,640 --> 00:45:03,000
WE STILL SEE SOMETHING THAT 

1104
00:45:03,000 --> 00:45:06,080
DOESN'T MAKE A LOT OF SENSE.

1105
00:45:06,080 --> 00:45:07,000
ULTIMATELY, THAT BLACK 

1106
00:45:07,000 --> 00:45:08,720
INDIVIDUALS ARE PROGRESSING OR 

1107
00:45:08,720 --> 00:45:14,720
THAT GROUP IS PROGRESSING AT A 

1108
00:45:14,720 --> 00:45:16,320
SLOWER RATE TO DEMENTIA RELATIVE

1109
00:45:16,320 --> 00:45:18,000
TO WHITES.

1110
00:45:18,000 --> 00:45:19,960
THIS BRINGS EVERYTHING WE KNOW 

1111
00:45:19,960 --> 00:45:27,880
ABOUT RISK OF DEMENTIA AS IT IS 

1112
00:45:27,880 --> 00:45:29,160
CONTEXTUALIZED BY RACE.

1113
00:45:29,160 --> 00:45:31,640
ULTIMATELY, YOU'RE NOT ALONE.

1114
00:45:31,640 --> 00:45:34,040
TO HELP YOU WALK THROUGH THE 

1115
00:45:34,040 --> 00:45:35,280
REACTION YOU'RE LIKELY HAVING.

1116
00:45:35,280 --> 00:45:36,360
OF THERE'S NOTHING ABOUT THIS 

1117
00:45:36,360 --> 00:45:38,840
THAT MAKES SENSE.

1118
00:45:38,840 --> 00:45:40,000
HOWEVER, IF WE THINK MORE 

1119
00:45:40,000 --> 00:45:42,400
CAREFULLY ABOUT THIS DATA, WE'LL

1120
00:45:42,400 --> 00:45:43,920
UNDERSTAND THAT BY PAYING 

1121
00:45:43,920 --> 00:45:45,920
ATTENTION TO OTHER SOCIAL OR 

1122
00:45:45,920 --> 00:45:47,160
CATEGORICAL IDENTIFIERS PROVIDES

1123
00:45:47,160 --> 00:45:48,800
A LOT OF CONTEXT TO THIS 

1124
00:45:48,800 --> 00:45:49,120
INFORMATION.

1125
00:45:49,120 --> 00:45:52,000
SO INSTEAD OF THINKING ABOUT 

1126
00:45:52,000 --> 00:45:54,600
THESE TWO LINES AS WHITE PEOPLE 

1127
00:45:54,600 --> 00:45:56,360
VERSUS BLACK PEOPLE AND THEN 

1128
00:45:56,360 --> 00:45:58,320
WORKING TRYING TO INVERT OR 

1129
00:45:58,320 --> 00:45:59,920
UNDERSTAND SOME ELEMENT OF RISK 

1130
00:45:59,920 --> 00:46:01,600
THAT MIGHT BE CONDITIONED ON 

1131
00:46:01,600 --> 00:46:02,000
RACE.

1132
00:46:02,000 --> 00:46:03,320
IN THIS PARTICULAR EXAMPLE, WE 

1133
00:46:03,320 --> 00:46:05,400
CAN JUST THINK ABOUT WHO WAS 

1134
00:46:05,400 --> 00:46:06,160
RECRUITED AND FROM ONE 

1135
00:46:06,160 --> 00:46:09,440
PARTICULAR SETTING.

1136
00:46:09,440 --> 00:46:11,080
THE VAST MAJORITY OF WHITE 

1137
00:46:11,080 --> 00:46:11,680
IDENTIFYING INDIVIDUALS WERE 

1138
00:46:11,680 --> 00:46:16,320
RECRUITED FROM A MEMORY CLINIC 

1139
00:46:16,320 --> 00:46:18,960
SETTING WHEREAS THE VAST 

1140
00:46:18,960 --> 00:46:20,920
MAJORITY OF BLACK INDIVIDUALS 

1141
00:46:20,920 --> 00:46:24,920
THEY WENT TO LOCAL SENIOR 

1142
00:46:24,920 --> 00:46:26,480
CENTERS, LOCAL BLACK CHURCHES 

1143
00:46:26,480 --> 00:46:28,000
AND SO ULTIMATELY, YOU'VE GOT A 

1144
00:46:28,000 --> 00:46:30,320
GROUP OF RELATIVELY HIGH 

1145
00:46:30,320 --> 00:46:31,200
PREVALENCE THAT'S BEING 

1146
00:46:31,200 --> 00:46:33,480
RECRUITED FROM A LOW-RISK 

1147
00:46:33,480 --> 00:46:34,760
SETTING AND BEING RECRUITED FROM

1148
00:46:34,760 --> 00:46:37,200
A HIGHER RISK SETTING.

1149
00:46:37,200 --> 00:46:39,640
ULTIMATELY, WHAT YOU'VE GOT HERE

1150
00:46:39,640 --> 00:46:41,360
IS AN APPLES AND ORANGES 

1151
00:46:41,360 --> 00:46:41,600
PROBLEM.

1152
00:46:41,600 --> 00:46:44,280
SO IF WE'RE NOT CAREFUL, WE ARE 

1153
00:46:44,280 --> 00:46:46,080
LIKELY TO RUN INTO THE SAME SET 

1154
00:46:46,080 --> 00:46:47,080
OF CHALLENGES.

1155
00:46:47,080 --> 00:46:50,400
SO WHAT DO WE DO WHEN WE HAVE 

1156
00:46:50,400 --> 00:46:51,880
THESE KINDS OF BARRIERS THAT 

1157
00:46:51,880 --> 00:46:53,080
WE'RE TRYING TO FACE.

1158
00:46:53,080 --> 00:46:55,400
NOW, IT'S EASY TO SAY THAT THE 

1159
00:46:55,400 --> 00:46:58,680
BARRIERS THAT CERTAIN MINORTIZED

1160
00:46:58,680 --> 00:47:03,040
RACIAL OR ETHNO RACIAL GROUPS 

1161
00:47:03,040 --> 00:47:05,760
REPORT THE MOST COMMONLY ARE 

1162
00:47:05,760 --> 00:47:07,240
RELATED TO TRANSPORTATION OR 

1163
00:47:07,240 --> 00:47:08,800
SOME ELEMENT OF TRUST, BUT THIS 

1164
00:47:08,800 --> 00:47:12,440
IS DATA FROM A STUDY THAT I DID 

1165
00:47:12,440 --> 00:47:13,840
ON PARK KINSON'S DISEASE OVER 

1166
00:47:13,840 --> 00:47:15,600
THE LAST COUPLE OF YEARS AND WE 

1167
00:47:15,600 --> 00:47:18,640
FOUND THAT 230 INDIVIDUALS OUT 

1168
00:47:18,640 --> 00:47:19,600
OF 500 WANTED TO PARTICIPATE, 

1169
00:47:19,600 --> 00:47:19,960
BUT COULDN'T.

1170
00:47:19,960 --> 00:47:22,440
IF YOU LOOK AT THE BARRIERS 

1171
00:47:22,440 --> 00:47:24,800
HERE, THE VAST MAJORITY OF THEM 

1172
00:47:24,800 --> 00:47:26,920
WERE TIED TO LANGUAGE EQUITY AND

1173
00:47:26,920 --> 00:47:27,480
THE DIGITAL DIVIDE.

1174
00:47:27,480 --> 00:47:29,520
YOU CAN SEE THE TRUST ON HERE IS

1175
00:47:29,520 --> 00:47:32,200
REPORTED THIRD, BUT IT WAS ABOUT

1176
00:47:32,200 --> 00:47:34,360
4% OF INDIVIDUALS IN THIS 

1177
00:47:34,360 --> 00:47:35,600
PARTICULAR BARRIER.

1178
00:47:35,600 --> 00:47:37,160
NOW, THERE MAY HAVE BEEN SOME 

1179
00:47:37,160 --> 00:47:38,800
PARTICULAR REPORTING BIASES, BUT

1180
00:47:38,800 --> 00:47:41,080
ULTIMATELY, THE RECRUITMENT 

1181
00:47:41,080 --> 00:47:42,560
BARRIERS AREN'T WHAT WE THINK 

1182
00:47:42,560 --> 00:47:45,360
THEY ARE AND SO IT'S ALWAYS GOOD

1183
00:47:45,360 --> 00:47:48,600
TO ASK AND FIND OUT INTERVENING 

1184
00:47:48,600 --> 00:47:49,440
LOCALLY.

1185
00:47:49,440 --> 00:47:49,920
INVESTIGATORS ARE NOT 

1186
00:47:49,920 --> 00:47:51,280
NECESSARILY THE INDIVIDUALS WITH

1187
00:47:51,280 --> 00:47:52,160
THE MOST EXPERTISE.

1188
00:47:52,160 --> 00:47:54,200
SO IN TERMS OF LOOKING FOR THE 

1189
00:47:54,200 --> 00:47:55,920
DEVICE THAT'S CONCRETE, HERE ARE

1190
00:47:55,920 --> 00:47:58,920
SOME THINGS THAT YOU CAN DO.

1191
00:47:58,920 --> 00:48:00,120
FIRST OF ALL, TRY TO SEPARATE.

1192
00:48:00,120 --> 00:48:02,120
IT'S EASY TO SAY BECAUSE WE'RE 

1193
00:48:02,120 --> 00:48:03,320
BASED IN SAY THE CITY OF 

1194
00:48:03,320 --> 00:48:06,120
ATLANTA, WE'VE GOT THIS MANY 

1195
00:48:06,120 --> 00:48:07,120
BLACK OR AFRICAN AMERICAN 

1196
00:48:07,120 --> 00:48:08,480
INDIVIDUALS THAT WE CAN REACH.

1197
00:48:08,480 --> 00:48:09,680
REALLY UNDERSTANDING WHAT THAT 

1198
00:48:09,680 --> 00:48:13,000
LOOKS LIKE AS A BIAS SUBSET OF 

1199
00:48:13,000 --> 00:48:14,200
YOUR OVERALL AREA AND THEN 

1200
00:48:14,200 --> 00:48:16,000
TRYING TO RECRUIT ALL OF THOSE 

1201
00:48:16,000 --> 00:48:17,440
INDIVIDUALS UNDERSTANDING WHAT 

1202
00:48:17,440 --> 00:48:20,160
THOSE BARRIERS THAT YOU ARE 

1203
00:48:20,160 --> 00:48:26,040
NECESSARILY DESIGNING.

1204
00:48:26,040 --> 00:48:27,760
POLICY OF WHO'S WILLING OR ABLE 

1205
00:48:27,760 --> 00:48:29,920
TO SIGN UP FOR YOUR STUDY.

1206
00:48:29,920 --> 00:48:32,720
THE SECOND PIECE OF ADVICE IS TO

1207
00:48:32,720 --> 00:48:34,920
BE REALLY THOUGHTFUL AND OTHER 

1208
00:48:34,920 --> 00:48:35,680
STUDIES.

1209
00:48:35,680 --> 00:48:36,800
MAYBE YOU HEARD THAT BLACK 

1210
00:48:36,800 --> 00:48:38,880
INDIVIDUALS CAN BE RECRUITED 

1211
00:48:38,880 --> 00:48:43,160
FROM A CHURCH OR FROM A 

1212
00:48:43,160 --> 00:48:43,760
BARBERSHOP, BUT WITHOUT 

1213
00:48:43,760 --> 00:48:45,000
NECESSARILY UNDERSTANDING WHAT 

1214
00:48:45,000 --> 00:48:48,040
THOSE INTERVENTIONS LOOK LIKE 

1215
00:48:48,040 --> 00:48:49,440
AND WHICH KINDS OF INDIVIDUALS 

1216
00:48:49,440 --> 00:48:52,040
WERE TRYING TO BE RECRUITED, IT 

1217
00:48:52,040 --> 00:48:54,440
MAY NOT NECESSARILY BE PRACTICAL

1218
00:48:54,440 --> 00:48:57,120
FOR YOUR PARTICULAR NEUROIMAGING

1219
00:48:57,120 --> 00:48:59,080
RESEARCH STUDY TO IMPLEMENT 

1220
00:48:59,080 --> 00:49:00,200
THOSE PARTICULAR FIXES.

1221
00:49:00,200 --> 00:49:03,480
SO BE THOUGHTFUL BEFORE YOU TRY 

1222
00:49:03,480 --> 00:49:05,080
TO BRING THOSE INTO FORCE.

1223
00:49:05,080 --> 00:49:06,760
I WOULD SAY THAT IF THERE'S ONE 

1224
00:49:06,760 --> 00:49:08,440
PIECE OF ADVICE THAT I COULD 

1225
00:49:08,440 --> 00:49:09,560
REALLY EMPHASIZE HERE IS THAT 

1226
00:49:09,560 --> 00:49:12,320
MOST OF US HAVE A PROBLEM WITH 

1227
00:49:12,320 --> 00:49:12,760
AWARENESS.

1228
00:49:12,760 --> 00:49:15,440
THAT IS TO SAY THAT THE AVERAGE 

1229
00:49:15,440 --> 00:49:16,200
PERSON WALKING AROUND HAS NEVER 

1230
00:49:16,200 --> 00:49:17,520
HEARD OF RESEARCH.

1231
00:49:17,520 --> 00:49:19,000
THEY DON'T KNOW WHAT CLINICAL 

1232
00:49:19,000 --> 00:49:23,120
RESEARCH IS AND I GUARANTEE THEY

1233
00:49:23,120 --> 00:49:24,240
HAVE NO IDEA WHAT HUMAN 

1234
00:49:24,240 --> 00:49:25,080
NEUROIMAGING RESEARCH IS.

1235
00:49:25,080 --> 00:49:27,120
AND SO TRYING TO RAISE THAT 

1236
00:49:27,120 --> 00:49:29,160
AWARENESS NOT JUST WITHIN OUR 

1237
00:49:29,160 --> 00:49:31,320
NEURORESEARCH CAMPUSES, BUT OUT 

1238
00:49:31,320 --> 00:49:36,480
IN THE GENERAL WORLD BY HAVING A

1239
00:49:36,480 --> 00:49:38,320
SUBSTANTIAL SOCIAL MEDIA 

1240
00:49:38,320 --> 00:49:40,040
PRESENCE MAY ALSO BE HELPFUL IN 

1241
00:49:40,040 --> 00:49:41,120
HAD THIS PARTICULAR REGARD.

1242
00:49:41,120 --> 00:49:42,840
FEW WANT TO GET NEW PEOPLE IN 

1243
00:49:42,840 --> 00:49:44,960
YOUR STUDY, AND YOU WANT THEM TO

1244
00:49:44,960 --> 00:49:47,760
BE COMPARABLE TO THE PEOPLE IN 

1245
00:49:47,760 --> 00:49:48,280
YOUR STUDY, YOU HAVE TO 

1246
00:49:48,280 --> 00:49:51,200
RECOGNIZE THAT NEW SORTS OF 

1247
00:49:51,200 --> 00:49:53,720
SOLUTIONS ARE GOING TO BE 

1248
00:49:53,720 --> 00:49:57,880
REQUIRED AND IT'S IMPORTANT TO 

1249
00:49:57,880 --> 00:49:58,760
UNDERSTAND THE PRINCIPLE 

1250
00:49:58,760 --> 00:50:00,720
EXPERTISE IS NOT GOING TO ALIGN 

1251
00:50:00,720 --> 00:50:02,240
WITH OUR RESEARCH AND 

1252
00:50:02,240 --> 00:50:02,600
ASSISTANCE.

1253
00:50:02,600 --> 00:50:03,680
THERE ARE OTHER FEW PIECES OF 

1254
00:50:03,680 --> 00:50:05,120
ADVICE HERE THAT I HAVE RELATED 

1255
00:50:05,120 --> 00:50:09,320
TO MAKING SURE THAT YOU'RE 

1256
00:50:09,320 --> 00:50:09,880
LEVERAGING PLAIN LANGUAGE.

1257
00:50:09,880 --> 00:50:12,920
SO AIMING FOR THAT FIFTH GRADE 

1258
00:50:12,920 --> 00:50:15,120
READING LEVEL IF AT ALL 

1259
00:50:15,120 --> 00:50:15,520
POSSIBLE.

1260
00:50:15,520 --> 00:50:17,360
RECOGNIZING THERE ARE MULTIPLE 

1261
00:50:17,360 --> 00:50:19,520
STAKEHOLDER GROUPS BESIDES THE 

1262
00:50:19,520 --> 00:50:21,160
TEAM AND STUDY PARTICIPANTS AND 

1263
00:50:21,160 --> 00:50:23,240
ENSURE YOU HAVE A STRONGER TURN 

1264
00:50:23,240 --> 00:50:24,040
OF VALUE.

1265
00:50:24,040 --> 00:50:26,320
MAKING SURE ALL THE STAKEHOLDER 

1266
00:50:26,320 --> 00:50:29,440
GROUPS THAT YOU'RE ENGAGING, 

1267
00:50:29,440 --> 00:50:30,000
YOU'RE GIVING SOME SORT OF 

1268
00:50:30,000 --> 00:50:31,560
SOCIAL BENEFIT WHETHER THAT IS 

1269
00:50:31,560 --> 00:50:33,080
TIME, MONEY, EXPERTISE OR 

1270
00:50:33,080 --> 00:50:35,440
INFORMATION AND ENSURING THAT 

1271
00:50:35,440 --> 00:50:38,880
FROM MULTIPLE RETURNS OF VALUE 

1272
00:50:38,880 --> 00:50:39,560
IS REALLY HELPFUL.

1273
00:50:39,560 --> 00:50:41,440
COMMUNITY IS GOING TO BE THE 

1274
00:50:41,440 --> 00:50:43,000
MOST ELEGANT SOLUTION, BUT IT 

1275
00:50:43,000 --> 00:50:44,520
ALWAYS TAKES A LOT OF TIME.

1276
00:50:44,520 --> 00:50:46,320
USUALLY ON AVERAGE, IT TAKES 

1277
00:50:46,320 --> 00:50:47,800
ABOUT SEVEN YEARS TO GET THIS 

1278
00:50:47,800 --> 00:50:48,040
RIGHT.

1279
00:50:48,040 --> 00:50:49,600
SO IF YOU DON'T HAVE SEVEN 

1280
00:50:49,600 --> 00:50:51,240
YEARS, IT HELPS TO START NOW.

1281
00:50:51,240 --> 00:50:53,000
AND SO I JUST WANT TO WRAP UP 

1282
00:50:53,000 --> 00:50:55,120
WITH A LITTLE BIT MORE IN TERMS 

1283
00:50:55,120 --> 00:50:56,480
OF CONCRETE ADVICE.

1284
00:50:56,480 --> 00:50:59,400
SO THINK ABOUT YOUR SCHEDULING, 

1285
00:50:59,400 --> 00:51:01,000
MAKING SURE THAT IF SOMEBODY 

1286
00:51:01,000 --> 00:51:02,240
PRESENTS RESEARCH OPPORTUNITY 

1287
00:51:02,240 --> 00:51:03,600
THAT THERE'S SOME OPPORTUNITY 

1288
00:51:03,600 --> 00:51:06,200
FOR THEM TO PARTICIPATE EITHER 

1289
00:51:06,200 --> 00:51:09,240
AS A PARTICIPANT OR A 

1290
00:51:09,240 --> 00:51:12,360
PARTICIPANT AMBASSADOR.

1291
00:51:12,360 --> 00:51:15,120
ALL OF THESE ARE REALLY HELPFUL 

1292
00:51:15,120 --> 00:51:16,880
TO ENSURE YOU ARE REACHING 

1293
00:51:16,880 --> 00:51:18,640
ENTIRE NEIGHBORHOODS FROM THE 

1294
00:51:18,640 --> 00:51:21,120
AREAS YOU'RE TRYING TO REACH.

1295
00:51:21,120 --> 00:51:22,640
IT'S HELPFUL TO DO A LOT OF 

1296
00:51:22,640 --> 00:51:25,040
SOCIAL AND DIGITAL MEDIA, AND, 

1297
00:51:25,040 --> 00:51:27,120
OF COURSE, AS WE ALL HAVE 

1298
00:51:27,120 --> 00:51:29,480
EXHORTED YOU IS TO MAKE SURE 

1299
00:51:29,480 --> 00:51:31,280
YOUR TEAM REMAINS AS DIVERSE AS 

1300
00:51:31,280 --> 00:51:32,880
POSSIBLE OF ALL LEVELS AND WHAT 

1301
00:51:32,880 --> 00:51:35,120
I WANT TO EMPHASIZE IS LOCALITY 

1302
00:51:35,120 --> 00:51:37,560
IS ALSO INCREDIBLY IMPORTANT 

1303
00:51:37,560 --> 00:51:37,880
TOO.

1304
00:51:37,880 --> 00:51:39,280
JUST WITH BECAUSE YOU'VE GOT A 

1305
00:51:39,280 --> 00:51:41,920
BROWN FACE ON THE OTHER SIDE OF 

1306
00:51:41,920 --> 00:51:43,320
THE COUNTRY DOESN'T MEAN YOU 

1307
00:51:43,320 --> 00:51:44,600
HAVE THE SOCIAL.

1308
00:51:44,600 --> 00:51:46,120
LOOK FOR THAT COMBINATION OF 

1309
00:51:46,120 --> 00:51:47,840
DIVERSITY AND LOCALITY TO GET 

1310
00:51:47,840 --> 00:51:48,640
THIS RIGHT.

1311
00:51:48,640 --> 00:51:50,720
SO I'M GOING TO JUST WRAP UP 

1312
00:51:50,720 --> 00:51:51,160
THERE.

1313
00:51:51,160 --> 00:51:52,760
I'VE GOT SOME OTHER EXAMPLESES, 

1314
00:51:52,760 --> 00:51:54,520
BUT INSTEAD OF WALKING THROUGH 

1315
00:51:54,520 --> 00:51:56,600
THOSE, I'LL SAVE THOSE FOR THE 

1316
00:51:56,600 --> 00:51:56,840
Q&A.

1317
00:51:56,840 --> 00:51:58,480
FOR NOW, I WANT TO TAKE THINGS 

1318
00:51:58,480 --> 00:52:00,160
BACK SO WE CAN HAVE A LITTLE BIT

1319
00:52:00,160 --> 00:52:01,280
OF A ROUND TABLE DISCUSSION 

1320
00:52:01,280 --> 00:52:02,440
ABOUT SOME OF THE THINGS THAT 

1321
00:52:02,440 --> 00:52:07,280
WE'VE HIGHLIGHTED HERE.

1322
00:52:07,280 --> 00:52:09,320
>> THANK YOU ALL THE FOR A
GREAT

1323
00:52:09,320 --> 00:52:12,040
SET OF PRESENTATIONS AND WE'VE 

1324
00:52:12,040 --> 00:52:13,440
GOT A WONDERFUL LIST OF 

1325
00:52:13,440 --> 00:52:19,360
QUESTIONS THAT I WANT TO LAUNCH 

1326
00:52:19,360 --> 00:52:19,720
IN THIS GROUP.

1327
00:52:19,720 --> 00:52:24,040
ONE THREAD THAT RUNS THROUGH 

1328
00:52:24,040 --> 00:52:28,640
THESE QUESTIONS IS THAT WE HEARD

1329
00:52:28,640 --> 00:52:34,640
FROM VONETTA AND LENETTE ABOUT 

1330
00:52:34,640 --> 00:52:35,880
DRAMATIC HEALTH DISPARITIES AND 

1331
00:52:35,880 --> 00:52:38,760
THE FAILURE THAT YOU BOTH SEE IN

1332
00:52:38,760 --> 00:52:42,000
THE LITERATURES THAT YOU'RE 

1333
00:52:42,000 --> 00:52:43,240
EXAMINING TO EVEN REPORT RACE 

1334
00:52:43,240 --> 00:52:45,440
AND ETHNICITY.

1335
00:52:45,440 --> 00:52:46,720
BUT AT THE SAME TIME, WE'VE 

1336
00:52:46,720 --> 00:52:50,920
HEARD FROM MILDRED THAT, YOU 

1337
00:52:50,920 --> 00:52:54,800
KNOW, RACE ITSELF IS A 

1338
00:52:54,800 --> 00:52:56,680
PROBLEMATIC CONCEPT AND IN 

1339
00:52:56,680 --> 00:52:59,280
GENOMICS, YOU KNOW, THERE'S BEEN

1340
00:52:59,280 --> 00:53:03,600
A LOT OF WORK TO SEPARATE OUT 

1341
00:53:03,600 --> 00:53:05,680
THE SOCIALLY DEFINED CATEGORY OF

1342
00:53:05,680 --> 00:53:09,360
RACE FROM THINGS LIKE ANCESTRY 

1343
00:53:09,360 --> 00:53:12,000
INFORMATIVE MARKERS AND TO 

1344
00:53:12,000 --> 00:53:14,760
CONSIDER AS MILDRED SAID, YOU 

1345
00:53:14,760 --> 00:53:18,960
KNOW, WHEN AND HOW TO REPORT 

1346
00:53:18,960 --> 00:53:21,120
RACIAL AND ETHNIC CATEGORIES.

1347
00:53:21,120 --> 00:53:22,840
SO I THOUGHT I'D START BY 

1348
00:53:22,840 --> 00:53:26,320
COMBINING TWO QUESTIONS AND ASK 

1349
00:53:26,320 --> 00:53:30,440
FIRST VONETTA AND THEN LENETTE, 

1350
00:53:30,440 --> 00:53:32,000
HOW DO YOU THINK ABOUT THE 

1351
00:53:32,000 --> 00:53:33,720
DEFINITION OF RACE AND ETHNICITY

1352
00:53:33,720 --> 00:53:37,960
IN YOUR WORK AND THE DANGERS OF 

1353
00:53:37,960 --> 00:53:39,280
REPORTING IT?

1354
00:53:39,280 --> 00:53:41,840
VONETTA, DO YOU WANT TO KICK 

1355
00:53:41,840 --> 00:53:42,160
OFF?

1356
00:53:42,160 --> 00:53:43,520
>> SURE.

1357
00:53:43,520 --> 00:53:45,880
THAT IS A HUGE QUESTION AND ONE 

1358
00:53:45,880 --> 00:53:48,800
WITHOUT A SIMPLE ANSWER.

1359
00:53:48,800 --> 00:53:50,840
I'VE STRUGGLED WITH THAT BECAUSE

1360
00:53:50,840 --> 00:53:52,800
WE KNOW THAT THERE ARE SO MANY 

1361
00:53:52,800 --> 00:53:54,560
LIMITATIONS OF WHAT WE CALL RACE

1362
00:53:54,560 --> 00:53:57,000
AND WE KNOW THAT IT'S A SOCIAL 

1363
00:53:57,000 --> 00:53:57,240
CONSTRUCT.

1364
00:53:57,240 --> 00:53:59,560
WE ALSO KNOW THAT THE LABEL 

1365
00:53:59,560 --> 00:54:01,960
TENDS TO COME ALONG WITH SOME OF

1366
00:54:01,960 --> 00:54:03,400
THOSE SOCIAL DETERMINANTS THAT 

1367
00:54:03,400 --> 00:54:04,040
ARE IMPORTANT.

1368
00:54:04,040 --> 00:54:07,080
SO WE DO WANT TO CAPTURE THEM.

1369
00:54:07,080 --> 00:54:09,440
SO THE APPROACH THAT I'VE TAKEN 

1370
00:54:09,440 --> 00:54:11,480
HAS BEEN ONE OF GATHERING 

1371
00:54:11,480 --> 00:54:12,680
INFORMATION ABOUT SELF-REPORTED 

1372
00:54:12,680 --> 00:54:15,280
RACE, BUT ALSO TRYING TO GATHER 

1373
00:54:15,280 --> 00:54:18,560
INFORMATION ABOUT SOME OF THOSE 

1374
00:54:18,560 --> 00:54:19,160
SOCIAL DETERMINANTS THAT ARE 

1375
00:54:19,160 --> 00:54:20,360
REALLY WHAT I'M TRYING TO GET 

1376
00:54:20,360 --> 00:54:23,760
AT, SO I'M TRYING TO LOOK AT 

1377
00:54:23,760 --> 00:54:24,840
EDUCATIONAL QUALITY AND WHERE 

1378
00:54:24,840 --> 00:54:27,040
THEY LIVE AND SOCIO ECONOMIC 

1379
00:54:27,040 --> 00:54:28,840
STATUS IN VARIOUS WAYS.

1380
00:54:28,840 --> 00:54:30,720
I'VE STARTED TO GATHER MORE 

1381
00:54:30,720 --> 00:54:32,560
INFORMATION FROM PARTICIPANTS 

1382
00:54:32,560 --> 00:54:34,200
ABOUT RACE RELATED STRESS AND 

1383
00:54:34,200 --> 00:54:35,040
DISCRIMINATION AND SOME OF THOSE

1384
00:54:35,040 --> 00:54:36,840
OTHER THINGS THAT WE KNOW ALL 

1385
00:54:36,840 --> 00:54:38,120
KIND OF TIE INTO IT.

1386
00:54:38,120 --> 00:54:40,720
SO BY HAVING A MORE SORT OF 

1387
00:54:40,720 --> 00:54:42,720
COMPREHENSIVE WAY OF LOOKING AT 

1388
00:54:42,720 --> 00:54:45,160
OR MEASURING THE ACTUAL KIND OF 

1389
00:54:45,160 --> 00:54:48,040
CONCEPTS THAT I AM TRYING TO GET

1390
00:54:48,040 --> 00:54:49,040
AT BY LOOKING AT RACE THAT FOR 

1391
00:54:49,040 --> 00:54:50,640
THE RESEARCH THAT I DO IS ONE 

1392
00:54:50,640 --> 00:54:51,840
WAY OF APPROACHING IT.

1393
00:54:51,840 --> 00:54:55,800
I KNOW THAT'S NOT A PERFECT 

1394
00:54:55,800 --> 00:54:56,160
SOLUTION.

1395
00:54:56,160 --> 00:54:57,400
I DO THINK THAT IT'S GOING TO BE

1396
00:54:57,400 --> 00:55:01,440
AN ONGOING CHALLENGE FOR HOW WE 

1397
00:55:01,440 --> 00:55:02,560
CAPTURE THESE IMPORTANT 

1398
00:55:02,560 --> 00:55:04,440
VARIABLES, BUT I'VE TAKEN THE 

1399
00:55:04,440 --> 00:55:06,880
STANCE THAT WE CAN AT LEAST 

1400
00:55:06,880 --> 00:55:08,160
START WITH THE MOST OBVIOUS WAYS

1401
00:55:08,160 --> 00:55:11,000
OF TRYING TO COLLECT THINGS, BUT

1402
00:55:11,000 --> 00:55:12,560
THEN TRY TO COMPLEMENT THAT WITH

1403
00:55:12,560 --> 00:55:15,680
MORE DETAILED MEASUREMENTS.

1404
00:55:15,680 --> 00:55:18,880
>> LENETTE, DO YOU WANT TO

1405
00:55:18,880 --> 00:55:19,120
COMMENT?

1406
00:55:19,120 --> 00:55:21,560
>> YES.

1407
00:55:21,560 --> 00:55:24,680
SO, FIRST I'LL START BY SAYING I

1408
00:55:24,680 --> 00:55:25,400
COMPLETELY AGREE WITH 

1409
00:55:25,400 --> 00:55:27,960
DR. DOTSON.

1410
00:55:27,960 --> 00:55:30,600
YOU KNOW, IT IS A SLIPPERY SLOPE

1411
00:55:30,600 --> 00:55:32,400
BECAUSE THERE ARE SOME ISSUES 

1412
00:55:32,400 --> 00:55:35,400
WITH THIS VARIABLE THAT'S BEEN 

1413
00:55:35,400 --> 00:55:35,640
CREATED.

1414
00:55:35,640 --> 00:55:35,840
RIGHT.

1415
00:55:35,840 --> 00:55:38,920
SOCIALLY CREATED.

1416
00:55:38,920 --> 00:55:41,240
I WILL SAY THAT, YOU KNOW, SO WE

1417
00:55:41,240 --> 00:55:43,720
HAVE TO AGREE THAT THERE IS A 

1418
00:55:43,720 --> 00:55:45,280
UNIQUE EXPERIENCE OF THOSE WHO 

1419
00:55:45,280 --> 00:55:47,480
WERE BROUGHT TO THIS COUNTRY AND

1420
00:55:47,480 --> 00:55:48,160
ENSLAVED, RIGHT.

1421
00:55:48,160 --> 00:55:51,720
AND SO I TALK ABOUT THAT WHEN I 

1422
00:55:51,720 --> 00:55:52,920
ASK ABOUT WHO IS ENROLLING IN 

1423
00:55:52,920 --> 00:55:55,680
THE STUDIES AND HOW DO THEY 

1424
00:55:55,680 --> 00:55:57,240
SELF-IDENTIFY.

1425
00:55:57,240 --> 00:55:58,840
AND I THINK THIS -- THE 

1426
00:55:58,840 --> 00:56:00,920
CHALLENGES THAT WE HAVE, THERE 

1427
00:56:00,920 --> 00:56:03,440
IS A CURRENT LIKE WHAT CAN WE DO

1428
00:56:03,440 --> 00:56:05,440
RIGHT NOW AND TODAY AND RIGHT 

1429
00:56:05,440 --> 00:56:08,920
NOW THAT IS THE WAY THAT THE OMB

1430
00:56:08,920 --> 00:56:10,960
IS DEFINING RACE AND THAT'S THE 

1431
00:56:10,960 --> 00:56:12,680
WAY THAT WE AS SCIENTISTS HAVE 

1432
00:56:12,680 --> 00:56:14,200
TO APPROACH THAT AND CONTINUE TO

1433
00:56:14,200 --> 00:56:17,600
ASSESS OF HOW WE CAN DO BETTER.

1434
00:56:17,600 --> 00:56:19,120
SO MY APPROACH HAS BEEN TO DO 

1435
00:56:19,120 --> 00:56:20,720
WITH WHAT WE CURRENTLY HAVE IN 

1436
00:56:20,720 --> 00:56:22,640
PLACE AND SO ASSESS IN THAT WAY 

1437
00:56:22,640 --> 00:56:24,000
AND DESCRIBE IN THAT WAY AND 

1438
00:56:24,000 --> 00:56:25,400
CONTINUE TO CHALLENGE WHAT WE 

1439
00:56:25,400 --> 00:56:29,240
HAVE AVAILABLE AND WHAT WE CAN 

1440
00:56:29,240 --> 00:56:30,720
CONTINUE TO LEARN.

1441
00:56:30,720 --> 00:56:36,000
>> SO, FRANCIS, AS YOU
LISTEN TO

1442
00:56:36,000 --> 00:56:40,480
THIS, HOW ACUTE DO YOU THINK THE

1443
00:56:40,480 --> 00:56:45,000
DANGER IS OF PEOPLE, YOU KNOW 

1444
00:56:45,000 --> 00:56:47,280
READING STUDIES THAT REPORT RACE

1445
00:56:47,280 --> 00:56:49,360
AND HAVING THAT ACTIVATE SOME OF

1446
00:56:49,360 --> 00:56:54,600
THESE HISTORICAL STEREOTYPES?

1447
00:56:54,600 --> 00:56:59,040
YOU KNOW, ARE YOU WORRIED ABOUT 

1448
00:56:59,040 --> 00:57:01,240
HEALTH DISPARITIES RESEARCH 

1449
00:57:01,240 --> 00:57:07,120
ACTUALLY REACTIVATING RACISM IN 

1450
00:57:07,120 --> 00:57:07,440
NEUROSCIENCE?

1451
00:57:07,440 --> 00:57:09,920
>> WELL, FIRST OF ALL, I
WANT TO

1452
00:57:09,920 --> 00:57:13,640
ECHO WHAT WAS JUST SAID THAT 

1453
00:57:13,640 --> 00:57:14,800
SELF-REPORT IS REALLY IMPORTANT 

1454
00:57:14,800 --> 00:57:15,760
AND POWERFUL.

1455
00:57:15,760 --> 00:57:18,840
SO IT'S NOT AND I HAD MENTIONED 

1456
00:57:18,840 --> 00:57:29,360
SELF-REPORT AND MISINTERPRETED 

1457
00:58:17,680 --> 00:58:19,720
-- WE SEE A HEADLINE THAT WE GOT

1458
00:58:19,720 --> 00:58:20,560
INVOLVED IN.

1459
00:58:20,560 --> 00:58:24,440
BUT I ALSO THINK THE SECONDARY 

1460
00:58:24,440 --> 00:58:26,080
DATA ANALYSIS CONCERN IS A REAL 

1461
00:58:26,080 --> 00:58:26,720
ONE.

1462
00:58:26,720 --> 00:58:28,480
SO FOLKS CAN GO HUNTING FOR 

1463
00:58:28,480 --> 00:58:29,720
WHATEVER DIFFERENCES THEY WANT.

1464
00:58:29,720 --> 00:58:30,840
THESE ARE NOT THE ORIGINAL 

1465
00:58:30,840 --> 00:58:33,440
PEOPLE WHO DID THE RESEARCH OR 

1466
00:58:33,440 --> 00:58:34,360
CAREFULLY COLLECTED THE DATA AND

1467
00:58:34,360 --> 00:58:41,400
THERE ARE NO RULES FOR THAT 

1468
00:58:41,400 --> 00:58:44,760
SECONDARY DATA ANALYSIS AND I 

1469
00:58:44,760 --> 00:58:45,360
THINK I'M MOSTLY CONCERNED ABOUT

1470
00:58:45,360 --> 00:58:47,000
THE NEUROSCIENCE STUFF THAT GETS

1471
00:58:47,000 --> 00:58:49,320
BEYOND A CERTAIN TYPE OF 

1472
00:58:49,320 --> 00:58:51,200
CELLULAR STRUCTURE OR A CERTAIN 

1473
00:58:51,200 --> 00:58:53,880
TYPE OF AGAIN MAYBE LESS 

1474
00:58:53,880 --> 00:58:55,200
SOCIALLY RELEVANT HEALTH AND I'M

1475
00:58:55,200 --> 00:58:56,640
MORE CONCERNED ABOUT THE SORTS 

1476
00:58:56,640 --> 00:58:59,360
OF THINGS THAT NEUROSCIENTISTS 

1477
00:58:59,360 --> 00:59:02,280
SPEND A LOT OF TIME THINKING 

1478
00:59:02,280 --> 00:59:02,720
ABOUT.

1479
00:59:02,720 --> 00:59:04,840
WE'VE TALKED ABOUT LAW 

1480
00:59:04,840 --> 00:59:06,800
NEUROSCIENCE ABOUT JUST THOSE 

1481
00:59:06,800 --> 00:59:09,120
SOCIALLY LIGHTNING BOLT TYPES OF

1482
00:59:09,120 --> 00:59:09,400
ISSUES.

1483
00:59:09,400 --> 00:59:12,160
SO I REALLY DO THINK THAT'S A 

1484
00:59:12,160 --> 00:59:13,600
SIGNIFICANT POTENTIAL ISSUE AND 

1485
00:59:13,600 --> 00:59:15,360
THAT DISINFORMATION COULD FLOW 

1486
00:59:15,360 --> 00:59:18,800
QUITE QUICKLY AND THAT WE NEED 

1487
00:59:18,800 --> 00:59:21,320
TO BE PREPARED FOR THAT.

1488
00:59:21,320 --> 00:59:22,840
>> MILDRED, WE HAVE A LOT
OF 

1489
00:59:22,840 --> 00:59:24,600
QUESTIONS HERE AND MAYBE YOU CAN

1490
00:59:24,600 --> 00:59:28,760
REFLECT ON THIS FROM THE 

1491
00:59:28,760 --> 00:59:33,440
GENOMICS DIALOGS ABOUT HOW 

1492
00:59:33,440 --> 00:59:35,280
SHOULD RESEARCHERS THEN 

1493
00:59:35,280 --> 00:59:38,480
DISTINGUISH BETWEEN BIOLOGICAL 

1494
00:59:38,480 --> 00:59:40,640
DIFFERENCES VERSUS DIFFERENCES 

1495
00:59:40,640 --> 00:59:44,120
THAT ARE A FUNCTION OF SOCIAL 

1496
00:59:44,120 --> 00:59:45,600
DETERMINANTS VERSUS DIFFERENCES 

1497
00:59:45,600 --> 00:59:47,960
THAT ARE ABOUT SOME KIND OF 

1498
00:59:47,960 --> 00:59:53,080
INTERACTION BETWEEN THOSE 

1499
00:59:53,080 --> 00:59:53,320
DOMAINS.

1500
00:59:53,320 --> 00:59:56,480
>> WELL, I THINK DR.
DOTSON AND 

1501
00:59:56,480 --> 01:00:00,440
JONES HAVE ADDRESSED THIS IN 

1502
01:00:00,440 --> 01:00:03,640
THAT I THINK, YOU KNOW, THESE 

1503
01:00:03,640 --> 01:00:04,800
ARE STANDARD KINDS OF VARIABLES 

1504
01:00:04,800 --> 01:00:07,120
THAT WE CAN USE IN RESEARCH AND 

1505
01:00:07,120 --> 01:00:13,040
SO YOU CAN'T ADDRESS THOSE BY 

1506
01:00:13,040 --> 01:00:15,360
USING MEASURES.

1507
01:00:15,360 --> 01:00:16,000
YOU WANT TO ADDRESS THE THINGS 

1508
01:00:16,000 --> 01:00:17,720
LIKE THE EFFECTS OF SOCIO 

1509
01:00:17,720 --> 01:00:20,400
ECONOMICSES OR IF YOU WANT TO 

1510
01:00:20,400 --> 01:00:21,600
ADDRESS THINGS LIKE RACISM BY 

1511
01:00:21,600 --> 01:00:23,560
CLINICIANS OR THAT KIND OF 

1512
01:00:23,560 --> 01:00:26,480
THING, YOU HAVE TO MEASURE THOSE

1513
01:00:26,480 --> 01:00:28,080
VARIABLES AND NOT USE SORT OF 

1514
01:00:28,080 --> 01:00:29,480
SELF-REPORTED RACE AS A PROXY 

1515
01:00:29,480 --> 01:00:29,800
MEASURE.

1516
01:00:29,800 --> 01:00:31,440
YOU JUST HAVE TO COLLECT THOSE 

1517
01:00:31,440 --> 01:00:34,400
OTHER KINDS OF DATA AND MAYBE 

1518
01:00:34,400 --> 01:00:35,240
THOSE ARE ENVIRONMENTAL 

1519
01:00:35,240 --> 01:00:36,720
VARIABLES OR THINGS THAT ARE 

1520
01:00:36,720 --> 01:00:38,560
DIFFICULT TO COLLECT, BUT YOU 

1521
01:00:38,560 --> 01:00:40,600
CAN'T STUDY VARIABLES THAT YOU 

1522
01:00:40,600 --> 01:00:42,600
DON'T, YOU KNOW, HAVE ACCESS TO 

1523
01:00:42,600 --> 01:00:44,920
DATA OR YOU DON'T GET ACCESS TO 

1524
01:00:44,920 --> 01:00:45,520
DATA FOR.

1525
01:00:45,520 --> 01:00:46,760
SO THERE'S THAT.

1526
01:00:46,760 --> 01:00:51,680
AND I WOULD ALSO CAUTION AGAINST

1527
01:00:51,680 --> 01:00:56,160
SORT OF RELYING TOO HEAVILY ON 

1528
01:00:56,160 --> 01:00:57,760
SELF-REPORTED RACE AS A 

1529
01:00:57,760 --> 01:00:58,040
VARIABLE.

1530
01:00:58,040 --> 01:01:01,240
THERE'S MANY STUDIES THAT HAVE 

1531
01:01:01,240 --> 01:01:03,080
SHOWN HOW THEY'RE NOT WHAT YOU 

1532
01:01:03,080 --> 01:01:04,080
THINK THEY ARE.

1533
01:01:04,080 --> 01:01:04,600
RIGHT.

1534
01:01:04,600 --> 01:01:08,440
AND SO USING THEM AS A PROXY FOR

1535
01:01:08,440 --> 01:01:10,320
EVEN SOCIO ECONOMIC OR OTHER 

1536
01:01:10,320 --> 01:01:13,360
DETERMINANTS OF HEALTH IS ALSO 

1537
01:01:13,360 --> 01:01:13,720
DANGEROUS.

1538
01:01:13,720 --> 01:01:18,000
FOR EXAMPLE, IN A LARGE STUDY OF

1539
01:01:18,000 --> 01:01:21,000
THE U.S. CENSUS FROM 20 YEARS 

1540
01:01:21,000 --> 01:01:24,800
AGO PEOPLE WHO SAID THAT THEY 

1541
01:01:24,800 --> 01:01:29,440
ARE -- THEY WERE EITHER OF 

1542
01:01:29,440 --> 01:01:32,040
INDIAN OR FROM THE COUNTRY 

1543
01:01:32,040 --> 01:01:35,000
INDIA, THIS NATIONALITY REPORTED

1544
01:01:35,000 --> 01:01:37,400
BEING WHITE, BLACK, OR ASIAN.

1545
01:01:37,400 --> 01:01:41,240
AND OTHER PEOPLE IN THEIR FAMILY

1546
01:01:41,240 --> 01:01:45,280
DID NOT REPORT THE SAME RACE AS 

1547
01:01:45,280 --> 01:01:48,080
THE PEOPLE WHO FILLED OUT THE 

1548
01:01:48,080 --> 01:01:49,760
ORIGINAL CENSUS FORM.

1549
01:01:49,760 --> 01:01:53,440
SO, YOU KNOW, SELF-REPORTS 

1550
01:01:53,440 --> 01:01:55,400
SHOULD BE TAKEN WITH A HUGE 

1551
01:01:55,400 --> 01:01:56,160
GRAIN OF SALT.

1552
01:01:56,160 --> 01:01:59,160
>> JONATHAN, I WONDER IF
YOU CAN

1553
01:01:59,160 --> 01:02:02,240
HELP US THINK ABOUT THE 

1554
01:02:02,240 --> 01:02:05,520
POTENTIAL ROLE OF COMMUNITY AND 

1555
01:02:05,520 --> 01:02:07,560
PARTICIPANT ENGAGEMENT IN 

1556
01:02:07,560 --> 01:02:09,320
ADDRESSING SOME OF THESE 

1557
01:02:09,320 --> 01:02:12,080
QUESTIONS OF WHAT CATEGORIES TO 

1558
01:02:12,080 --> 01:02:15,440
USE IN THE ANALYSIS AND HOW 

1559
01:02:15,440 --> 01:02:18,440
THOSE CATEGORIES SHOULD BE 

1560
01:02:18,440 --> 01:02:18,680
DEFINED.

1561
01:02:18,680 --> 01:02:22,200
>> YEAH.

1562
01:02:22,200 --> 01:02:25,000
SO THAT'S A BIG QUESTION AND I 

1563
01:02:25,000 --> 01:02:29,480
THINK MY STANCE ON WHAT WE'VE 

1564
01:02:29,480 --> 01:02:30,040
BEEN DISCUSSING SO FAR IS 

1565
01:02:30,040 --> 01:02:31,480
PROBABLY A BIT STRONGER THAN 

1566
01:02:31,480 --> 01:02:33,360
WHAT PEOPLE ARE SAYING HERE.

1567
01:02:33,360 --> 01:02:36,120
I DON'T THINK THAT RACE OR SOME 

1568
01:02:36,120 --> 01:02:38,160
OF THESE RATHER ARBITRARY 

1569
01:02:38,160 --> 01:02:40,360
CATEGORIES HAVE A PLACE IN OUR 

1570
01:02:40,360 --> 01:02:40,600
SCIENCE.

1571
01:02:40,600 --> 01:02:43,320
I THINK THAT THEY ARE GREAT AS 

1572
01:02:43,320 --> 01:02:45,440
POTENTIAL MARKERS FOR WHO'S 

1573
01:02:45,440 --> 01:02:50,360
PARTICIPATING IN OUR SCIENCE, 

1574
01:02:50,360 --> 01:02:52,080
BUT IN TERMS OF EXPLAINING 

1575
01:02:52,080 --> 01:02:53,560
T-THEY'RE NOT PARTICULARLY 

1576
01:02:53,560 --> 01:02:53,800
USEFUL.

1577
01:02:53,800 --> 01:02:54,920
THEY'RE USUALLY NOT WHAT YOU 

1578
01:02:54,920 --> 01:02:57,280
THINK THEY ARE, YOU KNOW, 

1579
01:02:57,280 --> 01:02:59,120
REDUCING INDIVIDUALS TO A SINGLE

1580
01:02:59,120 --> 01:03:05,400
SOCIAL IDENTIFIER EFFECTIVELY 

1581
01:03:05,400 --> 01:03:13,280
TAKES ALL OF THAT VARIANCE OF 

1582
01:03:13,280 --> 01:03:14,160
EXPOSURES AND WE'RE JUST 

1583
01:03:14,160 --> 01:03:18,520
BASICALLY ROLLING IT UP AND 

1584
01:03:18,520 --> 01:03:29,040
THROWING IT INTO OUR AND SO A 

1585
01:03:39,560 --> 01:03:42,000
LOT OF PEOPLE ROLL THIS UP UNDER

1586
01:03:42,000 --> 01:03:44,080
THE BROAD UMBRELLA OF COMMUNITY 

1587
01:03:44,080 --> 01:03:46,520
ENGAGEMENT AND I THINK WE CAN DO

1588
01:03:46,520 --> 01:03:48,200
THAT FOR PURPOSES OF DISCUSSION,

1589
01:03:48,200 --> 01:03:50,800
BUT WE HAVE TO RECOGNIZE THERE'S

1590
01:03:50,800 --> 01:03:52,520
SO MUCH VARIABILITY IN THOSE 

1591
01:03:52,520 --> 01:03:56,040
COMMUNITY VOICES AND THE WAY WE 

1592
01:03:56,040 --> 01:03:59,160
CAN INCORPORATE THEM THROUGH OUR

1593
01:03:59,160 --> 01:03:59,400
STUDIES.

1594
01:03:59,400 --> 01:04:01,880
THAT SAID, RECOGNIZING THAT 

1595
01:04:01,880 --> 01:04:06,040
FOLKS WHO DO NOT HAVE FANCY 

1596
01:04:06,040 --> 01:04:07,680
DEGREES OR A DOCTOR AT THE 

1597
01:04:07,680 --> 01:04:09,440
BEGINNING OF THEIR TITLE, 

1598
01:04:09,440 --> 01:04:11,200
RECOGNIZE THAT THOSE INDIVIDUALS

1599
01:04:11,200 --> 01:04:12,800
HAVE SUBSTANTIAL EXPERTISE IN 

1600
01:04:12,800 --> 01:04:14,080
TERMS OF THE KINDS OF 

1601
01:04:14,080 --> 01:04:15,360
POPULATIONS THAT WE'RE TRYING TO

1602
01:04:15,360 --> 01:04:18,120
ENGAGE IN OUR RESEARCH AND 

1603
01:04:18,120 --> 01:04:19,720
MAKING SURE THAT WE INCORPORATE 

1604
01:04:19,720 --> 01:04:20,880
THAT INTO OUR STUDY.

1605
01:04:20,880 --> 01:04:24,640
FOR EXAMPLE, I KNOW THAT WHEN WE

1606
01:04:24,640 --> 01:04:25,560
TALK ABOUT DIVERSITY IN 

1607
01:04:25,560 --> 01:04:28,760
SCIENTIFIC SPACES, WE TEND TO 

1608
01:04:28,760 --> 01:04:34,640
NARROW IN ON ETHNO RACIAL 

1609
01:04:34,640 --> 01:04:37,440
DISPARITIES, BUT I REALLY WANT 

1610
01:04:37,440 --> 01:04:39,040
TO RECOGNIZE THERE'S A LOT OF 

1611
01:04:39,040 --> 01:04:40,320
DIVERSITY THAT'S OFTEN MISSING 

1612
01:04:40,320 --> 01:04:41,040
FROM OUR SCIENCE.

1613
01:04:41,040 --> 01:04:43,400
I GREW UP ON A FARM IN EAST 

1614
01:04:43,400 --> 01:04:45,400
TEXAS AND FOLKS THAT I GREW UP 

1615
01:04:45,400 --> 01:04:46,960
WITH HAVE NEVER BEEN REPRESENTED

1616
01:04:46,960 --> 01:04:49,520
IN ANY KIND OF NEUROIMAGING OR 

1617
01:04:49,520 --> 01:04:51,600
CLINICAL RESEARCH STUDIES AS 

1618
01:04:51,600 --> 01:04:51,920
WELL.

1619
01:04:51,920 --> 01:04:53,640
WE DON'T HAVE GREAT WAYS OF 

1620
01:04:53,640 --> 01:04:55,520
REPRESENTING OR DEFINE WAG IT 

1621
01:04:55,520 --> 01:04:57,400
MEANS TO PARTICIPATE IF YOU ARE 

1622
01:04:57,400 --> 01:04:58,920
A RURAL RESIDENT.

1623
01:04:58,920 --> 01:05:00,680
SO MAKING SURE THAT WE HAVE 

1624
01:05:00,680 --> 01:05:02,760
SCIENCE THAT IS INCREASINGLY 

1625
01:05:02,760 --> 01:05:04,240
DECENTRALIZED, MAKING SURE THAT 

1626
01:05:04,240 --> 01:05:06,080
WE ARE BRINGING IN THOSE 

1627
01:05:06,080 --> 01:05:09,000
COMMUNITY VOICES NOT JUST AS A 

1628
01:05:09,000 --> 01:05:11,800
COMMUNITY ADVISORY BOARD, BUT 

1629
01:05:11,800 --> 01:05:13,160
WORKING WITH THEM USING MODELS 

1630
01:05:13,160 --> 01:05:16,000
LIKE THE COMMUNITY ENGAGEMENT 

1631
01:05:16,000 --> 01:05:18,760
STUDIO OR EVEN LEVERAGING THE 

1632
01:05:18,760 --> 01:05:21,360
COMMUNITY PI CATEGORY TO ENSURE 

1633
01:05:21,360 --> 01:05:24,520
THAT WE ARE DEEPLY ENTRENCHED IN

1634
01:05:24,520 --> 01:05:29,360
LOCAL COMMUNITIES, IT'S A GREAT 

1635
01:05:29,360 --> 01:05:30,040
WAY TO GET STARTEDE.

1636
01:05:30,040 --> 01:05:32,320
SO IF YOU REALLY WANT BLACK AND 

1637
01:05:32,320 --> 01:05:33,840
AFRICAN AMERICAN PEOPLE FROM A 

1638
01:05:33,840 --> 01:05:35,720
BLACK CHURCH, THEN GO TO A BLACK

1639
01:05:35,720 --> 01:05:35,960
CHURCH.

1640
01:05:35,960 --> 01:05:37,720
BUT IF YOU'RE LOOKING TO A 

1641
01:05:37,720 --> 01:05:40,800
CHURCH TO RECRUIT BLACK PEOPLE, 

1642
01:05:40,800 --> 01:05:41,400
THEN YOU'RE PUTTING THE CART 

1643
01:05:41,400 --> 01:05:42,280
BEFORE THE HORSE AND YOU'RE 

1644
01:05:42,280 --> 01:05:43,160
REALLY RESTRICTING THE RANGE OF 

1645
01:05:43,160 --> 01:05:44,640
THE KINDS OF SOCIETIES OR GROUPS

1646
01:05:44,640 --> 01:05:46,040
THAT YOU'RE GOING TO REACH.

1647
01:05:46,040 --> 01:05:48,560
SO BE THOUGHTFUL ABOUT WHO IT IS

1648
01:05:48,560 --> 01:05:51,240
THAT YOU WANT AND MAKE SURE THAT

1649
01:05:51,240 --> 01:05:52,200
THE COMMUNITY, YOU KNOW, VOICES 

1650
01:05:52,200 --> 01:05:55,920
THAT YOU REACH OUT TO REALLY 

1651
01:05:55,920 --> 01:05:58,360
REPRESENT THE DEPTH OF THAT 

1652
01:05:58,360 --> 01:06:00,240
PARTICULAR SOCIAL OR SOCIO 

1653
01:06:00,240 --> 01:06:00,880
CULTURAL CATEGORY THAT WE'RE 

1654
01:06:00,880 --> 01:06:04,600
TALKING ABOUT HERE.

1655
01:06:04,600 --> 01:06:07,800
SO THERE'S LOTS AND LOTS OF WAYS

1656
01:06:07,800 --> 01:06:08,080
TO DO THAT.

1657
01:06:08,080 --> 01:06:10,240
BUT IN TERMS OF CENTRAL, MONEY, 

1658
01:06:10,240 --> 01:06:13,800
TIME, AND EXPERTISE IN EXCHANGE 

1659
01:06:13,800 --> 01:06:15,080
FOR SOMEBODY'S WISDOM IS THE 

1660
01:06:15,080 --> 01:06:16,400
BEST WAY TO GO.

1661
01:06:16,400 --> 01:06:18,000
HONESTFULLY, IT'S NOT 

1662
01:06:18,000 --> 01:06:29,240
NEUROSCIENCE, IT'SIT'S PRETTY S.

1663
01:06:32,800 --> 01:06:35,200
THESE INDIVIDUALS YOU SHOULD 

1664
01:06:35,200 --> 01:06:36,400
FIND A VERY READY AND WILLING 

1665
01:06:36,400 --> 01:06:38,280
SET OF STAKEHOLDERS TO WORK WITH

1666
01:06:38,280 --> 01:06:40,440
ON ALL OF THESE INITIATIVES.

1667
01:06:40,440 --> 01:06:42,080
>> JONATHAN, WERE YOU
SUGGESTING

1668
01:06:42,080 --> 01:06:45,480
THAT RACE SHOULD NOT BE USED IN 

1669
01:06:45,480 --> 01:06:47,640
NEUROIMAGING RESEARCH?

1670
01:06:47,640 --> 01:06:48,040
>> YES.

1671
01:06:48,040 --> 01:06:49,800
I DON'T SEE WHY WE WOULD EVER 

1672
01:06:49,800 --> 01:06:52,400
WANT TO USE RACE WHEN WE HAVE 

1673
01:06:52,400 --> 01:06:54,800
LITERALLY HUNDREDS OF VARIABLES 

1674
01:06:54,800 --> 01:06:56,880
THAT WOULD BE -- THAT ARE BETTER

1675
01:06:56,880 --> 01:06:58,520
VALIDATED AND MUCH MORE USEFUL 

1676
01:06:58,520 --> 01:07:00,440
AND RELEVANT FOR OUR RESEARCH 

1677
01:07:00,440 --> 01:07:00,800
STUDIES.

1678
01:07:00,800 --> 01:07:04,160
WHEN YOU STRIP AWAY MY SKIN, IT 

1679
01:07:04,160 --> 01:07:05,600
HAS ABSOLUTELY NO BEARING ON MY 

1680
01:07:05,600 --> 01:07:06,200
BRAIN.

1681
01:07:06,200 --> 01:07:07,280
THE THINGS THAT DO HAVE A 

1682
01:07:07,280 --> 01:07:09,360
BEARING ON MY BRAIN ARE THE 

1683
01:07:09,360 --> 01:07:12,520
SOCIAL AND CULTURAL EXPERIENCES 

1684
01:07:12,520 --> 01:07:12,840
THAT I'VE HAD.

1685
01:07:12,840 --> 01:07:13,840
MAYBE SOME ELEMENT OF MY 

1686
01:07:13,840 --> 01:07:14,920
GENETICS OR ANCESTRY.

1687
01:07:14,920 --> 01:07:20,080
A LOT OF THE SOCIAL AND DIETARY 

1688
01:07:20,720 --> 01:07:21,720
EXPOSURES THAT I'VE HAD OVER THE

1689
01:07:21,720 --> 01:07:23,160
COURSE OF MY LIFE.

1690
01:07:23,160 --> 01:07:25,400
AND YOU CAN QUANTIFY AND 

1691
01:07:25,400 --> 01:07:26,920
OPERATIONALIZE ALL OF THESE.

1692
01:07:26,920 --> 01:07:30,480
WHAT'S BETTER YET WHSHGS I'M 

1693
01:07:30,480 --> 01:07:33,400
BUILDING A RESEARCH MODEL, YOU 

1694
01:07:33,400 --> 01:07:36,080
CAN MAKE THEM INTERACT.

1695
01:07:36,080 --> 01:07:37,400
ULTIMATELY, REDUCING ME TO JUST 

1696
01:07:37,400 --> 01:07:38,960
MY RACE RATHER THAN SOME 

1697
01:07:38,960 --> 01:07:40,760
EXPRESSION OF MY EXPOSURES AND 

1698
01:07:40,760 --> 01:07:42,240
VARIOUS MECHANISMS OF ACTION 

1699
01:07:42,240 --> 01:07:44,920
AGAIN IS THROWING AWAY LOTS AND 

1700
01:07:44,920 --> 01:07:46,680
LOTS OF VERY USEFUL VARIANTS 

1701
01:07:46,680 --> 01:07:49,640
THAT COULD HELP US UNLOCK ONE OF

1702
01:07:49,640 --> 01:07:51,240
THESE MOST COMPLEX SYSTEMS THAT 

1703
01:07:51,240 --> 01:07:52,960
WE KNOW OF IN THE ENTIRE 

1704
01:07:52,960 --> 01:07:53,240
UNIVERSE.

1705
01:07:53,240 --> 01:07:55,200
SO RACE IS NOT GOING TO GET US 

1706
01:07:55,200 --> 01:07:55,400
THERE.

1707
01:07:55,400 --> 01:07:57,280
ALL THESE OTHER VARIABLES, 

1708
01:07:57,280 --> 01:07:58,520
THINKING ABOUT SOCIAL 

1709
01:07:58,520 --> 01:08:01,520
DETERMINANTS, THINKING ABOUT 

1710
01:08:01,520 --> 01:08:02,920
QUANTIFIABLE INTERSECTIONAL 

1711
01:08:02,920 --> 01:08:03,560
ELEMENTS OF IDENTITY WILL GIVE 

1712
01:08:03,560 --> 01:08:05,480
US THE VARIANTS THAT WE NEED TO 

1713
01:08:05,480 --> 01:08:06,160
UNDERSTAND WHAT'S GOING ON IN 

1714
01:08:06,160 --> 01:08:09,320
OUR BRAINS.

1715
01:08:09,320 --> 01:08:16,640
>> SO I WONDER WHETHER
LISTENET 

1716
01:08:16,640 --> 01:08:18,640
OR VONETTA, WHAT DO YOU THINK OF

1717
01:08:18,640 --> 01:08:20,440
THE PROPOSAL THAT WE NOT USE 

1718
01:08:20,440 --> 01:08:25,240
RACE IN THIS RESEARCH?

1719
01:08:25,240 --> 01:08:27,080
YOU WERE BOTH POINTING TO IT A 

1720
01:08:27,080 --> 01:08:28,840
FAILURE IN THE LITERATURE TO, 

1721
01:08:28,840 --> 01:08:31,920
YOU KNOW, USE RACIAL CATEGORY 

1722
01:08:31,920 --> 01:08:32,560
AND ETHNIC.

1723
01:08:32,560 --> 01:08:34,440
>> YEAH.

1724
01:08:34,440 --> 01:08:37,120
SO I DEFINITELY UNDERSTAND THAT 

1725
01:08:37,120 --> 01:08:39,240
IDEA AND AS I MENTIONED WHEN I 

1726
01:08:39,240 --> 01:08:41,400
FIRST ADDRESSED THIS, I TRY TO 

1727
01:08:41,400 --> 01:08:44,080
BE COMPREHENSIVE IN WHAT I 

1728
01:08:44,080 --> 01:08:45,560
GATHER AND SO I'M KIND OF GOING 

1729
01:08:45,560 --> 01:08:47,760
A BIT OF BOTH GETTING 

1730
01:08:47,760 --> 01:08:48,640
SELF-REPORTED RACE AS WELL AS 

1731
01:08:48,640 --> 01:08:52,640
SOME OF THOSE OTHER MORE 

1732
01:08:52,640 --> 01:08:54,040
IMPORTANT MEASURES THAT JONATHAN

1733
01:08:54,040 --> 01:08:55,400
WAS TALKING ABOUT.

1734
01:08:55,400 --> 01:08:57,680
SO FOR ME AS A CLINICIAN TO BE 

1735
01:08:57,680 --> 01:08:59,120
HONEST, I THINK ABOUT THE 

1736
01:08:59,120 --> 01:09:00,680
UTILITY OF BEING ABLE TO SPEAK 

1737
01:09:00,680 --> 01:09:02,000
TO SOMEONE FROM CERTAIN GROUPS 

1738
01:09:02,000 --> 01:09:03,600
AND SAY, HEY, THIS RESEARCH HAS 

1739
01:09:03,600 --> 01:09:04,720
BEEN DONE AND PEOPLE WHO 

1740
01:09:04,720 --> 01:09:09,520
IDENTIFY THE SAME AS YOU.

1741
01:09:09,520 --> 01:09:17,600
I THINK ABOUT THE UTILITY OF 

1742
01:09:17,600 --> 01:09:21,640
BEING ABLE TO TARGET BASED ON 

1743
01:09:21,640 --> 01:09:22,800
SELF-IDENTIFYING RACE FOR 

1744
01:09:22,800 --> 01:09:23,800
RECRUITING PEOPLE FOR RESEARCH.

1745
01:09:23,800 --> 01:09:25,920
SO I DO HAVE A HESITATION TO DO 

1746
01:09:25,920 --> 01:09:27,480
AWAY WITH IT.

1747
01:09:27,480 --> 01:09:29,160
I DO AGREE IT IS LESS USEFUL 

1748
01:09:29,160 --> 01:09:30,720
FROM A PURE SCIENTIFIC 

1749
01:09:30,720 --> 01:09:31,080
STANDPOINT.

1750
01:09:31,080 --> 01:09:32,840
I THINK WHAT IT COMES DOWN TO 

1751
01:09:32,840 --> 01:09:35,080
AND THEN I'LL STOP AND NOT 

1752
01:09:35,080 --> 01:09:36,480
RAMBLE TOO MUCH IS IT DEPENDS ON

1753
01:09:36,480 --> 01:09:37,480
YOUR FOCUS.

1754
01:09:37,480 --> 01:09:39,000
IF WE'RE TALKING ABOUT 

1755
01:09:39,000 --> 01:09:41,560
SCIENTIFIC INTEGRITY, OBVIOUSLY,

1756
01:09:41,560 --> 01:09:42,200
I THINK RACE IS NOT THE WAY TO 

1757
01:09:42,200 --> 01:09:42,360
GO.

1758
01:09:42,360 --> 01:09:43,760
WE'RE TALKING ABOUT REACHING 

1759
01:09:43,760 --> 01:09:44,560
COMMUNITIES AND BEING ABLE TO 

1760
01:09:44,560 --> 01:09:47,520
SHARE OUR INFORMATION TO GROUPS 

1761
01:09:47,520 --> 01:09:48,720
OF PEOPLE WHERE THE RESEARCH 

1762
01:09:48,720 --> 01:09:50,160
REPRESENTS THEM, I THINK IT'S 

1763
01:09:50,160 --> 01:09:53,080
HARD TO SAY I HAVE THIS COMPLEX 

1764
01:09:53,080 --> 01:09:54,800
MATRIX OF ALL THESE DIFFERENT 

1765
01:09:54,800 --> 01:09:55,720
VARIABLES THAT REPRESENT YOU 

1766
01:09:55,720 --> 01:09:57,880
VERSUS SAYING YOU'RE A BLACK 

1767
01:09:57,880 --> 01:09:59,960
OLDER ADULT CONCERNED ABOUT 

1768
01:09:59,960 --> 01:10:02,760
THEIR DISEASE AND MEMORY AND 

1769
01:10:02,760 --> 01:10:03,840
THIS RESEARCH HAS BEEN DONE WHO 

1770
01:10:03,840 --> 01:10:05,680
IDENTIFY THE SAME AS YOU AND 

1771
01:10:05,680 --> 01:10:07,560
IT'S RELEVANT TO YOU.

1772
01:10:07,560 --> 01:10:11,880
SO IT'S SOMEWHERE IN THE MIDDLE 

1773
01:10:11,880 --> 01:10:16,400
FOR ME.

1774
01:10:16,400 --> 01:10:18,280
>> I'LL JUST BRIEFLY ADD
AGAIN I

1775
01:10:18,280 --> 01:10:19,960
THINK IT DEPENDS ON WHAT YOU'RE 

1776
01:10:19,960 --> 01:10:20,360
TRYING TO DO.

1777
01:10:20,360 --> 01:10:26,560
SO IF YOU'RE TRYING TO DESCRIBE 

1778
01:10:26,560 --> 01:10:27,920
FINDING BLACK -- DESCRIBING 

1779
01:10:27,920 --> 01:10:29,200
BLACK AND WHITE DIFFERENCES AT 

1780
01:10:29,200 --> 01:10:31,440
THIS POINT IS NOT GOING TO BE 

1781
01:10:31,440 --> 01:10:31,680
HELPFUL.

1782
01:10:31,680 --> 01:10:33,400
THAT'S NOT GOING TO HELP MOVE 

1783
01:10:33,400 --> 01:10:37,040
OUR SCIENCE FORWARD, BUT WHEN 

1784
01:10:37,040 --> 01:10:38,760
YOU'RE IDENTIFYING THOSE THAT 

1785
01:10:38,760 --> 01:10:40,400
HAVE BEEN HISTORICALLY BEEN LEFT

1786
01:10:40,400 --> 01:10:42,080
OUT OF RESEARCH, HOW ARE YOU 

1787
01:10:42,080 --> 01:10:43,280
GOING TO IDENTIFY THEM.

1788
01:10:43,280 --> 01:10:44,320
SO I THINK THAT'S IMPORTANT TO 

1789
01:10:44,320 --> 01:10:45,280
THINK ABOUT.

1790
01:10:45,280 --> 01:10:47,320
SO WHEN YOU ARE -- AFTER YOU 

1791
01:10:47,320 --> 01:10:50,520
HAVE COLLECTED THIS RICH DATA OF

1792
01:10:50,520 --> 01:10:53,440
A VARIETY OF VARIABLES INCLUDING

1793
01:10:53,440 --> 01:10:55,160
RACE AND OTHER SOCIAL ECONOMIC 

1794
01:10:55,160 --> 01:10:56,400
DETERMINANTS, HOW ARE YOU GOING 

1795
01:10:56,400 --> 01:10:57,600
TO DESCRIBE YOUR FINDINGS?

1796
01:10:57,600 --> 01:10:59,200
AND I THINK THAT'S THE REALLY 

1797
01:10:59,200 --> 01:11:00,760
IMPORTANT PART OF WHAT WE'RE 

1798
01:11:00,760 --> 01:11:03,360
GIVING BACK TO THE SCIENTIFIC 

1799
01:11:03,360 --> 01:11:03,600
COMMUNITY.

1800
01:11:03,600 --> 01:11:06,720
SO TO DESCRIBE, I DID A STUDY 

1801
01:11:06,720 --> 01:11:07,520
WITH BLACK WOMEN WOULD BE 

1802
01:11:07,520 --> 01:11:08,960
COMPLETELY MISSING A MARK 

1803
01:11:08,960 --> 01:11:09,600
INSTEAD OF DESCRIBING SOME OF 

1804
01:11:09,600 --> 01:11:12,120
THE OTHER THINGS THAT WE HAVE 

1805
01:11:12,120 --> 01:11:13,000
COLLECTED.

1806
01:11:13,000 --> 01:11:13,360
RIGHT.

1807
01:11:13,360 --> 01:11:17,240
WE TALKED ABOUT AGE, SOCIO 

1808
01:11:17,240 --> 01:11:18,680
ECONOMIC STATUS, WHERE THEY 

1809
01:11:18,680 --> 01:11:20,400
LIVE, ENVIRONMENTAL THINGS, I 

1810
01:11:20,400 --> 01:11:21,320
THINK THOSE THINGS ARE 

1811
01:11:21,320 --> 01:11:21,960
IMPORTANT.

1812
01:11:21,960 --> 01:11:24,560
I THINK THAT'S A COMBINATION OF 

1813
01:11:24,560 --> 01:11:25,520
AN APPROACH WE'RE TALKING ABOUT 

1814
01:11:25,520 --> 01:11:25,960
TODAY.

1815
01:11:25,960 --> 01:11:28,000
SO WE HAVE TO START AT A CERTAIN

1816
01:11:28,000 --> 01:11:28,600
POINT.

1817
01:11:28,600 --> 01:11:30,720
BUT WHEN WE GET BACK TO THE 

1818
01:11:30,720 --> 01:11:31,720
SCIENTIFIC COMMUNITY, SHOULD 

1819
01:11:31,720 --> 01:11:33,120
DEFINITELY BE MORE RICH THAN 

1820
01:11:33,120 --> 01:11:35,400
JUST DESCRIBING WHAT I FOUND IN 

1821
01:11:35,400 --> 01:11:37,800
AFRICAN AMERICAN WOMEN ARE 

1822
01:11:37,800 --> 01:11:39,720
DESCRIBING BLACK WHITE 

1823
01:11:39,720 --> 01:11:40,040
DIFFERENCES.

1824
01:11:40,040 --> 01:11:40,360
>> THANK YOU.

1825
01:11:40,360 --> 01:11:41,640
THERE'S SOME QUESTIONS AND MAYBE

1826
01:11:41,640 --> 01:11:44,600
IN OUR REMAINING TIME, I'D LIKE 

1827
01:11:44,600 --> 01:11:46,840
TO SORT OF SHIFT IN THIS 

1828
01:11:46,840 --> 01:11:54,440
DIRECTION TO WHAT CAN BE DONE.

1829
01:11:54,440 --> 01:11:57,040
ONE QUESTION IS ASKING HOW 

1830
01:11:57,040 --> 01:11:59,160
IMPORTANT IS IT TO ENHANCE THE 

1831
01:11:59,160 --> 01:12:02,600
DIVERSITY OF RESEARCH TEAMS IN 

1832
01:12:02,600 --> 01:12:05,000
NEUROIMAGING RESEARCH IN TERMS 

1833
01:12:05,000 --> 01:12:09,440
OF BENEFITS TO THE STUDY, 

1834
01:12:09,440 --> 01:12:11,200
RECRUITMENT, RETENTION, 

1835
01:12:11,200 --> 01:12:13,240
UNDERSTANDING THE RESULTS 

1836
01:12:13,240 --> 01:12:14,040
PRESENTING THEM.

1837
01:12:14,040 --> 01:12:17,240
AND HOW DO WE PROMOTE THE 

1838
01:12:17,240 --> 01:12:24,280
DIVERSITY OF TEAMS?

1839
01:12:24,280 --> 01:12:27,920
MAYBE JONATHAN, DO YOU WANT TO 

1840
01:12:27,920 --> 01:12:30,120
KICK OFF ON THAT?

1841
01:12:30,120 --> 01:12:30,840
>> SURE.

1842
01:12:30,840 --> 01:12:34,920
I WILL SAY A FEW THINGS THAT ARE

1843
01:12:34,920 --> 01:12:35,360
HELPFUL TO REMEMBER.

1844
01:12:35,360 --> 01:12:36,040
OFTEN TIMES WHEN WE TALK ABOUT 

1845
01:12:36,040 --> 01:12:40,960
THE DIVERSITY OF OUR WORK FORCE,

1846
01:12:40,960 --> 01:12:41,800
THE IMMEDIATE PUSH BACK IS THE 

1847
01:12:41,800 --> 01:12:42,320
PIPELINE.

1848
01:12:42,320 --> 01:12:43,960
JUST ISN'T DIVERSE ENOUGH.

1849
01:12:43,960 --> 01:12:47,000
WE NEED TO GO BACK TO 

1850
01:12:47,000 --> 01:12:49,840
KINDERGARTENERS OR ZYGOTES AND 

1851
01:12:49,840 --> 01:12:52,640
BUILD SOME PIPELINES TO ENSURE 

1852
01:12:52,640 --> 01:12:54,600
WE WILL HAVE THE WORK WE NEED.

1853
01:12:54,600 --> 01:12:57,840
SURE, DO THAT, BUT THAT DOESN'T 

1854
01:12:57,840 --> 01:12:58,360
GET YOU OFF THE HOOK NOW.

1855
01:12:58,360 --> 01:13:01,360
THERE'S TONS OF THINGS WE CAN DO

1856
01:13:01,360 --> 01:13:01,880
NOW.

1857
01:13:01,880 --> 01:13:03,920
THE NUMBER ONE THING WE CAN DO 

1858
01:13:03,920 --> 01:13:05,920
NOW THAT STARTS BEFORE 

1859
01:13:05,920 --> 01:13:08,320
CONCEPTION IS REALLY MAKING SURE

1860
01:13:08,320 --> 01:13:10,320
THAT WE BROADEN WHAT IT MEANS TO

1861
01:13:10,320 --> 01:13:11,640
HAVE PARTICIPATION ON OUR 

1862
01:13:11,640 --> 01:13:13,400
RESEARCH STUDIES.

1863
01:13:13,400 --> 01:13:16,280
WHAT I MEAN WHEN I TALK ABOUT 

1864
01:13:16,280 --> 01:13:18,160
CO-CREATION AND CO-DESIGN.

1865
01:13:18,160 --> 01:13:21,400
SO, AGAIN, IF WE ARE ONLY 

1866
01:13:21,400 --> 01:13:23,240
PRIORITIZING THE EXPERTISE OF 

1867
01:13:23,240 --> 01:13:24,360
INDIVIDUALS WITH ADVANCED 

1868
01:13:24,360 --> 01:13:26,520
DEGREES, THEN, YES, WE'RE GOING 

1869
01:13:26,520 --> 01:13:28,880
TO HAVE TO WAIT DECADES FOR THE 

1870
01:13:28,880 --> 01:13:30,160
PIPELINE TO PRODUCE THE KINDS OF

1871
01:13:30,160 --> 01:13:31,440
INDIVIDUALS WE'RE LOOKING FOR 

1872
01:13:31,440 --> 01:13:33,720
AND I WILL ARGUE IT'S STILL NOT 

1873
01:13:33,720 --> 01:13:34,840
GOING TO BE QUITE RIGHT.

1874
01:13:34,840 --> 01:13:37,800
WHY DON'T YOU LOOK FOR LOCAL 

1875
01:13:37,800 --> 01:13:38,200
EXPERTISE?

1876
01:13:38,200 --> 01:13:41,160
WHY DON'T YOU BRING ON LOCAL 

1877
01:13:41,160 --> 01:13:45,560
HIGH SCHOOL VOICES, COLLEGE 

1878
01:13:45,560 --> 01:13:47,880
VOICES, GRADUATES, 

1879
01:13:47,880 --> 01:13:49,320
PROFESSIONALS, CHURCH LEADERS, 

1880
01:13:49,320 --> 01:13:52,200
GREEK SOCIETY LEADERS, EVENTS OR

1881
01:13:52,200 --> 01:13:53,640
PLANNERS AND BRING THEM ON TO 

1882
01:13:53,640 --> 01:13:55,920
OUR RESEARCH STUDIESES AS, YOU 

1883
01:13:55,920 --> 01:13:58,400
KNOW, AS BEING INTEGRAL TO OUR 

1884
01:13:58,400 --> 01:13:59,880
RESEARCH TEAMS.

1885
01:13:59,880 --> 01:14:00,880
NOW THESE ARE INDIVIDUALS THAT 

1886
01:14:00,880 --> 01:14:03,760
CAN SERVE AS AMBASSADORS, THEY 

1887
01:14:03,760 --> 01:14:05,480
CAN SERVE AS ADVOCATES AND THEY 

1888
01:14:05,480 --> 01:14:11,160
CAN OPEN DOORS THAT ARE NOT 

1889
01:14:11,160 --> 01:14:15,480
OTHERWISE POSSIBLE WE HAVE NOT 

1890
01:14:15,480 --> 01:14:17,600
LOUGT OF IN SCIENTIFIC RESEARCH.

1891
01:14:17,600 --> 01:14:19,600
HOWEVER, IT IS NECESSARY.

1892
01:14:19,600 --> 01:14:21,480
WE HAVE VERY CONVINCINGLY 

1893
01:14:21,480 --> 01:14:24,680
EXPLAINED AND LACK OF DIVERSION 

1894
01:14:24,680 --> 01:14:25,280
AND INCLUSION IN OUR RESEARCH 

1895
01:14:25,280 --> 01:14:26,920
THREATENSES ALL FOUR OF THE 

1896
01:14:26,920 --> 01:14:34,080
MAJOR VALIDITIES THAT UNDERLINE 

1897
01:14:34,080 --> 01:14:34,680
CAUSAL REASONING IN OUR CLINICAL

1898
01:14:34,680 --> 01:14:34,960
RESEARCH.

1899
01:14:34,960 --> 01:14:35,480
JUST BECAUSE THESE ARE 

1900
01:14:35,480 --> 01:14:36,080
INDIVIDUALS THAT DON'T HAVE 

1901
01:14:36,080 --> 01:14:37,400
FANCY DEGREES AT THE END OF 

1902
01:14:37,400 --> 01:14:43,240
THEIR NAME, DOESN'T MEAN THERE'S

1903
01:14:43,240 --> 01:14:43,880
NOT A REALLY WELL-DESERVED SPOT 

1904
01:14:43,880 --> 01:14:44,320
ON OUR STUDY TEAMS.

1905
01:14:44,320 --> 01:14:46,960
I WOULD SAY BROADEN YOUR MIND, 

1906
01:14:46,960 --> 01:14:49,360
THINK OUTSIDE THE BOX IN TERMS 

1907
01:14:49,360 --> 01:14:50,720
OF PARTICIPATION BENEFITS AND 

1908
01:14:50,720 --> 01:14:52,160
DESIGN AND YOU'LL HAVE THE 

1909
01:14:52,160 --> 01:14:53,800
DIVERSITY YOU'RE LOOKING FOR.

1910
01:14:53,800 --> 01:14:55,240
I'LL STOP THERE BECAUSE I THINK 

1911
01:14:55,240 --> 01:14:57,480
THE REST OF THIS ESTEEMED PANEL 

1912
01:14:57,480 --> 01:15:00,280
HAS PLENTY TO SAY ON THE TOPIC.

1913
01:21:27,280 --> 01:21:28,880
>> I THINK WE CAN LEARN
FROM

1914
01:21:28,880 --> 01:21:29,480
GENOMICS.

1915
01:21:29,480 --> 01:21:32,560
THERE IS A LOT OF WRITING DONE

1916
01:21:32,560 --> 01:21:36,400
THERE THAT IS AVAILABLE FOR

1917
01:21:36,400 --> 01:21:36,800
STUDY.

1918
01:21:36,800 --> 01:21:40,640
>> GREAT, JONATHAN.

1919
01:21:40,640 --> 01:21:42,840
>> I THINK WE CAN TAKE A
LACK OF

1920
01:21:42,840 --> 01:21:44,040
DIVERSITY REPRESENTATION IN OUR

1921
01:21:44,040 --> 01:21:45,760
STUDIES AS AN OMNIBUS BILL.

1922
01:21:45,760 --> 01:21:47,600
IT IS A GOOD SIGN THERE IS

1923
01:21:47,600 --> 01:21:49,760
SOMETHING AMISS IN OUR SCIENCE.

1924
01:21:49,760 --> 01:21:51,560
IT MAY NOT BE A MATTER OF

1925
01:21:51,560 --> 01:21:52,280
SELECTION.

1926
01:21:52,280 --> 01:21:56,200
SO TAKE A LACK OF DIVERSITY AND

1927
01:21:56,200 --> 01:21:57,960
RECOGNIZE THAT THAT IS ABERRANT

1928
01:21:57,960 --> 01:21:58,920
BEHAVIOR THAT SHOULD BE

1929
01:21:58,920 --> 01:21:59,560
MITIGATED.

1930
01:21:59,560 --> 01:22:01,960
WE IMMEDIATE TO NORMALIZE

1931
01:22:01,960 --> 01:22:03,160
DIVERSITY AND REPRESENTATION AT

1932
01:22:03,160 --> 01:22:05,400
EVERY LEVEL OF OUR RESEARCH.

1933
01:22:05,400 --> 01:22:06,920
WONDERFUL.

1934
01:22:06,920 --> 01:22:10,200
THANK YOU ALL FOR A GREAT PANEL

1935
01:22:10,200 --> 01:22:12,160
AND THANKS TO THE LISTENERS.

1936
01:22:12,160 --> 01:22:31,600
WONDERFUL QUESTIONS.

1937
01:22:31,600 --> 01:22:33,320
>>IT'S MY PLEASURE TO BE
HERE 

1938
01:22:33,320 --> 01:22:36,720
WITH YOU AND MY COLLEAGUES IN 

1939
01:22:36,720 --> 01:22:41,880
THIS SYMPOSIUM.

1940
01:22:41,880 --> 01:22:43,400
IN THE FIRST PART OF THE 

1941
01:22:43,400 --> 01:22:46,880
SYMPOSIUM WE'RE GOING TO BE 

1942
01:22:46,880 --> 01:22:48,720
TALKING ABOUT THE BRAIN 

1943
01:22:48,720 --> 01:22:49,640
NEUROETHICS AND THE WORK DOING 

1944
01:22:49,640 --> 01:22:51,880
WITHIN OUR GUIDELINES.

1945
01:22:51,880 --> 01:22:59,800
SO I'LL DO A SHORT INTRODUCTION 

1946
01:22:59,800 --> 01:23:01,360
ABOUT THE OVERALL-WORK WE'VE 

1947
01:23:01,360 --> 01:23:03,920
BEEN DOING AND MY COLLEAGUE WILL

1948
01:23:03,920 --> 01:23:05,280
INTRODUCE WHAT THEY DO IN 

1949
01:23:05,280 --> 01:23:05,920
MILITARY APPLICATION AND THEN 

1950
01:23:05,920 --> 01:23:11,600
SEE A VIDEO OF MY COLLEAGUE 

1951
01:23:11,600 --> 01:23:13,600
JACOB ROBINSON TALKING ABOUT THE

1952
01:23:13,600 --> 01:23:15,640
MEDICAL APPLICATIONS.

1953
01:23:15,640 --> 01:23:16,760
SO FIRST OF ALL WE'VE BEEN PART 

1954
01:23:16,760 --> 01:23:19,440
OF THE WORK WE'VE BEEN DOING IS 

1955
01:23:19,440 --> 01:23:23,520
TO FOSTER AN INTERDISCIPLINARY 

1956
01:23:23,520 --> 01:23:24,720
CONVERSATION ON SOCIAL, CULTURAL

1957
01:23:24,720 --> 01:23:26,280
ISSUES AROUND THE USE AND 

1958
01:23:26,280 --> 01:23:28,720
DEVELOPMENT OF TECHNOLOGY FOR 

1959
01:23:28,720 --> 01:23:33,720
DIFFERENT DOMAIN APPLICATIONS.

1960
01:23:33,720 --> 01:23:37,560
FOR THOSE THAT ARE NOT AWARE OR 

1961
01:23:37,560 --> 01:23:40,280
HAVEN'T HEARD ABOUT IGGG IT'S 

1962
01:23:40,280 --> 01:23:43,960
ONE OF THE LARGEST ORGANIZATIONS

1963
01:23:43,960 --> 01:23:50,000
FOR ELECTRICAL ENGINEERS AND 

1964
01:23:50,000 --> 01:23:52,720
HAVE DIFFERENT GROUPS AND IEEE 

1965
01:23:52,720 --> 01:23:58,480
IS SUPPORTED BY DIFFERENT 

1966
01:23:58,480 --> 01:24:01,240
SOCIETIES AS YOU CAN SEE IN THE 

1967
01:24:01,240 --> 01:24:01,760
SLIDE.

1968
01:24:01,760 --> 01:24:03,720
THE POINT IS THERE'S A BIG 

1969
01:24:03,720 --> 01:24:05,400
EMPHASIS ON SUPPORTING THE WORK 

1970
01:24:05,400 --> 01:24:12,120
THAT HAPPENS IN THIS PARTICULAR 

1971
01:24:12,120 --> 01:24:13,600
TECHNICAL SOCIETY.

1972
01:24:13,600 --> 01:24:18,960
THERE'S A COMMITTEE I HAVE THE 

1973
01:24:18,960 --> 01:24:26,000
PRIVILEGE OF SHARING IN 2018 WE 

1974
01:24:26,000 --> 01:24:32,240
HAD OUR FIRST SUBCOMMITTEE 

1975
01:24:32,240 --> 01:24:36,400
MEETING AND WE WERE WORKING ON 

1976
01:24:36,400 --> 01:24:37,880
CREATING GUIDELINES HOW TO 

1977
01:24:37,880 --> 01:24:48,400
CREATE GUIDELINES FOR ENGINEERS.

1978
01:24:49,360 --> 01:24:55,920
WE'VE BEEN WORKING WITHIN THE 

1979
01:24:55,920 --> 01:24:56,280
GUIDELINES.

1980
01:24:56,280 --> 01:24:58,000
AND I WANT TO HIGHLIGHT WE'RE 

1981
01:24:58,000 --> 01:25:00,480
FORTUNATE TO HAVE A GROUP OF 

1982
01:25:00,480 --> 01:25:06,520
INTERNATIONAL VOLUNTEER FOR THE 

1983
01:25:06,520 --> 01:25:08,280
DIFFERENT WORKING GROUP I'LL 

1984
01:25:08,280 --> 01:25:09,120
MENTION IN MINUTES.

1985
01:25:09,120 --> 01:25:11,400
EACH WORKING GROUP IS INTEGRATED

1986
01:25:11,400 --> 01:25:16,720
BY ADD LEAST ONE ETHICAL LEAD 

1987
01:25:16,720 --> 01:25:17,280
AND AT LEAST ONE TECHNOLOGY 

1988
01:25:17,280 --> 01:25:21,200
PERSON.

1989
01:25:21,200 --> 01:25:23,560
TRYING TO KEEP INTERDISCIPLINARY

1990
01:25:23,560 --> 01:25:24,960
WORK IN THE WORK WE DO.

1991
01:25:24,960 --> 01:25:26,160
FIRST I WANT TO TALK ABOUT WHY 

1992
01:25:26,160 --> 01:25:30,560
WE THINK OUR WORK IS IMPORTANT.

1993
01:25:30,560 --> 01:25:32,080
THIS IS A COUPLE OTHER 

1994
01:25:32,080 --> 01:25:33,360
GUIDELINES AND FRAMEWORKS 

1995
01:25:33,360 --> 01:25:33,680
AROUND.

1996
01:25:33,680 --> 01:25:37,120
WE HAVE GUIDELINES FROM THE 

1997
01:25:37,120 --> 01:25:37,840
OECD.

1998
01:25:37,840 --> 01:25:43,720
WE HAVE NIH GUIDELINES, THE IBI 

1999
01:25:43,720 --> 01:25:46,760
GLOBAL NEUROETHICS HAVE 

2000
01:25:46,760 --> 01:25:50,000
QUESTIONS TO GUIDE NEURO 

2001
01:25:50,000 --> 01:25:50,360
TECHNOLOGIES.

2002
01:25:50,360 --> 01:25:51,760
WHY WOULD SOMETHING THAT COMES 

2003
01:25:51,760 --> 01:25:54,640
FROM IEEE IS IMPORTANT?

2004
01:25:54,640 --> 01:25:56,720
FIRST I WANT TO PRESENT THIS 

2005
01:25:56,720 --> 01:25:58,760
SLIDE FROM A QUESTION WE RAIN 

2006
01:25:58,760 --> 01:26:03,960
OUR WORKSHOP TOGETHER WITH THE 

2007
01:26:03,960 --> 01:26:08,280
INTERNATIONAL BRAIN INITIATIVE 

2008
01:26:08,280 --> 01:26:11,680
AND SOME PARTICIPANTS FROM JAPAN

2009
01:26:11,680 --> 01:26:12,720
BRING NEUROETHICS.

2010
01:26:12,720 --> 01:26:16,720
WE ASKED WHAT DO YOU THINK -- DO

2011
01:26:16,720 --> 01:26:19,880
YOU THINK NEUROENGINEERS FACE 

2012
01:26:19,880 --> 01:26:22,520
DIFFERENT ETHICAL ISSUES THAN 

2013
01:26:22,520 --> 01:26:24,720
NEUROSCIENTISTS.

2014
01:26:24,720 --> 01:26:32,280
THERE'S A DIFSMALL NUMBER OF UNE

2015
01:26:32,280 --> 01:26:35,040
VERSUS YES AND A BIG DIFFERENCE 

2016
01:26:35,040 --> 01:26:35,600
IN NO.

2017
01:26:35,600 --> 01:26:36,720
THERE'S DIFFERENT CONCERNS 

2018
01:26:36,720 --> 01:26:43,600
CONSIDERING THE APPLICATION OF 

2019
01:26:43,600 --> 01:26:44,680
TECHNOLOGY AND ANOTHER PERSON 

2020
01:26:44,680 --> 01:26:46,120
SAID THE WEIGHT MIGHT BE 

2021
01:26:46,120 --> 01:26:47,880
DIFFERENT AND ANOTHER PERSON 

2022
01:26:47,880 --> 01:26:50,280
SAID A NEUROENGINEER NEEDS MORE 

2023
01:26:50,280 --> 01:26:52,640
SOCIETAL IMPLICATIONS FOR 

2024
01:26:52,640 --> 01:26:54,200
TECHNOLOGY TO COMMERCIAL 

2025
01:26:54,200 --> 01:26:56,280
INDUSTRIAL PROCESSES.

2026
01:26:56,280 --> 01:26:58,720
THAT GIVES A SENSE THEY BE IN 

2027
01:26:58,720 --> 01:27:03,760
THE UNIQUE ISSUES TO BE 

2028
01:27:03,760 --> 01:27:05,320
DISCUSSED WITH GROUPS OF 

2029
01:27:05,320 --> 01:27:06,760
NEUROENGINEERS OR DEVELOPERS.

2030
01:27:06,760 --> 01:27:08,280
THE SCOPE OF OUR FRAMEWORK HAS 

2031
01:27:08,280 --> 01:27:10,760
BEEN TECHNOLOGIES AND DEVICES SO

2032
01:27:10,760 --> 01:27:14,760
WE DON'T TALK ABOUT 

2033
01:27:14,760 --> 01:27:16,440
PHARMACEUTICALS OR GENETIC 

2034
01:27:16,440 --> 01:27:16,720
ENGINEERING.

2035
01:27:16,720 --> 01:27:19,400
WE HOPE IT'S BEEN THE FOCUS AND 

2036
01:27:19,400 --> 01:27:21,520
THE AIM IS NOT TO RECREATE WHAT 

2037
01:27:21,520 --> 01:27:23,040
OTHERS HAVE SAID BUT HOW DO WE 

2038
01:27:23,040 --> 01:27:25,360
BUILD AND CONTINUE MOVING THE 

2039
01:27:25,360 --> 01:27:28,320
WORK OTHER GROUPS HAVE DONE 

2040
01:27:28,320 --> 01:27:29,920
RELATIVE TO BRINGING TO THOSE 

2041
01:27:29,920 --> 01:27:32,800
NOT AWARE OF THE GUIDELINES 

2042
01:27:32,800 --> 01:27:35,240
BECAUSE IT'S NOT WITHIN THEIR 

2043
01:27:35,240 --> 01:27:36,720
COMMUNITIES THEY GENERALLY 

2044
01:27:36,720 --> 01:27:46,960
INTERACT WITH.

2045
01:27:54,440 --> 01:27:57,440
YOU CAN SEE THE MAJORITY OF 

2046
01:27:57,440 --> 01:27:59,560
FOLKS SAID I'M AWARE OF THEM AND

2047
01:27:59,560 --> 01:28:01,920
THERE'S AWARENESS BUT NOT REALLY

2048
01:28:01,920 --> 01:28:02,120
USAGE.

2049
01:28:02,120 --> 01:28:04,000
A FEW SAY YES THEY'RE AWARE AND 

2050
01:28:04,000 --> 01:28:08,320
USE IT AND JUST A FEW SAID NO, 

2051
01:28:08,320 --> 01:28:17,320
THEY'RE NOT AWARE.

2052
01:28:17,320 --> 01:28:19,240
WE'RE TRYING TO UNDERSTAND WHY 

2053
01:28:19,240 --> 01:28:20,240
THERE'S NOT LARGE ADOPTION 

2054
01:28:20,240 --> 01:28:22,160
RAISING THE QUESTION OF DO WE 

2055
01:28:22,160 --> 01:28:24,480
NEED ANOTHER FRAMEWORK.

2056
01:28:24,480 --> 01:28:27,520
MOTIVATIONS HAVE BEEN HAVE A 

2057
01:28:27,520 --> 01:28:30,400
BROADER AUDIENCE AND DEVELOPERS 

2058
01:28:30,400 --> 01:28:32,800
AND NEUROENGINEERS WORKING WITH 

2059
01:28:32,800 --> 01:28:34,400
THE TECHNOLOGY.

2060
01:28:34,400 --> 01:28:35,360
AND CONTRIBUTE MOVING 

2061
01:28:35,360 --> 01:28:36,560
TECHNOLOGIES INTO APPLICATIONS 

2062
01:28:36,560 --> 01:28:38,400
BEYOND MEDICAL ONES AND THEIR 

2063
01:28:38,400 --> 01:28:41,000
RESPONSIBLE MANNER.

2064
01:28:41,000 --> 01:28:44,200
SOME HAVE FOCUSES ON MORE 

2065
01:28:44,200 --> 01:28:46,640
MEDICAL APPLICATIONS AND 

2066
01:28:46,640 --> 01:28:47,600
GUIDELINES ARE TALKING TO A 

2067
01:28:47,600 --> 01:28:52,080
LARGER HOST OF APPLICATIONS OF 

2068
01:28:52,080 --> 01:28:52,880
NEUROTECHNOLOGY AND TO INCLUDE 

2069
01:28:52,880 --> 01:28:55,280
MORE CULTURAL IMPLICATIONS OF 

2070
01:28:55,280 --> 01:28:59,680
THE USE AND DEVELOPMENT OF NEWER

2071
01:28:59,680 --> 01:29:00,480
TECHNOLOGY.

2072
01:29:00,480 --> 01:29:05,320
HOW CAN WE ASSIGN IMPROVE 

2073
01:29:05,320 --> 01:29:06,960
STEWARDSHIP AND THERE'S WAYS TO 

2074
01:29:06,960 --> 01:29:09,960
DO THAT AND LOOKING AT WORK 

2075
01:29:09,960 --> 01:29:14,280
SHOPS AND LOOKING AT GREATER 

2076
01:29:14,280 --> 01:29:19,160
GUIDELINES AND USE CASES AND THE

2077
01:29:19,160 --> 01:29:22,640
LAST IS TO SAY THE NEXT THING 

2078
01:29:22,640 --> 01:29:24,720
THAT WE'RE FOCUSSING ON AND 

2079
01:29:24,720 --> 01:29:27,880
CREATING A SERIES OF SOCIO 

2080
01:29:27,880 --> 01:29:28,760
TECHNICAL STANDARDS FOR TODAY 

2081
01:29:28,760 --> 01:29:32,280
WE'LL FOCUS ON THE WORK WE'VE 

2082
01:29:32,280 --> 01:29:42,600
DONE FOR THE GUIDELINES.

2083
01:29:42,600 --> 01:29:45,960
AS THE PRECEDENCE AND THERE'S 

2084
01:29:45,960 --> 01:29:48,720
ENGAGEMENT IN CREATING AND 

2085
01:29:48,720 --> 01:29:52,760
CREATING SOME GUIDELINES FOR 

2086
01:29:52,760 --> 01:29:55,200
ARTIFICIAL INTELLIGENCE AND 

2087
01:29:55,200 --> 01:29:57,680
LOOKING TO CREATE AND BE 

2088
01:29:57,680 --> 01:29:58,920
PIONEERS ON STANDARDS OF 

2089
01:29:58,920 --> 01:30:02,280
TECHNOLOGY FOCUSSED ON 

2090
01:30:02,280 --> 01:30:09,600
TECHNOLOGY ISSUES.

2091
01:30:09,600 --> 01:30:11,120
YOU CAN SEE WE HAVE DIFFERENT 

2092
01:30:11,120 --> 01:30:13,160
APPLICATIONS SO THOSE ARE THE 

2093
01:30:13,160 --> 01:30:13,960
DIFFERENT ROSE.

2094
01:30:13,960 --> 01:30:17,160
WE HAVE MEDICAL, WELLNESS, 

2095
01:30:17,160 --> 01:30:21,600
EDUCATION, MILITARY WORK AND 

2096
01:30:21,600 --> 01:30:24,720
EMPLOYMENT AND SO ON AND THERE'S

2097
01:30:24,720 --> 01:30:25,880
DIFFERENT TECHNOLOGIES.

2098
01:30:25,880 --> 01:30:27,960
NEWER TECHNOLOGIES FOR RECORDING

2099
01:30:27,960 --> 01:30:30,200
AND SENSING AND THAT STIMULATE.

2100
01:30:30,200 --> 01:30:34,080
THE USERS CAN GET AND LOOK AT A 

2101
01:30:34,080 --> 01:30:36,720
PARTICULAR CELL AND EXPLORE THE 

2102
01:30:36,720 --> 01:30:44,280
ISSUES THAT ARE RAISED THERE.

2103
01:30:44,280 --> 01:30:49,240
AND LOOKING AT THE DIFFERENT 

2104
01:30:49,240 --> 01:30:52,720
TECHNOLO

2105
01:30:52,720 --> 01:30:54,040
TECHNOLOGIES YOU CAN SEE A 

2106
01:30:54,040 --> 01:30:59,400
DESCRIPTION FOR EACH OF THE 

2107
01:30:59,400 --> 01:31:00,280
APPLICATIONS WE'RE WORKING ON 

2108
01:31:00,280 --> 01:31:02,280
AND HAVE A LOOK AT THE 

2109
01:31:02,280 --> 01:31:02,840
VOLUNTEERS AND SCOPE OF THE 

2110
01:31:02,840 --> 01:31:11,320
LARGER PROJECT.

2111
01:31:11,320 --> 01:31:13,320
WE HAVE EXAMPLES OF TECHNOLOGIES

2112
01:31:13,320 --> 01:31:15,000
WE TALK ABOUT ETHICAL ISSUES.

2113
01:31:15,000 --> 01:31:21,440
FOR SOME WE HAVE FUNDING AND 

2114
01:31:21,440 --> 01:31:31,920
TRANSLATIONAL PERSPECTIVES.

2115
01:31:32,840 --> 01:31:36,720
THE MEDICAL GROUP WILL FOCUS ON 

2116
01:31:36,720 --> 01:31:37,480
THE ASPECT OF THE GUIDELINE.

2117
01:31:37,480 --> 01:31:40,720
HERE'S HOW WE DECIDED TO DIVIDE 

2118
01:31:40,720 --> 01:31:43,480
THE ETHICAL ISSUES.

2119
01:31:43,480 --> 01:31:45,080
YOU CAN SEE SOME ARE OVERLAPPING

2120
01:31:45,080 --> 01:31:49,360
WITH OTHER GUIDELINES AND SOME 

2121
01:31:49,360 --> 01:31:52,040
ARE MORE NOVEL AND AGAIN AS WE 

2122
01:31:52,040 --> 01:31:54,040
PUBLISHED PARTS OF THIS WORK 

2123
01:31:54,040 --> 01:31:58,560
WE'LL GET MORE FEEDBACK INTO HOW

2124
01:31:58,560 --> 01:32:00,200
RELEVANT IS THIS EDITION FOR THE

2125
01:32:00,200 --> 01:32:00,480
USERS.

2126
01:32:00,480 --> 01:32:02,520
THEN WE HAVE SECTIONS FOR THE 

2127
01:32:02,520 --> 01:32:04,720
DISCUSSING LEGAL SOCIAL AND 

2128
01:32:04,720 --> 01:32:12,600
CULTURAL IMPLICATIONS.

2129
01:32:12,600 --> 01:32:16,720
AND WITH THAT THIS IS JUST 

2130
01:32:16,720 --> 01:32:18,720
INTRODUCTION OF THE OVER ALL 

2131
01:32:18,720 --> 01:32:20,280
NEUROETHICS AND HOPEFULLY WITH 

2132
01:32:20,280 --> 01:32:22,640
THE WORK OF RACIAL AND JACOB YOU

2133
01:32:22,640 --> 01:32:24,720
GET A MORE IN DEPTH LOOK AT 

2134
01:32:24,720 --> 01:32:25,920
WHAT'S HAPPENING FOR EACH 

2135
01:32:25,920 --> 01:32:26,920
DIFFERENT APPLICATIONS.

2136
01:32:26,920 --> 01:32:31,920
I WANT TO ACKNOWLEDGE ALL THE 

2137
01:32:31,920 --> 01:32:32,880
AMAZING PEOPLE IN THE INITIATIVE

2138
01:32:32,880 --> 01:32:33,680
AND WITH THAT I'LL PASS IT TO 

2139
01:32:33,680 --> 01:32:42,200
RACHEL.

2140
01:32:42,200 --> 01:32:44,280
>> BEAR WITH ME AS I HAVE
LOST 

2141
01:32:44,280 --> 01:32:45,560
MY VOICE.

2142
01:32:45,560 --> 01:32:49,000
I'LL DO MY BEST TO COMMUNICATE 

2143
01:32:49,000 --> 01:32:50,240
CLEARLY HERE.

2144
01:32:50,240 --> 01:32:52,480
MILITARY OPERATORS ARE A SPECIAL

2145
01:32:52,480 --> 01:32:53,760
POPULATION THAT FACE UNIQUE 

2146
01:32:53,760 --> 01:32:55,720
CHALLENGES WHICH JUSTIFIES THE 

2147
01:32:55,720 --> 01:32:59,080
NEED FOR NEUROETHICS GUIDANCE 

2148
01:32:59,080 --> 01:33:01,560
FOCUSSED ON MILITARY APPLICATION

2149
01:33:01,560 --> 01:33:03,760
IT IT'S A DOMAIN WITH 

2150
01:33:03,760 --> 01:33:04,720
SIGNIFICANT HAZARDS AND 

2151
01:33:04,720 --> 01:33:06,920
DIFFERENT CONSENT CONDITIONS AND

2152
01:33:06,920 --> 01:33:09,320
ALSO UNIQUE ENDS WHICH SOMETIMES

2153
01:33:09,320 --> 01:33:12,720
JUSTIFY USE IN WAYS THAT MAY NOT

2154
01:33:12,720 --> 01:33:15,160
BE MORALLY PALATABLE TO THE 

2155
01:33:15,160 --> 01:33:16,600
GENERAL POPULATION.

2156
01:33:16,600 --> 01:33:19,480
OUR GREATER DEMANDS ON 

2157
01:33:19,480 --> 01:33:21,640
OPERATORS' DECISION MAKING, 

2158
01:33:21,640 --> 01:33:25,480
SITUATIONAL AWARENESS AND MENTAL

2159
01:33:25,480 --> 01:33:27,960
AND PHYSICAL PERFORMANCE WITH 

2160
01:33:27,960 --> 01:33:29,600
RICH NOVEL TYPES PROVING USEFUL.

2161
01:33:29,600 --> 01:33:32,120
THE MILITARY IS SEEKING TO 

2162
01:33:32,120 --> 01:33:35,840
IMPROVE COMBAT READINESS BY 

2163
01:33:35,840 --> 01:33:36,720
FACILITATING COGNITIVE 

2164
01:33:36,720 --> 01:33:38,280
PERFORMANCE INCREASING ERRORS, 

2165
01:33:38,280 --> 01:33:39,800
IMPROVING EFFICIENCY AND 

2166
01:33:39,800 --> 01:33:43,080
REDUCING TRADING TIME AND FASTER

2167
01:33:43,080 --> 01:33:43,720
SKILL ACQUISITION.

2168
01:33:43,720 --> 01:33:46,320
SO IN OTHER WORDS, THE 

2169
01:33:46,320 --> 01:33:47,560
TECHNOLOGIES ARE BEING APPLIED 

2170
01:33:47,560 --> 01:33:51,160
AS FORCE MULTIPLIERS.

2171
01:33:51,160 --> 01:33:54,000
THE OTHER MAJOR AREA IS TO 

2172
01:33:54,000 --> 01:33:56,280
RESTORE WAR FIGHTER FUNCTION 

2173
01:33:56,280 --> 01:34:00,720
WITH NEUROPROSTHETICS AND OTHER 

2174
01:34:00,720 --> 01:34:05,640
HUMAN MACHINE INTERACTIONS.

2175
01:34:05,640 --> 01:34:07,120
AOF AS NEUROTECHNOLOGIES ADVANCE

2176
01:34:07,120 --> 01:34:09,520
THE USAGE IS LIKELY TO INCREASE 

2177
01:34:09,520 --> 01:34:11,360
BEYOND THE MILITARY AS WELL.

2178
01:34:11,360 --> 01:34:13,600
EXAMPLES OF THIS IN THE PAST 

2179
01:34:13,600 --> 01:34:15,200
INCLUDE VACCINATIONS, BLOOD 

2180
01:34:15,200 --> 01:34:16,640
TRANSFUSIONS, ETCETERA.

2181
01:34:16,640 --> 01:34:20,720
WE NEED TO BE VERY THOUGHTFUL ON

2182
01:34:20,720 --> 01:34:22,200
NEURAL TECHNOLOGY USE IN THE 

2183
01:34:22,200 --> 01:34:27,400
MILITARY BECAUSE IT'S LIKELY TO 

2184
01:34:27,400 --> 01:34:29,480
CREATE COMPLEX ETHICAL DILEMMAS 

2185
01:34:29,480 --> 01:34:31,880
OR CONFLICT OR ETHICAL ISSUES 

2186
01:34:31,880 --> 01:34:33,920
STEM FROM DYNAMICS FROM THE 

2187
01:34:33,920 --> 01:34:37,800
CHAIN OF DEMAND AND THERE'S 

2188
01:34:37,800 --> 01:34:40,720
SHORT TERM OR LONG-TERM SAFETY 

2189
01:34:40,720 --> 01:34:44,040
RISKS SUCH AS BIO COMPATIBILITY 

2190
01:34:44,040 --> 01:34:45,280
AND REVERSIBILITY AND DIGITAL 

2191
01:34:45,280 --> 01:34:48,000
BIO SECURITY AMONGST OTHERS.

2192
01:34:48,000 --> 01:34:50,120
OF MANY PROPOSED TECHNOLOGY 

2193
01:34:50,120 --> 01:34:51,800
APPLICATIONS ARE IN THEIR 

2194
01:34:51,800 --> 01:34:54,560
INFANCY, IT'S PRUDENT TO ADDRESS

2195
01:34:54,560 --> 01:34:56,280
THE ETHICAL, LEGAL, SOCIAL AND 

2196
01:34:56,280 --> 01:34:59,200
CULTURAL IMPLICATIONS NOW BEFORE

2197
01:34:59,200 --> 01:35:00,760
WIDESPREAD ADOPTION INTO 

2198
01:35:00,760 --> 01:35:02,280
MILITARY AND NATIONAL SECURITY 

2199
01:35:02,280 --> 01:35:04,600
CONTEXTS.

2200
01:35:04,600 --> 01:35:08,720
THIS CAN'T JUST BE FOR ACADEMIC 

2201
01:35:08,720 --> 01:35:10,400
PHILOSOPHERS.

2202
01:35:10,400 --> 01:35:13,040
NEUROETHICS HAS TO BE 

2203
01:35:13,040 --> 01:35:14,080
IMPLEMENTED AND THIS INCLUDES 

2204
01:35:14,080 --> 01:35:16,200
ENGINEERS WHO ARE INVOLVED IN 

2205
01:35:16,200 --> 01:35:16,720
THE DESIGN.

2206
01:35:16,720 --> 01:35:19,120
SO WE'VE DEVELOPED A WORKING 

2207
01:35:19,120 --> 01:35:20,720
DOCUMENT HOPEFULLY TO GUIDE 

2208
01:35:20,720 --> 01:35:22,400
THESE ENGINEERS BY INTRODUCING 

2209
01:35:22,400 --> 01:35:26,280
THE ETHICAL CONCEPTS BUT PERHAPS

2210
01:35:26,280 --> 01:35:32,240
EVEN MORE IMPORTANTLY 

2211
01:35:32,240 --> 01:35:35,440
SUGGESTIONS FOR THE DESIGN 

2212
01:35:35,440 --> 01:35:36,080
PROCESS.

2213
01:35:36,080 --> 01:35:37,880
SO THE NEUROETHICS FRAMEWORK 

2214
01:35:37,880 --> 01:35:40,720
FOCUSES ON CATEGORIES FOR 

2215
01:35:40,720 --> 01:35:42,040
ETHICAL QUESTIONS WHILE UNDER 

2216
01:35:42,040 --> 01:35:42,640
VARIOUS HEADINGS.

2217
01:35:42,640 --> 01:35:46,840
FOR EXAMPLE, NOR C-- FOR THE 

2218
01:35:46,840 --> 01:35:47,960
CATEGORY OF SAFETY, WELL BEING 

2219
01:35:47,960 --> 01:35:50,280
AND RISK WHAT'S THE IMPACT TO 

2220
01:35:50,280 --> 01:35:52,960
BRAIN STRUCTURE AND FUNCTION IN 

2221
01:35:52,960 --> 01:35:56,040
THE SHORT TERM AND LONG TERM.

2222
01:35:56,040 --> 01:35:58,680
ALSO, IF IT'S AN IMPLANTATION 

2223
01:35:58,680 --> 01:36:00,720
CAN IT BE REMOVED?

2224
01:36:00,720 --> 01:36:04,920
THESE ARE IMPORTANT BECAUSE 

2225
01:36:04,920 --> 01:36:06,440
TECHNOLOGIES HAVE SHELF LIVES 

2226
01:36:06,440 --> 01:36:12,240
WHICH BEGS US TO ASK WHEN WILL 

2227
01:36:12,240 --> 01:36:16,600
THIS BE OBSOLETE SO REARE  -- 

2228
01:36:16,600 --> 01:36:18,720
ARE WE CREATING SINGLE-USE 

2229
01:36:18,720 --> 01:36:21,920
PEOPLE AND IS IT REVERSIBLE IN 

2230
01:36:21,920 --> 01:36:23,360
THE CASE THE TECHNOLOGY BECOMES 

2231
01:36:23,360 --> 01:36:24,000
OBSOLETE.

2232
01:36:24,000 --> 01:36:24,760
THE CATEGORY OF AUTHORITY AND 

2233
01:36:24,760 --> 01:36:26,640
POWER IS PARTICULARLY IMPORTANT 

2234
01:36:26,640 --> 01:36:28,120
IN THE MILITARY.

2235
01:36:28,120 --> 01:36:31,200
THE CONSTRUCT OF CONSENT IS NOT 

2236
01:36:31,200 --> 01:36:32,560
REALLY OPERABLE IN THE CHAIN OF 

2237
01:36:32,560 --> 01:36:35,040
COMMAND OUTSIDE OF A RESEARCH 

2238
01:36:35,040 --> 01:36:38,160
CONTEXT AND MILITARY OPERATORS 

2239
01:36:38,160 --> 01:36:39,480
DO NOT NECESSARILY HAVE THE 

2240
01:36:39,480 --> 01:36:43,080
ABILITY TO REFUSE ALL 

2241
01:36:43,080 --> 01:36:44,280
NON-EXPERIMENTAL MEDICAL 

2242
01:36:44,280 --> 01:36:44,640
PROCEDURES.

2243
01:36:44,640 --> 01:36:47,440
AND MILITARY COMMANDERS DO HAVE 

2244
01:36:47,440 --> 01:36:50,280
THE LEGAL RIGHT TO REQUIRE 

2245
01:36:50,280 --> 01:36:53,560
PROCEDURES LIKE VACCINATION.

2246
01:36:53,560 --> 01:36:56,280
2021 WITH COVID VACCINES IS AN 

2247
01:36:56,280 --> 01:36:57,840
EXCELLENT PREVIEW OF SITUATIONS 

2248
01:36:57,840 --> 01:36:59,640
THAT CAN ARISE AND THERE COULD 

2249
01:36:59,640 --> 01:37:02,280
BE A TIME WHERE READINESS FOR 

2250
01:37:02,280 --> 01:37:04,680
COMBAT MAY BE CONSIDERED TO 

2251
01:37:04,680 --> 01:37:06,880
ENTAIL THINGS WITH PREPAREDNESS 

2252
01:37:06,880 --> 01:37:08,440
OVERCOME FATIGUE OR ACCELERATE 

2253
01:37:08,440 --> 01:37:09,240
SKILL ACQUISITION.

2254
01:37:09,240 --> 01:37:11,080
THESE THINGS COULD BE MANDATE 

2255
01:37:11,080 --> 01:37:12,840
AND THERE COULD BE ISSUES 

2256
01:37:12,840 --> 01:37:14,760
INVOLVING CHAIN OF COMMAND 

2257
01:37:14,760 --> 01:37:17,080
RELATED TO AUTHORITIES OR YOUNG 

2258
01:37:17,080 --> 01:37:20,440
ADULTS WITH STILL DEVELOPING 

2259
01:37:20,440 --> 01:37:22,040
BRAINS.

2260
01:37:22,040 --> 01:37:23,720
PERSONAL AGENCY MAY BE 

2261
01:37:23,720 --> 01:37:26,280
COMPROMISED AND RISK TAKING 

2262
01:37:26,280 --> 01:37:28,720
PREDILECTION IN THE INTEREST OF 

2263
01:37:28,720 --> 01:37:29,800
FEARS.

2264
01:37:29,800 --> 01:37:32,920
THE IDEA OF PEAK PERFORMANCE 

2265
01:37:32,920 --> 01:37:35,320
DESPITE HARM IS WHAT WE'VE 

2266
01:37:35,320 --> 01:37:37,120
OBSERVED WITH LEAD OPERATORS 

2267
01:37:37,120 --> 01:37:38,280
ANTICIPATING HAVING DO SO HERE 

2268
01:37:38,280 --> 01:37:40,280
AND LOOKING AT JUSTICE AND 

2269
01:37:40,280 --> 01:37:41,720
FAIRNESS IN THE MILITARY CONTEXT

2270
01:37:41,720 --> 01:37:44,280
AND WANT TO CONSIDER THINGS LIKE

2271
01:37:44,280 --> 01:37:47,080
PROMOTION OPPORTUNITIES BIASSED.

2272
01:37:47,080 --> 01:37:49,560
IF THESE TECHNOLOGIES ARE 

2273
01:37:49,560 --> 01:37:51,640
IMPORTANT TO STRATEGIC SUCCESS 

2274
01:37:51,640 --> 01:37:53,120
IN THE VARIOUS SERVICES AND ARE 

2275
01:37:53,120 --> 01:37:57,120
OPERATORS MORE LIKELY TO BE 

2276
01:37:57,120 --> 01:38:00,720
PROMOTED AND IF SO ARE THERE 

2277
01:38:00,720 --> 01:38:02,800
DISPROPORTIONAT BURDENS AND 

2278
01:38:02,800 --> 01:38:04,640
RISKS AND ARE THERE INCENTIVES 

2279
01:38:04,640 --> 01:38:08,280
FOR PEOPLE TO BECOME OPERATORS 

2280
01:38:08,280 --> 01:38:14,080
WITH UNACCEPTABLE RISKS AND 

2281
01:38:14,080 --> 01:38:17,680
THINK ABOUT TECHNOLOGY AND WHAT 

2282
01:38:17,680 --> 01:38:20,680
IS IN THE MILITARY MAY NOT BE 

2283
01:38:20,680 --> 01:38:21,840
ACCEPTEDLY JUST IN THE GENERAL 

2284
01:38:21,840 --> 01:38:22,280
POPULATION.

2285
01:38:22,280 --> 01:38:24,680
SO REGARDING THE CATEGORY OF 

2286
01:38:24,680 --> 01:38:35,240
AGENCY AND IDENTITY, THE AGENCY 

2287
01:38:36,320 --> 01:38:38,920
INTACT AND IS THERE A 

2288
01:38:38,920 --> 01:38:40,760
DISTINCTION WHAT THE MACHINE 

2289
01:38:40,760 --> 01:38:41,760
LEARNING COMPONENT COULD BE 

2290
01:38:41,760 --> 01:38:44,160
COMBINED IN THE TECH IS DOING.

2291
01:38:44,160 --> 01:38:46,400
THAT COULD HAVE PARTICULAR 

2292
01:38:46,400 --> 01:38:47,840
CONSEQUENCE FOR THINGS LIKE 

2293
01:38:47,840 --> 01:38:50,000
MORAL INJURY AND CHANGING A 

2294
01:38:50,000 --> 01:38:52,000
PERSON'S PERCEPTION OF 

2295
01:38:52,000 --> 01:38:54,520
THEMSELVES AND THEIR HUMANITY AS

2296
01:38:54,520 --> 01:38:55,520
WELL AS TECHNOLOGY THAT 

2297
01:38:55,520 --> 01:39:00,640
INTERFERES WITH OR OBSCURES THE 

2298
01:39:00,640 --> 01:39:02,160
LOCUS MUCH DECISION MAKE ORG 

2299
01:39:02,160 --> 01:39:06,600
CAUSES AN OPERATOR TO BEHAVE 

2300
01:39:06,600 --> 01:39:11,400
DIFFERENTLY THAN MAY NORMALLY DO

2301
01:39:11,400 --> 01:39:14,800
HAS TO CONFRONT LEGALITY AND 

2302
01:39:14,800 --> 01:39:16,120
CULPAC

2303
01:39:16,120 --> 01:39:19,880
CULPABLITY AND IS THIS PROTECTED

2304
01:39:19,880 --> 01:39:25,920
FROM MISUSE AND HACKING OR 

2305
01:39:25,920 --> 01:39:26,160
SHARING?

2306
01:39:26,160 --> 01:39:27,960
HOW'S IT BEING STORED AND AS THE

2307
01:39:27,960 --> 01:39:28,720
IMPORTANT FOR ENGINEERS TO 

2308
01:39:28,720 --> 01:39:32,280
CONSIDER FROM THE GROUND UP.

2309
01:39:32,280 --> 01:39:34,320
THE WAY DATA IS HANDLED HAS TO 

2310
01:39:34,320 --> 01:39:35,720
BE CONSIDERED FROM THE BOTTOM OF

2311
01:39:35,720 --> 01:39:36,720
THE INFRASTRUCTURE AND OFTEN 

2312
01:39:36,720 --> 01:39:38,240
DIFFICULT TO CHANGE ONCE YOU GET

2313
01:39:38,240 --> 01:39:38,720
TO A CERTAIN LEVEL OF 

2314
01:39:38,720 --> 01:39:44,720
DEVELOPMENT.

2315
01:39:44,720 --> 01:39:45,840
IN MENTIONING THE NEED TO 

2316
01:39:45,840 --> 01:39:47,400
CONSIDER THE ISSUES DURING THE 

2317
01:39:47,400 --> 01:39:48,720
DESIGN PROCESS THE QUESTION 

2318
01:39:48,720 --> 01:39:50,280
BECOMES HOW DO WE DO THIS?

2319
01:39:50,280 --> 01:39:55,320
OUR DOCUMENT INTRODUCES A 

2320
01:39:55,320 --> 01:39:57,160
NEUROETHIC FRAMEWORK WHICH SAY 

2321
01:39:57,160 --> 01:40:00,720
TOOL KIT FOR RISK ASSESSMENT AND

2322
01:40:00,720 --> 01:40:04,280
METHODOLOGY FOR THE DESIGN 

2323
01:40:04,280 --> 01:40:04,520
PROCESS.

2324
01:40:04,520 --> 01:40:06,720
WE BRIEFLY INTRODUCED PROCEDURE 

2325
01:40:06,720 --> 01:40:10,320
WHICH IS OPERATIONAL AND 

2326
01:40:10,320 --> 01:40:12,720
NEUROETHICAL RISK ANALYSIS AND 

2327
01:40:12,720 --> 01:40:14,960
MITIGATION PARADIGM DEVELOPED BY

2328
01:40:14,960 --> 01:40:16,120
JORDANO AND COLLEAGUES TO 

2329
01:40:16,120 --> 01:40:17,200
ACCOMPLISH FOUR BASIC TASKS.

2330
01:40:17,200 --> 01:40:19,520
WE WANT TO BE ABLE TO ASSESS THE

2331
01:40:19,520 --> 01:40:20,320
CAPABILITIES AND GAPS OF THE 

2332
01:40:20,320 --> 01:40:21,000
CURRENT TECHNOLOGIES.

2333
01:40:21,000 --> 01:40:24,720
WE WANT TO DEFINE THE DOMAINS 

2334
01:40:24,720 --> 01:40:26,640
THE NEW TECHNOLOGIES IMPACT SUCH

2335
01:40:26,640 --> 01:40:27,880
AS HEALTH CARE AND WELLNESS AND 

2336
01:40:27,880 --> 01:40:30,400
COMMUNICATION AND ENTERTAINMENT 

2337
01:40:30,400 --> 01:40:32,240
AND POLITICS AND THE LEGAL 

2338
01:40:32,240 --> 01:40:36,240
SYSTEM AND SUGGEST PROCEDURE TO 

2339
01:40:36,240 --> 01:40:38,000
QUANTITATIVELY AND QUALITATIVELY

2340
01:40:38,000 --> 01:40:40,640
LOOK AT BURDENS AND RISK AND 

2341
01:40:40,640 --> 01:40:42,600
PROMPT USERS TO ADDRESS WHAT CAN

2342
01:40:42,600 --> 01:40:45,560
AND SHOULD BE DONE TO ALLEVIATE 

2343
01:40:45,560 --> 01:40:46,560
HARM MAXIMIZING BENEFITS.

2344
01:40:46,560 --> 01:40:49,160
AS WE DO THIS ONE THING IN THE 

2345
01:40:49,160 --> 01:40:51,360
MILITARY GROUP WE PROPOSED AND 

2346
01:40:51,360 --> 01:40:54,240
SO MUCH OF OUR DOMAIN IS DEALING

2347
01:40:54,240 --> 01:41:00,240
WITH THINGS THAT ARE COGNITIVE 

2348
01:41:00,240 --> 01:41:07,480
ENHANCEMENTS AND PRINCIPLES DUE 

2349
01:41:07,480 --> 01:41:10,680
TO THE POTENTIAL OF TECHNOLOGIES

2350
01:41:10,680 --> 01:41:12,720
DEFINING HOW HUMANS INTERACT 

2351
01:41:12,720 --> 01:41:14,320
WITH ONE ANOTHER AND GROUP AND 

2352
01:41:14,320 --> 01:41:17,480
WE REFERRED TO A GROUP ON 

2353
01:41:17,480 --> 01:41:19,480
GLOBALIZING NEUROETHICS WHERE IN

2354
01:41:19,480 --> 01:41:21,560
THE PRINCIPLE OF AUTONOMY 

2355
01:41:21,560 --> 01:41:24,720
BECOMES THE RIGHT TO 

2356
01:41:24,720 --> 01:41:27,840
SELF-CREATIVITY AND HUMANS ARE 

2357
01:41:27,840 --> 01:41:29,840
ENHANCED TODAY DON'T BECOME 

2358
01:41:29,840 --> 01:41:32,440
OBSOLETE TOMORROW.

2359
01:41:32,440 --> 01:41:35,240
BENEFICENCE BECOMES EMPOWERMENT 

2360
01:41:35,240 --> 01:41:38,920
WHICH IS LESS PATERNALISTIC AND 

2361
01:41:38,920 --> 01:41:41,480
CITIZENSHIP PRESERVING AN 

2362
01:41:41,480 --> 01:41:42,760
INDIVIDUAL'S CAPACITY TO 

2363
01:41:42,760 --> 01:41:45,880
PARTICIPATE IN THEIR CIVIC 

2364
01:41:45,880 --> 01:41:46,080
SOCIETY.

2365
01:41:46,080 --> 01:41:48,520
THIS FIGURE GIVES AN IDEA HOW ON

2366
01:41:48,520 --> 01:41:58,280
RAMP CAN BE IMPLEMENTED.

2367
01:41:58,280 --> 01:42:00,440
WE'LL START WITH TECHNOLOGY AND 

2368
01:42:00,440 --> 01:42:02,320
LOOK AT PARTICULAR TECHNOLOGIES 

2369
01:42:02,320 --> 01:42:03,280
AND AFTER WE CONSIDER THE 

2370
01:42:03,280 --> 01:42:05,680
VARIOUS ETHICAL QUESTIONS SUCH 

2371
01:42:05,680 --> 01:42:07,640
AS EXCITE AND WELL BEING, 

2372
01:42:07,640 --> 01:42:10,720
AUTHORITY TO EMPOWER AND AGENCY 

2373
01:42:10,720 --> 01:42:12,680
AND AUTHORITY, ETCETERA, WE WANT

2374
01:42:12,680 --> 01:42:15,120
TO TALK ABOUT HOW IT SHOULD 

2375
01:42:15,120 --> 01:42:16,800
INFORM THE TECHNOLOGY AND THE 

2376
01:42:16,800 --> 01:42:18,720
GREEN BOX HAS AN ITERATIVE LOOP.

2377
01:42:18,720 --> 01:42:24,720
THERE'S TWO FUNCTIONS WE WANT TO

2378
01:42:24,720 --> 01:42:27,400
DO WE WANT TO LOOK AT THE 

2379
01:42:27,400 --> 01:42:28,480
STRATEGY NEEDS AND THE 

2380
01:42:28,480 --> 01:42:30,880
TECHNOLOGIES BEING TASKED WITH 

2381
01:42:30,880 --> 01:42:32,480
BEING ABLE TO ACCOMPLISH AND IS 

2382
01:42:32,480 --> 01:42:34,480
THERE THE CAPACITY FOR THE NEEDS

2383
01:42:34,480 --> 01:42:36,720
IN THE TECHNOLOGY AS IT'S BEING 

2384
01:42:36,720 --> 01:42:38,600
DEVELOPED AND THEN AS THERE'S 

2385
01:42:38,600 --> 01:42:40,160
SELECTING THE OPTIMAL 

2386
01:42:40,160 --> 01:42:42,160
CAPABILITIES TO INCLUDE IN THAT 

2387
01:42:42,160 --> 01:42:44,720
TECHNOLOGY, THEY NEED TO ENGAGE 

2388
01:42:44,720 --> 01:42:46,400
WITH THE SOCIETAL SCENARIOS THAT

2389
01:42:46,400 --> 01:42:47,400
COULD HAPPEN.

2390
01:42:47,400 --> 01:42:50,280
THEY NEED TO FIRST IDENTIFY THE 

2391
01:42:50,280 --> 01:42:52,680
SOCIETAL DOMAINS IN WHICH THE 

2392
01:42:52,680 --> 01:42:53,480
TECHNOLOGY MAY BE 

2393
01:42:53,480 --> 01:42:55,240
OPERATIONALIZED TO PREDICT AND 

2394
01:42:55,240 --> 01:42:56,240
DEFINE POTENTIAL SCENARIOS THAT 

2395
01:42:56,240 --> 01:42:58,680
COULD BE PROBLEMATIC AND THEN TO

2396
01:42:58,680 --> 01:43:03,160
ANTICIPATE AND IN MANY CASES 

2397
01:43:03,160 --> 01:43:04,400
INFORM REGULATORY COMPLIANCE 

2398
01:43:04,400 --> 01:43:05,840
REQUIREMENTS AS THEY'RE BEING 

2399
01:43:05,840 --> 01:43:08,120
WRITTEN AND DEVELOPMENT.

2400
01:43:08,120 --> 01:43:14,840
THE COMMUNITIES CAN ITERATIVELY 

2401
01:43:14,840 --> 01:43:17,200
INTERACT AND LOOK AT THE 

2402
01:43:17,200 --> 01:43:18,440
TECHNOLOGY AND REASSESS IT IN 

2403
01:43:18,440 --> 01:43:20,280
THE USE CONTEXT AND THE 

2404
01:43:20,280 --> 01:43:21,880
SCENARIOS THAT ARE GOING TO BE 

2405
01:43:21,880 --> 01:43:24,080
DEFINED AND WE CAN ADAPT THE 

2406
01:43:24,080 --> 01:43:26,280
DESIGN AND ENGAGE STAGES OF THE 

2407
01:43:26,280 --> 01:43:27,200
LOOP.

2408
01:43:27,200 --> 01:43:28,720
OVER ALL, OUR HOPE WITH THE 

2409
01:43:28,720 --> 01:43:31,920
DOCUMENT IS WE'LL NOT ONLY BE 

2410
01:43:31,920 --> 01:43:33,760
ABLE TO WRAP OUR HEADS AND BE 

2411
01:43:33,760 --> 01:43:34,680
INTRODUCED TO THE ETHICAL ISSUES

2412
01:43:34,680 --> 01:43:37,600
BUT WE PRESENT IT IN A WAY 

2413
01:43:37,600 --> 01:43:39,880
THAT'S OPERATIONALIZABLE AND 

2414
01:43:39,880 --> 01:43:41,920
TAKE MORE ACTION DURING DESIGN 

2415
01:43:41,920 --> 01:43:44,000
THAN TO SIMPLY BEG THE QUESTION.

2416
01:43:44,000 --> 01:43:45,880
WITH THAT I'LL PASS THE MIC TO 

2417
01:43:45,880 --> 01:43:49,240
MY COLLEAGUE DR. ROBINSON.

2418
01:43:49,240 --> 01:43:52,440
>> HI, EVERYBODY.

2419
01:43:52,440 --> 01:43:54,800
MY APOLOGIES FOR NOT BEING ABLE 

2420
01:43:54,800 --> 01:43:57,600
TO JOIN LIVE BUT I'M THANKFUL TO

2421
01:43:57,600 --> 01:43:59,440
PRESENT THE WORK WE'RE DOING AND

2422
01:43:59,440 --> 01:44:01,920
TO PRESENT IN THE NEUROETHICS 

2423
01:44:01,920 --> 01:44:03,360
FRAMEWORK AND THANKS FOR SHARING

2424
01:44:03,360 --> 01:44:04,720
THE OVER ALL FRAMEWORK AND 

2425
01:44:04,720 --> 01:44:06,520
MILITARY WORKING GROUP.

2426
01:44:06,520 --> 01:44:07,200
I'M HERE TO SHARE SOME WORK IN 

2427
01:44:07,200 --> 01:44:14,600
THE MEDICAL WORKING GROUP.

2428
01:44:14,600 --> 01:44:15,840
MY GOAL IS TO TELL YOU ABOUT 

2429
01:44:15,840 --> 01:44:17,760
SOME CONCEPTS.

2430
01:44:17,760 --> 01:44:18,600
I'M REPRESENTING THE 

2431
01:44:18,600 --> 01:44:19,680
COLLABORATIVE WORK OF A LOT OF 

2432
01:44:19,680 --> 01:44:20,680
FOLKS I'LL MENTION AT THE END 

2433
01:44:20,680 --> 01:44:22,040
AND HOPING TO BE ABLE TO SHARE 

2434
01:44:22,040 --> 01:44:24,400
WITH YOU HOW I THINK YOU MAY BE 

2435
01:44:24,400 --> 01:44:25,440
ABLE TO BENEFIT FROM THE 

2436
01:44:25,440 --> 01:44:26,280
DOCUMENT WE'RE PUTTING TOGETHER,

2437
01:44:26,280 --> 01:44:28,360
HOW TO APPROACH IT AND 

2438
01:44:28,360 --> 01:44:32,760
IMPORTANTLY TO TRY TO SEE IF 

2439
01:44:32,760 --> 01:44:34,720
THERE'S INTEREST IN HELPING OUT 

2440
01:44:34,720 --> 01:44:36,720
IN AREAS WHERE WE NEED WE NEED 

2441
01:44:36,720 --> 01:44:40,720
FEEDBACK.

2442
01:44:40,720 --> 01:44:47,520
AS LAURA MENTIONED THE DOCUMENT 

2443
01:44:47,520 --> 01:44:49,280
IS AROUND ALL THE APPLICATION 

2444
01:44:49,280 --> 01:44:49,560
AREAS.

2445
01:44:49,560 --> 01:44:52,720
THESE ARE SAFETY, WELL BEING AND

2446
01:44:52,720 --> 01:44:56,120
RISK, POWER, JUSTICE, IDENTITY, 

2447
01:44:56,120 --> 01:44:57,440
SURVEILLANCE AND POLICY AND 

2448
01:44:57,440 --> 01:45:00,680
THAT'S HOW I DIVIDED UP THE 

2449
01:45:00,680 --> 01:45:02,280
ISSUES.

2450
01:45:02,280 --> 01:45:04,560
NOW, WHEN WE APPLY THESE TO THE 

2451
01:45:04,560 --> 01:45:06,120
MEDICAL WORK GROUP SOME COME 

2452
01:45:06,120 --> 01:45:07,120
INTO CLEARER FOCUS.

2453
01:45:07,120 --> 01:45:09,440
I'LL TELL YOU WHAT WE SPENT MOST

2454
01:45:09,440 --> 01:45:10,200
THE TIME DISCUSSING.

2455
01:45:10,200 --> 01:45:12,720
IN SAFETY, WELL BEING AND RISK 

2456
01:45:12,720 --> 01:45:23,200
ONE THING THAT'S COME UP IS 

2457
01:45:27,080 --> 01:45:29,520
DEFINING POTENTIAL HARM FROM 

2458
01:45:29,520 --> 01:45:31,040
BIOMEDICAL DEVICES THAT INTERACT

2459
01:45:31,040 --> 01:45:32,280
WITH THE BRAIN AND NERVOUS 

2460
01:45:32,280 --> 01:45:32,640
SYSTEM.

2461
01:45:32,640 --> 01:45:34,240
I'LL GET INTO THOSE ON THE NEXT 

2462
01:45:34,240 --> 01:45:34,640
SLIDE.

2463
01:45:34,640 --> 01:45:38,280
WHEN IT COMES TO AUTHORITY AND 

2464
01:45:38,280 --> 01:45:39,160
POWER, ONE OF THE MAIN 

2465
01:45:39,160 --> 01:45:40,520
CONSIDERATIONS FOR THE MEDICAL 

2466
01:45:40,520 --> 01:45:44,240
WORKING GROUP IS HOW THE IDEAS 

2467
01:45:44,240 --> 01:45:46,520
PERTAIN TO THE INFORMED CONSENT.

2468
01:45:46,520 --> 01:45:48,200
ASKING FOR CONSENT AND HOW IT'S 

2469
01:45:48,200 --> 01:45:48,720
PRESENTED, ETCETERA.

2470
01:45:48,720 --> 01:45:52,520
WHEN IT COMES TO JUSTICE AND 

2471
01:45:52,520 --> 01:45:55,160
FAIRNESS, MEDICAL DEVICES 

2472
01:45:55,160 --> 01:45:57,960
PARTICULARLY CLASS 3 IMPLANTABLE

2473
01:45:57,960 --> 01:46:01,280
DEVICES GO THROUGH EXTENSIVE 

2474
01:46:01,280 --> 01:46:02,400
TESTING AND VALIDATION AND AS A 

2475
01:46:02,400 --> 01:46:04,080
RESULT THE COST OF DEVELOPMENT 

2476
01:46:04,080 --> 01:46:05,800
IS QUITE HIGH.

2477
01:46:05,800 --> 01:46:07,440
THIS LEADS TO HIGH PURCHASE 

2478
01:46:07,440 --> 01:46:08,160
PRICE.

2479
01:46:08,160 --> 01:46:09,080
FOR FOLKS WITH INSURANCE 

2480
01:46:09,080 --> 01:46:10,360
SOMETIMES IT'S COVERED AND 

2481
01:46:10,360 --> 01:46:14,080
SOMETIMES NOT IN ITS ENTIRETY.

2482
01:46:14,080 --> 01:46:16,720
AS A RESULT IT RELATES TO 

2483
01:46:16,720 --> 01:46:20,160
ACCESS.

2484
01:46:20,160 --> 01:46:22,640
THESE DEVICES MAY NOT BE 

2485
01:46:22,640 --> 01:46:23,560
ACCESSIBLE TO THOSE WITHOUT 

2486
01:46:23,560 --> 01:46:25,400
PRIVATE INSURANCE OR IN SOME 

2487
01:46:25,400 --> 01:46:27,280
CASES DEVICES AREN'T COVERED AT 

2488
01:46:27,280 --> 01:46:29,640
ALL AND SECONDLY WHEN WE THINK 

2489
01:46:29,640 --> 01:46:33,400
ABOUT COUNTRIES WHERE THEY MAY 

2490
01:46:33,400 --> 01:46:35,600
NOT HAVE HIGH COST MEDICAL 

2491
01:46:35,600 --> 01:46:36,840
DEVICES THERE'S A QUESTION OF 

2492
01:46:36,840 --> 01:46:38,800
WHETHER OR NOT THE SAME TYPES OF

2493
01:46:38,800 --> 01:46:39,640
TECHNOLOGIES WILL BE ACCESSIBLE 

2494
01:46:39,640 --> 01:46:43,960
TO FOLKS WITH LESSER MEANS.

2495
01:46:43,960 --> 01:46:47,360
IN THE CASE OF AGENCY AND 

2496
01:46:47,360 --> 01:46:48,200
IDENTITY ONE THING THAT'S COME 

2497
01:46:48,200 --> 01:46:51,160
UP WITH THE MEDICAL WORKING 

2498
01:46:51,160 --> 01:46:54,080
GROUP IS THESE TECHNOLOGIES 

2499
01:46:54,080 --> 01:46:55,800
BECAUSE THEY ADDRESS A MEDICAL 

2500
01:46:55,800 --> 01:46:58,960
NEED CAN HAVE A HIGHER LEVEL OF 

2501
01:46:58,960 --> 01:47:00,400
INVASIVENESS EVEN TO THE POINT 

2502
01:47:00,400 --> 01:47:04,000
OF SURGICAL RESECTION OR GENE 

2503
01:47:04,000 --> 01:47:04,360
THERAPIES.

2504
01:47:04,360 --> 01:47:09,480
PERHAPS DELIVERING OPTOGENETIC 

2505
01:47:09,480 --> 01:47:12,120
PROTEINS AND THE IDEA OF GENETIC

2506
01:47:12,120 --> 01:47:13,600
MUTATION IS OUTSIDE THE OTHER 

2507
01:47:13,600 --> 01:47:14,600
GROUPS LIKE THE ENTERTAINMENT 

2508
01:47:14,600 --> 01:47:16,720
GROUP BUT FOR THE MEDICAL 

2509
01:47:16,720 --> 01:47:21,120
WORKING GROUP, THERE ARE INDEED 

2510
01:47:21,120 --> 01:47:23,320
CLINICAL TRIALS FOR THINGS LIKE 

2511
01:47:23,320 --> 01:47:24,600
OPTOGENETIC CONSTRUCTS.

2512
01:47:24,600 --> 01:47:26,240
THIS CREATES A DIFFERENT TYPE OF

2513
01:47:26,240 --> 01:47:27,480
REVERSIBILITY THAN THE CASE FOR 

2514
01:47:27,480 --> 01:47:28,360
OTHER TYPES OF TECHNOLOGIES.

2515
01:47:28,360 --> 01:47:35,160
FOR EXAMPLE, HOW DO WE TURN OFF 

2516
01:47:35,160 --> 01:47:41,560
THE CONSTRUCT ANDAGE WE THINK OF

2517
01:47:41,560 --> 01:47:43,600
THE TECHNOLOGIES AS LIVING ON 

2518
01:47:43,600 --> 01:47:45,800
THE SPECTRUM OF REVERSIBILITY 

2519
01:47:45,800 --> 01:47:47,080
AND SOME LEVEL PERHAPS NOT 

2520
01:47:47,080 --> 01:47:50,280
COMPLETE AND SIMILAR THINGS LIKE

2521
01:47:50,280 --> 01:47:51,720
ENDOVASCULAR ARRAYS FOR 

2522
01:47:51,720 --> 01:47:53,160
SIMULATING AND RECORDING.

2523
01:47:53,160 --> 01:47:55,280
DIFFICULT TO REMOVE THE 

2524
01:47:55,280 --> 01:47:56,440
ELECTRODES FROM THE STINT BUT 

2525
01:47:56,440 --> 01:47:59,240
PERHAPS YOU CAN TURN OFF THE 

2526
01:47:59,240 --> 01:48:01,200
I.P.G. OR PERHAPS THAT COULD BE 

2527
01:48:01,200 --> 01:48:02,760
REMOVED OR LEAVE THE STINT IN 

2528
01:48:02,760 --> 01:48:04,280
PLACE.

2529
01:48:04,280 --> 01:48:07,040
YOU'RE NOT COMPLETELY REMOVING 

2530
01:48:07,040 --> 01:48:09,560
THE ADVICE AND CAN YOU SATISFY 

2531
01:48:09,560 --> 01:48:11,840
THE NEEDS AS IT RELATES TO 

2532
01:48:11,840 --> 01:48:12,720
AGENCY AND IDENTITY.

2533
01:48:12,720 --> 01:48:14,720
YOU STILL MAY HAVE THE DEVICE 

2534
01:48:14,720 --> 01:48:17,320
IMPLANTED IN THE BRAIN BUT IS IT

2535
01:48:17,320 --> 01:48:18,920
TURNED OFF ENOUGH TO GIVE BACK 

2536
01:48:18,920 --> 01:48:22,480
THE SENSE OF SELF.

2537
01:48:22,480 --> 01:48:24,280
SIMILARLY WHEN IT COMES TO 

2538
01:48:24,280 --> 01:48:26,840
SURVEILLANCE AND PRIVACY PLAYS A

2539
01:48:26,840 --> 01:48:28,240
BIG ROLE.

2540
01:48:28,240 --> 01:48:31,560
MANY WILL CAPTURE NEURAL DATA 

2541
01:48:31,560 --> 01:48:34,400
WITH HIGHER FIDELITY WITH 

2542
01:48:34,400 --> 01:48:35,560
EXTERNAL WEARABLE DEVICES AND 

2543
01:48:35,560 --> 01:48:38,080
THE QUESTION COMES UP WHO OWNS 

2544
01:48:38,080 --> 01:48:43,040
IT AND WHO BENEFITS AND HOW DO 

2545
01:48:43,040 --> 01:48:48,400
WE ENSURE THE DEVICES ARE SAFE.

2546
01:48:48,400 --> 01:48:52,680
CRITICAL FOR DEVICES MAY BE LIFE

2547
01:48:52,680 --> 01:48:56,280
SAVING SO CYBER SECURITY IS OF 

2548
01:48:56,280 --> 01:48:57,240
PARAMOUNT IMPORTANCE.

2549
01:48:57,240 --> 01:48:58,880
AS LAURA EXPLAINED THE WAY WE 

2550
01:48:58,880 --> 01:49:00,320
THINK OF APPROACHING THE 

2551
01:49:00,320 --> 01:49:04,440
DOCUMENT CAN BE SEEN BY 

2552
01:49:04,440 --> 01:49:05,720
ENGINEERS LIKE BUILDING A 

2553
01:49:05,720 --> 01:49:06,560
DOCUMENT THEY CAN APPROACH.

2554
01:49:06,560 --> 01:49:09,840
AND WITH THAT IN MIND, WE 

2555
01:49:09,840 --> 01:49:10,640
THOUGHT TECHNOLOGIES AND 

2556
01:49:10,640 --> 01:49:14,000
THINKING ABOUT WHAT DO THEY DO 

2557
01:49:14,000 --> 01:49:15,320
AND KNOWING WHAT DOES WHAT 

2558
01:49:15,320 --> 01:49:19,080
ISSUES SHOULD I BE CONCERNED 

2559
01:49:19,080 --> 01:49:19,280
ABOUT.

2560
01:49:19,280 --> 01:49:28,560
SO WE HAD FOUR CATEGORIES AND WE

2561
01:49:28,560 --> 01:49:29,560
HIGHLIGHTED ISSUES.

2562
01:49:29,560 --> 01:49:31,160
FOR RECORDING AND SENSING THE 

2563
01:49:31,160 --> 01:49:34,280
IDEA OF DATA OWNERSHIP IS 

2564
01:49:34,280 --> 01:49:35,840
IMPORTANT AND PULLING DATA FROM 

2565
01:49:35,840 --> 01:49:39,400
THE DEVICES, CYBER SECURITY 

2566
01:49:39,400 --> 01:49:42,080
BECOMES AN ISSUE BECAUSE MAYBE 

2567
01:49:42,080 --> 01:49:44,320
IT CAN TELL YOU ABOUT YOU ARE 

2568
01:49:44,320 --> 01:49:46,200
AND YOUR CONDITIONS WHICH ARE 

2569
01:49:46,200 --> 01:49:49,200
SENSITIVE ISSUES FOR PATIENTS 

2570
01:49:49,200 --> 01:49:50,800
WITH THESE DEVICES AND CYBER 

2571
01:49:50,800 --> 01:49:52,520
SECURITY ADDRESSES SIMULATING 

2572
01:49:52,520 --> 01:49:55,640
AND ACTUATING AND WE'RE TALKING 

2573
01:49:55,640 --> 01:49:58,800
ABOUT DEVICES THAT STIMULATE 

2574
01:49:58,800 --> 01:50:01,000
ACTIVITY IN THE BRAIN SO CYBER 

2575
01:50:01,000 --> 01:50:02,680
SECURITY CAN BE IMPORTANT 

2576
01:50:02,680 --> 01:50:05,240
BECAUSE THEY CAN CAUSE HARM IF 

2577
01:50:05,240 --> 01:50:09,760
THEY WERE TO BE TUNED TO RANGES 

2578
01:50:09,760 --> 01:50:13,120
THAT COULD PERHAPS DAMAGE THE 

2579
01:50:13,120 --> 01:50:16,280
BRAIN OR PERIPHERAL NERVOUS 

2580
01:50:16,280 --> 01:50:17,960
SYSTEM AND FOR SOME THAT ACTUATE

2581
01:50:17,960 --> 01:50:19,880
THEY CHANGE BEHAVIOR AND THAT 

2582
01:50:19,880 --> 01:50:22,240
TOUCHES ON AUTONOMY AND AGENCY.

2583
01:50:22,240 --> 01:50:24,720
AM I STILL WHO I AM GIVEN 

2584
01:50:24,720 --> 01:50:26,280
DEVICES MAY CHANGE MY BEHAVIOR 

2585
01:50:26,280 --> 01:50:28,200
BASED ON THE PROGRAMMING.

2586
01:50:28,200 --> 01:50:32,280
SO THE MUCH OF IN ISSUE WITH 

2587
01:50:32,280 --> 01:50:36,000
RECORDING AND SENSING.

2588
01:50:36,000 --> 01:50:38,280
THESE TECHNOLOGIES ALSO MUST BE 

2589
01:50:38,280 --> 01:50:40,720
CONSIDER ISSUES LIKE 

2590
01:50:40,720 --> 01:50:41,280
SELF-RESOLUTION AND THEY 

2591
01:50:41,280 --> 01:50:47,360
REGULATE MOOD ENSURING THE USER 

2592
01:50:47,360 --> 01:50:51,000
CAN'T MISUSE THEM AND CAN BE 

2593
01:50:51,000 --> 01:50:52,520
ADDICTIVE TO THE THERAPIES WE 

2594
01:50:52,520 --> 01:50:54,280
ARE HOPING TO PROVIDE.

2595
01:50:54,280 --> 01:50:56,960
IN THE CASE OF CLOSED-LOOP 

2596
01:50:56,960 --> 01:50:59,040
SYSTEM CYBER SECURITY BECOMES 

2597
01:50:59,040 --> 01:50:59,280
NUANCED.

2598
01:50:59,280 --> 01:51:00,480
THESE ARE SYSTEMS THAT RECORD 

2599
01:51:00,480 --> 01:51:02,000
AND STIMULATE BUT THE STIMULATE 

2600
01:51:02,000 --> 01:51:04,720
IS BASED ON RECORDING BASED ON 

2601
01:51:04,720 --> 01:51:06,160
THE ALGORITHM ON THE DEVICE 

2602
01:51:06,160 --> 01:51:08,280
ITSELF OR WEARABLE OR EXTERNAL.

2603
01:51:08,280 --> 01:51:10,080
IN THIS CASE CYBER SECURITY 

2604
01:51:10,080 --> 01:51:11,040
BECOMES IMPORTANT BECAUSE 

2605
01:51:11,040 --> 01:51:12,280
ALGORITHMS CAN CHANGE.

2606
01:51:12,280 --> 01:51:13,880
STIMULATION AS IT RELATES TO 

2607
01:51:13,880 --> 01:51:16,080
SENSING COULD BE MANIPULATED BY 

2608
01:51:16,080 --> 01:51:18,320
THIRD PARTIES AS A WAY TO MISUSE

2609
01:51:18,320 --> 01:51:18,520
THEM.

2610
01:51:18,520 --> 01:51:20,960
AND THE PRIVACY OF THE DATA IS 

2611
01:51:20,960 --> 01:51:22,040
ALSO IMPORTANT AS IT IS FOR 

2612
01:51:22,040 --> 01:51:23,680
RECORDING AND SENSING.

2613
01:51:23,680 --> 01:51:26,320
IN THE CASE OF DIRECT AND 

2614
01:51:26,320 --> 01:51:28,560
PHYSIOLOGICAL MODULATION I 

2615
01:51:28,560 --> 01:51:29,600
MENTIONED REVERSIBILITY AND 

2616
01:51:29,600 --> 01:51:31,120
LONG-TERM EFFECTS AND WE TALK 

2617
01:51:31,120 --> 01:51:32,280
ABOUT THINGS THAT MAY NOT BE 

2618
01:51:32,280 --> 01:51:34,600
ABLE TO BE FULLY TURNED OFF AND 

2619
01:51:34,600 --> 01:51:35,680
CULTURAL IMPLICATIONS BECOME 

2620
01:51:35,680 --> 01:51:36,200
IMPORTANT.

2621
01:51:36,200 --> 01:51:38,280
THE IDEA OF REVERSIBILITY MAY BE

2622
01:51:38,280 --> 01:51:39,760
DIFFERENT DEPENDING ON THE 

2623
01:51:39,760 --> 01:51:40,640
CULTURAL BACKGROUND.

2624
01:51:40,640 --> 01:51:44,080
THIS BRINGS ME TO AN AREA WHERE 

2625
01:51:44,080 --> 01:51:45,280
I THINK WE HAVE NEED.

2626
01:51:45,280 --> 01:51:46,680
A LOT OF IN THE WORKING GROUP 

2627
01:51:46,680 --> 01:51:48,720
ARE BASED IN THE U.S. AND EUROPE

2628
01:51:48,720 --> 01:51:49,960
AND HAVE PRIMARILY A WESTERN 

2629
01:51:49,960 --> 01:51:52,680
PERSPECTIVE AND WHAT WE CONSIDER

2630
01:51:52,680 --> 01:51:55,000
TO BE THE KEY ISSUES ARE IN THE 

2631
01:51:55,000 --> 01:51:56,320
BACKGROUND.

2632
01:51:56,320 --> 01:52:01,280
WE'D LIKE TO HAVE EXAMPLES OF 

2633
01:52:01,280 --> 01:52:03,400
NON-U.S. CULTURAL IMPLICATIONS 

2634
01:52:03,400 --> 01:52:04,720
AND UNDERSTANDING WHERE SOCIAL 

2635
01:52:04,720 --> 01:52:07,320
STRUCTURES AND ORGANIZATIONS 

2636
01:52:07,320 --> 01:52:09,840
NEED TO BE BROUGHT IN TO HAVE 

2637
01:52:09,840 --> 01:52:10,840
THEIR PERSPECTIVE HEARD TO FLUSH

2638
01:52:10,840 --> 01:52:12,440
OUT THE TOTALITY OF 

2639
01:52:12,440 --> 01:52:14,280
CONSIDERATIONS AND FINALLY WE 

2640
01:52:14,280 --> 01:52:16,640
WANT TO BE ABLE TO INCLUDE FDA 

2641
01:52:16,640 --> 01:52:22,080
AND THE EUROPEAN UNION IN OUR 

2642
01:52:22,080 --> 01:52:23,000
REGULATORY FRAMEWORK TO 

2643
01:52:23,000 --> 01:52:24,240
UNDERSTAND HOW THE REGULATORY 

2644
01:52:24,240 --> 01:52:25,640
BODY IN THE OTHER NATIONS DIFFER

2645
01:52:25,640 --> 01:52:27,960
FROM WHAT WE HAVE IN THE U.S. 

2646
01:52:27,960 --> 01:52:28,800
AND IN EUROPE AND UNDERSTAND 

2647
01:52:28,800 --> 01:52:33,480
THEY'RE CAPTURED KWHIN WHAT WE E

2648
01:52:33,480 --> 01:52:36,720
IS A DOCUMENT TO BE CONSIDERED 

2649
01:52:36,720 --> 01:52:39,160
GLOBALLY CONSIDERED IN 

2650
01:52:39,160 --> 01:52:39,600
NEUROTECHNOLOGIES IN 

2651
01:52:39,600 --> 01:52:42,240
SPECIFICALLY MEDICAL 

2652
01:52:42,240 --> 01:52:42,560
APPLICATIONS.

2653
01:52:42,560 --> 01:52:43,920
WE'RE WORKING ON EXAMPLES OF HOW

2654
01:52:43,920 --> 01:52:47,160
THE FRAMEWORK CAN BE USED AS IT 

2655
01:52:47,160 --> 01:52:48,520
RELATES TO SPECIFIC 

2656
01:52:48,520 --> 01:52:48,880
NEUROTECHNOLOGY.

2657
01:52:48,880 --> 01:52:52,440
WORKING THROUGH CASE STUDIES.

2658
01:52:52,440 --> 01:52:55,400
ONE IS A CLOSED LOOP INTERFACE 

2659
01:52:55,400 --> 01:52:57,120
INSPIRED WHERE ONE DEEP BRAIN 

2660
01:52:57,120 --> 01:52:58,760
ELECTRODE CAN SENSE NEURAL 

2661
01:52:58,760 --> 01:53:00,520
ACTIVITY.

2662
01:53:00,520 --> 01:53:03,520
THE DATA IS THEN USED IN THIS 

2663
01:53:03,520 --> 01:53:04,560
IMPLEMENTED GENERATOR TO DEFINE 

2664
01:53:04,560 --> 01:53:07,040
A STIMULATION PATTERN THAT GOES 

2665
01:53:07,040 --> 01:53:08,280
TO A DIFFERENT BRAIN REGION.

2666
01:53:08,280 --> 01:53:10,560
WE'RE TAKING THE APPROACH OF 

2667
01:53:10,560 --> 01:53:12,400
CLASSIFYING THE TYPE OF 

2668
01:53:12,400 --> 01:53:13,800
TECHNOLOGY IN A CLOSED LOOP 

2669
01:53:13,800 --> 01:53:15,680
SYSTEM AND THINK OF THE ETHICAL 

2670
01:53:15,680 --> 01:53:17,440
AND LEGAL AND SOCIAL AND 

2671
01:53:17,440 --> 01:53:18,840
CULTURAL IMPLICATIONS AND WORK 

2672
01:53:18,840 --> 01:53:20,680
THROUGH THIS AS IT PERTAINS TO 

2673
01:53:20,680 --> 01:53:22,840
THIS IMPLEMENTATION.

2674
01:53:22,840 --> 01:53:23,960
IN THIS CASE CLOSED LOOP THERAPY

2675
01:53:23,960 --> 01:53:25,360
FOR DEPRESSION.

2676
01:53:25,360 --> 01:53:28,720
WE'RE LOOKING FOR OTHER 

2677
01:53:28,720 --> 01:53:31,960
APPLICATIONS FOR US TO USE AS 

2678
01:53:31,960 --> 01:53:33,160
CASE STUDY TO GIVE EXAMPLES HOW 

2679
01:53:33,160 --> 01:53:34,680
TO INTERACT WITH THE FRAMEWORK.

2680
01:53:34,680 --> 01:53:36,520
WITH THAT I'D LIKE TO THANK THE 

2681
01:53:36,520 --> 01:53:38,200
CONTRIBUTORS TO THIS WORKING 

2682
01:53:38,200 --> 01:53:38,400
GROUP.

2683
01:53:38,400 --> 01:53:43,880
THEY'VE BEEN FANTASTIC OVER MANY

2684
01:53:43,880 --> 01:53:44,280
MONTHS.

2685
01:53:44,280 --> 01:53:46,640
EVERYONE'S A VOLUNTEER AND ALL 

2686
01:53:46,640 --> 01:53:49,400
WE'VE BEEN ABLE TO PRODUCE IS A 

2687
01:53:49,400 --> 01:53:51,160
CREDIT TO THEM AND WHAT WE'VE 

2688
01:53:51,160 --> 01:53:52,680
BEEN ABLE TO PUT TOGETHER THAT 

2689
01:53:52,680 --> 01:53:54,320
WILL HOPEFULLY BE OF SERVICE TO 

2690
01:53:54,320 --> 01:53:54,880
THE COMMUNITY.

2691
01:53:54,880 --> 01:53:56,240
THAT BEING SAID WE STILL NEED 

2692
01:53:56,240 --> 01:53:56,440
HELP.

2693
01:53:56,440 --> 01:53:58,080
IF YOU WOULD LIKE TO GET 

2694
01:53:58,080 --> 01:54:00,280
INVOLVED, WE'RE ALWAYS LOOKING 

2695
01:54:00,280 --> 01:54:04,440
FOR MORE VOLUNTEER PARTICULARLY 

2696
01:54:04,440 --> 01:54:06,960
FROM PEOPLE FROM OUTSIDE THE 

2697
01:54:06,960 --> 01:54:08,320
U.S. AND ANYONE WHO HAS A 

2698
01:54:08,320 --> 01:54:09,920
PASSION FOR THIS WE'D LOVE TO 

2699
01:54:09,920 --> 01:54:10,680
HAVE HELP OUT.

2700
01:54:10,680 --> 01:54:11,840
THANK YOU FOR YOUR ATTENTION AND

2701
01:54:11,840 --> 01:54:13,840
THANK YOU FOR THE OPPORTUNITY TO

2702
01:54:13,840 --> 01:54:16,720
DISCUSS THIS WITH YOU AND HOPE 

2703
01:54:16,720 --> 01:54:27,160
TO KEEP YOU ALL INVOLVED.

2704
01:54:17,160 --> 01:54:18,920
>>IN OUR SECTION WE 

2705
01:54:18,920 --> 01:54:22,480
HAVE THREE SPEAKERS, SAR ARE 

2706
01:54:22,480 --> 01:54:24,360
WILL TALK ABOUT UCI AND AGENCY 

2707
01:54:24,360 --> 01:54:29,600
AND I'LL TALK ABOUT DEEP BRAIN 

2708
01:54:29,600 --> 01:54:31,320
STIMULATION AND WE'LL HAVE A 

2709
01:54:31,320 --> 01:54:35,640
TALK ON POST-TRIAL OBLIGATIONS.

2710
01:54:35,640 --> 01:54:37,840
SARA, OFF TO YOU.

2711
01:54:37,840 --> 01:54:39,640
>> THANK YOU, JOE.

2712
01:54:39,640 --> 01:54:42,440
I'M SARAH GERRING FROM THE 

2713
01:54:42,440 --> 01:54:45,160
UNIVERSITY OF WASHINGTON WHERE I

2714
01:54:45,160 --> 01:54:46,440
WORK IN THE PHILOSOPHY 

2715
01:54:46,440 --> 01:54:48,520
DEPARTMENT AND THE CENTER FOR 

2716
01:54:48,520 --> 01:54:48,880
NEUROTECHNOLOGY.

2717
01:54:48,880 --> 01:54:51,640
I WANT TO TALK ABOUT BCI AND 

2718
01:54:51,640 --> 01:54:53,560
HUMAN AGENCY.

2719
01:54:53,560 --> 01:54:56,800
REALLY QUICKLY LOOK AT ROSIE THE

2720
01:54:56,800 --> 01:55:01,280
RIVETER AND WE'RE TALKING ABOUT 

2721
01:55:01,280 --> 01:55:04,520
THE DOGMATIC ACTION OF AGENCY 

2722
01:55:04,520 --> 01:55:07,160
BEING DOING INTENTIONALLY VERSUS

2723
01:55:07,160 --> 01:55:08,640
BEING ACTED ON AND INVOLVES A 

2724
01:55:08,640 --> 01:55:12,840
FEELING THAT WE ARE THE AUTHORS 

2725
01:55:12,840 --> 01:55:14,640
SO OUR ACTIONS FLOW FROM OUR 

2726
01:55:14,640 --> 01:55:16,200
BELIEFS AND INTENTION.

2727
01:55:16,200 --> 01:55:18,880
I ALSO WANT TO KNOW THAT 

2728
01:55:18,880 --> 01:55:21,080
PARADIGM OF AGENCY IS NOT ALL 

2729
01:55:21,080 --> 01:55:21,880
THAT IT IS.

2730
01:55:21,880 --> 01:55:29,240
WE CAN BE AGENTS WITHOUT 

2731
01:55:29,240 --> 01:55:30,480
CONSCIOUS ACTIONS AND HAVE 

2732
01:55:30,480 --> 01:55:31,680
HABITUAL ACTIONS THAT ARE 

2733
01:55:31,680 --> 01:55:34,120
NONETHELESS OUR OWN AND NOT BE 

2734
01:55:34,120 --> 01:55:35,640
FULLY INTENTIONAL AGENCY AS WHEN

2735
01:55:35,640 --> 01:55:38,160
WE ACT FROM IMPLICIT BIAS AND 

2736
01:55:38,160 --> 01:55:40,200
DON'T NEED TO BE TOTALLY FREE 

2737
01:55:40,200 --> 01:55:41,680
FROM OUTSIDE INFLUENCE ON THE 

2738
01:55:41,680 --> 01:55:43,480
IDEA OF MAN IS AN ISLAND ISN'T 

2739
01:55:43,480 --> 01:55:44,960
ACCURATE I THINK WHEN WE THINK 

2740
01:55:44,960 --> 01:55:46,640
ABOUT THE WAYS IN WHICH WE'RE 

2741
01:55:46,640 --> 01:55:48,120
AGENTS IN THE WORLD.

2742
01:55:48,120 --> 01:55:52,880
WE CAN CERTAINLY BE ACROSS THE 

2743
01:55:52,880 --> 01:55:55,280
WHOLE SPECTRUM FROM A DIRECTION 

2744
01:55:55,280 --> 01:56:00,400
FROM ACTING TO BEING COERCED.

2745
01:56:00,400 --> 01:56:03,120
WE MAY THINK OF AGENCY COMING A 

2746
01:56:03,120 --> 01:56:11,160
PART FROM A SENSE OF AGENCY AND 

2747
01:56:11,160 --> 01:56:12,200
INVOLVES A SENSE OF OWNER OVER 

2748
01:56:12,200 --> 01:56:13,880
THE EXPERIENCES AND ACTIONS THAT

2749
01:56:13,880 --> 01:56:15,200
SHAPE OUR IDENTITY AND ONE OF 

2750
01:56:15,200 --> 01:56:17,360
THE PROBLEMS HERE IS THAT 

2751
01:56:17,360 --> 01:56:19,280
SOMETIMES AGENCY AND THE SENSE 

2752
01:56:19,280 --> 01:56:29,720
OF AGENCY CAN BE PULLED A PART A

2753
01:56:29,720 --> 01:56:31,040
LITTLE BIT TO BELIEVE WE ARE AND

2754
01:56:31,040 --> 01:56:32,560
HAVEN'T ACTED AND THIS IS 

2755
01:56:32,560 --> 01:56:34,000
THROUGH DIFFERENT EXPERIMENTAL 

2756
01:56:34,000 --> 01:56:34,240
DESIGNS.

2757
01:56:34,240 --> 01:56:36,280
ON THE CONTRARY SIDE WE CAN 

2758
01:56:36,280 --> 01:56:39,320
BELIEVE WE ARE NOT ACTING WHEN 

2759
01:56:39,320 --> 01:56:42,320
IN FACT WE ARE ACTING AND 

2760
01:56:42,320 --> 01:56:44,880
INFLUENCING ACTION DIRECTLY.

2761
01:56:44,880 --> 01:56:46,840
WE HAVE TO PAY ATTENTION TO HOW 

2762
01:56:46,840 --> 01:56:48,400
THINGS WORK TOGETHER AND HOW 

2763
01:56:48,400 --> 01:56:50,320
THEY COME A PART SO WE DON'T 

2764
01:56:50,320 --> 01:56:53,960
INTERVENE ON THE BRAIN IN WAYS 

2765
01:56:53,960 --> 01:56:56,680
THAT MAY MANIPULATE A SENSE OF 

2766
01:56:56,680 --> 01:56:59,040
AGENCY WITHOUT EMPOWERING 

2767
01:56:59,040 --> 01:56:59,280
AGENCY.

2768
01:56:59,280 --> 01:57:00,880
JUST A LITTLE BIT OF BACKGROUND.

2769
01:57:00,880 --> 01:57:05,480
I WORK WITH THE CENTER FOR 

2770
01:57:05,480 --> 01:57:08,120
NEUROTECHNOLOGY AT U DUB AND 

2771
01:57:08,120 --> 01:57:13,320
HAVE AN ETHICS GRANT AND I'LL 

2772
01:57:13,320 --> 01:57:16,400
REPORT OUT A LITTLE BIT FROM 

2773
01:57:16,400 --> 01:57:18,240
INTERVIEWS OVER THE SAME PERSON 

2774
01:57:18,240 --> 01:57:21,040
OVER MULTIPLE TIMES DONE BY ONE 

2775
01:57:21,040 --> 01:57:22,600
OF OUR POST-DOCS USING AN AGENCY

2776
01:57:22,600 --> 01:57:27,840
GUIDE IN THE GROUP.

2777
01:57:27,840 --> 01:57:30,440
 FIRST, A LOT OF THE BCI DEVICES

2778
01:57:30,440 --> 01:57:31,360
HAVE BEEN VERY EFFECTIVE IN 

2779
01:57:31,360 --> 01:57:37,320
GIVING PEOPLE SOME SENSE OF 

2780
01:57:37,320 --> 01:57:41,320
CONTROL I JUST WANT TO NOTE TO 

2781
01:57:41,320 --> 01:57:45,000
THE AUDIENCE THE EXCITEMENT 

2782
01:57:45,000 --> 01:57:46,880
AROUND THINKING AND WATCHING 

2783
01:57:46,880 --> 01:57:48,760
THIS MOVE HOI WANTED IT TO MOVE 

2784
01:57:48,760 --> 01:57:49,520
WAS SHOCKING I WAS ABLE TO MOVE 

2785
01:57:49,520 --> 01:57:54,920
THE THUMB.

2786
01:57:54,920 --> 01:57:56,920
YOU THINK THAT'S WHAT BUILT MY 

2787
01:57:56,920 --> 01:57:58,720
BOND WITH THE ROBOTIC ARM SEEING

2788
01:57:58,720 --> 01:58:03,680
IT MOVE HOW I WANTED IT TO 

2789
01:58:03,680 --> 01:58:08,480
CONTROL OR ANOTHER PERSON SAID 

2790
01:58:08,480 --> 01:58:11,000
WHEN I MOVED THE CURSER ON THE 

2791
01:58:11,000 --> 01:58:12,720
SCREEN IT FEELS LIKE AN 

2792
01:58:12,720 --> 01:58:13,000
APPENDAGE.

2793
01:58:13,000 --> 01:58:15,360
IF THEY TELL ME TO MOVE IT WITH 

2794
01:58:15,360 --> 01:58:16,880
THE THUMB I MENTALLY MOVE THE 

2795
01:58:16,880 --> 01:58:19,080
THUMB TO MOVE THE CURSER.

2796
01:58:19,080 --> 01:58:20,960
IT FEELS LIKE I'M PUSHING AN 

2797
01:58:20,960 --> 01:58:23,080
OBJECT BECAUSE I GET THE 

2798
01:58:23,080 --> 01:58:23,400
SENSATION.

2799
01:58:23,400 --> 01:58:24,280
THERE'S NOT OBJECT BEING PUSHED 

2800
01:58:24,280 --> 01:58:26,600
BUT FEELS THAT WAY.

2801
01:58:26,600 --> 01:58:30,520
OR ANOTHER PERSON SAYS IT WAS 

2802
01:58:30,520 --> 01:58:33,040
KIND OF TWILIGHT ZONISH TO ME I 

2803
01:58:33,040 --> 01:58:34,520
COULD THINK OF SOMETHING AND THE

2804
01:58:34,520 --> 01:58:35,680
COMPUTER NEW MY BRAIN WAS TRYING

2805
01:58:35,680 --> 01:58:37,280
TO DO IT AND IT DID IT.

2806
01:58:37,280 --> 01:58:38,720
THESE ARE SUCCESSES WHERE IT 

2807
01:58:38,720 --> 01:58:41,920
FEELS LIKE IT'S VERY ENHANCING 

2808
01:58:41,920 --> 01:58:47,680
OF A PERSON'S CAPACITY.

2809
01:58:47,680 --> 01:58:49,120
THIS WAS SURPRISING TO ME HOW 

2810
01:58:49,120 --> 01:58:50,840
MANY WHO WERE PARTICIPANTS IN 

2811
01:58:50,840 --> 01:58:53,040
THE STUDIES SAID DOING THIS WAS 

2812
01:58:53,040 --> 01:58:55,040
MENTALLY AND PHYSICALLY 

2813
01:58:55,040 --> 01:58:55,360
EXHAUSTING.

2814
01:58:55,360 --> 01:58:57,880
SO SOME THE TIME I XHONT 

2815
01:58:57,880 --> 01:58:59,200
ACCOMPLISH WHAT THEY WANTED KNOW

2816
01:58:59,200 --> 01:59:01,080
AND I CAME HOME AND PRACTICE ALL

2817
01:59:01,080 --> 01:59:03,040
DAY LONG AND HAD TO LEARN HOW TO

2818
01:59:03,040 --> 01:59:04,680
COME HOME AND RELAX BECAUSE FOR 

2819
01:59:04,680 --> 01:59:06,120
A YEAR I COULDN'T DO THAT.

2820
01:59:06,120 --> 01:59:10,040
I WAS JUST WORKING WITH A 

2821
01:59:10,040 --> 01:59:11,320
ROBOTIC ARM BUT WASN'T 

2822
01:59:11,320 --> 01:59:12,520
PHYSICALLY CONNECTED.

2823
01:59:12,520 --> 01:59:14,080
I WAS TRYING TO ACCOMPLISH IT 

2824
01:59:14,080 --> 01:59:19,320
AND IT WAS TOO MUCH AND OVER 

2825
01:59:19,320 --> 01:59:25,320
WEHELMING AND WHEN I'M DONE WIT 

2826
01:59:25,320 --> 01:59:27,040
A SESSION I'M PRETTY BEAT WHEN 

2827
01:59:27,040 --> 01:59:29,160
DOING THINGS WE HAVEN'T DONE AND

2828
01:59:29,160 --> 01:59:30,520
LIKE OVER TIME IT'S LIKE A 

2829
01:59:30,520 --> 01:59:32,400
MUSCLE IN MY MIND IN MY ABILITY 

2830
01:59:32,400 --> 01:59:35,080
TO PUSH THE CURSER STRENGTHENS 

2831
01:59:35,080 --> 01:59:35,600
OVER TIME.

2832
01:59:35,600 --> 01:59:37,040
ANOTHER PARTICIPANT SAID IN THE 

2833
01:59:37,040 --> 01:59:38,480
BEGINNING I PUT A LOT OF EFFORT 

2834
01:59:38,480 --> 01:59:41,440
IN TO IT WHERE I WAS TIRED.

2835
01:59:41,440 --> 01:59:42,720
MY ARMS WERE TIRED.

2836
01:59:42,720 --> 01:59:44,480
THIS IS A PERSON WHO DOESN'T 

2837
01:59:44,480 --> 01:59:49,040
HAVE MOTOR CONTROL OVER THEIR 

2838
01:59:49,040 --> 01:59:52,920
ARMS AND SO MY ARMS WERE TIRED 

2839
01:59:52,920 --> 01:59:54,520
AS IF IT WERE MY HAND AND MY 

2840
01:59:54,520 --> 01:59:55,680
ARMS GET TIRED.

2841
01:59:55,680 --> 01:59:58,040
I THINK THIS IS INTERESTING.

2842
01:59:58,040 --> 02:00:01,320
ONE OF THE REASONS WE WANT TO 

2843
02:00:01,320 --> 02:00:04,440
ASK PEOPLE ABOUT THEIR 

2844
02:00:04,440 --> 02:00:05,360
PHENOMENAL EXPERIENCE OF USING 

2845
02:00:05,360 --> 02:00:06,000
THE DEVICES.

2846
02:00:06,000 --> 02:00:08,440
IT DIDN'T ALWAYS GO SO WELL.

2847
02:00:08,440 --> 02:00:10,760
SOME PEOPLE REPORT OUT ON 

2848
02:00:10,760 --> 02:00:11,480
FRUSTRATING EXPERIENCES.

2849
02:00:11,480 --> 02:00:12,480
IT'S AN EBB AND FLOW.

2850
02:00:12,480 --> 02:00:13,760
SOMETIMES WE BREAKTHROUGH AND 

2851
02:00:13,760 --> 02:00:17,160
HAVE A GREAT SESSION, OTHER 

2852
02:00:17,160 --> 02:00:20,080
TIMES THE COMPUTER IS NOT ACTING

2853
02:00:20,080 --> 02:00:22,440
RIGHT OR READING THE COMPUTER 

2854
02:00:22,440 --> 02:00:24,480
100% OR WHEN THEY MAKE TWEAKS TO

2855
02:00:24,480 --> 02:00:25,200
THE ALGORITHMS SOMETIMES THEY 

2856
02:00:25,200 --> 02:00:27,160
WORK AND SOMETIMES THEY DON'T.

2857
02:00:27,160 --> 02:00:27,680
IT'S BACK AND FORTH.

2858
02:00:27,680 --> 02:00:32,360
ALWAYS BACK AND FORTH TO THE 

2859
02:00:32,360 --> 02:00:33,160
DRAWING BOARD.

2860
02:00:33,160 --> 02:00:35,160
AND MY DAUGHTER'S JUST 

2861
02:00:35,160 --> 02:00:36,120
GRADUATING AND MOVING ON THROUGH

2862
02:00:36,120 --> 02:00:37,880
HIGH SCHOOL AND THIS IS HER 

2863
02:00:37,880 --> 02:00:38,480
EXPERIENCE TOO.

2864
02:00:38,480 --> 02:00:39,640
I FEEL FRUSTRATED BECAUSE I'M 

2865
02:00:39,640 --> 02:00:40,760
TRYING TO PUSH THROUGH AND FEEL 

2866
02:00:40,760 --> 02:00:43,040
LIKE THE COMPUTER'S HOLDING ME 

2867
02:00:43,040 --> 02:00:43,240
BACK.

2868
02:00:43,240 --> 02:00:44,440
THAT FRUSTRATION YOU GET WHEN 

2869
02:00:44,440 --> 02:00:45,840
YOUR INSTRUCTOR SAYS YOU HAVE TO

2870
02:00:45,840 --> 02:00:47,920
DO A GROUP PROJECT AND YOU GET 

2871
02:00:47,920 --> 02:00:50,640
THAT ONE PERSON IN YOUR GROUP 

2872
02:00:50,640 --> 02:00:53,600
WHO DOESN'T PULL HIS WEIGHT.

2873
02:00:53,600 --> 02:00:54,880
I'M WORKING HERE AND THAT 

2874
02:00:54,880 --> 02:00:57,400
COMPUTER IS SCREWING UP TODAY SO

2875
02:00:57,400 --> 02:01:01,520
THE PERSON'S TRYING TO BE 

2876
02:01:01,520 --> 02:01:02,920
TANGENTIAL AND IT FEELS LIKE 

2877
02:01:02,920 --> 02:01:06,760
THERE'S A BLOCK IN DOING THAT 

2878
02:01:06,760 --> 02:01:07,960
SUCCESSFULLY WHERE AGAIN ANOTHER

2879
02:01:07,960 --> 02:01:09,560
PARTICIPANT WHO SAID WE'RE 

2880
02:01:09,560 --> 02:01:11,640
ROLLING ALONG REALLY GOOD AND 

2881
02:01:11,640 --> 02:01:14,080
NOW THINGS AREN'T WORKING.

2882
02:01:14,080 --> 02:01:14,800
IT WAS FRUSTRATING.

2883
02:01:14,800 --> 02:01:16,480
I HADN'T OPENED UP TO THE 

2884
02:01:16,480 --> 02:01:17,400
THOUGHT MAYBE THEY'RE DOING 

2885
02:01:17,400 --> 02:01:19,320
SOMETHING DIFFERENT OR ARE YOU 

2886
02:01:19,320 --> 02:01:20,240
JOKING WITH ME.

2887
02:01:20,240 --> 02:01:22,440
IT'S A BIT OF UNCERTAINTY THERE 

2888
02:01:22,440 --> 02:01:28,280
WHICH LEADS ME TO MY NEXT SLIDE,

2889
02:01:28,280 --> 02:01:28,960
UNCERTA

2890
02:01:28,960 --> 02:01:29,720
UNCERTAINTY, THERE'S A FORCE I 

2891
02:01:29,720 --> 02:01:35,520
FEEL I'M WRESTLING AGAINST AND 

2892
02:01:35,520 --> 02:01:37,080
SOMETIMES IT'S OVERWHELMING AND 

2893
02:01:37,080 --> 02:01:39,080
SOMETIMES IT FEELS LIKE IT'S 

2894
02:01:39,080 --> 02:01:40,400
PUSHING ME AND DON'T UNDERSTAND 

2895
02:01:40,400 --> 02:01:42,160
WHY IT HAPPENS ON SOME OCCASIONS

2896
02:01:42,160 --> 02:01:43,120
AND NOT OTHERS BUT IT'S 

2897
02:01:43,120 --> 02:01:44,880
SOMETHING THEY'RE TRYING TO 

2898
02:01:44,880 --> 02:01:46,080
FIGURE OUT.

2899
02:01:46,080 --> 02:01:48,240
SOMEBODY ELSE, IS IT NOT TUNED 

2900
02:01:48,240 --> 02:01:48,480
WELL?

2901
02:01:48,480 --> 02:01:49,720
SOMETHING IS NOT WORKING AND I'M

2902
02:01:49,720 --> 02:01:52,440
NOT SURE IF IT'S ME OR IF IT'S 

2903
02:01:52,440 --> 02:01:55,280
THE DEVICE.

2904
02:01:55,280 --> 02:01:59,920
FINALLY, ONE OTHER PARTICIPANT 

2905
02:01:59,920 --> 02:02:01,840
SAID I COULD JUST BE TIRED AND 

2906
02:02:01,840 --> 02:02:03,720
NOT FOLLOWING ALONG AS I SHOULD 

2907
02:02:03,720 --> 02:02:03,920
HAVE.

2908
02:02:03,920 --> 02:02:07,320
YOU END UP HAVING A BIAS TOWARDS

2909
02:02:07,320 --> 02:02:11,160
ONE DIRECTION OR THE OTHER AND 

2910
02:02:11,160 --> 02:02:11,800
CAN'T USE THE DECODER AND OTHER 

2911
02:02:11,800 --> 02:02:13,360
DAYS YOU MAY END UP WITH ONE 

2912
02:02:13,360 --> 02:02:21,360
THAT'S REALLY BAD.

2913
02:02:21,360 --> 02:02:25,280
THIS IS TO GIVE A SENSE OF THE 

2914
02:02:25,280 --> 02:02:27,000
DIFFICULTIES AND INTERESTING 

2915
02:02:27,000 --> 02:02:28,680
EXPERIENCES PEOPLE HAVE HAD 

2916
02:02:28,680 --> 02:02:30,280
PARTICIPATING IN THE VCI 

2917
02:02:30,280 --> 02:02:30,480
STUDIES.

2918
02:02:30,480 --> 02:02:33,040
THEY'RE OFTEN LONG-TERM STUDIES 

2919
02:02:33,040 --> 02:02:35,680
THAT CAN LAST THREE TO FIVE 

2920
02:02:35,680 --> 02:02:36,520
YEARS AND SOMETIMES LONGER.

2921
02:02:36,520 --> 02:02:38,400
PEOPLE COME IN THREE TIMES A 

2922
02:02:38,400 --> 02:02:39,360
WEEK SOMETIMES FOR A COUPLE 

2923
02:02:39,360 --> 02:02:40,720
HOURS AT A TIME.

2924
02:02:40,720 --> 02:02:45,560
IT'S IMPORTANT WE PAY ATTENTION 

2925
02:02:45,560 --> 02:02:47,600
TO HOW TRYING TO ACT OR EXERT 

2926
02:02:47,600 --> 02:02:49,000
INTENTION ON THE WORLD THROUGH 

2927
02:02:49,000 --> 02:02:51,080
THE DEVICES CAN ALTER A PERSON'S

2928
02:02:51,080 --> 02:02:53,520
SENSE OF THEMSELVES AS AN AGENT.

2929
02:02:53,520 --> 02:02:55,080
ONE OF THE THINGS OUR GROUP HAS 

2930
02:02:55,080 --> 02:02:58,360
DONE IN THINKING THROUGH THESE 

2931
02:02:58,360 --> 02:03:01,280
ISSUES IS TO LOOK AT DIFFERENT 

2932
02:03:01,280 --> 02:03:03,680
DIMENSIONS OF WHAT WE WOULD CALL

2933
02:03:03,680 --> 02:03:07,280
DIFFERENT DIMENSIONS OF HUMAN 

2934
02:03:07,280 --> 02:03:10,720
AGENCY.

2935
02:03:10,720 --> 02:03:12,880
THIS LIST IS NOT MEANT TO BE 

2936
02:03:12,880 --> 02:03:13,520
COMPREHENSIVE OR OTHER THINGS 

2937
02:03:13,520 --> 02:03:14,960
WE'RE NOT ACCOUNTING FOR AT THE 

2938
02:03:14,960 --> 02:03:18,120
MOMENT BUT FROM WHAT WE HEARD 

2939
02:03:18,120 --> 02:03:19,880
FROM RESEARCH PARTICIPANTS WE 

2940
02:03:19,880 --> 02:03:21,960
MAY INCLUDE RESPONSIBILITIES AND

2941
02:03:21,960 --> 02:03:24,880
QUESTIONS AROUND DID I DO THAT 

2942
02:03:24,880 --> 02:03:27,640
OR WAS THAT THE MACHINE.

2943
02:03:27,640 --> 02:03:30,840
AM I RESPONSE I AM FOR THE 

2944
02:03:30,840 --> 02:03:33,240
DEVICE NOT WORKING AND THOSE ARE

2945
02:03:33,240 --> 02:03:35,640
THINGS I FOCUS ON FOR TODAY AND 

2946
02:03:35,640 --> 02:03:36,000
AUTHENTICITY.

2947
02:03:36,000 --> 02:03:39,080
DOES IT FEEL LIKE ME WHEN 

2948
02:03:39,080 --> 02:03:39,440
ACTING?

2949
02:03:39,440 --> 02:03:41,080
ARE THERE ISSUES THAT CAN 

2950
02:03:41,080 --> 02:03:44,320
INTERVENE ON MY SENSE OF 

2951
02:03:44,320 --> 02:03:46,040
IDENTITY AS OTHER PREVIOUS 

2952
02:03:46,040 --> 02:03:47,680
SPEAKERS HAVE MENTIONED.

2953
02:03:47,680 --> 02:03:51,600
ONE THING WHEN WE LOOK AT VCI 

2954
02:03:51,600 --> 02:03:53,240
DEVICES THAT OFFER SENSORY 

2955
02:03:53,240 --> 02:03:55,000
FEEDBACK THROUGH ROBOTIC ARM OR 

2956
02:03:55,000 --> 02:04:00,280
IN ANOTHER WAY DIRECTLY TO 

2957
02:04:00,280 --> 02:04:03,000
SENSORY CORTEX IS ISSUES OF 

2958
02:04:03,000 --> 02:04:05,840
TRUST DID THE SENSORY IMPRESSION

2959
02:04:05,840 --> 02:04:07,720
I GOT REALLY HAPPEN?

2960
02:04:07,720 --> 02:04:11,400
CAN I TRUST MYSELF TO KNOW IT 

2961
02:04:11,400 --> 02:04:15,680
DID OR ARE MY SENSORY CAPACITIES

2962
02:04:15,680 --> 02:04:17,640
IN ALIGNMENT BASED ON THE 

2963
02:04:17,640 --> 02:04:19,720
SENSORY FEEDBACK AND ONE OF THE 

2964
02:04:19,720 --> 02:04:23,680
PEOPLE USING ROBOTIC ARM WITH 

2965
02:04:23,680 --> 02:04:29,520
SENSORS ON ITS FINGER TIPS FOR 

2966
02:04:29,520 --> 02:04:32,040
HIM THE FEELING OF THE TOUCH WAS

2967
02:04:32,040 --> 02:04:35,320
NOT AT THE FINGER TIPS BUT THE 

2968
02:04:35,320 --> 02:04:35,600
KNUCKLES.

2969
02:04:35,600 --> 02:04:36,240
THERE'S AN ADJUSTMENT IN THE 

2970
02:04:36,240 --> 02:04:42,240
BRAIN TO FIGURE OUT IF THE SEN 

2971
02:04:42,240 --> 02:04:42,720
ASAT

2972
02:04:42,720 --> 02:04:45,800
SATION IS -- SENSATION IS 

2973
02:04:45,800 --> 02:04:47,680
ACCURATE AND WHO HAS ACCESS TO 

2974
02:04:47,680 --> 02:04:49,160
INFORMATION FROM WHAT IS 

2975
02:04:49,160 --> 02:04:50,240
RECORDED MR. FROM MY BRAIN AND 

2976
02:04:50,240 --> 02:04:52,320
HOW DO I NEGOTIATE MY OWN 

2977
02:04:52,320 --> 02:04:52,600
BOUNDARIES?

2978
02:04:52,600 --> 02:04:56,720
I THINK I'M OUT OF TIME.

2979
02:04:56,720 --> 02:04:59,680
THANK YOU TO MY WONDERFUL U-W 

2980
02:04:59,680 --> 02:05:00,080
NEUROETHICS TEAM.

2981
02:05:00,080 --> 02:05:10,240
THANKS.

2982
02:05:11,520 --> 02:05:15,080
>> I'M JOE FINN FROM WEILL

2983
02:05:15,080 --> 02:05:17,080
CORNELL LAW SCHOOL AND I WANT TO

2984
02:05:17,080 --> 02:05:21,440
REPORT ON THOSE WHO PARTICIPATED

2985
02:05:21,440 --> 02:05:23,480
IN A TRIAL AND I ENCOURAGE YOU 

2986
02:05:23,480 --> 02:05:31,120
TO SEE POSTER 337 AVAILABLE 

2987
02:05:31,120 --> 02:05:32,360
IMMEDIATELY AFTER THE 

2988
02:05:32,360 --> 02:05:32,920
PRESENTATION.

2989
02:05:32,920 --> 02:05:34,600
THEY ACTIVATED THE CIRCUIT AND 

2990
02:05:34,600 --> 02:05:43,760
WE ENROLLED SIX FOLKS WITH 

2991
02:05:43,760 --> 02:05:47,720
SEVERE TO MODERATE TBI AND ONE 

2992
02:05:47,720 --> 02:05:50,480
WAS EX PLANTED FOR A SECTION.

2993
02:05:50,480 --> 02:05:52,520
ALL WHO COMPLETE THE STUDY HAD A

2994
02:05:52,520 --> 02:05:53,880
10% OR GREATER IMPROVEMENT IN 

2995
02:05:53,880 --> 02:05:57,680
THE TRAIL MAKING TEST PART B 

2996
02:05:57,680 --> 02:05:59,280
WHICH IS A MEASURE OF COGNITIVE 

2997
02:05:59,280 --> 02:06:01,600
PROCESSING SPEED AND IMPROVED 

2998
02:06:01,600 --> 02:06:03,440
EXECUTIVE FUNCTION.

2999
02:06:03,440 --> 02:06:06,800
REMARKABLY, TWO OF THE FIVE 

3000
02:06:06,800 --> 02:06:08,520
SUBJECTS HAD A ONE-POINT 

3001
02:06:08,520 --> 02:06:16,520
INCREASE IN THE GOS-E SCALE AND 

3002
02:06:16,520 --> 02:06:17,840
THIS IS POSSIBLE FOR WHEN 

3003
02:06:17,840 --> 02:06:19,080
NOTHING ELSE IS AVAILABLE.

3004
02:06:19,080 --> 02:06:25,240
WE DID SEMI STRUCTURED 

3005
02:06:25,240 --> 02:06:30,000
INTERVIEWS POST-OPERATIVELY AND 

3006
02:06:30,000 --> 02:06:33,160
THEY ALL HAD DECISION MAKING 

3007
02:06:33,160 --> 02:06:35,480
CAPACITY AND WERE ASSESSED TO 

3008
02:06:35,480 --> 02:06:38,440
PROVIDE AUTONOMOUS CONSENT AND 

3009
02:06:38,440 --> 02:06:40,720
THE SUBJECTS AND AT LEAST ONE OF

3010
02:06:40,720 --> 02:06:43,440
THEIR FAMILY MEMBERS AND THIS IS

3011
02:06:43,440 --> 02:06:47,320
A MASSIVE AMOUNT OF VERB YAJ WE 

3012
02:06:47,320 --> 02:06:50,160
HAD A WORD COUNT OF 70,000 WORDS

3013
02:06:50,160 --> 02:06:54,560
FROM THE SUBJECTS AND FAMILY 

3014
02:06:54,560 --> 02:06:55,680
MEMBERS AND SIMILAR IN THE 

3015
02:06:55,680 --> 02:06:57,120
COHORT ACCOUNTING FOR THE LOSS 

3016
02:06:57,120 --> 02:06:57,880
OF THE ONE SUBJECT WHO WAS NOT 

3017
02:06:57,880 --> 02:07:06,920
FOLLOWED.

3018
02:07:06,920 --> 02:07:09,320
WE GOT TRANSCRIPTIONS OF THE 

3019
02:07:09,320 --> 02:07:12,280
TAPE AND NEUROETHICISTS TALK 

3020
02:07:12,280 --> 02:07:14,560
ABOUT HOW NEUROTECHNOLOGY 

3021
02:07:14,560 --> 02:07:17,640
DISRUPTS PERSONAL IDENTITY IT'S 

3022
02:07:17,640 --> 02:07:22,080
THE ENTRY THAT DISRUPTS PERSONAL

3023
02:07:22,080 --> 02:07:25,080
IDENTITY ACCORDING TO THE OF MY 

3024
02:07:25,080 --> 02:07:27,440
DAUGHTER CHANGED FOREVER KNOWING

3025
02:07:27,440 --> 02:07:29,520
SHE WOULD NEVER BE WHO SHE WAS 

3026
02:07:29,520 --> 02:07:29,880
BEFORE.

3027
02:07:29,880 --> 02:07:32,840
I'M RAISING HER ALL OVER AGAIN.

3028
02:07:32,840 --> 02:07:34,040
ANOTHER SAYING I'M SIMILAR BUT 

3029
02:07:34,040 --> 02:07:35,880
NOT THE SAME AND ANOTHER SAID 

3030
02:07:35,880 --> 02:07:38,600
HE'S AN IMMATURE VERSION OF HIS 

3031
02:07:38,600 --> 02:07:39,920
FORMER SELF.

3032
02:07:39,920 --> 02:07:40,840
CONSENT ISSUES WERE INTERESTING.

3033
02:07:40,840 --> 02:07:44,960
THE SUBJECTS WERE MORE FOCUSSED 

3034
02:07:44,960 --> 02:07:49,960
ON BENEFITS OF ALTRUISM AND THE 

3035
02:07:49,960 --> 02:07:50,800
FAMILIES WERE MORE CONCERN ABOUT

3036
02:07:50,800 --> 02:07:51,400
RISK.

3037
02:07:51,400 --> 02:07:53,280
MANY WANTED TO MAKE A 

3038
02:07:53,280 --> 02:07:53,600
CONTRIBUTION.

3039
02:07:53,600 --> 02:07:54,440
IT'S KIND OF COOL.

3040
02:07:54,440 --> 02:07:55,960
IT COULD BE GROUNDBREAKING.

3041
02:07:55,960 --> 02:07:57,600
I COULD BE HELPING A LOT OF 

3042
02:07:57,600 --> 02:07:57,880
PEOPLE.

3043
02:07:57,880 --> 02:07:59,960
AT LEAST I SERVED A PURPOSE.

3044
02:07:59,960 --> 02:08:02,760
AND THEY HAVE A RISK REWARD 

3045
02:08:02,760 --> 02:08:03,920
NOTION OF WHY THEY'RE 

3046
02:08:03,920 --> 02:08:04,600
PARTICIPATING.

3047
02:08:04,600 --> 02:08:07,080
FAMILIES ON THE OTHER HAND WERE 

3048
02:08:07,080 --> 02:08:08,080
VERY CONCERNED.

3049
02:08:08,080 --> 02:08:11,680
LIKE I TOLD YOU, INITIALLY I WAS

3050
02:08:11,680 --> 02:08:15,000
TOTALLY AGAINST IT WHEN A MOTHER

3051
02:08:15,000 --> 02:08:17,360
SAID I TRIED TO TALK HIM OUT OF 

3052
02:08:17,360 --> 02:08:19,160
IT AND HE'S SO UNHAPPY AND 

3053
02:08:19,160 --> 02:08:20,960
BECAUSE OF THEY WANT THAT FOR 

3054
02:08:20,960 --> 02:08:22,600
HIM I'M GOING WITH HIS GUT ON 

3055
02:08:22,600 --> 02:08:23,440
THIS ONE.

3056
02:08:23,440 --> 02:08:25,360
I PUSHED PRETTY HARD FOR HIM NOT

3057
02:08:25,360 --> 02:08:27,320
TO DO THIS BECAUSE I'M CONCERNED

3058
02:08:27,320 --> 02:08:30,120
YET IT'S HIS LIFE.

3059
02:08:30,120 --> 02:08:31,560
ONE INTERACTION WITH A 

3060
02:08:31,560 --> 02:08:33,240
RESPONDENT WHEN ASKED IF SHE 

3061
02:08:33,240 --> 02:08:35,480
WOULD STILL DO IT IF FAMILY 

3062
02:08:35,480 --> 02:08:36,720
MEMBERS DIDN'T WANT HER TO SHE 

3063
02:08:36,720 --> 02:08:39,480
SAID YES, IT'S MY DECISION AND 

3064
02:08:39,480 --> 02:08:41,280
IF THEY DIDN'T WANT ME TO, TOO 

3065
02:08:41,280 --> 02:08:42,360
BAD BECAUSE IT'S MY LIFE.

3066
02:08:42,360 --> 02:08:45,200
I SAID WHY IS IT YOUR DECISION?

3067
02:08:45,200 --> 02:08:49,040
BECAUSE IT'S MY BODY AND I'M AN 

3068
02:08:49,040 --> 02:08:49,240
ADULT.

3069
02:08:49,240 --> 02:08:51,440
I HAVE LEGAL CONSENT OVER 

3070
02:08:51,440 --> 02:08:59,440
MYSELF.

3071
02:08:59,440 --> 02:09:01,160
THEY DOES NOT SUFFER THERAPEUTIC

3072
02:09:01,160 --> 02:09:02,360
MISCONCEPTION AND SAID RESEARCH 

3073
02:09:02,360 --> 02:09:07,320
IS DIFFERENT AND FOLLOW THE 

3074
02:09:07,320 --> 02:09:09,320
GUIDELINES AND SOME HAVE BEEN 

3075
02:09:09,320 --> 02:09:11,480
OUT FOR A LONG TIME AND RESEARCH

3076
02:09:11,480 --> 02:09:14,400
IS EXPERIMENTAL AND WE DID 

3077
02:09:14,400 --> 02:09:16,080
DETECT IN ONE RESPONDENT WHAT A 

3078
02:09:16,080 --> 02:09:18,320
CALL INSTITUTIONAL TRANSFERENCE.

3079
02:09:18,320 --> 02:09:23,560
THEY WERE IMPRESSED BY SURGERY 

3080
02:09:23,560 --> 02:09:31,000
AT STANFORD AND SAID I DO KNOW I

3081
02:09:31,000 --> 02:09:32,840
HAVE THE HOPE SOMETHING GOOD 

3082
02:09:32,840 --> 02:09:35,480
WILL COME OUT OF IT AND DIDN'T 

3083
02:09:35,480 --> 02:09:40,560
HAVE CONCERNS ABOUT A POST-TRIAL

3084
02:09:40,560 --> 02:09:40,840
OBLIGATION.

3085
02:09:40,840 --> 02:09:43,600
ONE SUBJECT SAID MY DAD ASKED 

3086
02:09:43,600 --> 02:09:44,960
HOW LONG THE IMPLANT WOULD BE 

3087
02:09:44,960 --> 02:09:47,480
SUPPORTED AND MAINTAINED IF IT 

3088
02:09:47,480 --> 02:09:50,720
WORKED SUPER WELL OR IS NICE WAS

3089
02:09:50,720 --> 02:09:51,320
STANFORD GOING TO CONTINUE 

3090
02:09:51,320 --> 02:09:53,120
PAYING FOR IT OR SUPPORTING IT?

3091
02:09:53,120 --> 02:09:54,320
I DON'T THINK WE ASKED THE COST 

3092
02:09:54,320 --> 02:09:57,800
TO REPLACE THE BATTERY OR 

3093
02:09:57,800 --> 02:09:59,160
INSURANCE WOULD BE STANDING ON 

3094
02:09:59,160 --> 02:10:00,560
THE DEGREE OF BENEFIT.

3095
02:10:00,560 --> 02:10:01,880
I'D LIKE IT IN PERPETUITY.

3096
02:10:01,880 --> 02:10:03,600
IT WOULD BE NICE IF THEY 

3097
02:10:03,600 --> 02:10:07,120
UNDERSTAND WHY THE SCHOOL MAY BE

3098
02:10:07,120 --> 02:10:15,320
FORCED TO STOP AFTER A WHILE.

3099
02:10:15,320 --> 02:10:17,120
POST OPERATIVELY IT'S THE CELL.

3100
02:10:17,120 --> 02:10:18,480
ONE MOTHER SAID I GOT MY 

3101
02:10:18,480 --> 02:10:19,080
DAUGHTER BACK.

3102
02:10:19,080 --> 02:10:22,480
IT'S PROFOUND FOR US.

3103
02:10:22,480 --> 02:10:23,000
IT'S A PROFOUND CHANGE.

3104
02:10:23,000 --> 02:10:24,320
AND HERE COMES THE TEARS.

3105
02:10:24,320 --> 02:10:27,440
IF SOMEBODY TOLD ME IN AUGUST 

3106
02:10:27,440 --> 02:10:28,840
WE'D BE SIGNATURE HERE HAVING 

3107
02:10:28,840 --> 02:10:30,160
THIS CONVERSATION IN JANUARY I 

3108
02:10:30,160 --> 02:10:31,560
NEVER WOULD HAVE BELIEVED IT.

3109
02:10:31,560 --> 02:10:33,640
IT'S BEYOND MY HOPES.

3110
02:10:33,640 --> 02:10:35,080
BEYOND ANTICIPATION.

3111
02:10:35,080 --> 02:10:36,760
SOMEBODY TURNED THE LIGHTS BACK 

3112
02:10:36,760 --> 02:10:37,120
ON.

3113
02:10:37,120 --> 02:10:39,440
AND ONE SUBJECT SAID SO I HAVE 

3114
02:10:39,440 --> 02:10:42,080
REGROWN UP AGAIN.

3115
02:10:42,080 --> 02:10:45,120
BEFORE THE IMPLANT I WAS EARLIER

3116
02:10:45,120 --> 02:10:47,440
TEENS AND AFTER THE IMPLANT BACK

3117
02:10:47,440 --> 02:10:49,400
TO LATE TEENS MORE MY ACTUAL 

3118
02:10:49,400 --> 02:10:49,640
AGE.

3119
02:10:49,640 --> 02:10:53,760
THEY ALSO HAD ISSUES OF 

3120
02:10:53,760 --> 02:10:55,120
ADAPTATION AND DEALING WITH 

3121
02:10:55,120 --> 02:10:56,480
THEIR NEW SELVES.

3122
02:10:56,480 --> 02:10:58,600
ONE SUBJECT TALKED ABOUT LIKING 

3123
02:10:58,600 --> 02:11:01,480
READING BOOKS AND STUFF.

3124
02:11:01,480 --> 02:11:02,000
WHY?

3125
02:11:02,000 --> 02:11:04,000
I WOULD HAVE THOUGHT THAT WAS 

3126
02:11:04,000 --> 02:11:04,760
BORING.

3127
02:11:04,760 --> 02:11:06,600
IT'S AMAZING TO ME I ENJOY DOING

3128
02:11:06,600 --> 02:11:08,680
THESE THINGS LIKE I'M A NERD.

3129
02:11:08,680 --> 02:11:10,760
YOU GUYS MADE ME A NERD.

3130
02:11:10,760 --> 02:11:13,360
AND THE SAME SUBJECT SAID I WENT

3131
02:11:13,360 --> 02:11:14,600
TO LUNCH WITH ANY GIRLFRIEND AND

3132
02:11:14,600 --> 02:11:16,760
I TOLD HER I LIKED READING AND 

3133
02:11:16,760 --> 02:11:18,920
LOOKED AT ME LIKE WHY AND I 

3134
02:11:18,920 --> 02:11:21,800
LOOKED AT HER AND KNEW OUR LIVES

3135
02:11:21,800 --> 02:11:23,440
WERE GOING DIFFERENT WAYS.

3136
02:11:23,440 --> 02:11:23,840
I NEED A DIFFERENT 

3137
02:11:24,720 --> 02:11:27,480
 GIRLFRIEND NOW.

3138
02:11:27,480 --> 02:11:31,880
THEY WANTED TO HAVE NEW LIVES.

3139
02:11:31,880 --> 02:11:33,480
HOPING THERE WAS SUPPORT GROUPS 

3140
02:11:33,480 --> 02:11:35,240
FOR PEOPLE LIKE THEM WHO HAVE 

3141
02:11:35,240 --> 02:11:36,880
THIS KIND OF DISABILITY AND THEY

3142
02:11:36,880 --> 02:11:39,160
WERE ALSO CONCERNED ABOUT 

3143
02:11:39,160 --> 02:11:41,560
POST-TRIAL ACCESS.

3144
02:11:41,560 --> 02:11:43,440
ONE SUBJECT I THINK SAID WHAT 

3145
02:11:43,440 --> 02:11:44,920
YOUR CONCERNS ABOUT THE FUTURE 

3146
02:11:44,920 --> 02:11:46,720
AND THIS PERSON -- THE ONLY 

3147
02:11:46,720 --> 02:11:48,400
THING THAT COMES TO MIND IS 

3148
02:11:48,400 --> 02:11:50,000
REPLACING THE BATTERY.

3149
02:11:50,000 --> 02:11:51,040
NO OTHER THAN THAT.

3150
02:11:51,040 --> 02:11:52,560
OTHERWISE THEY DON'T UNDERSTAND 

3151
02:11:52,560 --> 02:11:54,520
WHY THE GOVERNMENT IS NOT GIVING

3152
02:11:54,520 --> 02:11:56,680
ME DISABILITY INSURANCE OR 

3153
02:11:56,680 --> 02:11:56,960
SOMETHING.

3154
02:11:56,960 --> 02:11:58,760
LIKE COVER MY MEDICAL 

3155
02:11:58,760 --> 02:12:00,160
EXPERIENCES OR COVER THE 

3156
02:12:00,160 --> 02:12:00,480
DISABILITY.

3157
02:12:00,480 --> 02:12:01,040
PICK ONE.

3158
02:12:01,040 --> 02:12:02,840
I'D RATHER HAVE THE JOB THAN 

3159
02:12:02,840 --> 02:12:05,280
COLLECT INSURANCE AND THE SOCIAL

3160
02:12:05,280 --> 02:12:06,560
ASPECT IS ALSO NEEDED SITTING 

3161
02:12:06,560 --> 02:12:07,720
HOME ALONE ALL DAY IS BORING.

3162
02:12:07,720 --> 02:12:09,000
THERE'S SO MANY REASONS TO GO 

3163
02:12:09,000 --> 02:12:11,440
OUT AND GET A JOB AND DO 

3164
02:12:11,440 --> 02:12:12,840
SOMETHING AND THEN WENT ON TO 

3165
02:12:12,840 --> 02:12:13,960
CALCULATE THE COST OF THE 

3166
02:12:13,960 --> 02:12:15,920
BATTERY AND HOW MUCH HE COULD 

3167
02:12:15,920 --> 02:12:18,920
MAKE AND THE TAXES HE'D PAY IN 

3168
02:12:18,920 --> 02:12:22,600
THE REST OF THE TRANSCRIPT AND 

3169
02:12:22,600 --> 02:12:24,360
THEY HAD TO RECONFIGURE THEIR 

3170
02:12:24,360 --> 02:12:29,280
LIVES AND HOPING FOR A RE-ENTRY 

3171
02:12:29,280 --> 02:12:29,520
PROGRAM.

3172
02:12:29,520 --> 02:12:32,800
YOU'RE BACK TO YOUR OLD SELF 

3173
02:12:32,800 --> 02:12:34,480
LET'S DISCOVER WHO YOU ARE AND 

3174
02:12:34,480 --> 02:12:37,120
WHAT THINGS YOU'RE GOOD AT AND 

3175
02:12:37,120 --> 02:12:39,480
HOW DO YOU GO ABOUT THESE AND A 

3176
02:12:39,480 --> 02:12:42,800
STRUCTURED PROGRAM WOULD BE AN 

3177
02:12:42,800 --> 02:12:43,960
AUTOMATIC THING IF YOU GO 

3178
02:12:43,960 --> 02:12:46,000
PROCEDURE AND HOPE AND 

3179
02:12:46,000 --> 02:12:48,520
IMPROVEMENT THIS OFFERS I'D LIKE

3180
02:12:48,520 --> 02:12:50,880
A PROGRAM TO HELP PEOPLE 

3181
02:12:50,880 --> 02:12:52,200
UNDERSTAND WHAT THEIR LOVED ONE 

3182
02:12:52,200 --> 02:12:54,280
IS GOING THROUGH AND DO YOU HAVE

3183
02:12:54,280 --> 02:12:54,600
TIPS?

3184
02:12:54,600 --> 02:12:56,360
IT'S THE SCIENCE AND SOCIETY 

3185
02:12:56,360 --> 02:12:58,400
OBLIGATION OF THE BRAIN 

3186
02:12:58,400 --> 02:12:58,680
INITIATIVE.

3187
02:12:58,680 --> 02:12:59,440
IT'S NOT ENOUGH TO DEVELOP 

3188
02:12:59,440 --> 02:13:00,640
TECHNOLOGY WE HAVE TO DEVELOP 

3189
02:13:00,640 --> 02:13:02,720
THE INFRASTRUCTURE THAT ALLOWS 

3190
02:13:02,720 --> 02:13:05,000
PEOPLE TO THRIVE ONCE THEY HAVE 

3191
02:13:05,000 --> 02:13:06,080
BENEFITTED FROM THESE ADVANCES 

3192
02:13:06,080 --> 02:13:06,880
IN NEUROTECHNOLOGY.

3193
02:13:06,880 --> 02:13:09,400
WHERE DO WE GO FROM HERE?

3194
02:13:09,400 --> 02:13:10,960
I THINK THE BRAIN INITIATIVE HAS

3195
02:13:10,960 --> 02:13:13,120
BEEN REMARKABLE AND PREDICATED 

3196
02:13:13,120 --> 02:13:16,320
ON DEVELOPING NOVEL 

3197
02:13:16,320 --> 02:13:16,680
TECHNOLOGIES.

3198
02:13:16,680 --> 02:13:21,200
IN OUR CASE IT WAS COGNITIVE 

3199
02:13:21,200 --> 02:13:23,080
RESTORATION AND THIS HAVE THE 

3200
02:13:23,080 --> 02:13:26,800
SCIENCE CHALLENGE AND VE WE HAV 

3201
02:13:26,800 --> 02:13:29,720
TO DEVELOP A WAY TO SOCIALLY 

3202
02:13:29,720 --> 02:13:31,160
INTEGRATE THE PEOPLE AND NEED 

3203
02:13:31,160 --> 02:13:33,920
NEW FRIENDS AND NEW LIVES AND 

3204
02:13:33,920 --> 02:13:37,120
NEED A PATHWAY FOR RE-ENTRY.

3205
02:13:37,120 --> 02:13:39,840
THE PATHWAYS MOVE BEYOND THE 

3206
02:13:39,840 --> 02:13:41,200
THALAMUS AND THEY MOVE TO 

3207
02:13:41,200 --> 02:13:43,120
SOCIETY AND THE WORK WE'RE DOING

3208
02:13:43,120 --> 02:13:45,080
AT YALE LAW SCHOOL MOVING FROM 

3209
02:13:45,080 --> 02:13:50,440
THE RIGHT TO MAKE THE CHANGES TO

3210
02:13:50,440 --> 02:13:52,200
FOSTERING CAPABILITIES AS TALKED

3211
02:13:52,200 --> 02:13:57,040
ABOUT AND WE PROPOSED AND THIS 

3212
02:13:57,040 --> 02:13:58,760
IN THE GRANT AN AMERICANS WITH 

3213
02:13:58,760 --> 02:14:00,120
ABILITIES ACT NOT DISABILITIES.

3214
02:14:00,120 --> 02:14:02,200
BECAUSE WE'RE GIVING PEOPLE 

3215
02:14:02,200 --> 02:14:03,480
ABILITIES WITH THE 

3216
02:14:03,480 --> 02:14:04,280
NEUROTECHNOLOGIES BECAUSE THE 

3217
02:14:04,280 --> 02:14:05,800
A.D.A. ACCOMMODATES THE 

3218
02:14:05,800 --> 02:14:06,880
ENVIRONMENT TO THE DISABILITY.

3219
02:14:06,880 --> 02:14:09,000
A PROPOSED AMERICANS WITH 

3220
02:14:09,000 --> 02:14:10,920
ABILITIES ACT EMPOWERS 

3221
02:14:10,920 --> 02:14:12,920
INDIVIDUALS WITH 

3222
02:14:12,920 --> 02:14:14,840
NEUROPROSTHETICS AND ADOPTS THE 

3223
02:14:14,840 --> 02:14:15,800
CAPABILITIES APPROACH TO ALLOW 

3224
02:14:15,800 --> 02:14:17,400
PEOPLE TO FLOURISH WITH THEIR 

3225
02:14:17,400 --> 02:14:19,160
NEW LIVES AND NEW POSSIBILITIES.

3226
02:14:19,160 --> 02:14:20,320
I'LL STOP THERE AND I'LL TURN IT

3227
02:14:20,320 --> 02:14:23,640
OVER TO GABE.

3228
02:14:23,640 --> 02:14:32,000
THANK YOU.

3229
02:14:32,000 --> 02:14:35,480
>> THANK YOU, DR. FINS FOR
THAT 

3230
02:14:35,480 --> 02:14:35,920
PRESENTATION.

3231
02:14:35,920 --> 02:14:39,480
WHAT I'LL BE DISCUSSING IS ONE 

3232
02:14:39,480 --> 02:14:41,040
IMPORTANT COMPONENT OF WHAT 

3233
02:14:41,040 --> 02:14:43,160
DR. FINS BROUGHT UP.

3234
02:14:43,160 --> 02:14:44,680
THE DEVICES HAVE WHEN THEY WORK,

3235
02:14:44,680 --> 02:14:48,280
THEY HAVE A PRETTY HUGE IMPACT 

3236
02:14:48,280 --> 02:14:49,640
ON THESE PATIENTS' LIVES AND 

3237
02:14:49,640 --> 02:14:52,720
IT'S NOT ONLY PATIENTS WITH 

3238
02:14:52,720 --> 02:14:55,160
TRAUMATIC BRAIN INJURY BUT WE'VE

3239
02:14:55,160 --> 02:14:59,440
BEEN WORKING AND INTERVIEWING 

3240
02:14:59,440 --> 02:15:01,120
PATIENTS WITH PARKINSON'S 

3241
02:15:01,120 --> 02:15:10,600
DISEASE, TREMOR, OCD AND 

3242
02:15:10,600 --> 02:15:13,160
TOURETTE'S SYNDROME AND THERE'S 

3243
02:15:13,160 --> 02:15:16,240
A GREAT DEAL OF A NUMBER OF 

3244
02:15:16,240 --> 02:15:17,920
PATIENTS THAT LUCKILY MAY BEGIN 

3245
02:15:17,920 --> 02:15:23,480
TO HAVE ACCESS TO THESE 

3246
02:15:23,480 --> 02:15:25,720
TECHNOLOGIES BUT THERE ARE A LOT

3247
02:15:25,720 --> 02:15:26,400
OF QUESTIONS ABOUT WHAT HAPPENS 

3248
02:15:26,400 --> 02:15:28,080
ONCE THEY'RE DONE WITH THE 

3249
02:15:28,080 --> 02:15:28,480
TRIAL.

3250
02:15:28,480 --> 02:15:34,480
HOW DO THEY GET ACCESS TO THESE 

3251
02:15:34,480 --> 02:15:38,000
TECHNOLOGIES AND THESE ARE 

3252
02:15:38,000 --> 02:15:38,600
RESISTANT CONDITIONS AND NOTHING

3253
02:15:38,600 --> 02:15:41,160
ELSE TO GO BACK TO IF THEY DON'T

3254
02:15:41,160 --> 02:15:45,200
HAVE ACCESS TO THESE DEVICES.

3255
02:15:45,200 --> 02:15:47,360
I'LL TALK ABOUT ADAPTIVE DEEP 

3256
02:15:47,360 --> 02:15:48,040
BRAIN STIMULATION.

3257
02:15:48,040 --> 02:15:51,080
MANY ARE PROBABLY FAMILIAR BUT 

3258
02:15:51,080 --> 02:15:53,080
IN CONVENTIONAL DEEP BRAIN 

3259
02:15:53,080 --> 02:15:55,160
STIMULATION YOU BASICALLY 

3260
02:15:55,160 --> 02:15:57,240
PROVIDE CONTINUOUS STIMULATION 

3261
02:15:57,240 --> 02:16:00,680
AND ADAPTIVE ALLOWS TO YOU 

3262
02:16:00,680 --> 02:16:02,960
IDENTIFY SOME KIND OF BIOMARKER,

3263
02:16:02,960 --> 02:16:03,640
ACTIVITY IN THE BRAIN ASSOCIATED

3264
02:16:03,640 --> 02:16:07,560
WITH THE ONSET OF SYMPTOMS AND 

3265
02:16:07,560 --> 02:16:11,000
THEN HOPEFULLY BY READING AND 

3266
02:16:11,000 --> 02:16:12,000
IDENTIFYING THE BIOMEDICAL YOU 

3267
02:16:12,000 --> 02:16:17,280
CAN EITHER INCREASE STIMULATION 

3268
02:16:17,280 --> 02:16:25,880
WHEN THE TO TURN IT ON AND WHAT 

3269
02:16:25,880 --> 02:16:27,480
DIFFERENTIATES THIS FROM 

3270
02:16:27,480 --> 02:16:30,120
CONVENTIONAL IS YOU'RE READING 

3271
02:16:30,120 --> 02:16:33,120
NEURAL ACTIVITY AND THE SYSTEM 

3272
02:16:33,120 --> 02:16:35,320
IS ABLE TO RESPOND IN WHEN IT 

3273
02:16:35,320 --> 02:16:37,160
DETECTS THAT KIND OF ACTIVITY 

3274
02:16:37,160 --> 02:16:40,400
ASSOCIATED WITH THE SYMPTOMS.

3275
02:16:40,400 --> 02:16:45,000
FOR THESE CONDITIONS I'M TALKING

3276
02:16:45,000 --> 02:16:54,680
ABOUT PARKINSON'S, DYSTONIA AND 

3277
02:16:54,680 --> 02:16:58,880
TREMOR AND OCD AND TOURETTE 

3278
02:16:58,880 --> 02:17:00,840
SYNDROME THE PATIENTS COULD NOT 

3279
02:17:00,840 --> 02:17:11,360
ACCESS IT COMMERCIALLY IN WAY.

3280
02:17:14,200 --> 02:17:15,480
IS THERE LEGAL OBLIGATION TO 

3281
02:17:15,480 --> 02:17:17,080
CONTINUE THE DEVICES IF THE 

3282
02:17:17,080 --> 02:17:18,000
PATIENTS WOULD BENEFIT GREATLY 

3283
02:17:18,000 --> 02:17:20,280
FROM THE DEVICES.

3284
02:17:20,280 --> 02:17:22,360
THE TRUTH IS IN THE U.S. THERE'S

3285
02:17:22,360 --> 02:17:25,240
NO LEGAL OBLIGATION CURRENTLY TO

3286
02:17:25,240 --> 02:17:29,920
PROVIDE ANY KIND OF CONTINUED 

3287
02:17:29,920 --> 02:17:30,160
ACCESS.

3288
02:17:30,160 --> 02:17:32,800
THERE ARE CERTAIN REPORTS AND 

3289
02:17:32,800 --> 02:17:37,160
GROUPS THAT HAVE PROVIDED 

3290
02:17:37,160 --> 02:17:39,400
SUGGESTIONS THAT RESEARCHERS 

3291
02:17:39,400 --> 02:17:40,640
WHEN THEY'RE PUTTING TOGETHER 

3292
02:17:40,640 --> 02:17:43,160
DESIGNING STUDIES THEY SHOULD 

3293
02:17:43,160 --> 02:17:44,800
THINK ABOUT POTENTIALLY 

3294
02:17:44,800 --> 02:17:46,040
POST-TRIAL ACCESS TO THE DEVICES

3295
02:17:46,040 --> 02:17:49,160
FOR PEOPLE WHO BENEFIT FROM THE 

3296
02:17:49,160 --> 02:17:51,080
DEVICES OR DRUGS, ETCETERA, BUT 

3297
02:17:51,080 --> 02:17:51,920
NONE OF THESE ARE LEGALLY 

3298
02:17:51,920 --> 02:17:56,920
BINDING IN THE U.S.

3299
02:17:56,920 --> 02:17:59,320
THE QUESTION BECOMES SOMETHING 

3300
02:17:59,320 --> 02:18:00,880
ABOUT CHANGING THE REGULATIONS 

3301
02:18:00,880 --> 02:18:05,080
OR IS THERE AN ETHICAL 

3302
02:18:05,080 --> 02:18:07,160
OBLIGATION THAT THAT SHOULD 

3303
02:18:07,160 --> 02:18:07,800
LEAVE THE DIFFERENT PEOPLE 

3304
02:18:07,800 --> 02:18:09,960
INVOLVES IN PROVIDING AND 

3305
02:18:09,960 --> 02:18:11,400
POTENTIALLY BENEFIT FROM THE 

3306
02:18:11,400 --> 02:18:13,640
DEVICES TO MAKE SURE THAT THE 

3307
02:18:13,640 --> 02:18:15,040
PATIENTS WHO BENEFIT FROM THE 

3308
02:18:15,040 --> 02:18:17,040
DEVICES ARE ACTUALLY ABLE TO 

3309
02:18:17,040 --> 02:18:19,160
CONTINUE HAVING ACCESS TO THEM 

3310
02:18:19,160 --> 02:18:21,360
AT THE END OF THE TRIAL.

3311
02:18:21,360 --> 02:18:25,200
AS DR. FINS MENTIONED THE 

3312
02:18:25,200 --> 02:18:28,000
DEVICES CAN MAKE A HUGE 

3313
02:18:28,000 --> 02:18:29,240
DIFFERENCE IN THE INDIVIDUAL'S 

3314
02:18:29,240 --> 02:18:31,120
LIVES AND THEY'VE BEEN 

3315
02:18:31,120 --> 02:18:33,000
EXPERIENCING THE DISORDERS FOR 

3316
02:18:33,000 --> 02:18:35,480
QUITE A BIT.

3317
02:18:35,480 --> 02:18:37,320
FOR THESE PATIENTS THEY HAVE 

3318
02:18:37,320 --> 02:18:41,160
SEVERE SYMPTOMS TO MEET THE 

3319
02:18:41,160 --> 02:18:42,280
INCLUSION CRITERIA TO 

3320
02:18:42,280 --> 02:18:45,800
PARTICIPATE IN THE TRIALS.

3321
02:18:45,800 --> 02:18:47,880
WE INTERVIEW PATIENTS BEFORE THE

3322
02:18:47,880 --> 02:18:49,160
SURGERY AND SIX MONTHS AFTER 

3323
02:18:49,160 --> 02:18:51,480
THEY HAD SOME EXPERIENCE WITH 

3324
02:18:51,480 --> 02:18:55,840
THE DEVICE.

3325
02:18:55,840 --> 02:18:57,720
THESE ARE ALL TRIALS TESTING THE

3326
02:18:57,720 --> 02:19:00,560
ADAPTIVE COMPONENTS.

3327
02:19:00,560 --> 02:19:03,480
HAVE MADE MORE PROGRESS IN 

3328
02:19:03,480 --> 02:19:05,640
IDENTIFYING THE BIOMARKERS 

3329
02:19:05,640 --> 02:19:07,160
ETCETERA OF THE TRIALS TESTING 

3330
02:19:07,160 --> 02:19:09,120
THE ADAPTIVE COMPONENT.

3331
02:19:09,120 --> 02:19:11,080
I'LL HIGHLIGHT SOME OF THE 

3332
02:19:11,080 --> 02:19:15,480
THINGS THAT WE ASKED THEM AND 

3333
02:19:15,480 --> 02:19:24,600
HEARD FROM THE PATIENTS.

3334
02:19:24,600 --> 02:19:27,480
AND HAVE A BREAK DOWN OF 

3335
02:19:27,480 --> 02:19:31,480
CONDITIONS AND WE DO ANALYSIS TO

3336
02:19:31,480 --> 02:19:32,600
IDENTIFY THE FREQUENT THEMES AND

3337
02:19:32,600 --> 02:19:39,720
WE HAVE AT LEAST TWO PEOPLE THAT

3338
02:19:39,720 --> 02:19:43,240
CORROBORATE THE ABSTRACTIONS WE 

3339
02:19:43,240 --> 02:19:53,520
DO FROM THE DATA.

3340
02:20:06,400 --> 02:20:07,560
I'M HOPING IT WILL PROVIDE 

3341
02:20:07,560 --> 02:20:13,160
RELIEF AND I'M YOU UP FOR 

3342
02:20:13,160 --> 02:20:23,360
KEEPING IT.

3343
02:20:26,960 --> 02:20:31,160
ONE OF THEM SAID AT THE END OF 

3344
02:20:31,160 --> 02:20:35,360
THE STUDY IF THEY WANT IT BACK 

3345
02:20:35,360 --> 02:20:38,800
THEY'LL HAVE TO FIGHT ME IT.

3346
02:20:38,800 --> 02:20:40,440
THEY WANTED TO MAINTAIN THE 

3347
02:20:40,440 --> 02:20:40,680
BENEFIT.

3348
02:20:40,680 --> 02:20:43,200
THEY HAVE NOTHING ELSE TO GO 

3349
02:20:43,200 --> 02:20:48,400
BACK TO.

3350
02:20:48,400 --> 02:20:49,440
THE OTHER PEOPLE DID NOT SAY 

3351
02:20:49,440 --> 02:20:52,960
THEY DIDN'T WANT TO HAVE ACCESS.

3352
02:20:52,960 --> 02:20:58,360
MOST HAD UNCLEAR ANSWERS THAT WE

3353
02:20:58,360 --> 02:21:00,200
DECIDED NOT TO COUNT AS SUPPORT 

3354
02:21:00,200 --> 02:21:06,160
FOR CONTINUED ACCESS AT THAT 

3355
02:21:06,160 --> 02:21:07,160
POINT.

3356
02:21:07,160 --> 02:21:08,360
AND THEY'RE IN FAVOR OF 

3357
02:21:08,360 --> 02:21:09,120
CONTINUING ACCESS.

3358
02:21:09,120 --> 02:21:11,000
WE ASKED THEM HOW DO YOU THINK 

3359
02:21:11,000 --> 02:21:12,000
KEEPING THE DEVICE FUNCTIONING 

3360
02:21:12,000 --> 02:21:15,200
AT THE END OF THE STUDY SHOULD 

3361
02:21:15,200 --> 02:21:16,520
BE PAID FOR?

3362
02:21:16,520 --> 02:21:21,040
AND PRE-SURGERY MOST OF THEM 

3363
02:21:21,040 --> 02:21:22,800
MENTIONED INSURANCE.

3364
02:21:22,800 --> 02:21:23,480
PAY FOR INSURANCE THEY SHOULD 

3365
02:21:23,480 --> 02:21:26,520
CONTINUE THIS IS WORKING.

3366
02:21:26,520 --> 02:21:31,520
IT'S MEDICALLY NECESSARY FOR ME 

3367
02:21:31,520 --> 02:21:35,520
AND SHOULD CONTINUE COVERING 

3368
02:21:35,520 --> 02:21:38,080
THIS AND THERE'S A DECREASE IN 

3369
02:21:38,080 --> 02:21:39,480
THE NUMBER OF PEOPLE THAT 

3370
02:21:39,480 --> 02:21:40,960
MENTION INSURANCE AND IT'S 

3371
02:21:40,960 --> 02:21:43,520
BECAUSE THERE'S AN INCREASE IN 

3372
02:21:43,520 --> 02:21:45,400
THE NUMBER OF PEOPLE MENTIONED 

3373
02:21:45,400 --> 02:21:46,560
IN DEVICE MANUFACTURERS.

3374
02:21:46,560 --> 02:21:49,840
IT SEEMS AS THEY SEE HOW THE 

3375
02:21:49,840 --> 02:21:51,840
RESEARCH TAKES PLACE AND WHAT 

3376
02:21:51,840 --> 02:21:55,120
ARE THE DIFFERENT ROLES OF EACH 

3377
02:21:55,120 --> 02:21:56,680
OF THESE GROUPS AND PLAYERS 

3378
02:21:56,680 --> 02:21:58,880
INVOLVED IN MAKING THE RESEARCH 

3379
02:21:58,880 --> 02:22:01,600
POSSIBLE MANY OF THEM START 

3380
02:22:01,600 --> 02:22:04,520
MENTIONING THAT THOSE WHO ARE 

3381
02:22:04,520 --> 02:22:05,800
DEVELOPING THESE DEVICES AND 

3382
02:22:05,800 --> 02:22:08,160
MANUFACTURING THE DEVICES SHOULD

3383
02:22:08,160 --> 02:22:10,960
HAVE SOME OBLIGATION TO HELP 

3384
02:22:10,960 --> 02:22:12,160
PROVIDE CONTINUED ACCESS.

3385
02:22:12,160 --> 02:22:14,120
THEN A NUMBER OF THEM ALSO 

3386
02:22:14,120 --> 02:22:16,360
MENTIONED THAT PARTICIPANTS 

3387
02:22:16,360 --> 02:22:18,200
SHOULD BE ABLE TO COVER IF THEY 

3388
02:22:18,200 --> 02:22:20,240
HAVE THE MEANS THEY SHOULD COVER

3389
02:22:20,240 --> 02:22:22,120
PART OF THE COST OF MAINTAINING 

3390
02:22:22,120 --> 02:22:25,640
THE DEVICE, THE RESEARCH TEAMS 

3391
02:22:25,640 --> 02:22:27,240
THEY MENTION AS WELL THE 

3392
02:22:27,240 --> 02:22:31,160
HOSPITAL INSTITUTIONS WHERE THE 

3393
02:22:31,160 --> 02:22:31,680
RESEARCH TAKES PLACE AND 

3394
02:22:31,680 --> 02:22:37,120
GOVERNMENT.

3395
02:22:37,120 --> 02:22:39,280
WE ASKED WHAT GROUPS SHOULD BE 

3396
02:22:39,280 --> 02:22:41,520
FINANCIALLY RESPONSIBLE AND FOR 

3397
02:22:41,520 --> 02:22:45,400
DEVICE MANUFACTURE ERS WHICH WA 

3398
02:22:45,400 --> 02:22:46,680
THE GROUP THAT REMAINED SAID 

3399
02:22:46,680 --> 02:22:49,160
SINCE THE COMPANY OR TEAM OR THE

3400
02:22:49,160 --> 02:22:50,920
WHATEVER IS GETTING I HOPE A LOT

3401
02:22:50,920 --> 02:22:52,440
OF INFORMATION I THINK THEY HAVE

3402
02:22:52,440 --> 02:22:53,480
A RESPONSIBILITY TO CONTINUE TO 

3403
02:22:53,480 --> 02:22:56,360
TAKE CARE OF THE PEOPLE THAT 

3404
02:22:56,360 --> 02:22:58,040
HAVE THE DEVICES.

3405
02:22:58,040 --> 02:23:01,160
I WOULD NOT EXPECT OR WANT TO BE

3406
02:23:01,160 --> 02:23:03,480
CUT LOOSE AT A CERTAIN 

3407
02:23:03,480 --> 02:23:05,960
DEFINITIVE DATE.

3408
02:23:05,960 --> 02:23:08,080
WE SEE THE PRINCIPLES OF 

3409
02:23:08,080 --> 02:23:11,480
RECIPROCITY THAT ARE BEING 

3410
02:23:11,480 --> 02:23:13,160
EXPRESSED HERE.

3411
02:23:13,160 --> 02:23:14,360
ANOTHER ONE WE TALKED ABOUT 

3412
02:23:14,360 --> 02:23:15,480
INSURANCE SAID I THINK INSURANCE

3413
02:23:15,480 --> 02:23:17,400
SHOULD DEFINITELY PAY FOR THAT.

3414
02:23:17,400 --> 02:23:19,160
IT'S NOT LIKE THEY HAVE TO PAY 

3415
02:23:19,160 --> 02:23:20,320
FOR THE SURGERY BECAUSE IT'S 

3416
02:23:20,320 --> 02:23:21,840
PAID FOR BY THE STUDY.

3417
02:23:21,840 --> 02:23:23,480
I THINK THE INSURANCE SHOULD 

3418
02:23:23,480 --> 02:23:25,120
TAKE RESPONSIBILITY AND IF THEY 

3419
02:23:25,120 --> 02:23:27,040
WOULD JUST PAY OUT AND DO WHAT 

3420
02:23:27,040 --> 02:23:29,400
THEY'RE SUPPOSED TO DO, THEN 

3421
02:23:29,400 --> 02:23:31,040
YEAH, THEY NEED TO PAY FOR IT.

3422
02:23:31,040 --> 02:23:34,040
YOU SEE A CONTRACT LIKE 

3423
02:23:34,040 --> 02:23:35,200
OBLIGATION THEY'RE SEEING WITH 

3424
02:23:35,200 --> 02:23:37,680
THEIR INSURANCE PROVIDER AND 

3425
02:23:37,680 --> 02:23:39,440
THEN THEY'RE SEEING IT'S 

3426
02:23:39,440 --> 02:23:40,280
SOMETHING THAT'S MEDICALLY 

3427
02:23:40,280 --> 02:23:41,480
NECESSARY THE PATIENT SHOULD 

3428
02:23:41,480 --> 02:23:43,320
HAVE ACCESS TO IT EVEN IF IT'S 

3429
02:23:43,320 --> 02:23:53,200
EXPERIMENTAL.

3430
02:23:53,200 --> 02:23:54,440
SOME MENTIONED PARTICIPANTS, IF 

3431
02:23:54,440 --> 02:23:57,840
YOU CAN AFFORD IT YOU SHOULD BE 

3432
02:23:57,840 --> 02:24:00,840
ABLE TO HAVE IT BUT IF YOU 

3433
02:24:00,840 --> 02:24:02,200
CAN'T, THE SAME WAY YOU GOT IN 

3434
02:24:02,200 --> 02:24:03,480
THE STUDY IS THE SAME IT SHOULD 

3435
02:24:03,480 --> 02:24:07,000
BE AND IT WOULD BE CRUDE TO GIVE

3436
02:24:07,000 --> 02:24:08,160
THIS TO SOMEONE AND SNATCH IT 

3437
02:24:08,160 --> 02:24:09,440
AWAY BECAUSE OF A FEW PENNIES 

3438
02:24:09,440 --> 02:24:11,480
THOUGH I KNOW IT'S MORE THAN A 

3439
02:24:11,480 --> 02:24:13,160
FEW PENNIES.

3440
02:24:13,160 --> 02:24:16,880
AND FINALLY SOME MENTION THE 

3441
02:24:16,880 --> 02:24:18,280
RESEARCH TEAM THE STUDY SHOULD 

3442
02:24:18,280 --> 02:24:19,480
PAY FOR IT.

3443
02:24:19,480 --> 02:24:20,800
I GUESS THE PARTICIPANTS IN THE 

3444
02:24:20,800 --> 02:24:22,280
STUDY TOOK THE RISK AND HAD 

3445
02:24:22,280 --> 02:24:23,440
EVERYTHING DONE AND I THINK 

3446
02:24:23,440 --> 02:24:24,760
WHATEVER IS NEEDED TO KEEP IT 

3447
02:24:24,760 --> 02:24:27,720
UP, IF IT CAN'T BE PAID BY THE 

3448
02:24:27,720 --> 02:24:28,880
INDIVIDUAL PERSON IT SHOULD BE 

3449
02:24:28,880 --> 02:24:31,200
TAKEN CARE OF BY THE STUDY EVEN 

3450
02:24:31,200 --> 02:24:41,520
WHEN THE STUDY ENDS.

3451
02:24:41,840 --> 02:24:42,760
AND THANK YOU TO OUR 

3452
02:24:42,760 --> 02:24:43,480
COLLABORATORS AND THE NIH FOR 

3453
02:24:43,480 --> 02:24:44,200
THE FUNDING.

3454
02:24:44,200 --> 02:24:54,720
I THINK WE'LL MOVE TO THE
Q&A.

3455
02:24:57,240 --> 02:24:59,480
>> THERE'S TWO QUESTIONS.

3456
02:24:59,480 --> 02:25:01,160
FEEL FREE TO KEEP THE 

3457
02:25:01,160 --> 02:25:02,960
QUESTIONING COMING.

3458
02:25:02,960 --> 02:25:05,160
SO FIRST QUESTION SAYS, THE 

3459
02:25:05,160 --> 02:25:07,200
GUIDELINES PRESENTED IN SOME OF 

3460
02:25:07,200 --> 02:25:08,320
THE TALKS ARE QUITE 

3461
02:25:08,320 --> 02:25:11,000
COMPLEMENTARY GIVEN THE 

3462
02:25:11,000 --> 02:25:13,160
MULTI-DISCIPLINARY NATURE OF THE

3463
02:25:13,160 --> 02:25:15,080
WORK, ARE THERE SCENARIOS WHERE 

3464
02:25:15,080 --> 02:25:16,840
THERE'S COMPETING ROLES, AIMS, 

3465
02:25:16,840 --> 02:25:19,160
PRIORITIES BETWEEN THE 

3466
02:25:19,160 --> 02:25:29,360
DISCIPLINES?

3467
02:25:32,160 --> 02:25:35,480
>> THERE'S OVERLAPPING 

3468
02:25:35,480 --> 02:25:35,760
PRINCIPLES.

3469
02:25:35,760 --> 02:25:37,840
I THINK THAT THERE'S A DYNAMIC 

3470
02:25:37,840 --> 02:25:39,280
TENSION THAT CAN COME IN BETWEEN

3471
02:25:39,280 --> 02:25:42,200
SOME OF THESE CONSTRUCTS ADDS 

3472
02:25:42,200 --> 02:25:43,200
THEY APPLY IN THE MILITARY 

3473
02:25:43,200 --> 02:25:47,160
CONTEXT VERSUS A MEDICAL 

3474
02:25:47,160 --> 02:25:48,720
CIVILIAN CONTEXT, FOR INSTANCE.

3475
02:25:48,720 --> 02:25:51,480
SO THE CONCEPT OF AGENCY AND 

3476
02:25:51,480 --> 02:25:56,560
IDENTITY HAVE A SLIGHTLY 

3477
02:25:56,560 --> 02:25:59,320
DIFFERENT POTENTIAL IMPORTANT 

3478
02:25:59,320 --> 02:26:00,960
BUT ALSO DIFFERENT -- IMPORT BUT

3479
02:26:00,960 --> 02:26:03,360
ALSO DIFFERENT STANDARDS AND 

3480
02:26:03,360 --> 02:26:04,720
OBLIGATIONS APPLY IN DIFFERENT 

3481
02:26:04,720 --> 02:26:08,200
CONTEXT.

3482
02:26:08,200 --> 02:26:09,760
I THINK THE IMPORTANT THING DO 

3483
02:26:09,760 --> 02:26:11,400
IS TO DEFINE THE CONTEXT OF USE 

3484
02:26:11,400 --> 02:26:17,320
WHEN WE'RE ENGAGING IN THIS SORT

3485
02:26:17,320 --> 02:26:19,480
OF DISCOURSE BUT BY AND LARGE I 

3486
02:26:19,480 --> 02:26:22,960
THINK THE GROSSER CONCEPTS ARE 

3487
02:26:22,960 --> 02:26:25,480
GOING APPLY ACROSS THE BOARD AND

3488
02:26:25,480 --> 02:26:29,560
IT'S UNLIKELY THAT ONE OF THESE 

3489
02:26:29,560 --> 02:26:30,280
DOMAINS THAT A TECHNOLOGY 

3490
02:26:30,280 --> 02:26:31,360
DEVELOPED IN THAT DOMAIN WILL 

3491
02:26:31,360 --> 02:26:33,120
STAY IN THAT DOMAIN.

3492
02:26:33,120 --> 02:26:34,400
THINGS ARE FREQUENTLY DEVELOPED 

3493
02:26:34,400 --> 02:26:36,480
INTO THE MILITARY OR IN THE 

3494
02:26:36,480 --> 02:26:39,120
MILITARY CONTEXT AND MOVED TO A 

3495
02:26:39,120 --> 02:26:40,800
MEDICAL OR MEDICAL AND TO THE 

3496
02:26:40,800 --> 02:26:41,320
REST OF SOCIETY.

3497
02:26:41,320 --> 02:26:43,840
THESE ARE NOT LIKELY TO STAY 

3498
02:26:43,840 --> 02:26:44,560
THERE.

3499
02:26:44,560 --> 02:26:46,720
THEY MAY BE IMPLEMENTED IN 

3500
02:26:46,720 --> 02:26:48,280
WELLNESS AND ENTERTAINMENT AND 

3501
02:26:48,280 --> 02:26:49,200
OTHER THINGS AS WELL.

3502
02:26:49,200 --> 02:26:51,480
I THINK IT'S IMPORTANT TO 

3503
02:26:51,480 --> 02:26:54,280
CONSIDER MULTIPLE DOMAINS 

3504
02:26:54,280 --> 02:26:56,160
POTENTIALLY AT LEAST IN THE 

3505
02:26:56,160 --> 02:26:58,120
CONTEXT OF WHAT OTHER DOMAINS 

3506
02:26:58,120 --> 02:27:01,160
MIGHT THE TECHNOLOGY BE USED IN 

3507
02:27:01,160 --> 02:27:01,800
WHEN THEY'RE IN THE DEVELOPMENT 

3508
02:27:01,800 --> 02:27:10,720
STAGE.

3509
02:27:10,720 --> 02:27:11,520
>> IS THERE ANYTHING YOU
WANT IT

3510
02:27:11,520 --> 02:27:21,720
ADD TO THAT?

3511
02:27:23,040 --> 02:27:23,920
>> IN THE OLD DAYS WE
WOULD HAVE

3512
02:27:23,920 --> 02:27:26,720
SAID THE DOMAINS THAT ARE 

3513
02:27:26,720 --> 02:27:29,200
DISTINCT ARE CLINIC AND RESEARCH

3514
02:27:29,200 --> 02:27:32,560
DOMAINS BUT HERE I'M INFORMED BY

3515
02:27:32,560 --> 02:27:36,760
THE ANCILLARY CARE OBLIGATIONS.

3516
02:27:36,760 --> 02:27:42,680
WHEN WE'RE DOING RESEARCH ON THE

3517
02:27:42,680 --> 02:27:44,520
FOREFRONT THE PATIENTS BECOME 

3518
02:27:44,520 --> 02:27:44,920
AGENT.

3519
02:27:44,920 --> 02:27:47,000
AND BEFORE THE WORK GETS 

3520
02:27:47,000 --> 02:27:48,320
DISSEMINATED MORE BROADLY, 

3521
02:27:48,320 --> 02:27:49,960
THERE'S A LOT OF ROLES THAT GET 

3522
02:27:49,960 --> 02:27:50,280
CONFLATED.

3523
02:27:50,280 --> 02:27:52,200
THAT CREATES CONFLICTS OF 

3524
02:27:52,200 --> 02:27:53,480
INTEREST AND CREATES PROBLEMS 

3525
02:27:53,480 --> 02:27:55,760
BUT ALSO CREATES A RECIPROCAL 

3526
02:27:55,760 --> 02:27:59,480
SET OF OBLIGATIONS AS WELL.

3527
02:27:59,480 --> 02:28:08,080
THAT MAY BE ANOTHER REASON.

3528
02:28:08,080 --> 02:28:10,440
>> I WANTED TO ADD I
COMPLETELY 

3529
02:28:10,440 --> 02:28:12,720
AGREE WITH JOE AND I THINK IT 

3530
02:28:12,720 --> 02:28:18,440
WAS INTERESTING LISTENING TO 

3531
02:28:18,440 --> 02:28:20,040
RACHEL'S DIFFERENCES BECAUSE 

3532
02:28:20,040 --> 02:28:23,480
THERE'S CONTEXTUAL DIFFERENCES 

3533
02:28:23,480 --> 02:28:24,720
BETWEEN MILITARY AND PLED CAL 

3534
02:28:24,720 --> 02:28:26,760
RESEARCH CONTEXT.

3535
02:28:26,760 --> 02:28:28,840
THE IDEA THAT CONSENT DOESN'T 

3536
02:28:28,840 --> 02:28:32,920
HAVE THE SAME POWER AND COMMAND 

3537
02:28:32,920 --> 02:28:33,240
STRUCTURES.

3538
02:28:33,240 --> 02:28:40,760
IT SOUNDS  DISTRESSING TO ME BUT

3539
02:28:40,760 --> 02:28:42,200
I CAN IMAGINE SEARCH BACKGROUND 

3540
02:28:42,200 --> 02:28:43,200
ASSUMPTIONS FROM THE MEDICAL 

3541
02:28:43,200 --> 02:28:47,480
WORLD NOT WORKING IN THAT 

3542
02:28:47,480 --> 02:28:55,120
CONTEXT IN THE SAME WAY.

3543
02:28:55,120 --> 02:29:00,920
EVEN IN THE CONTEXT OF WELLNESS 

3544
02:29:00,920 --> 02:29:11,480
IT'S NOT THE SAME LEVEL AND THE 

3545
02:29:11,920 --> 02:29:13,160
R

3546
02:29:13,160 --> 02:29:13,520
RAMIFICATIONS.

3547
02:29:13,520 --> 02:29:14,960
THERE'S THE DIFFERENCES BETWEEN 

3548
02:29:14,960 --> 02:29:15,280
DISCIPLINES.

3549
02:29:15,280 --> 02:29:19,920
AS I MENTIONED IN MY 

3550
02:29:19,920 --> 02:29:21,600
PRESENTATION, FROM SOME OF THE 

3551
02:29:21,600 --> 02:29:23,920
RESPONSES I SHOWED, FOR 

3552
02:29:23,920 --> 02:29:25,160
ENGINEERS THERE'S DIFFERENT 

3553
02:29:25,160 --> 02:29:32,600
GOALS AND PRIORITIES COMPARED TO

3554
02:29:32,600 --> 02:29:33,400
NEUROSCIENTISTS AND THAT'S WHY 

3555
02:29:33,400 --> 02:29:37,200
WE DO SEE VALUE OF CREATING YET 

3556
02:29:37,200 --> 02:29:39,480
ANOTHER FRAMEWORK OR GUIDELINE 

3557
02:29:39,480 --> 02:29:43,160
SPECIFICALLY TARGETED TO 

3558
02:29:43,160 --> 02:29:44,720
NEUROENGINEERS BECAUSE OUR 

3559
02:29:44,720 --> 02:29:46,760
ASSUMPTION IS THEY'RE 

3560
02:29:46,760 --> 02:29:47,440
COMPLEMENTALLY BUT DIFFERENCES 

3561
02:29:47,440 --> 02:29:50,560
IN PRIORITIES THAT MAY BE 

3562
02:29:50,560 --> 02:29:51,560
RELEVANT AND ADDRESSED TO THE 

3563
02:29:51,560 --> 02:30:01,160
WORK WE'RE DOING.

3564
02:30:01,160 --> 02:30:11,680
ENGINEERS ARE TO SCIENCE WHAT 

3565
02:30:14,480 --> 02:30:16,080
ARE PRAGMATISTS AND SPEAKS TO 

3566
02:30:16,080 --> 02:30:17,080
ENGINEERING AND THERE'S A THREAD

3567
02:30:17,080 --> 02:30:19,160
OF THAT IN WHAT YOU AND YOUR 

3568
02:30:19,160 --> 02:30:21,800
COLLEAGUES PRESENTED.

3569
02:30:21,800 --> 02:30:23,000
IT'S PRAGMATIC.

3570
02:30:23,000 --> 02:30:24,720
IT NOT ONLY HAS TO BE 

3571
02:30:24,720 --> 02:30:26,120
THEORETICALLY CLEAN BUT WORKS IN

3572
02:30:26,120 --> 02:30:31,280
THE MESSY WORLD WHETHER IT'S THE

3573
02:30:31,280 --> 02:30:35,600
MILITARY OR ANOTHER AND WE'RE 

3574
02:30:35,600 --> 02:30:39,480
ALL ENCOUNTERING THAT GRANULAR 

3575
02:30:39,480 --> 02:30:39,680
SPACE.

3576
02:30:39,680 --> 02:30:48,560
>> THANK YOU, JOE.

3577
02:30:48,560 --> 02:30:50,560
HOW IS SCIENCE DEFINED AND WHAT 

3578
02:30:50,560 --> 02:30:51,920
IF IT'S NOT DEFINED AS A 

3579
02:30:51,920 --> 02:31:02,480
STATISTICALLY SIGNIFICANT VALUE?

3580
02:31:03,520 --> 02:31:05,200
AND STICKING TO PRAGMATISM 

3581
02:31:05,200 --> 02:31:07,160
THAT'S SOMETHING WE'LL HAVE TO 

3582
02:31:07,160 --> 02:31:08,520
CONSIDER AS A COMMUNITY 

3583
02:31:08,520 --> 02:31:11,480
SERIOUSLY.

3584
02:31:11,480 --> 02:31:18,400
ONE OPTION IS TO HAVE SOME 

3585
02:31:18,400 --> 02:31:23,400
CLINICAL ASSESSMENT AND 

3586
02:31:23,400 --> 02:31:24,360
RELATIONSHIP WITH THE PATIENT 

3587
02:31:24,360 --> 02:31:27,360
EXAMINE WHETHER THERE'S A 

3588
02:31:27,360 --> 02:31:28,080
BENEFIT AND THAT'S ONE OPTION 

3589
02:31:28,080 --> 02:31:32,200
AND IN ADDITION TO THAT TO THE 

3590
02:31:32,200 --> 02:31:35,480
EXTENT POSSIBLE IT WOULD BE 

3591
02:31:35,480 --> 02:31:36,680
GREAT TO EXAMINE.

3592
02:31:36,680 --> 02:31:42,520
THIS IS PARTICULARLY WHEN WE GET

3593
02:31:42,520 --> 02:31:47,440
INTO OBSESSIVE COMPULSIVE 

3594
02:31:47,440 --> 02:31:51,000
DISORDERS AND OTHERS IT'S AN 

3595
02:31:51,000 --> 02:31:55,040
INEXACT SCIENCE WITH THE SCALES 

3596
02:31:55,040 --> 02:31:57,320
AND THE WAY WE MEASURE THESE 

3597
02:31:57,320 --> 02:31:57,640
DISORDERS.

3598
02:31:57,640 --> 02:31:58,480
IT'S IMPORTANT WE TAKE INTO 

3599
02:31:58,480 --> 02:32:02,560
ACCOUNT WHAT THE PATIENTS ARE 

3600
02:32:02,560 --> 02:32:04,920
SAYING AND WHAT PARTICIPANTS ARE

3601
02:32:04,920 --> 02:32:07,120
SAYING AND TO THE EXTENT TO MAKE

3602
02:32:07,120 --> 02:32:11,480
IT AVAILABLE IF IT'S BENEFICIAL 

3603
02:32:11,480 --> 02:32:15,960
EVEN IF WE CAN'T IDENTIFY THAT 

3604
02:32:15,960 --> 02:32:18,400
USING THE SCALES OR WE MIGHT 

3605
02:32:18,400 --> 02:32:21,000
HAVE BE USING NOR STUDY IF IT'S 

3606
02:32:21,000 --> 02:32:23,200
POSSIBLE.

3607
02:32:23,200 --> 02:32:26,320
THAT WOULD BE IDEAL BUT BEING 

3608
02:32:26,320 --> 02:32:27,480
TACTICAL ONE OF THE FIRST STEPS 

3609
02:32:27,480 --> 02:32:30,640
WOULD BE TO START WITH SOME 

3610
02:32:30,640 --> 02:32:33,680
INDEPENDENT ASSESSMENT TO SEE IF

3611
02:32:33,680 --> 02:32:35,360
THERE WAS AN IMPROVEMENT AND IF 

3612
02:32:35,360 --> 02:32:38,520
SO LET'S FIGURE OUT A WAY TO 

3613
02:32:38,520 --> 02:32:39,640
ENSURE ACCESS TO THESE 

3614
02:32:39,640 --> 02:32:43,920
TECHNOLOGIES.

3615
02:32:43,920 --> 02:32:47,160
>> I THINK OUR METRICS ARE

3616
02:32:47,160 --> 02:32:49,160
IMPRECISE ABOUT THE BCI SUBJECTS

3617
02:32:49,160 --> 02:32:52,280
WHO ARE PARALYZED BUT HAVE 

3618
02:32:52,280 --> 02:32:53,160
FATIGUE IN THEIR ARMS.

3619
02:32:53,160 --> 02:32:54,800
THERE WAS A SONG ABOUT MAKING 

3620
02:32:54,800 --> 02:32:57,520
MEDICAL KNOWLEDGE AND SAID WE 

3621
02:32:57,520 --> 02:33:00,160
HAVE TO BE PLURALISTIC IN HOW WE

3622
02:33:00,160 --> 02:33:02,160
UNDERSTAND THE WORLD.

3623
02:33:02,160 --> 02:33:04,040
THAT WOULD BE HYPOTHESIS 

3624
02:33:04,040 --> 02:33:04,360
GENERATING.

3625
02:33:04,360 --> 02:33:05,920
WE NEED TO VALUE WHAT THE 

3626
02:33:05,920 --> 02:33:07,160
SUBJECTS SAY.

3627
02:33:07,160 --> 02:33:11,480
IT HAS TO BE A CO-PARTNERSHIP, A

3628
02:33:11,480 --> 02:33:14,880
LAB -- COLLABORATION AND IN THE 

3629
02:33:14,880 --> 02:33:16,480
MIND-BRAIN ARENA SUBJECTIVE 

3630
02:33:16,480 --> 02:33:18,560
SENSE AND THEIR SUBJECTIVITY 

3631
02:33:18,560 --> 02:33:20,520
MATTERS AND MAY BE HELPFUL TO 

3632
02:33:20,520 --> 02:33:22,600
UNDERSTAND THE NEXT SET OF 

3633
02:33:22,600 --> 02:33:24,360
QUESTIONS THAT WE CAN TURN INTO 

3634
02:33:24,360 --> 02:33:24,920
EMPIRICAL OR QUANTITATIVE 

3635
02:33:24,920 --> 02:33:29,480
QUESTIONS.

3636
02:33:29,480 --> 02:33:36,200
>> IF I CAN ADD ONE, I
AGREE 

3637
02:33:36,200 --> 02:33:41,920
WITH GABE AND OUR GROUP A LITTLE

3638
02:33:41,920 --> 02:33:44,400
WHILE BACK HAD ETHICISTS IN THE 

3639
02:33:44,400 --> 02:33:47,080
ROOM AND PEOPLE TALKING WITH 

3640
02:33:47,080 --> 02:33:47,720
RESEARCH PARTICIPANTS PRETTY 

3641
02:33:47,720 --> 02:33:53,680
MUCH TO A PERSON THERE WAS 

3642
02:33:53,680 --> 02:33:57,000
AGREEMENT A TRIAL CAN FAIL WHO 

3643
02:33:57,000 --> 02:33:59,120
SHOWED SUCCESS STATISTICALLY AND

3644
02:33:59,120 --> 02:34:00,920
MAY STILL SAY THERE IS CLINICAL 

3645
02:34:00,920 --> 02:34:02,960
UTILITY FROM THE DEVICE AND WE 

3646
02:34:02,960 --> 02:34:05,640
HEARD NA FROM A LOT OF PEOPLE 

3647
02:34:05,640 --> 02:34:07,560
AND EVEN IF IT'S NOT CLINICAL 

3648
02:34:07,560 --> 02:34:13,640
UTILITY BUT ROBUST INDIVIDUAL 

3649
02:34:13,640 --> 02:34:17,160
UTILITY IN TERMS OF THEIR WELL 

3650
02:34:17,160 --> 02:34:18,800
BEING IT FEELS LIKE YOU'RE 

3651
02:34:18,800 --> 02:34:21,360
PULLING AWAY WHAT'S BECOME A 

3652
02:34:21,360 --> 02:34:25,160
CENTRAL LIFE-FULFILLING DEVICE.

3653
02:34:25,160 --> 02:34:29,920
THAT HAS BECOME PART OF THEM.

3654
02:34:29,920 --> 02:34:31,320
WE HAVE TO EXPAND OUR 

3655
02:34:31,320 --> 02:34:32,720
UNDERSTANDING OF BENEFIT 

3656
02:34:32,720 --> 02:34:35,600
RECOGNIZING THERE'LL BE OTHER 

3657
02:34:35,600 --> 02:34:37,200
THINGS THAT WILL WE'LL HAVE TO 

3658
02:34:37,200 --> 02:34:39,480
FACTOR IN.

3659
02:34:39,480 --> 02:34:49,160
ALL RIGHT.

3660
02:34:49,160 --> 02:34:55,560
>> JOE MENTIONED THE
OBLIGATIONS

3661
02:34:55,560 --> 02:34:59,480
IN THE CONTEXT OF THE PATIENTS 

3662
02:34:59,480 --> 02:35:02,520
IN THEIR STUDY AND THE PATIENTS 

3663
02:35:02,520 --> 02:35:03,360
THAT WERE DIFFERENT.

3664
02:35:03,360 --> 02:35:04,880
DO YOU THINK IT SHOULD BE ACROSS

3665
02:35:04,880 --> 02:35:05,560
THE BOARD?

3666
02:35:05,560 --> 02:35:07,200
ARE THERE DIFFERENCES BASED ON 

3667
02:35:07,200 --> 02:35:08,080
THE TYPE OF PATIENT THAT WE'RE 

3668
02:35:08,080 --> 02:35:18,280
CONSIDERING?

3669
02:35:39,080 --> 02:35:41,520
>> THESE ARE INDIVIDUALS
WHERE 

3670
02:35:41,520 --> 02:35:43,480
THEY'VE BEEN NOT ABLE TO ACCESS 

3671
02:35:43,480 --> 02:35:45,760
ANYTHING THAT WORKS.

3672
02:35:45,760 --> 02:35:46,880
WHEN WE ARE ABLE AS A SOCIETY TO

3673
02:35:46,880 --> 02:35:48,440
WORK FOR THESE INDIVIDUALS, WE 

3674
02:35:48,440 --> 02:35:51,160
NEED TO MAKE SURE WE MAKE IT 

3675
02:35:51,160 --> 02:35:53,280
AVAILABLE TO THEM THROUGH THEIR 

3676
02:35:53,280 --> 02:35:55,160
LIFE TIME AND AS LONG AS IT'S 

3677
02:35:55,160 --> 02:36:03,120
BENEFICIAL.

3678
02:36:03,120 --> 02:36:06,040
>> IT'S A FAIR INNINGS
ARGUMENT 

3679
02:36:06,040 --> 02:36:06,720
SPECIFIC TO THE NEED.

3680
02:36:06,720 --> 02:36:07,560
I AGREE WITH GABE.

3681
02:36:07,560 --> 02:36:10,360
>> LAURA, I THINK BECAUSE
I'VE 

3682
02:36:10,360 --> 02:36:13,200
TALKED WITH PEOPLE USING B.C.I.s

3683
02:36:13,200 --> 02:36:14,800
WHERE THEY'RE USING THEM 

3684
02:36:14,800 --> 02:36:16,840
PRIMARILY IN A LAB SETTING WHICH

3685
02:36:16,840 --> 02:36:22,240
IS THEY'RE THERE EXTENSIVELY BUT

3686
02:36:22,240 --> 02:36:25,200
IT'S NOT HAVING THE SAME IMPACT 

3687
02:36:25,200 --> 02:36:28,520
ON DAILY LIFE AN ADAPTIVE 

3688
02:36:28,520 --> 02:36:31,160
SIMULATOR IN JOE'S CASE IS 

3689
02:36:31,160 --> 02:36:35,320
HAVING ON THE INDIVIDUALS.

3690
02:36:35,320 --> 02:36:37,160
WE DO WANT TO CREATE A TAXONOMY 

3691
02:36:37,160 --> 02:36:40,400
THAT LOOKS AT DIFFERENT STUDIES 

3692
02:36:40,400 --> 02:36:42,840
DIFFERENTLY BECAUSE I THINK THE 

3693
02:36:42,840 --> 02:36:44,400
POTENTIAL DAMAGE DONE IN 

3694
02:36:44,400 --> 02:36:45,920
REMOVING ACCESS TO A TECHNOLOGY 

3695
02:36:45,920 --> 02:36:47,480
IS VERY DIFFERENT BASED ON THE 

3696
02:36:47,480 --> 02:36:50,400
KIND OF ROBUSTNESS OF 

3697
02:36:50,400 --> 02:36:55,160
INTEGRATION INTO A PERSON'S LIFE

3698
02:36:55,160 --> 02:36:57,880
AND THE LEVEL OF BENEFIT.

3699
02:36:57,880 --> 02:36:59,480
>> I'LL GO TO OUR LAST
QUESTION 

3700
02:36:59,480 --> 02:37:00,800
BECAUSE WE'RE SUPPOSED TO WRAP 

3701
02:37:00,800 --> 02:37:01,160
UP SOON.

3702
02:37:01,160 --> 02:37:03,240
WHEN THINKING ABOUT EXPANDING 

3703
02:37:03,240 --> 02:37:05,520
NEW ETHICS DISCUSSIONS BEYOND 

3704
02:37:05,520 --> 02:37:08,520
THE BELMONT PRINCIPLES, 

3705
02:37:08,520 --> 02:37:10,120
RECONSIDERING CONTEXT OF POWER 

3706
02:37:10,120 --> 02:37:13,200
AND AUTHORITY FOR EXAMPLE, WHO 

3707
02:37:13,200 --> 02:37:22,800
ELSE BE THE  -- BESIDES THE 

3708
02:37:22,800 --> 02:37:25,200
PATIENTS AND OTHERS AND 

3709
02:37:25,200 --> 02:37:26,760
PHILOSOPHERS WHO SHOULD BE 

3710
02:37:26,760 --> 02:37:28,520
BROUGHT IN THE DISCUSSION?

3711
02:37:28,520 --> 02:37:32,880
>> I THINK THERE'S A
NUMBER OF 

3712
02:37:32,880 --> 02:37:33,280
CONSTITUENCIES.

3713
02:37:33,280 --> 02:37:37,160
THE ENGINEERS NEED TO BE IN AND 

3714
02:37:37,160 --> 02:37:40,960
THE PUBLIC SO THEY'RE NOT 

3715
02:37:40,960 --> 02:37:41,960
CLASSIFIED TECHNOLOGIES OR SOME 

3716
02:37:41,960 --> 02:37:43,040
VERSION THAT'S NOT CLASSIFIED.

3717
02:37:43,040 --> 02:37:45,680
WE NEED TO HAVE A PROACTIVE 

3718
02:37:45,680 --> 02:37:48,160
DISCOURSE WITH THE PUBLIC 

3719
02:37:48,160 --> 02:37:49,200
STARTING RIGHT NOW THAT 

3720
02:37:49,200 --> 02:37:51,600
CONSIDERS THE REALISTIC TRULY 

3721
02:37:51,600 --> 02:37:54,120
REALISTIC CAPABILITIES OF THESE 

3722
02:37:54,120 --> 02:37:57,400
TECHNOLOGIES THAT AVOIDS HYPE, 

3723
02:37:57,400 --> 02:38:01,560
THAT AVOIDS HYPERBOLE AND GETS 

3724
02:38:01,560 --> 02:38:03,800
AHEAD OF THE CURB IN TERMS OF 

3725
02:38:03,800 --> 02:38:05,720
THE POTENTIAL KINDS OF 

3726
02:38:05,720 --> 02:38:07,160
MISINFORMATION AND OTHER KINDS 

3727
02:38:07,160 --> 02:38:10,120
OF INFORMATIONAL CAMPAIGNS, 

3728
02:38:10,120 --> 02:38:10,720
MISSED CAMPAIGNS AND WAYS 

3729
02:38:10,720 --> 02:38:12,720
INFORMATION TOWARDS THE PUBLIC 

3730
02:38:12,720 --> 02:38:14,920
COULD BE MISUSED IN ORDER TO 

3731
02:38:14,920 --> 02:38:17,360
IMPACT THE TRAJECTORY OF 

3732
02:38:17,360 --> 02:38:18,200
DEVELOPMENT.

3733
02:38:18,200 --> 02:38:20,160
IT'S REALLY IMPORTANT FOR MANY 

3734
02:38:20,160 --> 02:38:23,480
REASONS THERE'S A SCIENTIFICALLY

3735
02:38:23,480 --> 02:38:26,880
AND NEUROTECHNOLOGICALLY LITERAL

3736
02:38:26,880 --> 02:38:28,320
POPULATION ABLE TO DISTINGUISH 

3737
02:38:28,320 --> 02:38:29,920
HYPE, SCIENCE FICTION FROM 

3738
02:38:29,920 --> 02:38:33,000
SCIENCE FACT AND AT LEAST TO 

3739
02:38:33,000 --> 02:38:34,400
ANTICIPATE WHAT'S POSSIBLE AND 

3740
02:38:34,400 --> 02:38:35,120
NOT POSSIBLE.

3741
02:38:35,120 --> 02:38:39,480
THERE'S GOOD EXAMPLES OF HOW 

3742
02:38:39,480 --> 02:38:41,680
SCIENCE FICTION, FOR INSTANCE, 

3743
02:38:41,680 --> 02:38:47,200
HAS HAD REAL IMPACTS ON CLINICAL

3744
02:38:47,200 --> 02:38:48,680
AND ETHICAL DECISION MAKING 

3745
02:38:48,680 --> 02:38:51,320
PEOPLE WHO WATCHED LUCIE AND 

3746
02:38:51,320 --> 02:38:53,320
HEARD WE ONLY USE 10% OF OUR 

3747
02:38:53,320 --> 02:38:54,600
BRAINS WHICH IS A MYTH.

3748
02:38:54,600 --> 02:38:57,720
THERE'S A NUMBER OF STUDIES AND 

3749
02:38:57,720 --> 02:39:01,200
ANECDOTES WHERE FAMILIES HANDLE 

3750
02:39:01,200 --> 02:39:02,400
CONDITIONS IN SITUATIONS WITH 

3751
02:39:02,400 --> 02:39:05,200
CARE AROUND END OF LIFE WITH 

3752
02:39:05,200 --> 02:39:12,640
STAGGERING IMPACTS BASED ON 

3753
02:39:12,640 --> 02:39:13,680
MISINFORMM

3754
02:39:13,680 --> 02:39:15,160
MISUNDERSTANDING OF 

3755
02:39:15,160 --> 02:39:15,520
MISINFORMATION.

3756
02:39:15,520 --> 02:39:17,280
YOU CAN UNDERSTAND THE 

3757
02:39:17,280 --> 02:39:19,480
MISPERCEPTIONS LOCUS OF CONTROL 

3758
02:39:19,480 --> 02:39:23,480
AND THERE MAY BE ISSUES WHERE 

3759
02:39:23,480 --> 02:39:27,440
THERE MAY BE THE ABILITY TO 

3760
02:39:27,440 --> 02:39:31,160
INFLUENCE SOMEBODY AT THE 

3761
02:39:31,160 --> 02:39:33,080
TECHNOLOGIES BEING INTEGRATED AS

3762
02:39:33,080 --> 02:39:39,360
IN SARAH'S WORK AND GABE'S WORK 

3763
02:39:39,360 --> 02:39:39,600
SUGGEST.

3764
02:39:39,600 --> 02:39:43,080
THOSE SORTS OF ACCOUNTS CAN BE 

3765
02:39:43,080 --> 02:39:46,040
TAKEN BY THE PUBLIC THAT CAN 

3766
02:39:46,040 --> 02:39:47,480
CREATE A LOT OF FEAR 

3767
02:39:47,480 --> 02:39:49,680
APPROPRIATELY AND 

3768
02:39:49,680 --> 02:39:50,040
INAPPROPRIATELY.

3769
02:39:50,040 --> 02:39:55,120
>> AND CAREGIVERS WOULD BE

3770
02:39:55,120 --> 02:39:57,520
ANOTHER CONSTITUENCY TO ADD.

3771
02:39:57,520 --> 02:39:58,640
FOR SOME CONDITIONS THEY PLAY 

3772
02:39:58,640 --> 02:40:01,160
SUCH AN IMPORTANT ROLE.

3773
02:40:01,160 --> 02:40:04,720
GETTING THEIR PERSPECTIVES.

3774
02:40:04,720 --> 02:40:07,000
>> I THINK IT'S IMPORTANT
TO 

3775
02:40:07,000 --> 02:40:08,360
THINK ABOUT WHOSE NOT GETTING TO

3776
02:40:08,360 --> 02:40:10,240
THE TRIALS.

3777
02:40:10,240 --> 02:40:11,000
WHO MAY NOT HAVE THE INSURANCE 

3778
02:40:11,000 --> 02:40:14,840
AND MAY NOT BE ABLE TO ACCESS 

3779
02:40:14,840 --> 02:40:17,040
SOME OF THESE HOSPITALS AND THE 

3780
02:40:17,040 --> 02:40:19,200
CARE SOME OF THE HOSPITALS 

3781
02:40:19,200 --> 02:40:21,320
PROVIDE AND THE RESEARCH THAT 

3782
02:40:21,320 --> 02:40:24,400
SOME THOSE CLINICIANS ARE 

3783
02:40:24,400 --> 02:40:26,880
CONDUCTING AND WITH THAT ALSO AS

3784
02:40:26,880 --> 02:40:29,880
WE'VE HEARD DURING THE DAY A 

3785
02:40:29,880 --> 02:40:31,080
NUMBER OF DIFFERENT UNDER 

3786
02:40:31,080 --> 02:40:33,920
REPRESENTED GROUPS NOT GETTING 

3787
02:40:33,920 --> 02:40:34,960
ACCESS TO THESE TECHNOLOGIES.

3788
02:40:34,960 --> 02:40:39,440
WHAT WE NEED TO MAKE SURE WE NOT

3789
02:40:39,440 --> 02:40:41,840
ONLY INCLUDE THOSE BUT PATIENTS,

3790
02:40:41,840 --> 02:40:43,600
ETCETERA THAT ARE THERE AND ALSO

3791
02:40:43,600 --> 02:40:45,400
LOOK FURTHER AND MAKE SURE OTHER

3792
02:40:45,400 --> 02:40:46,840
PEOPLE WHO COULD POTENTIALLY 

3793
02:40:46,840 --> 02:40:49,200
BENEFIT FROM THESE ARE ALSO 

3794
02:40:49,200 --> 02:40:49,640
BEING INCLUDED IN THE 

3795
02:40:49,640 --> 02:40:50,600
CONVERSATION.

3796
02:40:50,600 --> 02:40:52,600
>> AND WE NEED TO INCLUDE
THEM 

3797
02:40:52,600 --> 02:40:54,560
AT THE DESIGN AND DEVELOPMENT 

3798
02:40:54,560 --> 02:40:59,600
PHASE TOO WHEN IT COMES ACCESS.

3799
02:40:59,600 --> 02:41:03,760
FOR INSTANCE, FOR DIFFERENT HAIR

3800
02:41:03,760 --> 02:41:05,480
TEXTURES CAN LIMIT ACCESS TO 

3801
02:41:05,480 --> 02:41:06,440
TECHNOLOGIES IF THEY'RE 

3802
02:41:06,440 --> 02:41:07,560
DEVELOPED IN CERTAIN POPULATIONS

3803
02:41:07,560 --> 02:41:09,960
AND NOT BEING INCLUSIVE AT THAT 

3804
02:41:09,960 --> 02:41:10,160
LEVEL.

3805
02:41:10,160 --> 02:41:11,480
IT'S MORE THAN JUST THE 

3806
02:41:11,480 --> 02:41:19,200
DISCUSSION.

3807
02:41:19,200 --> 02:41:21,000
>> ALL RIGHT.

3808
02:41:21,000 --> 02:41:24,680
>> I THINK OUR TIME IS UP
AND AS

3809
02:41:24,680 --> 02:41:27,480
CO-CONVENER WITH LAURA I WANT TO

3810
02:41:27,480 --> 02:41:28,880
THANK EVERYBODY FOR YOUR 

3811
02:41:28,880 --> 02:41:29,280
OUTSTANDING PRESENTATIONS AND TO

3812
02:41:29,280 --> 02:41:30,200
THE BRAIN INITIATIVE FOR HOSTING

3813
02:41:30,200 --> 02:41:31,720
THIS DISCUSSION OF NEUROETHICS 

3814
02:41:31,720 --> 02:41:32,000
AND ENJOY THE REST OF THE 

3815
02:41:32,000 --> 00:00:00,000
MEETING.