>>WELCOME.
YOU'VE JOINED THE PANEL ON
TOWARD MORE DIVERSE PARTICIPANTS
AND HUMAN NEUROIMAGING RESEARCH:
OPPORTUNITIES AND CHALLENGES.
I'M SUSAN WOLF.
REGIONS PROFESSOR AND LAW
PROFESSOR OF PUBLIC POLICY AT
THE UNIVERSITY OF MINNESOTA AND
FACULTY CHAIR AT THE
UNIVERSITY'S CONSORTIUM ON LAW
AND HEALTH ENVIRONMENT.
IF I COULD HAVE THE MODERATOR,
SLIDES PLEASE.
GREAT.
WE'RE HERE TO TACKLE AN ISSUE OF
TREMENDOUS IMPORTANCE TO
EVERYONE HERE IN THE BRAIN
COMMUNITY WHICH IS HOW EMERGING
M R EEUCHLT AND OTHER TECHNOLOGY
CAN HELP ADVANCE A MORE DIVERSE
SET OF PARTICIPANTS IN OUR
RESEARCH AND ENGAGEMENT.
WE WANT TO TALK ABOUT THE
OPPORTUNITIES, BUT ALSO THE
CHALLENGES WITH A TERRIFIC PANEL
OF FIVE EXPERTS.
NEXT SLIDE, PLEASE.
THIS IS OUR FUNDING
ACKNOWLEDGEMENT.
THANK YOU.
NEXT SLIDE.
SO THE FOCUS OF THIS PANEL IS
THE ETHICAL, LEGAL, AND SOCIAL
IMPLICATIONS THE L C ISSUES THAT
EMERGE FROM EXPANDING EXCLUSIVE
IMAGES FROM NEUROIMAGING
RESEARCH.
AND THIS PANEL GROWS OUT OF A
BRAIN FUNDED IF YOU LOOK ON THE
RIGHT SIDE OF THE SLIDES WE'VE
GOT DR. LENETTE JONES AT THE
UNIVERSITY OF MICHIGAN SCHOOL OF
NURSING.
DR. FRANCIS SHEN WHO IS
PROFESSOR OF LAW HERE AT THE
UNIVERSITY OF MINNESOTA WHERE I
AM AS WELL AS FACULTY MEMBER.
DR. MILDRED CHO THE ASSOCIATE
DIRECTOR OF STANFORD CENTER FOR
BIO MEDICAL ETHICS AND
DR. JONATHAN JACKSON WHOSE
EXECUTIVE DIRECTOR OF THE
COMMUNITY ACCESS RECRUITMENT AND
ENGAGEMENT RESEARCH CENTER AT
MASS GENERAL AND HARVARD MEDICAL
SCHOOL AS WELL AS AN INSTRUCTOR
OF NEUROLOGY AT MGH.
SO THIS IS JUST A QUICK CONTEXT
SLIDE TO GIVE YOU A SENSE OF
THIS PROJECT.
DR. JACKSON IS A PARTICIPANT IN
OUR WONDERFUL WORKING GROUP AND
YOU'LL SEE WE HAVE TWO AIMS.
ONE TO SERVE THE GENERAL PUBLIC
AS WELL AS EXPERT STAKEHOLDERS
TO PROBE LIKELY USE CASES FOR
HIGHLY PORTABLE MRI, THE ISSUES
THAT FLOW FROM THAT, POTENTIAL
SOLUTIONS AND FOR THE PUBLIC,
WILLINGNESS TO PARTICIPATE.
ALL OF THIS IS AND SOLICITED
FEEDBACK.
A LOT OF THESE PEOPLE WILL BE
KNOWN TO YOU INCLUDING ONE OF
THE PLANNERS FOR THIS EVENT.
NEXT SLIDE.
THEN AFTER ALL FIVE SPEAKERS
HAVE PRESENTED WE'LL GO TO
TALKING WITH EACH OTHER AND
PRESENT YOUR QUESTIONS.
WITH THAT, I'D LIKE TO WELCOME
DR. DOTSON.
>> THANK YOU SO MUCH TO DR. WOLF
AND DR. SHEN FOR THE ABILITY TO
BE PART OF THIS PANEL.
THE LONG AND SHORT OF THINGS IS
THAT THE RESEARCH WE'VE BEEN
DOING IN COGNITIVE AND ETHNIC
NEUROSCIENCE.
IN A REVIEW PAPER THAT I
CO-AUTHORED A COUPLE OF YEARS
AGO, WE TRIED TO PUT SOME
NUMBERSES ON THIS PROBLEM THAT
WE WERE IDENTIFYING THAT
DIFFERENT ASPECTS OF DIVERSITY
WHETHER IT BE RACE, ETHNICITY,
SOCIO ECONOMIC STATUS WE CHOSE
TWO WELL-KNOWN COGNITIVE JOURNAL
SCIENCES.
AND LOOKED AT EACH OF THE
ARTICLES THAT WERE PUBLISHED FOR
AN ENTIRE YEAR AND WHAT WE FOUND
ACROSS 208 ARTICLES IS THAT THE
NUMBERS WERE QUITE DISHEARTENING
IN THE SENSE WE ONLY HAD ABOUT
14% OF STUDIES THAT EVEN
REPORTED ON RACE OR ETHNICITY.
ONLY 18% REPORTED ON SOCIO
ECONOMIC STATUS AND LESS THAN 1%
EXAMINED RACE OR ETHNICITY AS A
MEASURE OR SOCIO ECONOMIC STATUS
AS A PREDICTOR IN THEIR STUDIES.
SO NOT ONLY ARE VERY FEW STUDIES
REPORTING THE NUMBERS, BUT EVEN
FEWER ARE TRYING TO USE THEM AS
A PREDICTOR.
THERE WERE THREE OF THE SAMPLES
THAT WERE 100% NONHISPANIC
WHITE.
SO IT HELPS JUST PUT AGAIN SOME
NUMBERS ON THIS PROBLEM.
I WILL ACKNOWLEDGE THAT THIS WAS
DONE BEFORE 2020.
A LOT OF THE FOCUS HAS BEEN ON
INCREASING THE STUDY EXAMPLES.
BUT I DO WANT TO HIGHLIGHT WHERE
WE'VE BEEN IN RECENT HISTORY AND
THAT WE REALLY DON'T WANT TO GO
BACK THERE.
WE WANT TO KEEP IMPROVING OUR
INCLUSION OF DIFFERENT GROUPS
WITHIN OUR STUDIES.
CHRONIC VASCULAR DISEASE CAN BE
PREDISEASE POSED OR WHEN IT
STARTS TO AFFECT BRAIN NETWORKS
THAT ARE IMPORTANT FOR MOOD.
AND AS YOU MIGHT EXPECT BASED ON
THE FACT THAT VASCULAR DISEASES
ARE MORE COMMON IN SOME
POPULATIONS PARTICULARLY IN
BLACK, OLDER ADULTS, YOU WOULD
PROBABLY AND BLACK OLDER
ADULTIADULTS.
AND THE ANSWER IS VERY LITTLE.
WHEN SHE TRIED TO LOOK
SPECIFICALLY, THERE WERE ONLY
TWO STUDIES THAT CAME UP.
THAT HAS TO DO WITH THIS
CO-MORBIDITY OF DEPRESSION AND
VASCULAR CONDITIONS.
THEN WE FOUND A FEW MORE
STUDIES, BUT ONLY 30 USING THESE
WITHIN THOSE STUDIES, THERE WAS
STILL ONLY ABOUT 67 PARTICIPANTS
THAT WERE BLACK ACROSS THESE
STUDIES AND THE PERCENTAGE OF
THE SAMPLE WAS AS LOW AS 14%.
BECAUSE WE'RE BEING LENIENT, WE
HAD INCLUDED THE STUDY.
IMPORTANTLY, FOR WHAT WE'RE
TALKING ABOUT TODAY, ONLY ONE
USED IMAGING AND THAT'S
IMPORTANT BECAUSE WE THINK THAT
NEUROIMAGING IS THE BEST WAY OF
FINDING DEPRESSION.
AND SO IN TERMS OF THE BEST WAY
OF DEFINING VASCULAR DEPRESSION,
THERE WAS ONLY ONE STUDY.
BRIEFLY, WE DID FIND THERE WAS
AN ASSOCIATION BETWEEN VASCULAR
CONDITIONS AND DEPRESSION THAT
HAVING THAT WAS ASSOCIATED WITH
COGNITIVE, SOCIAL OUTCOMINGS.
AGAIN, THIS WAS USING VERY
LENIENT CRITERIA AND NOT
SPECIFICALLY LOOKING AT VASCULAR
DEPRESSION.
THE NEGATIVE CONSEQUENCES OF
VASCULAR DEPRESSION COULD BE
GREATER IN BLACK, OLDER ADULTS.
FOR EXAMPLE, IN CERTAIN RECENT
ANALYSES WE'VE DONE IN THE LAB
AS STUDENTS DISSERTATION, SHE
FOUND THAT THE RELATIONSHIP
BETWEEN DEPRESSO SYMPTOMS WAS
GREATER IN WHITE OLDER ADULTS.
THE VASCULAR DEPRESSION WAS
GREATER ON PROCESSING SPEED IN
THE BLACK SAMPLE COMPARED TO THE
WHITE SAMPLE.
SO WE'RE SEEING THIS PRELIMINARY
EVIDENCE THAT NOT ONLY IS THERE
A HEALTH DISPARITY IN VASCULAR
DEPRESSION AND WHITE OLDER
ADULTS.
DESPITE THAT, THERE'S SO LITTLE
RESEARCH OUT THERE THAT
ADDRESSES THIS VULNERABLE GROUP.
SO IT'S FULLY RESEARCHED ON A
CONDITION THAT THEY'RE
PARTICULARLY VULNERABLE TO AND
THIS HAS A LOT OF IMPLICATIONS.
SO SOME OF THE LIMITATIONS OF
THIS THAT THIS DEMONSTRATES
ACROSS STUDIES THAT DON'T HAVE,
YOU KNOW, ADEQUATE
REPRESENTATION ARE ABILITY TO
GENERALIZE FINDINGS IS GOING TO
BE LOWER WHEN THE PEOPLE WHO ARE
STUDYING ARE NOT THE PEOPLE
BEING AFFECTED BY THE CONDITIONS
WE'RE LOOKING AT.
THERE'S A MISSED OPPORTUNITY TO
IMPROVE TREATMENT AND WE CAN
IMPROVE TREATMENT TO IDENTIFY
AND PERSONALIZE INTERVENTIONS,
BUT THAT CAN'T BE DONE WHEN
YOU'RE NOT INCLUDING A SAMPLE OF
PEOPLE REPRESENTING THE
POPULATION.
WE KNOW THAT WHEN WE DON'T HAVE
REPRESENTATION IN RESEARCH, WE
CAN PERPETUATE HEALTH
DISPARITIES AND BECAUSE WE'RE
NOT ABLE TO SPECIFIC ADDRESS HOW
DIFFERENT GROUPS ARE AFFECTED
AND UNDERSTANDING HOW BASES OF
DIFFERENT DISORDERS COULD BE
DIFFERENT IN DIFFERENT GROUPS
AND I THINK ULTIMATELY, THERE'S
IMPLICATIONS FOR OUR ETHICAL AND
MORAL RESPONSIBILITIES AS PEOPLE
PEOPLE WERE FUNDED BY NIH AND
WANT TO DO RESEARCH FOR THE
PEOPLE PAYING OUR TAX DOLLARS TO
BE DOING THE RESEARCH THAT WE'RE
DOING.
THAT'S A BIG QUESTION WITHOUT
SIMPLE ANSWERS.
I WILL SAY A FEW THINGS WE CAN
THINK OF RIGHT AWAY, ONE IS WE
CAN WORK ON INCREASING DIVERSITY
OF RESEARCH SAMPLES.
THAT'S EASIER SAID THAN DONE.
DEPENDING ON WHERE YOU LIVE,
WHERE YOU WORK IN TERMS OF
TRYING TO INCREASE DIVERSITY,
BUT THERE ARE DIFFERENT WAYS
THAT CAN BE HELPFUL.
I OFTEN RECOMMEND GIVING BACK TO
THE COMMUNITY.
RATHER THAN JUST SAYING I WANT
TO COME TO YOUR COMMUNITY
CENTER, SAY I'M GOING TO COME
AND GIVE A RESEARCH TOPIC IN
LANGUAGE AND FOCUS ON THE
COMMUNITY, GIVE YOU INFORMATION
THAT'S HELPFUL.
BUT I'VE GIVEN YOU SOME
INFORMATION THAT'S HELPFUL.
SO IF YOU'RE LIVING IN A PLACE
WHERE THE COMMUNITY AROUND YOU
IS NOT REPRESENTING DIFFERENT
ASPECTS OF DIVERSITY, WE CAN DO
BETTER BY HAVING STUDIES ENGAGED
IN DIFFERENT PLACES SO YOU CAN
INCREASE DIVERSITY IN THAT WAY.
WE CAN ALSO MAKE BETTER USE OF
EXISTING DATA.
SO ONE THING WE'VE BEEN DOING IN
MY LAB IS WHEN WE HAVE THESE
LARGE PUBLICLY AVAILABLE DATA
SETS, OFTEN TIMES, THE
PERCENTAGE OF THE POPULATION OR
THE SAMPLE THAT REPRESENTS
DIFFERENT GROUPS WHETHER IT BE
LOW SCS, THE PERCENTAGE MIGHT BE
LOW, BUT THE ABSOLUTE NUMBER IS
NOT TOO BAD.
SO YOU MIGHT HAVE 300, 400
PEOPLE WHO ARE REPRESENTING SOME
ASPECT OF DIVERSITY AND YOU CAN
FOCUS ANALYSES ON THAT SUBSET SO
THAT THE PLANNINGS ARE NOT
GETTING SO MUCH WATERED DOWN BY
HAVING THE OVERALL GROUP
ANALYSIS.
WE CAN DO THESE SUBSAMPLE
ANALYSES AND ALSO INTEGRATE FROM
DIFFERENT DATA SETS.
SO YOU'RE COMBINING AND
COLLAPSING DATA TOGETHER.
SO YOU HAVE A WAY OF INCREASING
YOUR SAMPLE SIZE.
FINALLY, WE CAN BE MORE
TRANSPARENT IN REPORTING.
THE VERY LEAST THAT WE DO IS
MAKE SURE EVERY STUDY WE DO,
WE'RE REPORTING ON DIFFERENT
ASPECTS THAT THE LEADER WILL
KNOW HOW WELL THE SUPPLY TO
DIFFERENT GROUPSES AND WHAT
STEPS MIGHT BE FOR THAT AREA OF
RESEARCH.
LASTLY, I WOULD HIGHLY RECOMMEND
HOW ASPECTS OF DIVERSITY CAN BE
AFFECTED IN OUR FINDINGS
DISCUSSIONS.
SO AT LEAST TALK ABOUT IT.
GIVING THAT FUTURE INSPIRATION
FOR STUDIES.
AND, WORRYING WITH THE DATA THAT
WE HAVE WHEN WE'RE NOT ABLE TO
GET THE SAMPLES THAT MAYBE WE
WANT, BUT AT LEAST BEING AWARE
OF HOW IT CAN AFFECT THE
RESEARCH.
SO THANK YOU FOR YOUR ATTENTION.
WITH THAT, I WILL TURN THINGS
OVER TO OUR NEXT SPEAKER WHO IS
DR. JONES.
>> GOOD MORNING.
AND THANK YOU.
MY NAME IS LENETTE JONES.
I'M AN ASSISTANT PROFESSOR AT
THE UNIVERSITY OF MICHIGAN
SCHOOL OF NURSING.
I'VE BEEN INVOLVED WITH THIS
RESEARCH FOR MORE THAN 20 YEARS.
SO I'M EXCITED TO SHARE MY WORK
WITH YOU, SO LET'S GET STARTED.
BRIEFLY, I AM FUNDED BY THE NIH,
I ALSO LIKE TO ACKNOWLEDGE
SUPPORT I RECEIVE FROM OUR
MENTORS SO FOR A SHORT TIME
TOGETHER, I'VE OUTLINED THREE
GOALS.
NEXT, I'M GOING TO SHARE
FINDINGS FROM THREE OF MY
STUDIES FROM RELEVANT TOPICS.
AND LAST I WILL SUMMARIZE
FINDINGS AS A SCIENTIFIC
COMMUNITY THE LEADING CAUSE OF
MORBIDITY AND G MORTALITY AMONG.
SO APPROXIMATELY ONE IN THREE
U.S. ADULTS HAVE HYPERTENSION,
BUT AMONG AFRICAN AMERICANS,
IT'S MUCH HIGHER AT 54%.
SO IN ADDITION, WITH COMPARED TO
OTHER GROUPS.
AFRICAN AMERICANS ARE TWO TIMES
LIKELY TO SUFFER A STROKE OR DIE
FROM A CARDIAC RELATED DEATH AND
OVER FOUR TIMES LIKELY TO BE
DIAGNOSED WITH END STAGE RENAL
DISEASE.
SO THIS IS A VERY IMPORTANT
PROBLEM TO ADDRESS.
SO ALSO, WE KNOW THAT
HYPERTENSION CAN BE MANAGED WITH
LIFE STYLE CHANGES SUCH AS
CHANGES IN EATING PATTERNS,
INCREASING EXERCISE, AND
ADHERING TO MEDICATIONS.
HOWEVER, ALL OF THESE ACTIVITIES
TAKE COGNIZANT EFFORT AND WORK.
AND SO IN ADDITION TO THE ISSUES
I OUTLINED ON THE PREVIOUS SLIDE
AFRICAN AMERICAN ADULTS ARE MORE
LIKELY TO HAVE COGNITIVE
IMPAREMENTS.
SO THESE PROBLEMS WILL BENEFIT
FROM SCIENTIFIC INVESTIGATION
INCLUDING NEUROIMAGING STUDIES
TO SEE EXACTLY WHAT'S GOING ON
IN THE BRAIN AND WITH BRAIN
MATTER.
SO WE SHARE MODELINGS IN OUR
APPROACH TO ADDRESSING THESE
PROBLEMS.
THE OVERARCHING GOAL OF MY
PROGRAM OF RESEARCH IS TO REDUCE
HEALTH DISPARITIES WITH CARDIAC
RELATED ILLNESSES.
OUR FOCUS ON AFRICAN AMERICAN
WOMEN WITH HYPERTENSION AND
ENHANCING BLOOD PRESSURE
CONTROL.
THERE ARE TWO PILLARS THAT
SUPPORT OUR PROGRAM OF RESEARCH.
I LOOK AT HOW WOMEN SEEK, SHARE,
AND USE HEALTH DECISIONS ON HOW
THEY MANAGE BLOOD PRESSURES.
I DETERMINE WHAT WE CAN LEARN IN
THE SCANNER AND HOW WE CAN USE
THAT INFORMATION TO SHAPE
BEHAVIOR OUTSIDE.
SO THE FIRST STUDY THAT I
CONDUCTED, WHAT WE DID, WE DID
SOME SURVEY WORK AS WELL AS
CONDUCTING SCANS.
SO WE CREATED A PROTOCOL VIDEO
TO LOOK AT CHANGES IN BRAIN
ACTIVITY AND BLOOD FLOW WHEN
THEY WERE LOOKING AT THIS
PARTICULAR VIDEO.
SO THE FIRST THING THAT I FOUND
IS THAT HEALTH INFORMATION
SHARING WHICH IS ONE OF THE
BEHAVIORS THAT I STUDY IS
ASSOCIATED WITH ACTIVATION IN
THE VENTRAL MEDIUM PREFRONTAL
CORTEX WHICH WE WERE LOOKING AT
SOCIAL, EMOTIONAL, AND
EMPATHETIC PRACTICING.
IN THIS PARTICULAR STUDY, THERE
WERE 19 AFRICAN AMERICAN ADULTS
WITH PRE-HYPERTENSION, SO
ELEVATED BLOOD PRESSURE, BUT NOT
NECESSARILY DIAGNOSED WITH
HYPERTENSION AT THAT TIME.
AND SO THIS REALLY CREATED A
FOUNDATION AND INTEREST FOR ME
OF WHAT MORE CAN WE LEARN
THROUGH THE NEUROIMAGING STUDIES
ABOUT AFRICAN AMERICAN ADULTS
WITH HYPERTENSION THAT WOULD
HELP US TO ENHANCE THEIR SUB
MANAGEMENT ACTIVITIES.
NEXT UP WAS TO CONDUCT A
SYSTEMATIC REVIEW.
AND SO THIS WAS INITIALLY A
LITERATURE SEARCH, THE SEARCH
FOR NEUROIMAGING EVIDENCE
SPECIFIC TO AFRICAN AMERICAN
WOMEN WITH HYPERTENSION.
SIMILAR TO OUR FIRST SPEAKER,
DR. DOTSON, I DID NOT FIND -- I
FOUND ONE STUDY THAT WAS RELATED
AND SO NOT REALLY A HUGE
CONTRIBUTION AND SO I HAD TO
CHANGE THE CONSTRAINTS OF MY
STUDY AND BROADEN THE SEARCH TO
SEE WHAT OTHER EVIDENCE WAS OUT
THERE.
AND SO WHAT I DECIDED TO DO WAS
TO LOOK AT INDIVIDUALS THAT HAD
CARDIAC RELATED ILLNESS AND WHAT
STUDIES HAD BEEN CONDUCTED.
SO WHEN I EXAMINED THE
DEMOGRAPHICS OF PARTICIPANTS IN
THESE STUDIES, I FOUND THAT SOME
DID NOT EVEN REPORT RACE,
ETHNICITY, SOME DID NOT REPORT
GENDER.
THE DEMOGRAPHICS WERE DEFINITELY
LACKING AND SO FOR A SCIENTIST
LIKE MYSELF, THERE REALLY WASN'T
MUCH EVIDENCE TO GO OFF OF AND
IT WAS VERY DISHEARTENING.
SO ONE OF THE THINGS I'VE TALKED
ABOUT IN THE DISCUSSION IS A
STRINGENT MORE DETAILED
COLLECTION FOR PARTICIPANTS
ENROLLED IN THE STUDIES.
SO IN THE MOST RECENT STUDY I
CONDUCTED WAS A FACEBOOK STUDY
THAT LINKED TO A SURVEY AND SO I
WAS VERY INTERESTED IN
DETERMINING IF METRO DETROIT
WOMEN WERE INTERESTED IN
PARTICIPATED IN RESEARCH.
AND WHAT MIGHT BE SOME OF THE
FACTORS THAT HINDER OR
FACILITATED PARTICIPATION.
SO THIS IS A STUDY OF 257
AFRICAN AMERICAN WOMEN WITH
HYPERTENSION.
THE SOLE PREDICTOR PREDICTED
THAT FUTURE PARTS IN STUDIES WAS
IF THEY HAD SOMEBODY TO
ACCOMPANY THEM TO THE LAB WHICH
IS SOMETHING I HAD NOT THOUGHT
OF IN PREPARING STUDIES IN
TRYING TO FACILITATE
PARTICIPATION.
SOME PARTICIPANTS WERE NERVOUS
ABOUT THE SMALL SPACE OF THE
FMRI, SO WE'RE GOING TO TALK
ABOUT HOW IT'S IMPORTANT IN THIS
COMMUNITY.
19% SAID THEY WERE CLAUSER
PHOBIC AND CONCERNED ABOUT THE
LENGTH OF TIME THWERE IN IT.
STUDIES ARE NEEDED THAT FOCUS
SPECIFICALLY ON THESE GROUPS AT
THIS TIME.
AND ALSO IN FUTURE STUDIES, WE
NEED TO CONSIDER DIVERSITY WITH
THE PARTICULAR SAMPLING METHODS
AND THINKING ABOUT HOW WE'RE
GOING TO CAPTURE A DIVERSE
SAMPLE SXL HOW THESE FINDINGS
WILL REFLECT THE ENTIRE
POPULATION.
I ALSO WANT TO HIGHLIGHT THAT
AFRICAN AMERICAN WOMEN ARE
ELIGIBLE AND INTERESTED IN
PARTICIPATING IN FMRI RESEARCH.
AND ONE OF THE THINGS SAYS WOMEN
WON'T PARTICIPATE, WOMEN
ACTUALLY ARE FROM MY GROUP OF
INTERESTED IN PARTICIPATING IN
NEUROIMAGING STUDIES.
SO THANK YOU SO MUCH FOR YOUR
TIME.
I'M EXCITED TO TALK WITH YOU AT
THE END OF THIS PANEL AND NOW I
WILL PASS IT ON TO DR. SHEN.
>> THANK YOU SO MUCH.
THAT WAS GREAT.
AND I REALLY AM SO EXCITED THIS
PANEL IS HAPPENING.
I'M GOING TO TALK ABOUT SOME
POTENTIAL DOWN SIDES THAT WE CAN
ADDRESS NOW ASSOCIATED WITH
EXPANDING AND HAVING A MORE
DIVERSE AND INCLUSIVE SET OF
PARTICIPANTS IN HUMAN
NEUROIMAGING RESEARCH.
AND I WANT TO SAY AT THE OUTSET
I DO THIS NOT TO THROW COLD
WATER ON ANYTHING, BUT TO
HOPEFULLY BE PART OF THIS WHOLE
PANEL.
I THINK IT'S PART OF AN EFFORT
TO GET AHEAD OF ISSUES THAT A
HISTORY TELLS US WILL LIKELY
EMERGE AND WE CAN HANDLE.
I WANT TO COVER -- JUST IN MY
NOTES DISCLOSURES.
I WANT TO COVER JUST THREE
THINGS TODAY AND MAKE JUST THREE
POINTS.
THE FIRST IS TO CONFIRM I THINK
WE'RE HEADING INTO A NEW ERA OF
NEUROIMAGING WHERE HOPEFULLY
WE'LL BEGIN TO ADDRESS THE
ISSUES THAT DR. DOTSON AND
DR. JONES RAISED AND WILL CHANGE
DEMOGRAPHICS.
BUT THEN I WANT TO THINK ABOUT
LOOKING BACK AND LOOKING AT
HISTORY IN PARTICULAR, AND
PARTICULARLY SCIENCE IN
NEUROSCIENCE THAT SUGGESTS TO ME
WE SHOULD BE ANTICIPATING SOME
PROBLEMATIC USES AND
IMPLICATIONS OF THIS DATA.
EVEN IF WE IN THIS COMMUNITY SAY
THE HUNTERS SO PEOPLE LOGGED ON
HERE AREN'T GOING TO PURSUE
THESE THINGS.
OTHERS MIGHT AND WE NEED TO
PREPARE FOR THAT.
AND FINALLY I WANT TO THINK
ABOUT WHAT SOME PROACTIVE STEPS
MIGHT BE AND WE'RE GOING TO
THINK ABOUT WHAT WE CAN LEARN
FROM GENTLEMENN'TIC GENOMICS.
SO NEW ERA.
SUSAN MENTIONED THAT ALONG WITH
FRANCIS LORENZ AND JONATHAN, WE
ARE EXPLORING THE USE OF HIGHLY
PORTABLE IMAGING.
SHOUT OUT TO ALL OF OUR AMAZING
WORKING GROUP AND WE THINK I
LIKE TO THINK ON BEHALF OF THE
WORKING GROUP THESE NEW
TECHNOLOGIES ARE GOING TO CHANGE
THE FACE OF NEUROIMAGING.
THE BRAIN SCANNERS COMING OUT OF
THE HOSPITAL AND THE FACILITY
AND INTO THE FIELD ALLOWING YOU
TO SCAN ANYWHERE.
PARTICIPANTS ARE CONCERNEDED,
HOW LONG DOES IT TAKE.
TALKING ABOUT BEING
CLAUSTROPHOBIC.
IT WILL ALSO DEMOCRATIZE.
AND THIS COULD ALLOW FOR THE
SORT OFFICER POPULATION
NEUROSCIENCE AND BRAIN HEALTH
SCREENING THAT THEN WAS ALLUDED
TO ALREADY.
SO THERE ARE A LOT OF THINGS
COMING THAT WOULD SUGGEST A NEW
ERA OF IMAGING.
IF YOU WANT TO KNOW MORE, WE
TRACK ALL OF THOSE ARE AND ARE
EXCITING.
ALL RIGHT.
SO I'M REALLY EXCITED ABOUT
THAT, BUT I ALSO HAVE REAL
CONCERNS AND THESE CONCERNS
EMERGE OUT OF A LOOK-BACK AT
WHERE WE'VE COME FROM.
IT'S A WONDERFUL PIECE IF YOU
DON'T KNOW IT EXPLORING THIS
HISTORY.
THERE ARE OTHERS AS WELL, BUT
THIS IS A GREAT ONE AND I WANT
TO FLAG JUST THE END OF THIS
QUOTE.
I THINK IT'S WORTH A READING
THAT SHIRLEY SAYS DR. EVERHART
IT WAS AT THE SITE OF THE BRAIN
THAT DIFFERENCES BETWEEN WHITES
AND BLACKS WERE MAPPED OUT
INITIALLY.
EVERHART OFFERS A POSITIVE VIEW
OF OUR FUTURE THAT PERHAPS
NEUROSCIENCE IN ITS NEW METHODS
CAN ADDRESS THESE INEQUITIES,
BUT WE CAN'T IGNORE THAT THOSE
PREVIOUSLY QUOTE UNQUOTE DIVERSE
SAMPLES INCLUDING BLACK AND
WHITE BRAINS LEAD TO REALLY
PROBLEMATIC SCIENCE AND SOCIAL
INCLUSIONS AND THEY REACHED THE
PUBLIC VIEW.
SO I OFFER YOU ONE EXAMPLE, THE
PHILADELPHIA INQUIRE, THERE'S
THE HEADLINE, BEHIND THAT, THE
BEGINNING OF THE 20TH CENTURY,
THE SO-CALLED WORK SHOWING THE
DIFFERENCE BETWEEN BLACK AND
WHITE BRAINS.
THE SYSTEM IS REALLY
PROBLEMATIC.
I MENTION IT BECAUSE IT HAS
RAMIFICATIONS EVEN TO TODAY.
OVER 100 YEARS LATER, RACHEL
RICK IS WRITING ABOUT HER
EXPERIENCE GROWING UP IN CANADA
AND WROTE MY WHITE TEACHER
ATTEMPTED TO HOLD ME BACK
EXPLAINING TO MY MOTHER THAT MY
BLACK BRAIN WASN'T AS LARGE AS
MY WHITE CLASSMATES.
THIS STUFF STILL RESINATES AND
WE NEED TO BE AWARE OF IT.
IT'S NOT HARD TO IMAGINE A
NIGHTMARE SCENARIO WHERE SOMEONE
OUTSIDE OF THIS COMMUNITY BEGINS
TO LOOK FOR DIFFERENCES THAT
AREN'T THERE OR THIS
DISINFORMATION CAMPAIGN.
I THINK WE NEED TO INTERROGATE
WHAT MEAN BY DIVERSITY, HOW IS
THAT DIFFERENT AND WHEN AND HOW
DOES IN RACE AND THESE OTHER
DEMOGRAPHICS MATTER?
RIGHT NOW, IN THE PARALLEL
DISCUSSION THERE'S THE
DISCUSSION OF THE NEW BRAIN
CELL.
AND ONE OF THE NEW CHALLENGES
WILL BE TO USE POST MEDICAL
REPORT POST MORTEM HEALTHY
ADULT.
WHICH DEMOGRAPHICS WOULD MATTER?
THESE ARE IMPORTANT
CONVERSATIONS TO HAVE.
IT'S ALSO REALLY IMPORTANT I
THINK TO THINK ABOUT SECONDARY
ANALYSES.
SO UNDER NEW NIH BRAIN SHARING
POLICIES, THE DATA THAT'S
COLLECTED WILL BE PUBLICLY
AVAILABLE.
THAT MEANS THAT SOMEONE ELSE CAN
COME ALONG AND TAKE THESE MORE
DIVERSE DATA SETS AND THEY CAN
PUBLISH THAT AND IN SOCIAL MEDIA
IT CAN END UP ANYWHERE AND THESE
SECONDARY ANALYSES, I THINK
THERE'S JUST NO GUIDANCE AND
HERE'S AN EXAMPLE.
HERE'S A STUDY THAT WAS AND NOT
CAREFULLY MEASURING THE VARIABLE
THIS IS ABOUT.
SO I THINK WE NEED TO BE CAREFUL
AND SCIENTIFIC ABOUT THE WAY WE
MEASURE RACE, HISTORY, AN
SEGSTREE.
AND WE'RE GOING TO HEAR ABOUT
THAT FROM DR. CHO.
SO I THINK WE NEED TO BE REALLY
CAREFUL.
THERE IS SOME GUIDANCE EMERGING.
I PUT IT IN THE SLIDES WHERE
THEY TALK ABOUT SECONDARY DATA
ANALYSIS.
ONE, I REALLY WANT TO ECHO WHAT
DR. DOTSON AND DR. JONES SAID
ABOUT DEMOGRAPHICS AND THINKING
CAREFULLY ABOUT THAT.
OUR LAB DID THIS A COUPLE YEARS
BACK.
IT'S JUST NOT DONE AND BECAUSE
IT'S NOT DONE, THIS IS NEW
TERRITORY.
SO I'M GLAD THAT CONVERSATION'S
GOING, SECOND, THIS ISN'T THE
FIRST BODY OF RESEARCH, BUT WE
CAN LEARN A LOT FROM OTHER
GENTLE
GENOMICS.
FINALLY, WE NEED TO THINK MORE
CAREFULLY ABOUT ETH DISMISS TEA
OR ANYTHING IN BETWEEN IS GOING
TO IMPROVE THE DIVERSITY OF
SAMPLES IS GOING TO HEAR GREAT
SUGGESTIONS AND WE'RE GOING TO
HEAR MORE FROM DR. JACKSON AND
THIS IS GOING TO BE NEW TRAINING
AT THE PROFESSOR LEVEL AS WELL.
IT'S ONE THING TO ASPIRE TO DO
IT, IT'S ANOTHER TO ACTUALLY DO
IT.
SO STAY TUNED.
AND, WITH THAT, I WILL TURN IT
OVER TO DR. CHO.
>> THANKS, FRANCIS.
AND THANK YOU, SUSAN, BOTH OF
YOU FOR INVITING ME TO THIS
SYMPOSIUM.
SO I'D LIKE TO SHARE SOME OF THE
LESSONS I THINK OR I HOPE THE
FIELD OF GENOMICS HAS LEARNED
ABOUT IN RESEARCH.
AND THIS FIELD AS YOU ALL KNOW
HAS BEEN SORT OF LAUNCHED INTO
ITS CURRENT FORM BY THE
SEQUENCING OF THE HUMAN GENOME
WHICH REPRESENTED THE
IDENTIFICATION OF THE DNA THAT
ALL HUMANS SHARE.
BUT GENOMICS QUICKLY TURNED INTO
THE STUDY OF DIFFERENCE AND
VARIATIONS BETWEEN POPULATIONS.
NEXT SLIDE, PLEASE.
HOWEVER, GENOMICS HAS A
DIVERSITY PROBLEM LIKE OTHER
TYPES OF BIO MEDICAL RESEARCH.
FOR EXAMPLE, ALICE HOPEJOY AND
MARIA FULLERTON FOUND IN THE
WIDELY USED STUDY CATALOG,
THERE'S STILL A PREDOMINANCE OF
SAMPLES OF EUROPEAN ORIGIN WHICH
IS NOT REPRESENTED IN ALL GLOBAL
POPULATIONS OR EVEN THE U.S.
POPULATION AND THAT HAS NOT
CHANGED OVERTIME.
AND YOU CAN SEE HERE ON THE
SLIDE, THE PIE CHARTS SHOW THE
PREDOMINANCE OF SAMPLES OF
EUROPEAN ORIGIN AT 2009 ON THE
LEFT AND 2016 ON THE RIGHT.
NEXT SLIDE, PLEASE.
GENOMICS ALSO NOW RECOGNIZES
THAT THE LACK OF DIVERSITY AND
RESEARCH SAMPLES WHICH YOU ALSO
HEARD FROM DR. DOTSON AND JONES,
IN GENOMICS HAS REAL CLINICAL
IMPLICATIONS.
FOR EXAMPLE, PATIENTS WHOSE
SAMPLES WERE IDENTIFIED AS
BLACK, NATIVE AMERICAN, HISPANIC
OR MORE LIKELY THAN WHITE
PATIENTS TO HAVE A VARIANT OF
UNCERTAIN SIGNIFICANCE IN THEIR
GENOMES OR TO HAVE THEIR VARIANT
MISS CLASSIFIED LEADING TO LACK
OF FOLLOWUP CARE OR
INAPPROPRIATE CARE.
NEXT SLIDE, PLEASE.
CURRENT PROJECTS AIMEDED AT
STUDYING HUMAN DIVERSITY SUCH AS
THE ALL OF US REEFERS PROGRAM
HAVE DIVERSIFIED SAMPLES IN AN
ATTEMPT TO RECTIFY SOME OF THE
PROBLEMS WE'VE SEEN IN OTHER
RESEARCH.
HOWEVER, ATTEMPTS TO STUDY
RESEARCH SUCH AS THE GENOME
UNIVERSITY PROJECT WERE MET WITH
OPPOSITION AND EVEN CRIES OF
RACISM FROM INDIGENOUS PEOPLE
AND CONTINUE TO BE RIGHTLY
SKEPTICAL ABOUT HOW THEIR
PARTICIPATION IN THESE STUDIES
WOULD BENEFIT THEM.
NEXT SLIDE, PLEASE.
THE GENETIC STUDIES CARRIED OUT
BY SCIENTISTS AT THE UNIVERSITY
OF ARIZONA AND STANFORD
UNIVERSITY THAT LED TO A LAWSUIT
BY THE HAVASU TRIBE CONTRIBUTED
TO EVEN MORE WITHDRAW OF
POPULATIONS.
FOR EXAMPLE, THE NAVAJO NATION
PLACEDED A MORATORIUM IN 2002
AND THAT IS STILL ACTIVE TODAY.
IN A RECENT ARTICLE CALLED 'THE
ILLUSION OF INCLUSION' PUBLISHED
IN THE NEW ENGLAND JOURNAL OF
MEDICINE, THE BENEFIT OFFICER
RESEARCH FOR INDIGENOUS
COMMUNITIES AND THESE ARE
RECURRING UNRESOLVED ISSUES IN
GENETICS AND GENOMICS BUT THEY
ARE BY ALL MEANS NOT UNIQUE TO
THIS TYPE OF RESEARCH.
NEXT SLIDE, PLEASE.
ALTHOUGH MISTRUST OF RESEARCH
AND OF RESEARCHERS IS COMMONLY
CITED AS A BARRIER TO
PARTICIPATION OF
UNDERREPRESENTED GROUPS, THAT
ISN'T THE WHOLE STORY.
THE STUDY ON WHY AFRICAN
AMERICANS SAY NO, THE AUTHORS
ALSO FOUND OTHER RELEVANT
CONSIDERATIONS SUCH AS REQUIRING
UNCOMFORTABLE PROCEDURES.
YEARS AND ACCESS TO OTHER
GENOMICS.
ASPECTS OF THE RECRUITMENT
PROCESS THAT POSE SIGNIFICANT
BUT POTENTIALLY MODIFIED
ENROLLMENT BARRIERS.
NEXT SLIDE, PLEASE.
FOR EXAMPLE, REQUIRING
SIGNIFICANT TRAVEL AND HAVING
LESS FLEXIBLE SCHEDULES ARE ALL
FACTORS THAT INTRODUCE BIAS INTO
RECRUITMENT.
THE STUDY FOUND THAT RECRUITMENT
IN THE OUTPATIENT VERSUS THE
INPATIENT SETTING WHERE PEOPLE
HAVE FEWER OBLIGATIONS AND
THEY'RE ALREADY ON SITE COULD BE
A SIGNIFICANT SOURCE OF BIAS.
THE STUDY DESIGN COULD INFLUENCE
ENROLLMENT.
NEXT SLIDE, PLEASE.
ANOTHER STUDY DESIGN ISSUE THAT
FRANCIS TOUCHED ON HAS TO DO
WITH MEASUREMENTS.
IN ORDER TO MAKE OUR RESEARCH
FOR INCLUSIVE, IT'S IMPORTANT TO
UNDERSTAND THE ORIGINS AND
LIMITATIONS OF THE CATEGORIES WE
USE TO CLASSIFY AND MEASURE
DIVERSITY INTO THE SCIENCE WE DO
TODAY.
FOR EXAMPLE, HOW WE MEASURE RACE
IS MORALLY AND SCIENTIFICALLY
FLAWED.
IT WAS DEVELOPED BY EUROPEANS
NOT AS A WAY TO SIMPLY
CATEGORIZE HUMANS BY OBSERVED
DIFFERENCES, BUT AS A HIERARCHAL
ORDERING TO RECONCILE THE
PRACTICE OF SLAVERY WITH THE
NOTION OF ALL MEN PARTICULARLY
INCLUDING WOMEN ARE CREATED
EQUAL AS REFLECTED IN THIS QUOTE
FROM THOMAS JEFFERSON ON THE
RIGHT SIDE OF THIS SLIDE.
NEXT SLIDE, PLEASE.
SO, AS I WROTE ABOUT IN AN
ARTICLE NEARLY 20 YEARS AGO
ABOUT RACIAL AND ETHNIC
CATEGORIES IN BIO MEDICAL
RESEARCH, I NOTED THAT
GENETICIST CHARLES HEALY WROTE
ABOUT IT.
THIS HUMANA-PAREDES US TO
SCIENTIFICALLY AND MORALLY
FLAWED RESEARCH.
TUSKEGEE THAT WITH HELD
TREATMENT AND BECAUSE OF THE
COERCIVE ELEMENT OF
PARTICIPATION.
HOWEVER, THE STUDY WOULD NOT
HAVE BEEN CONDUCTED WITHOUT THE
ASSUMPTION THAT THE NATURAL
HISTORY OF SYPHILIS WAS SO
DIFFERENT IN BLACKS AND WHITES
THAT THEY WARRANTED AN
OBSERVATIONAL STUDY UNENCUMBERED
BY TREATMENT.
THESE ASSUMPTIONS ARE REFLECTIVE
TODAY IN STUDIES THAT SEEK
GENETIC CONTRIBUTIONS TO RACIAL
DIFFERENCES IN THE EFFECTS OF
DISEASES SUCH AS COVID WITHOUT
ATTENTION TO WELL-KNOWN SOCIAL
DETERMINANTS OF INFECTIOUS
DISEASE SUCH AS EXPORE SURE, THE
WORK ENVIRONMENT.
AND DISEASES.
NEXT SLIDE.
FURTHERMORE, I WANT TO GIVE A
SHOUT OUT TO TWO OF MY POST
FELLOWS AND OTHERS WHO ARE
RECENTLY TOGETHER PUBLISHED THIS
ARTICLE POINTING OUT HOW THE
IDEA OF RACIAL PURITY BECAUSE
THEIR DATA ARE REMOVED FROM
GENETIC ANALYSIS IN THE NAME OF
QUALITY CONTROL AND HERE I'M
REFERRING TO PEOPLE WHO ARE
CLASSIFIED AS BEING
MULTI-RACIAL.
SO THIS REMOVAL OF DATA IS NOT
ONLY AN OBVIOUS WAY TO
EXACERBATE HEALTH DISPARITIES,
IT REFLECTS LOGIC THAT'S
SCIENTIFICALLY FLAWED.
NEXT SLIDE, PLEASE.
SO, AT THIS POINT, I'M COMMONLY
MET WITH THE QUESTION, ARE YOU
SAYING THAT I SHOULDN'T USE RACE
OR ETHNICITY IN MY RESEARCH?
MY ANSWER IS NO, BUT IT COMES
WITH A LARGE "BUT".
NEXT SLIDE, PLEASE.
SO FIRST, THERE ARE MANY
RECOMMENDATIONS NOW ON USING AND
REPORTING RACE, ETHNICITY, AND
ANCESTRY IN BIO GENETIC RESEARCH
AND THESE HAVE BEEN RECENTLY
PUBLISHED.
MANY ARE APPLIED DIRECTLY TO
BRAIN INITIATIVE RESEARCH AND
I'VE INCLUDED A LIST OF THESE
RESOURCES AT THE END OF THIS
PRESENTATION WHICH I THINK YOU
CAN REFER TO IN THE RECORDED
VERSION OF THIS.
SO NEXT SLIDE, PLEASE.
THE KEY POINT THAT IS COMMON
BETWEEN THESE RECOMMENDATIONS IS
THAT THE USE OF RACE AND
ETHNICITY AS VARIABLES IN
RESEARCH MUST BE JUSTIFIED AND
THEY CAN BE USED TO MEASURE
SELF-IDENTIFIED OR PERCEIVED
SOCIAL IDENTITILY IN ORDER TO
MEASURE SOCIAL EFFECTS SUCH AS
RACISM.
HOWEVER, THERE'S BROAD CONSENSUS
NOW THEY SHOULD NOT BE USED WITH
THE ASSUMPTION THAT THEY REFLECT
NATURAL BIOLOGICAL GROUPING.
AND WE MUST USE THEM ONLY WHEN
WE BELIEVE THE POTENTIAL
BENEFITS OUTWEIGH THE POTENTIAL
HARMS NEVER FORGETTING THAT
RACIAL CATEGORIES ARE BORN OF
RACISM AND NOT SCIENTIFIC
CATEGORIES.
NEXT SLIDE, PLEASE.
SO I'LL JUST FINISH UP BY
SUMMARIZING SOME OF THE LESSONS
THAT I THINK WE HAVE LEARNED
FROM GENETIC AND GENOMICS FOR
IMPROVING DIVERSITY.
FIRST THAT WE FIRST HAVE TO
IDENTIFY THE GAPS IN DIVERSITY
RESEARCH AND BEWARE OF THE
IMPACTS OF UNDERSERVED
COMMUNITIES.
SECOND, WE SHOULD HONESTLY
ASSESS THE RESEARCH TO
UNDERREPRESENTED COMMUNITIES AND
NOT OVERSTATE THEM.
THIRD, WE CAN IDENTIFY WAYS THAT
STUDY DESIGN AND PROTOCOLS CAN
BIAS RECRUITMENT AND ACT TO
MINIMIZE THAT BIAS.
FOURTH, WE SHOULD UNDERSTAND THE
MORAL AND SCIENTIFIC LIMITATIONS
OF HOW WE MEASURE DIVERSITY.
AND FIFTH, WE SHOULD BE
TRANSPARENT ABOUT THESE
LIMITATIONS.
I'VE FOCUSED ON RACE AND
ETHNICITY, BUT THE SAME METHODS
CAN BE APPLIED TO OTHER TYPES OF
DIVERSITY REGARDING DISABILITY,
SEX AND GENDER, SOCIO ECONOMIC
STATUS, AND OTHERS THAT WE KNOW
TO BE STRONGLY ASSOCIATED WITH
HEALTH AND DISEASE AND I
PROBABLY DON'T HAVE TO TELL THIS
AUDIENCE HERE ABOUT THE WAYS IN
WHICH CLASSIFICATION OF
COGNITIVE FUNCTION AND OTHER
NEUROLOGICAL CONDITIONS ARE VERY
HOTLY CONTESTED AND FACE THE
SAME LIMITATIONS AS THE OTHER
CATEGORIES THAT HIVE LISTED
HERE.
SO I'LL JUST FINISH IT UP HERE
AND PASS IT ON TO DR. JACKSON.
THANK YOU.
>> ALL RIGHT.
THANK YOU SO MUCH, DR. CHO.
AND I AM BATTING CLEAN-UP HERE.
MY GOAL IS TO HELP YOU MAKE
SENSE OF EVERYTHING THAT YOU'VE
HEARD OVER THE LAST FEW
SESSIONS.
WE KNOW THAT RACISM AND MAYBE
THERE'S SOME SORT OF BIAS IN THE
WAY THAT WE ARE CATEGORIZING
VARIABLES OR POPULATIONS IN OUR
STUDIESES.
WE KNOW THERE'S A PROBLEM, WHAT
DO WE DO NOW?
MY GOAL IN THE LAST SEVEN AND A
HALF MINUTES IS TO HELP YOU
IDENTIFY SOME CONCRETE OPTIONS
IN TERMS OF WHAT YOU CAN DO
NEXT.
SO WE'VE GOT A LOT OF GREAT
ADVICE FROM ALL THE PRESENTERS.
I THINK DR. CHO'S ADVICE AT THE
END OF HER PRESENTATION IN
PARTICULAR IS VERY COGENT, BUT
IF YOU'RE STILL LOOKING FOR
CONCRETE ADVICE THAT IS WORKABLE
OR PRACTICABLE IN AN ONGOING
STUDY, HOPEFULLY, I'LL HAVE
SOMETHING THAT IS OF BENEFIT TO
YOU IN THIS PRESENTATION.
SO I WANTED TO START OFF BY
RECOGNIZING THAT THE PROBLEM OF
DIVERSE RECRUITMENT IS REALLY
SUB ASSUMED UNDER A BROADER
PROBLEM OF RECRUITMENT.
THE INSTANCE OF PATIENT
AVAILABILITY SHARPLY DECREASES
WHEN A CLINICAL TRIAL BEGINS AND
RETURNS TO ITS ORIGINAL LEVEL AS
SOON AS THE TRIAL IS COMPLETED.
BASICALLY TAKE HOWEVER MANY
PEOPLE CAN DO YOUR RESEARCH
STUDY AND DIVIDE IT BY TEN AND
THAT'S A CLOSER ESTIMATE OF WHO
WILL BE ABLE TO ENROLL.
THESE TWO LAWS WERE WRITTEN WITH
TONGUE AND CHEEK BUT RELATIVELY
SPEAKS TO THE ISSUE OF
RECRUITMENT BEING A TOUGH
CHALLENGE.
IN PARTICULAR WITH RESEARCH FROM
PRINCIPLE INVESTIGATORS HOW TO
ENGAGE AND RECRUIT EXPANDS MORE
GENERALLY.
OF THE PROBLEM IS, OF COURSE,
COMPOUNDED FOR RE167 POPULATIONS
THAT ARE NOT NORMALLY ENGAGED IN
HUMAN NEUROIMAGING OR HUMAN
RESEARCH IN GENERAL.
SO WHAT DOES THAT LOOK LIKE?
AND THIS SLIDE COMES FROM A
PAPER THAT WAS PUBLISHED A FEW
YEARS AGO BY CAREY GLEESON AND
COLLEAGUES.
SO WHAT WE SEE HERE IS A CAPLIN
MEYER CURVE LOOKING AT A
PROGRESSION OF INDIVIDUALS WHO
PRESENTED AT BASELINE WITH A
DIAGNOSIS OF MYO COGNITIVE
IMPAIRMENT AND AS YOU LOOK TO
THE RIGHT, THE PERCENTAGE OF
THAT GROUP THAT IS PROGRESSING
OR HAS PROGRESSED TO A STAGE OF
DMEN CHA.
EVEN THOUGH THIS IS COMING FROM
THE DATA SET, THIS IS ONE OF OUR
LARGEST SOURCES OF INFORMATION
THAT'S CONTRIBUTED TO EVERY
ALZHEIMER'S DISEASE RESEARCH
CENTER IN THE UNITED STATES.
WE STILL SEE SOMETHING THAT
DOESN'T MAKE A LOT OF SENSE.
ULTIMATELY, THAT BLACK
INDIVIDUALS ARE PROGRESSING OR
THAT GROUP IS PROGRESSING AT A
SLOWER RATE TO DEMENTIA RELATIVE
TO WHITES.
THIS BRINGS EVERYTHING WE KNOW
ABOUT RISK OF DEMENTIA AS IT IS
CONTEXTUALIZED BY RACE.
ULTIMATELY, YOU'RE NOT ALONE.
TO HELP YOU WALK THROUGH THE
REACTION YOU'RE LIKELY HAVING.
OF THERE'S NOTHING ABOUT THIS
THAT MAKES SENSE.
HOWEVER, IF WE THINK MORE
CAREFULLY ABOUT THIS DATA, WE'LL
UNDERSTAND THAT BY PAYING
ATTENTION TO OTHER SOCIAL OR
CATEGORICAL IDENTIFIERS PROVIDES
A LOT OF CONTEXT TO THIS
INFORMATION.
SO INSTEAD OF THINKING ABOUT
THESE TWO LINES AS WHITE PEOPLE
VERSUS BLACK PEOPLE AND THEN
WORKING TRYING TO INVERT OR
UNDERSTAND SOME ELEMENT OF RISK
THAT MIGHT BE CONDITIONED ON
RACE.
IN THIS PARTICULAR EXAMPLE, WE
CAN JUST THINK ABOUT WHO WAS
RECRUITED AND FROM ONE
PARTICULAR SETTING.
THE VAST MAJORITY OF WHITE
IDENTIFYING INDIVIDUALS WERE
RECRUITED FROM A MEMORY CLINIC
SETTING WHEREAS THE VAST
MAJORITY OF BLACK INDIVIDUALS
THEY WENT TO LOCAL SENIOR
CENTERS, LOCAL BLACK CHURCHES
AND SO ULTIMATELY, YOU'VE GOT A
GROUP OF RELATIVELY HIGH
PREVALENCE THAT'S BEING
RECRUITED FROM A LOW-RISK
SETTING AND BEING RECRUITED FROM
A HIGHER RISK SETTING.
ULTIMATELY, WHAT YOU'VE GOT HERE
IS AN APPLES AND ORANGES
PROBLEM.
SO IF WE'RE NOT CAREFUL, WE ARE
LIKELY TO RUN INTO THE SAME SET
OF CHALLENGES.
SO WHAT DO WE DO WHEN WE HAVE
THESE KINDS OF BARRIERS THAT
WE'RE TRYING TO FACE.
NOW, IT'S EASY TO SAY THAT THE
BARRIERS THAT CERTAIN MINORTIZED
RACIAL OR ETHNO RACIAL GROUPS
REPORT THE MOST COMMONLY ARE
RELATED TO TRANSPORTATION OR
SOME ELEMENT OF TRUST, BUT THIS
IS DATA FROM A STUDY THAT I DID
ON PARK KINSON'S DISEASE OVER
THE LAST COUPLE OF YEARS AND WE
FOUND THAT 230 INDIVIDUALS OUT
OF 500 WANTED TO PARTICIPATE,
BUT COULDN'T.
IF YOU LOOK AT THE BARRIERS
HERE, THE VAST MAJORITY OF THEM
WERE TIED TO LANGUAGE EQUITY AND
THE DIGITAL DIVIDE.
YOU CAN SEE THE TRUST ON HERE IS
REPORTED THIRD, BUT IT WAS ABOUT
4% OF INDIVIDUALS IN THIS
PARTICULAR BARRIER.
NOW, THERE MAY HAVE BEEN SOME
PARTICULAR REPORTING BIASES, BUT
ULTIMATELY, THE RECRUITMENT
BARRIERS AREN'T WHAT WE THINK
THEY ARE AND SO IT'S ALWAYS GOOD
TO ASK AND FIND OUT INTERVENING
LOCALLY.
INVESTIGATORS ARE NOT
NECESSARILY THE INDIVIDUALS WITH
THE MOST EXPERTISE.
SO IN TERMS OF LOOKING FOR THE
DEVICE THAT'S CONCRETE, HERE ARE
SOME THINGS THAT YOU CAN DO.
FIRST OF ALL, TRY TO SEPARATE.
IT'S EASY TO SAY BECAUSE WE'RE
BASED IN SAY THE CITY OF
ATLANTA, WE'VE GOT THIS MANY
BLACK OR AFRICAN AMERICAN
INDIVIDUALS THAT WE CAN REACH.
REALLY UNDERSTANDING WHAT THAT
LOOKS LIKE AS A BIAS SUBSET OF
YOUR OVERALL AREA AND THEN
TRYING TO RECRUIT ALL OF THOSE
INDIVIDUALS UNDERSTANDING WHAT
THOSE BARRIERS THAT YOU ARE
NECESSARILY DESIGNING.
POLICY OF WHO'S WILLING OR ABLE
TO SIGN UP FOR YOUR STUDY.
THE SECOND PIECE OF ADVICE IS TO
BE REALLY THOUGHTFUL AND OTHER
STUDIES.
MAYBE YOU HEARD THAT BLACK
INDIVIDUALS CAN BE RECRUITED
FROM A CHURCH OR FROM A
BARBERSHOP, BUT WITHOUT
NECESSARILY UNDERSTANDING WHAT
THOSE INTERVENTIONS LOOK LIKE
AND WHICH KINDS OF INDIVIDUALS
WERE TRYING TO BE RECRUITED, IT
MAY NOT NECESSARILY BE PRACTICAL
FOR YOUR PARTICULAR NEUROIMAGING
RESEARCH STUDY TO IMPLEMENT
THOSE PARTICULAR FIXES.
SO BE THOUGHTFUL BEFORE YOU TRY
TO BRING THOSE INTO FORCE.
I WOULD SAY THAT IF THERE'S ONE
PIECE OF ADVICE THAT I COULD
REALLY EMPHASIZE HERE IS THAT
MOST OF US HAVE A PROBLEM WITH
AWARENESS.
THAT IS TO SAY THAT THE AVERAGE
PERSON WALKING AROUND HAS NEVER
HEARD OF RESEARCH.
THEY DON'T KNOW WHAT CLINICAL
RESEARCH IS AND I GUARANTEE THEY
HAVE NO IDEA WHAT HUMAN
NEUROIMAGING RESEARCH IS.
AND SO TRYING TO RAISE THAT
AWARENESS NOT JUST WITHIN OUR
NEURORESEARCH CAMPUSES, BUT OUT
IN THE GENERAL WORLD BY HAVING A
SUBSTANTIAL SOCIAL MEDIA
PRESENCE MAY ALSO BE HELPFUL IN
HAD THIS PARTICULAR REGARD.
FEW WANT TO GET NEW PEOPLE IN
YOUR STUDY, AND YOU WANT THEM TO
BE COMPARABLE TO THE PEOPLE IN
YOUR STUDY, YOU HAVE TO
RECOGNIZE THAT NEW SORTS OF
SOLUTIONS ARE GOING TO BE
REQUIRED AND IT'S IMPORTANT TO
UNDERSTAND THE PRINCIPLE
EXPERTISE IS NOT GOING TO ALIGN
WITH OUR RESEARCH AND
ASSISTANCE.
THERE ARE OTHER FEW PIECES OF
ADVICE HERE THAT I HAVE RELATED
TO MAKING SURE THAT YOU'RE
LEVERAGING PLAIN LANGUAGE.
SO AIMING FOR THAT FIFTH GRADE
READING LEVEL IF AT ALL
POSSIBLE.
RECOGNIZING THERE ARE MULTIPLE
STAKEHOLDER GROUPS BESIDES THE
TEAM AND STUDY PARTICIPANTS AND
ENSURE YOU HAVE A STRONGER TURN
OF VALUE.
MAKING SURE ALL THE STAKEHOLDER
GROUPS THAT YOU'RE ENGAGING,
YOU'RE GIVING SOME SORT OF
SOCIAL BENEFIT WHETHER THAT IS
TIME, MONEY, EXPERTISE OR
INFORMATION AND ENSURING THAT
FROM MULTIPLE RETURNS OF VALUE
IS REALLY HELPFUL.
COMMUNITY IS GOING TO BE THE
MOST ELEGANT SOLUTION, BUT IT
ALWAYS TAKES A LOT OF TIME.
USUALLY ON AVERAGE, IT TAKES
ABOUT SEVEN YEARS TO GET THIS
RIGHT.
SO IF YOU DON'T HAVE SEVEN
YEARS, IT HELPS TO START NOW.
AND SO I JUST WANT TO WRAP UP
WITH A LITTLE BIT MORE IN TERMS
OF CONCRETE ADVICE.
SO THINK ABOUT YOUR SCHEDULING,
MAKING SURE THAT IF SOMEBODY
PRESENTS RESEARCH OPPORTUNITY
THAT THERE'S SOME OPPORTUNITY
FOR THEM TO PARTICIPATE EITHER
AS A PARTICIPANT OR A
PARTICIPANT AMBASSADOR.
ALL OF THESE ARE REALLY HELPFUL
TO ENSURE YOU ARE REACHING
ENTIRE NEIGHBORHOODS FROM THE
AREAS YOU'RE TRYING TO REACH.
IT'S HELPFUL TO DO A LOT OF
SOCIAL AND DIGITAL MEDIA, AND,
OF COURSE, AS WE ALL HAVE
EXHORTED YOU IS TO MAKE SURE
YOUR TEAM REMAINS AS DIVERSE AS
POSSIBLE OF ALL LEVELS AND WHAT
I WANT TO EMPHASIZE IS LOCALITY
IS ALSO INCREDIBLY IMPORTANT
TOO.
JUST WITH BECAUSE YOU'VE GOT A
BROWN FACE ON THE OTHER SIDE OF
THE COUNTRY DOESN'T MEAN YOU
HAVE THE SOCIAL.
LOOK FOR THAT COMBINATION OF
DIVERSITY AND LOCALITY TO GET
THIS RIGHT.
SO I'M GOING TO JUST WRAP UP
THERE.
I'VE GOT SOME OTHER EXAMPLESES,
BUT INSTEAD OF WALKING THROUGH
THOSE, I'LL SAVE THOSE FOR THE
Q&A.
FOR NOW, I WANT TO TAKE THINGS
BACK SO WE CAN HAVE A LITTLE BIT
OF A ROUND TABLE DISCUSSION
ABOUT SOME OF THE THINGS THAT
WE'VE HIGHLIGHTED HERE.
>> THANK YOU ALL THE FOR A GREAT
SET OF PRESENTATIONS AND WE'VE
GOT A WONDERFUL LIST OF
QUESTIONS THAT I WANT TO LAUNCH
IN THIS GROUP.
ONE THREAD THAT RUNS THROUGH
THESE QUESTIONS IS THAT WE HEARD
FROM VONETTA AND LENETTE ABOUT
DRAMATIC HEALTH DISPARITIES AND
THE FAILURE THAT YOU BOTH SEE IN
THE LITERATURES THAT YOU'RE
EXAMINING TO EVEN REPORT RACE
AND ETHNICITY.
BUT AT THE SAME TIME, WE'VE
HEARD FROM MILDRED THAT, YOU
KNOW, RACE ITSELF IS A
PROBLEMATIC CONCEPT AND IN
GENOMICS, YOU KNOW, THERE'S BEEN
A LOT OF WORK TO SEPARATE OUT
THE SOCIALLY DEFINED CATEGORY OF
RACE FROM THINGS LIKE ANCESTRY
INFORMATIVE MARKERS AND TO
CONSIDER AS MILDRED SAID, YOU
KNOW, WHEN AND HOW TO REPORT
RACIAL AND ETHNIC CATEGORIES.
SO I THOUGHT I'D START BY
COMBINING TWO QUESTIONS AND ASK
FIRST VONETTA AND THEN LENETTE,
HOW DO YOU THINK ABOUT THE
DEFINITION OF RACE AND ETHNICITY
IN YOUR WORK AND THE DANGERS OF
REPORTING IT?
VONETTA, DO YOU WANT TO KICK
OFF?
>> SURE.
THAT IS A HUGE QUESTION AND ONE
WITHOUT A SIMPLE ANSWER.
I'VE STRUGGLED WITH THAT BECAUSE
WE KNOW THAT THERE ARE SO MANY
LIMITATIONS OF WHAT WE CALL RACE
AND WE KNOW THAT IT'S A SOCIAL
CONSTRUCT.
WE ALSO KNOW THAT THE LABEL
TENDS TO COME ALONG WITH SOME OF
THOSE SOCIAL DETERMINANTS THAT
ARE IMPORTANT.
SO WE DO WANT TO CAPTURE THEM.
SO THE APPROACH THAT I'VE TAKEN
HAS BEEN ONE OF GATHERING
INFORMATION ABOUT SELF-REPORTED
RACE, BUT ALSO TRYING TO GATHER
INFORMATION ABOUT SOME OF THOSE
SOCIAL DETERMINANTS THAT ARE
REALLY WHAT I'M TRYING TO GET
AT, SO I'M TRYING TO LOOK AT
EDUCATIONAL QUALITY AND WHERE
THEY LIVE AND SOCIO ECONOMIC
STATUS IN VARIOUS WAYS.
I'VE STARTED TO GATHER MORE
INFORMATION FROM PARTICIPANTS
ABOUT RACE RELATED STRESS AND
DISCRIMINATION AND SOME OF THOSE
OTHER THINGS THAT WE KNOW ALL
KIND OF TIE INTO IT.
SO BY HAVING A MORE SORT OF
COMPREHENSIVE WAY OF LOOKING AT
OR MEASURING THE ACTUAL KIND OF
CONCEPTS THAT I AM TRYING TO GET
AT BY LOOKING AT RACE THAT FOR
THE RESEARCH THAT I DO IS ONE
WAY OF APPROACHING IT.
I KNOW THAT'S NOT A PERFECT
SOLUTION.
I DO THINK THAT IT'S GOING TO BE
AN ONGOING CHALLENGE FOR HOW WE
CAPTURE THESE IMPORTANT
VARIABLES, BUT I'VE TAKEN THE
STANCE THAT WE CAN AT LEAST
START WITH THE MOST OBVIOUS WAYS
OF TRYING TO COLLECT THINGS, BUT
THEN TRY TO COMPLEMENT THAT WITH
MORE DETAILED MEASUREMENTS.
>> LENETTE, DO YOU WANT TO
COMMENT?
>> YES.
SO, FIRST I'LL START BY SAYING I
COMPLETELY AGREE WITH
DR. DOTSON.
YOU KNOW, IT IS A SLIPPERY SLOPE
BECAUSE THERE ARE SOME ISSUES
WITH THIS VARIABLE THAT'S BEEN
CREATED.
RIGHT.
SOCIALLY CREATED.
I WILL SAY THAT, YOU KNOW, SO WE
HAVE TO AGREE THAT THERE IS A
UNIQUE EXPERIENCE OF THOSE WHO
WERE BROUGHT TO THIS COUNTRY AND
ENSLAVED, RIGHT.
AND SO I TALK ABOUT THAT WHEN I
ASK ABOUT WHO IS ENROLLING IN
THE STUDIES AND HOW DO THEY
SELF-IDENTIFY.
AND I THINK THIS -- THE
CHALLENGES THAT WE HAVE, THERE
IS A CURRENT LIKE WHAT CAN WE DO
RIGHT NOW AND TODAY AND RIGHT
NOW THAT IS THE WAY THAT THE OMB
IS DEFINING RACE AND THAT'S THE
WAY THAT WE AS SCIENTISTS HAVE
TO APPROACH THAT AND CONTINUE TO
ASSESS OF HOW WE CAN DO BETTER.
SO MY APPROACH HAS BEEN TO DO
WITH WHAT WE CURRENTLY HAVE IN
PLACE AND SO ASSESS IN THAT WAY
AND DESCRIBE IN THAT WAY AND
CONTINUE TO CHALLENGE WHAT WE
HAVE AVAILABLE AND WHAT WE CAN
CONTINUE TO LEARN.
>> SO, FRANCIS, AS YOU LISTEN TO
THIS, HOW ACUTE DO YOU THINK THE
DANGER IS OF PEOPLE, YOU KNOW
READING STUDIES THAT REPORT RACE
AND HAVING THAT ACTIVATE SOME OF
THESE HISTORICAL STEREOTYPES?
YOU KNOW, ARE YOU WORRIED ABOUT
HEALTH DISPARITIES RESEARCH
ACTUALLY REACTIVATING RACISM IN
NEUROSCIENCE?
>> WELL, FIRST OF ALL, I WANT TO
ECHO WHAT WAS JUST SAID THAT
SELF-REPORT IS REALLY IMPORTANT
AND POWERFUL.
SO IT'S NOT AND I HAD MENTIONED
SELF-REPORT AND MISINTERPRETED
-- WE SEE A HEADLINE THAT WE GOT
INVOLVED IN.
BUT I ALSO THINK THE SECONDARY
DATA ANALYSIS CONCERN IS A REAL
ONE.
SO FOLKS CAN GO HUNTING FOR
WHATEVER DIFFERENCES THEY WANT.
THESE ARE NOT THE ORIGINAL
PEOPLE WHO DID THE RESEARCH OR
CAREFULLY COLLECTED THE DATA AND
THERE ARE NO RULES FOR THAT
SECONDARY DATA ANALYSIS AND I
THINK I'M MOSTLY CONCERNED ABOUT
THE NEUROSCIENCE STUFF THAT GETS
BEYOND A CERTAIN TYPE OF
CELLULAR STRUCTURE OR A CERTAIN
TYPE OF AGAIN MAYBE LESS
SOCIALLY RELEVANT HEALTH AND I'M
MORE CONCERNED ABOUT THE SORTS
OF THINGS THAT NEUROSCIENTISTS
SPEND A LOT OF TIME THINKING
ABOUT.
WE'VE TALKED ABOUT LAW
NEUROSCIENCE ABOUT JUST THOSE
SOCIALLY LIGHTNING BOLT TYPES OF
ISSUES.
SO I REALLY DO THINK THAT'S A
SIGNIFICANT POTENTIAL ISSUE AND
THAT DISINFORMATION COULD FLOW
QUITE QUICKLY AND THAT WE NEED
TO BE PREPARED FOR THAT.
>> MILDRED, WE HAVE A LOT OF
QUESTIONS HERE AND MAYBE YOU CAN
REFLECT ON THIS FROM THE
GENOMICS DIALOGS ABOUT HOW
SHOULD RESEARCHERS THEN
DISTINGUISH BETWEEN BIOLOGICAL
DIFFERENCES VERSUS DIFFERENCES
THAT ARE A FUNCTION OF SOCIAL
DETERMINANTS VERSUS DIFFERENCES
THAT ARE ABOUT SOME KIND OF
INTERACTION BETWEEN THOSE
DOMAINS.
>> WELL, I THINK DR. DOTSON AND
JONES HAVE ADDRESSED THIS IN
THAT I THINK, YOU KNOW, THESE
ARE STANDARD KINDS OF VARIABLES
THAT WE CAN USE IN RESEARCH AND
SO YOU CAN'T ADDRESS THOSE BY
USING MEASURES.
YOU WANT TO ADDRESS THE THINGS
LIKE THE EFFECTS OF SOCIO
ECONOMICSES OR IF YOU WANT TO
ADDRESS THINGS LIKE RACISM BY
CLINICIANS OR THAT KIND OF
THING, YOU HAVE TO MEASURE THOSE
VARIABLES AND NOT USE SORT OF
SELF-REPORTED RACE AS A PROXY
MEASURE.
YOU JUST HAVE TO COLLECT THOSE
OTHER KINDS OF DATA AND MAYBE
THOSE ARE ENVIRONMENTAL
VARIABLES OR THINGS THAT ARE
DIFFICULT TO COLLECT, BUT YOU
CAN'T STUDY VARIABLES THAT YOU
DON'T, YOU KNOW, HAVE ACCESS TO
DATA OR YOU DON'T GET ACCESS TO
DATA FOR.
SO THERE'S THAT.
AND I WOULD ALSO CAUTION AGAINST
SORT OF RELYING TOO HEAVILY ON
SELF-REPORTED RACE AS A
VARIABLE.
THERE'S MANY STUDIES THAT HAVE
SHOWN HOW THEY'RE NOT WHAT YOU
THINK THEY ARE.
RIGHT.
AND SO USING THEM AS A PROXY FOR
EVEN SOCIO ECONOMIC OR OTHER
DETERMINANTS OF HEALTH IS ALSO
DANGEROUS.
FOR EXAMPLE, IN A LARGE STUDY OF
THE U.S. CENSUS FROM 20 YEARS
AGO PEOPLE WHO SAID THAT THEY
ARE -- THEY WERE EITHER OF
INDIAN OR FROM THE COUNTRY
INDIA, THIS NATIONALITY REPORTED
BEING WHITE, BLACK, OR ASIAN.
AND OTHER PEOPLE IN THEIR FAMILY
DID NOT REPORT THE SAME RACE AS
THE PEOPLE WHO FILLED OUT THE
ORIGINAL CENSUS FORM.
SO, YOU KNOW, SELF-REPORTS
SHOULD BE TAKEN WITH A HUGE
GRAIN OF SALT.
>> JONATHAN, I WONDER IF YOU CAN
HELP US THINK ABOUT THE
POTENTIAL ROLE OF COMMUNITY AND
PARTICIPANT ENGAGEMENT IN
ADDRESSING SOME OF THESE
QUESTIONS OF WHAT CATEGORIES TO
USE IN THE ANALYSIS AND HOW
THOSE CATEGORIES SHOULD BE
DEFINED.
>> YEAH.
SO THAT'S A BIG QUESTION AND I
THINK MY STANCE ON WHAT WE'VE
BEEN DISCUSSING SO FAR IS
PROBABLY A BIT STRONGER THAN
WHAT PEOPLE ARE SAYING HERE.
I DON'T THINK THAT RACE OR SOME
OF THESE RATHER ARBITRARY
CATEGORIES HAVE A PLACE IN OUR
SCIENCE.
I THINK THAT THEY ARE GREAT AS
POTENTIAL MARKERS FOR WHO'S
PARTICIPATING IN OUR SCIENCE,
BUT IN TERMS OF EXPLAINING
T-THEY'RE NOT PARTICULARLY
USEFUL.
THEY'RE USUALLY NOT WHAT YOU
THINK THEY ARE, YOU KNOW,
REDUCING INDIVIDUALS TO A SINGLE
SOCIAL IDENTIFIER EFFECTIVELY
TAKES ALL OF THAT VARIANCE OF
EXPOSURES AND WE'RE JUST
BASICALLY ROLLING IT UP AND
THROWING IT INTO OUR AND SO A
LOT OF PEOPLE ROLL THIS UP UNDER
THE BROAD UMBRELLA OF COMMUNITY
ENGAGEMENT AND I THINK WE CAN DO
THAT FOR PURPOSES OF DISCUSSION,
BUT WE HAVE TO RECOGNIZE THERE'S
SO MUCH VARIABILITY IN THOSE
COMMUNITY VOICES AND THE WAY WE
CAN INCORPORATE THEM THROUGH OUR
STUDIES.
THAT SAID, RECOGNIZING THAT
FOLKS WHO DO NOT HAVE FANCY
DEGREES OR A DOCTOR AT THE
BEGINNING OF THEIR TITLE,
RECOGNIZE THAT THOSE INDIVIDUALS
HAVE SUBSTANTIAL EXPERTISE IN
TERMS OF THE KINDS OF
POPULATIONS THAT WE'RE TRYING TO
ENGAGE IN OUR RESEARCH AND
MAKING SURE THAT WE INCORPORATE
THAT INTO OUR STUDY.
FOR EXAMPLE, I KNOW THAT WHEN WE
TALK ABOUT DIVERSITY IN
SCIENTIFIC SPACES, WE TEND TO
NARROW IN ON ETHNO RACIAL
DISPARITIES, BUT I REALLY WANT
TO RECOGNIZE THERE'S A LOT OF
DIVERSITY THAT'S OFTEN MISSING
FROM OUR SCIENCE.
I GREW UP ON A FARM IN EAST
TEXAS AND FOLKS THAT I GREW UP
WITH HAVE NEVER BEEN REPRESENTED
IN ANY KIND OF NEUROIMAGING OR
CLINICAL RESEARCH STUDIES AS
WELL.
WE DON'T HAVE GREAT WAYS OF
REPRESENTING OR DEFINE WAG IT
MEANS TO PARTICIPATE IF YOU ARE
A RURAL RESIDENT.
SO MAKING SURE THAT WE HAVE
SCIENCE THAT IS INCREASINGLY
DECENTRALIZED, MAKING SURE THAT
WE ARE BRINGING IN THOSE
COMMUNITY VOICES NOT JUST AS A
COMMUNITY ADVISORY BOARD, BUT
WORKING WITH THEM USING MODELS
LIKE THE COMMUNITY ENGAGEMENT
STUDIO OR EVEN LEVERAGING THE
COMMUNITY PI CATEGORY TO ENSURE
THAT WE ARE DEEPLY ENTRENCHED IN
LOCAL COMMUNITIES, IT'S A GREAT
WAY TO GET STARTEDE.
SO IF YOU REALLY WANT BLACK AND
AFRICAN AMERICAN PEOPLE FROM A
BLACK CHURCH, THEN GO TO A BLACK
CHURCH.
BUT IF YOU'RE LOOKING TO A
CHURCH TO RECRUIT BLACK PEOPLE,
THEN YOU'RE PUTTING THE CART
BEFORE THE HORSE AND YOU'RE
REALLY RESTRICTING THE RANGE OF
THE KINDS OF SOCIETIES OR GROUPS
THAT YOU'RE GOING TO REACH.
SO BE THOUGHTFUL ABOUT WHO IT IS
THAT YOU WANT AND MAKE SURE THAT
THE COMMUNITY, YOU KNOW, VOICES
THAT YOU REACH OUT TO REALLY
REPRESENT THE DEPTH OF THAT
PARTICULAR SOCIAL OR SOCIO
CULTURAL CATEGORY THAT WE'RE
TALKING ABOUT HERE.
SO THERE'S LOTS AND LOTS OF WAYS
TO DO THAT.
BUT IN TERMS OF CENTRAL, MONEY,
TIME, AND EXPERTISE IN EXCHANGE
FOR SOMEBODY'S WISDOM IS THE
BEST WAY TO GO.
HONESTFULLY, IT'S NOT
NEUROSCIENCE, IT'SIT'S PRETTY S.
THESE INDIVIDUALS YOU SHOULD
FIND A VERY READY AND WILLING
SET OF STAKEHOLDERS TO WORK WITH
ON ALL OF THESE INITIATIVES.
>> JONATHAN, WERE YOU SUGGESTING
THAT RACE SHOULD NOT BE USED IN
NEUROIMAGING RESEARCH?
>> YES.
I DON'T SEE WHY WE WOULD EVER
WANT TO USE RACE WHEN WE HAVE
LITERALLY HUNDREDS OF VARIABLES
THAT WOULD BE -- THAT ARE BETTER
VALIDATED AND MUCH MORE USEFUL
AND RELEVANT FOR OUR RESEARCH
STUDIES.
WHEN YOU STRIP AWAY MY SKIN, IT
HAS ABSOLUTELY NO BEARING ON MY
BRAIN.
THE THINGS THAT DO HAVE A
BEARING ON MY BRAIN ARE THE
SOCIAL AND CULTURAL EXPERIENCES
THAT I'VE HAD.
MAYBE SOME ELEMENT OF MY
GENETICS OR ANCESTRY.
A LOT OF THE SOCIAL AND DIETARY
EXPOSURES THAT I'VE HAD OVER THE
COURSE OF MY LIFE.
AND YOU CAN QUANTIFY AND
OPERATIONALIZE ALL OF THESE.
WHAT'S BETTER YET WHSHGS I'M
BUILDING A RESEARCH MODEL, YOU
CAN MAKE THEM INTERACT.
ULTIMATELY, REDUCING ME TO JUST
MY RACE RATHER THAN SOME
EXPRESSION OF MY EXPOSURES AND
VARIOUS MECHANISMS OF ACTION
AGAIN IS THROWING AWAY LOTS AND
LOTS OF VERY USEFUL VARIANTS
THAT COULD HELP US UNLOCK ONE OF
THESE MOST COMPLEX SYSTEMS THAT
WE KNOW OF IN THE ENTIRE
UNIVERSE.
SO RACE IS NOT GOING TO GET US
THERE.
ALL THESE OTHER VARIABLES,
THINKING ABOUT SOCIAL
DETERMINANTS, THINKING ABOUT
QUANTIFIABLE INTERSECTIONAL
ELEMENTS OF IDENTITY WILL GIVE
US THE VARIANTS THAT WE NEED TO
UNDERSTAND WHAT'S GOING ON IN
OUR BRAINS.
>> SO I WONDER WHETHER LISTENET
OR VONETTA, WHAT DO YOU THINK OF
THE PROPOSAL THAT WE NOT USE
RACE IN THIS RESEARCH?
YOU WERE BOTH POINTING TO IT A
FAILURE IN THE LITERATURE TO,
YOU KNOW, USE RACIAL CATEGORY
AND ETHNIC.
>> YEAH.
SO I DEFINITELY UNDERSTAND THAT
IDEA AND AS I MENTIONED WHEN I
FIRST ADDRESSED THIS, I TRY TO
BE COMPREHENSIVE IN WHAT I
GATHER AND SO I'M KIND OF GOING
A BIT OF BOTH GETTING
SELF-REPORTED RACE AS WELL AS
SOME OF THOSE OTHER MORE
IMPORTANT MEASURES THAT JONATHAN
WAS TALKING ABOUT.
SO FOR ME AS A CLINICIAN TO BE
HONEST, I THINK ABOUT THE
UTILITY OF BEING ABLE TO SPEAK
TO SOMEONE FROM CERTAIN GROUPS
AND SAY, HEY, THIS RESEARCH HAS
BEEN DONE AND PEOPLE WHO
IDENTIFY THE SAME AS YOU.
I THINK ABOUT THE UTILITY OF
BEING ABLE TO TARGET BASED ON
SELF-IDENTIFYING RACE FOR
RECRUITING PEOPLE FOR RESEARCH.
SO I DO HAVE A HESITATION TO DO
AWAY WITH IT.
I DO AGREE IT IS LESS USEFUL
FROM A PURE SCIENTIFIC
STANDPOINT.
I THINK WHAT IT COMES DOWN TO
AND THEN I'LL STOP AND NOT
RAMBLE TOO MUCH IS IT DEPENDS ON
YOUR FOCUS.
IF WE'RE TALKING ABOUT
SCIENTIFIC INTEGRITY, OBVIOUSLY,
I THINK RACE IS NOT THE WAY TO
GO.
WE'RE TALKING ABOUT REACHING
COMMUNITIES AND BEING ABLE TO
SHARE OUR INFORMATION TO GROUPS
OF PEOPLE WHERE THE RESEARCH
REPRESENTS THEM, I THINK IT'S
HARD TO SAY I HAVE THIS COMPLEX
MATRIX OF ALL THESE DIFFERENT
VARIABLES THAT REPRESENT YOU
VERSUS SAYING YOU'RE A BLACK
OLDER ADULT CONCERNED ABOUT
THEIR DISEASE AND MEMORY AND
THIS RESEARCH HAS BEEN DONE WHO
IDENTIFY THE SAME AS YOU AND
IT'S RELEVANT TO YOU.
SO IT'S SOMEWHERE IN THE MIDDLE
FOR ME.
>> I'LL JUST BRIEFLY ADD AGAIN I
THINK IT DEPENDS ON WHAT YOU'RE
TRYING TO DO.
SO IF YOU'RE TRYING TO DESCRIBE
FINDING BLACK -- DESCRIBING
BLACK AND WHITE DIFFERENCES AT
THIS POINT IS NOT GOING TO BE
HELPFUL.
THAT'S NOT GOING TO HELP MOVE
OUR SCIENCE FORWARD, BUT WHEN
YOU'RE IDENTIFYING THOSE THAT
HAVE BEEN HISTORICALLY BEEN LEFT
OUT OF RESEARCH, HOW ARE YOU
GOING TO IDENTIFY THEM.
SO I THINK THAT'S IMPORTANT TO
THINK ABOUT.
SO WHEN YOU ARE -- AFTER YOU
HAVE COLLECTED THIS RICH DATA OF
A VARIETY OF VARIABLES INCLUDING
RACE AND OTHER SOCIAL ECONOMIC
DETERMINANTS, HOW ARE YOU GOING
TO DESCRIBE YOUR FINDINGS?
AND I THINK THAT'S THE REALLY
IMPORTANT PART OF WHAT WE'RE
GIVING BACK TO THE SCIENTIFIC
COMMUNITY.
SO TO DESCRIBE, I DID A STUDY
WITH BLACK WOMEN WOULD BE
COMPLETELY MISSING A MARK
INSTEAD OF DESCRIBING SOME OF
THE OTHER THINGS THAT WE HAVE
COLLECTED.
RIGHT.
WE TALKED ABOUT AGE, SOCIO
ECONOMIC STATUS, WHERE THEY
LIVE, ENVIRONMENTAL THINGS, I
THINK THOSE THINGS ARE
IMPORTANT.
I THINK THAT'S A COMBINATION OF
AN APPROACH WE'RE TALKING ABOUT
TODAY.
SO WE HAVE TO START AT A CERTAIN
POINT.
BUT WHEN WE GET BACK TO THE
SCIENTIFIC COMMUNITY, SHOULD
DEFINITELY BE MORE RICH THAN
JUST DESCRIBING WHAT I FOUND IN
AFRICAN AMERICAN WOMEN ARE
DESCRIBING BLACK WHITE
DIFFERENCES.
>> THANK YOU.
THERE'S SOME QUESTIONS AND MAYBE
IN OUR REMAINING TIME, I'D LIKE
TO SORT OF SHIFT IN THIS
DIRECTION TO WHAT CAN BE DONE.
ONE QUESTION IS ASKING HOW
IMPORTANT IS IT TO ENHANCE THE
DIVERSITY OF RESEARCH TEAMS IN
NEUROIMAGING RESEARCH IN TERMS
OF BENEFITS TO THE STUDY,
RECRUITMENT, RETENTION,
UNDERSTANDING THE RESULTS
PRESENTING THEM.
AND HOW DO WE PROMOTE THE
DIVERSITY OF TEAMS?
MAYBE JONATHAN, DO YOU WANT TO
KICK OFF ON THAT?
>> SURE.
I WILL SAY A FEW THINGS THAT ARE
HELPFUL TO REMEMBER.
OFTEN TIMES WHEN WE TALK ABOUT
THE DIVERSITY OF OUR WORK FORCE,
THE IMMEDIATE PUSH BACK IS THE
PIPELINE.
JUST ISN'T DIVERSE ENOUGH.
WE NEED TO GO BACK TO
KINDERGARTENERS OR ZYGOTES AND
BUILD SOME PIPELINES TO ENSURE
WE WILL HAVE THE WORK WE NEED.
SURE, DO THAT, BUT THAT DOESN'T
GET YOU OFF THE HOOK NOW.
THERE'S TONS OF THINGS WE CAN DO
NOW.
THE NUMBER ONE THING WE CAN DO
NOW THAT STARTS BEFORE
CONCEPTION IS REALLY MAKING SURE
THAT WE BROADEN WHAT IT MEANS TO
HAVE PARTICIPATION ON OUR
RESEARCH STUDIES.
WHAT I MEAN WHEN I TALK ABOUT
CO-CREATION AND CO-DESIGN.
SO, AGAIN, IF WE ARE ONLY
PRIORITIZING THE EXPERTISE OF
INDIVIDUALS WITH ADVANCED
DEGREES, THEN, YES, WE'RE GOING
TO HAVE TO WAIT DECADES FOR THE
PIPELINE TO PRODUCE THE KINDS OF
INDIVIDUALS WE'RE LOOKING FOR
AND I WILL ARGUE IT'S STILL NOT
GOING TO BE QUITE RIGHT.
WHY DON'T YOU LOOK FOR LOCAL
EXPERTISE?
WHY DON'T YOU BRING ON LOCAL
HIGH SCHOOL VOICES, COLLEGE
VOICES, GRADUATES,
PROFESSIONALS, CHURCH LEADERS,
GREEK SOCIETY LEADERS, EVENTS OR
PLANNERS AND BRING THEM ON TO
OUR RESEARCH STUDIESES AS, YOU
KNOW, AS BEING INTEGRAL TO OUR
RESEARCH TEAMS.
NOW THESE ARE INDIVIDUALS THAT
CAN SERVE AS AMBASSADORS, THEY
CAN SERVE AS ADVOCATES AND THEY
CAN OPEN DOORS THAT ARE NOT
OTHERWISE POSSIBLE WE HAVE NOT
LOUGT OF IN SCIENTIFIC RESEARCH.
HOWEVER, IT IS NECESSARY.
WE HAVE VERY CONVINCINGLY
EXPLAINED AND LACK OF DIVERSION
AND INCLUSION IN OUR RESEARCH
THREATENSES ALL FOUR OF THE
MAJOR VALIDITIES THAT UNDERLINE
CAUSAL REASONING IN OUR CLINICAL
RESEARCH.
JUST BECAUSE THESE ARE
INDIVIDUALS THAT DON'T HAVE
FANCY DEGREES AT THE END OF
THEIR NAME, DOESN'T MEAN THERE'S
NOT A REALLY WELL-DESERVED SPOT
ON OUR STUDY TEAMS.
I WOULD SAY BROADEN YOUR MIND,
THINK OUTSIDE THE BOX IN TERMS
OF PARTICIPATION BENEFITS AND
DESIGN AND YOU'LL HAVE THE
DIVERSITY YOU'RE LOOKING FOR.
I'LL STOP THERE BECAUSE I THINK
THE REST OF THIS ESTEEMED PANEL
HAS PLENTY TO SAY ON THE TOPIC.
>> I THINK WE CAN LEARN FROM
GENOMICS.
THERE IS A LOT OF WRITING DONE
THERE THAT IS AVAILABLE FOR
STUDY.
>> GREAT, JONATHAN.
>> I THINK WE CAN TAKE A LACK OF
DIVERSITY REPRESENTATION IN OUR
STUDIES AS AN OMNIBUS BILL.
IT IS A GOOD SIGN THERE IS
SOMETHING AMISS IN OUR SCIENCE.
IT MAY NOT BE A MATTER OF
SELECTION.
SO TAKE A LACK OF DIVERSITY AND
RECOGNIZE THAT THAT IS ABERRANT
BEHAVIOR THAT SHOULD BE
MITIGATED.
WE IMMEDIATE TO NORMALIZE
DIVERSITY AND REPRESENTATION AT
EVERY LEVEL OF OUR RESEARCH.
WONDERFUL.
THANK YOU ALL FOR A GREAT PANEL
AND THANKS TO THE LISTENERS.
WONDERFUL QUESTIONS.
>>IT'S MY PLEASURE TO BE HERE
WITH YOU AND MY COLLEAGUES IN
THIS SYMPOSIUM.
IN THE FIRST PART OF THE
SYMPOSIUM WE'RE GOING TO BE
TALKING ABOUT THE BRAIN
NEUROETHICS AND THE WORK DOING
WITHIN OUR GUIDELINES.
SO I'LL DO A SHORT INTRODUCTION
ABOUT THE OVERALL-WORK WE'VE
BEEN DOING AND MY COLLEAGUE WILL
INTRODUCE WHAT THEY DO IN
MILITARY APPLICATION AND THEN
SEE A VIDEO OF MY COLLEAGUE
JACOB ROBINSON TALKING ABOUT THE
MEDICAL APPLICATIONS.
SO FIRST OF ALL WE'VE BEEN PART
OF THE WORK WE'VE BEEN DOING IS
TO FOSTER AN INTERDISCIPLINARY
CONVERSATION ON SOCIAL, CULTURAL
ISSUES AROUND THE USE AND
DEVELOPMENT OF TECHNOLOGY FOR
DIFFERENT DOMAIN APPLICATIONS.
FOR THOSE THAT ARE NOT AWARE OR
HAVEN'T HEARD ABOUT IGGG IT'S
ONE OF THE LARGEST ORGANIZATIONS
FOR ELECTRICAL ENGINEERS AND
HAVE DIFFERENT GROUPS AND IEEE
IS SUPPORTED BY DIFFERENT
SOCIETIES AS YOU CAN SEE IN THE
SLIDE.
THE POINT IS THERE'S A BIG
EMPHASIS ON SUPPORTING THE WORK
THAT HAPPENS IN THIS PARTICULAR
TECHNICAL SOCIETY.
THERE'S A COMMITTEE I HAVE THE
PRIVILEGE OF SHARING IN 2018 WE
HAD OUR FIRST SUBCOMMITTEE
MEETING AND WE WERE WORKING ON
CREATING GUIDELINES HOW TO
CREATE GUIDELINES FOR ENGINEERS.
WE'VE BEEN WORKING WITHIN THE
GUIDELINES.
AND I WANT TO HIGHLIGHT WE'RE
FORTUNATE TO HAVE A GROUP OF
INTERNATIONAL VOLUNTEER FOR THE
DIFFERENT WORKING GROUP I'LL
MENTION IN MINUTES.
EACH WORKING GROUP IS INTEGRATED
BY ADD LEAST ONE ETHICAL LEAD
AND AT LEAST ONE TECHNOLOGY
PERSON.
TRYING TO KEEP INTERDISCIPLINARY
WORK IN THE WORK WE DO.
FIRST I WANT TO TALK ABOUT WHY
WE THINK OUR WORK IS IMPORTANT.
THIS IS A COUPLE OTHER
GUIDELINES AND FRAMEWORKS
AROUND.
WE HAVE GUIDELINES FROM THE
OECD.
WE HAVE NIH GUIDELINES, THE IBI
GLOBAL NEUROETHICS HAVE
QUESTIONS TO GUIDE NEURO
TECHNOLOGIES.
WHY WOULD SOMETHING THAT COMES
FROM IEEE IS IMPORTANT?
FIRST I WANT TO PRESENT THIS
SLIDE FROM A QUESTION WE RAIN
OUR WORKSHOP TOGETHER WITH THE
INTERNATIONAL BRAIN INITIATIVE
AND SOME PARTICIPANTS FROM JAPAN
BRING NEUROETHICS.
WE ASKED WHAT DO YOU THINK -- DO
YOU THINK NEUROENGINEERS FACE
DIFFERENT ETHICAL ISSUES THAN
NEUROSCIENTISTS.
THERE'S A DIFSMALL NUMBER OF UNE
VERSUS YES AND A BIG DIFFERENCE
IN NO.
THERE'S DIFFERENT CONCERNS
CONSIDERING THE APPLICATION OF
TECHNOLOGY AND ANOTHER PERSON
SAID THE WEIGHT MIGHT BE
DIFFERENT AND ANOTHER PERSON
SAID A NEUROENGINEER NEEDS MORE
SOCIETAL IMPLICATIONS FOR
TECHNOLOGY TO COMMERCIAL
INDUSTRIAL PROCESSES.
THAT GIVES A SENSE THEY BE IN
THE UNIQUE ISSUES TO BE
DISCUSSED WITH GROUPS OF
NEUROENGINEERS OR DEVELOPERS.
THE SCOPE OF OUR FRAMEWORK HAS
BEEN TECHNOLOGIES AND DEVICES SO
WE DON'T TALK ABOUT
PHARMACEUTICALS OR GENETIC
ENGINEERING.
WE HOPE IT'S BEEN THE FOCUS AND
THE AIM IS NOT TO RECREATE WHAT
OTHERS HAVE SAID BUT HOW DO WE
BUILD AND CONTINUE MOVING THE
WORK OTHER GROUPS HAVE DONE
RELATIVE TO BRINGING TO THOSE
NOT AWARE OF THE GUIDELINES
BECAUSE IT'S NOT WITHIN THEIR
COMMUNITIES THEY GENERALLY
INTERACT WITH.
YOU CAN SEE THE MAJORITY OF
FOLKS SAID I'M AWARE OF THEM AND
THERE'S AWARENESS BUT NOT REALLY
USAGE.
A FEW SAY YES THEY'RE AWARE AND
USE IT AND JUST A FEW SAID NO,
THEY'RE NOT AWARE.
WE'RE TRYING TO UNDERSTAND WHY
THERE'S NOT LARGE ADOPTION
RAISING THE QUESTION OF DO WE
NEED ANOTHER FRAMEWORK.
MOTIVATIONS HAVE BEEN HAVE A
BROADER AUDIENCE AND DEVELOPERS
AND NEUROENGINEERS WORKING WITH
THE TECHNOLOGY.
AND CONTRIBUTE MOVING
TECHNOLOGIES INTO APPLICATIONS
BEYOND MEDICAL ONES AND THEIR
RESPONSIBLE MANNER.
SOME HAVE FOCUSES ON MORE
MEDICAL APPLICATIONS AND
GUIDELINES ARE TALKING TO A
LARGER HOST OF APPLICATIONS OF
NEUROTECHNOLOGY AND TO INCLUDE
MORE CULTURAL IMPLICATIONS OF
THE USE AND DEVELOPMENT OF NEWER
TECHNOLOGY.
HOW CAN WE ASSIGN IMPROVE
STEWARDSHIP AND THERE'S WAYS TO
DO THAT AND LOOKING AT WORK
SHOPS AND LOOKING AT GREATER
GUIDELINES AND USE CASES AND THE
LAST IS TO SAY THE NEXT THING
THAT WE'RE FOCUSSING ON AND
CREATING A SERIES OF SOCIO
TECHNICAL STANDARDS FOR TODAY
WE'LL FOCUS ON THE WORK WE'VE
DONE FOR THE GUIDELINES.
AS THE PRECEDENCE AND THERE'S
ENGAGEMENT IN CREATING AND
CREATING SOME GUIDELINES FOR
ARTIFICIAL INTELLIGENCE AND
LOOKING TO CREATE AND BE
PIONEERS ON STANDARDS OF
TECHNOLOGY FOCUSSED ON
TECHNOLOGY ISSUES.
YOU CAN SEE WE HAVE DIFFERENT
APPLICATIONS SO THOSE ARE THE
DIFFERENT ROSE.
WE HAVE MEDICAL, WELLNESS,
EDUCATION, MILITARY WORK AND
EMPLOYMENT AND SO ON AND THERE'S
DIFFERENT TECHNOLOGIES.
NEWER TECHNOLOGIES FOR RECORDING
AND SENSING AND THAT STIMULATE.
THE USERS CAN GET AND LOOK AT A
PARTICULAR CELL AND EXPLORE THE
ISSUES THAT ARE RAISED THERE.
AND LOOKING AT THE DIFFERENT
TECHNOLO
TECHNOLOGIES YOU CAN SEE A
DESCRIPTION FOR EACH OF THE
APPLICATIONS WE'RE WORKING ON
AND HAVE A LOOK AT THE
VOLUNTEERS AND SCOPE OF THE
LARGER PROJECT.
WE HAVE EXAMPLES OF TECHNOLOGIES
WE TALK ABOUT ETHICAL ISSUES.
FOR SOME WE HAVE FUNDING AND
TRANSLATIONAL PERSPECTIVES.
THE MEDICAL GROUP WILL FOCUS ON
THE ASPECT OF THE GUIDELINE.
HERE'S HOW WE DECIDED TO DIVIDE
THE ETHICAL ISSUES.
YOU CAN SEE SOME ARE OVERLAPPING
WITH OTHER GUIDELINES AND SOME
ARE MORE NOVEL AND AGAIN AS WE
PUBLISHED PARTS OF THIS WORK
WE'LL GET MORE FEEDBACK INTO HOW
RELEVANT IS THIS EDITION FOR THE
USERS.
THEN WE HAVE SECTIONS FOR THE
DISCUSSING LEGAL SOCIAL AND
CULTURAL IMPLICATIONS.
AND WITH THAT THIS IS JUST
INTRODUCTION OF THE OVER ALL
NEUROETHICS AND HOPEFULLY WITH
THE WORK OF RACIAL AND JACOB YOU
GET A MORE IN DEPTH LOOK AT
WHAT'S HAPPENING FOR EACH
DIFFERENT APPLICATIONS.
I WANT TO ACKNOWLEDGE ALL THE
AMAZING PEOPLE IN THE INITIATIVE
AND WITH THAT I'LL PASS IT TO
RACHEL.
>> BEAR WITH ME AS I HAVE LOST
MY VOICE.
I'LL DO MY BEST TO COMMUNICATE
CLEARLY HERE.
MILITARY OPERATORS ARE A SPECIAL
POPULATION THAT FACE UNIQUE
CHALLENGES WHICH JUSTIFIES THE
NEED FOR NEUROETHICS GUIDANCE
FOCUSSED ON MILITARY APPLICATION
IT IT'S A DOMAIN WITH
SIGNIFICANT HAZARDS AND
DIFFERENT CONSENT CONDITIONS AND
ALSO UNIQUE ENDS WHICH SOMETIMES
JUSTIFY USE IN WAYS THAT MAY NOT
BE MORALLY PALATABLE TO THE
GENERAL POPULATION.
OUR GREATER DEMANDS ON
OPERATORS' DECISION MAKING,
SITUATIONAL AWARENESS AND MENTAL
AND PHYSICAL PERFORMANCE WITH
RICH NOVEL TYPES PROVING USEFUL.
THE MILITARY IS SEEKING TO
IMPROVE COMBAT READINESS BY
FACILITATING COGNITIVE
PERFORMANCE INCREASING ERRORS,
IMPROVING EFFICIENCY AND
REDUCING TRADING TIME AND FASTER
SKILL ACQUISITION.
SO IN OTHER WORDS, THE
TECHNOLOGIES ARE BEING APPLIED
AS FORCE MULTIPLIERS.
THE OTHER MAJOR AREA IS TO
RESTORE WAR FIGHTER FUNCTION
WITH NEUROPROSTHETICS AND OTHER
HUMAN MACHINE INTERACTIONS.
AOF AS NEUROTECHNOLOGIES ADVANCE
THE USAGE IS LIKELY TO INCREASE
BEYOND THE MILITARY AS WELL.
EXAMPLES OF THIS IN THE PAST
INCLUDE VACCINATIONS, BLOOD
TRANSFUSIONS, ETCETERA.
WE NEED TO BE VERY THOUGHTFUL ON
NEURAL TECHNOLOGY USE IN THE
MILITARY BECAUSE IT'S LIKELY TO
CREATE COMPLEX ETHICAL DILEMMAS
OR CONFLICT OR ETHICAL ISSUES
STEM FROM DYNAMICS FROM THE
CHAIN OF DEMAND AND THERE'S
SHORT TERM OR LONG-TERM SAFETY
RISKS SUCH AS BIO COMPATIBILITY
AND REVERSIBILITY AND DIGITAL
BIO SECURITY AMONGST OTHERS.
OF MANY PROPOSED TECHNOLOGY
APPLICATIONS ARE IN THEIR
INFANCY, IT'S PRUDENT TO ADDRESS
THE ETHICAL, LEGAL, SOCIAL AND
CULTURAL IMPLICATIONS NOW BEFORE
WIDESPREAD ADOPTION INTO
MILITARY AND NATIONAL SECURITY
CONTEXTS.
THIS CAN'T JUST BE FOR ACADEMIC
PHILOSOPHERS.
NEUROETHICS HAS TO BE
IMPLEMENTED AND THIS INCLUDES
ENGINEERS WHO ARE INVOLVED IN
THE DESIGN.
SO WE'VE DEVELOPED A WORKING
DOCUMENT HOPEFULLY TO GUIDE
THESE ENGINEERS BY INTRODUCING
THE ETHICAL CONCEPTS BUT PERHAPS
EVEN MORE IMPORTANTLY
SUGGESTIONS FOR THE DESIGN
PROCESS.
SO THE NEUROETHICS FRAMEWORK
FOCUSES ON CATEGORIES FOR
ETHICAL QUESTIONS WHILE UNDER
VARIOUS HEADINGS.
FOR EXAMPLE, NOR C-- FOR THE
CATEGORY OF SAFETY, WELL BEING
AND RISK WHAT'S THE IMPACT TO
BRAIN STRUCTURE AND FUNCTION IN
THE SHORT TERM AND LONG TERM.
ALSO, IF IT'S AN IMPLANTATION
CAN IT BE REMOVED?
THESE ARE IMPORTANT BECAUSE
TECHNOLOGIES HAVE SHELF LIVES
WHICH BEGS US TO ASK WHEN WILL
THIS BE OBSOLETE SO REARE --
ARE WE CREATING SINGLE-USE
PEOPLE AND IS IT REVERSIBLE IN
THE CASE THE TECHNOLOGY BECOMES
OBSOLETE.
THE CATEGORY OF AUTHORITY AND
POWER IS PARTICULARLY IMPORTANT
IN THE MILITARY.
THE CONSTRUCT OF CONSENT IS NOT
REALLY OPERABLE IN THE CHAIN OF
COMMAND OUTSIDE OF A RESEARCH
CONTEXT AND MILITARY OPERATORS
DO NOT NECESSARILY HAVE THE
ABILITY TO REFUSE ALL
NON-EXPERIMENTAL MEDICAL
PROCEDURES.
AND MILITARY COMMANDERS DO HAVE
THE LEGAL RIGHT TO REQUIRE
PROCEDURES LIKE VACCINATION.
2021 WITH COVID VACCINES IS AN
EXCELLENT PREVIEW OF SITUATIONS
THAT CAN ARISE AND THERE COULD
BE A TIME WHERE READINESS FOR
COMBAT MAY BE CONSIDERED TO
ENTAIL THINGS WITH PREPAREDNESS
OVERCOME FATIGUE OR ACCELERATE
SKILL ACQUISITION.
THESE THINGS COULD BE MANDATE
AND THERE COULD BE ISSUES
INVOLVING CHAIN OF COMMAND
RELATED TO AUTHORITIES OR YOUNG
ADULTS WITH STILL DEVELOPING
BRAINS.
PERSONAL AGENCY MAY BE
COMPROMISED AND RISK TAKING
PREDILECTION IN THE INTEREST OF
FEARS.
THE IDEA OF PEAK PERFORMANCE
DESPITE HARM IS WHAT WE'VE
OBSERVED WITH LEAD OPERATORS
ANTICIPATING HAVING DO SO HERE
AND LOOKING AT JUSTICE AND
FAIRNESS IN THE MILITARY CONTEXT
AND WANT TO CONSIDER THINGS LIKE
PROMOTION OPPORTUNITIES BIASSED.
IF THESE TECHNOLOGIES ARE
IMPORTANT TO STRATEGIC SUCCESS
IN THE VARIOUS SERVICES AND ARE
OPERATORS MORE LIKELY TO BE
PROMOTED AND IF SO ARE THERE
DISPROPORTIONAT BURDENS AND
RISKS AND ARE THERE INCENTIVES
FOR PEOPLE TO BECOME OPERATORS
WITH UNACCEPTABLE RISKS AND
THINK ABOUT TECHNOLOGY AND WHAT
IS IN THE MILITARY MAY NOT BE
ACCEPTEDLY JUST IN THE GENERAL
POPULATION.
SO REGARDING THE CATEGORY OF
AGENCY AND IDENTITY, THE AGENCY
INTACT AND IS THERE A
DISTINCTION WHAT THE MACHINE
LEARNING COMPONENT COULD BE
COMBINED IN THE TECH IS DOING.
THAT COULD HAVE PARTICULAR
CONSEQUENCE FOR THINGS LIKE
MORAL INJURY AND CHANGING A
PERSON'S PERCEPTION OF
THEMSELVES AND THEIR HUMANITY AS
WELL AS TECHNOLOGY THAT
INTERFERES WITH OR OBSCURES THE
LOCUS MUCH DECISION MAKE ORG
CAUSES AN OPERATOR TO BEHAVE
DIFFERENTLY THAN MAY NORMALLY DO
HAS TO CONFRONT LEGALITY AND
CULPAC
CULPABLITY AND IS THIS PROTECTED
FROM MISUSE AND HACKING OR
SHARING?
HOW'S IT BEING STORED AND AS THE
IMPORTANT FOR ENGINEERS TO
CONSIDER FROM THE GROUND UP.
THE WAY DATA IS HANDLED HAS TO
BE CONSIDERED FROM THE BOTTOM OF
THE INFRASTRUCTURE AND OFTEN
DIFFICULT TO CHANGE ONCE YOU GET
TO A CERTAIN LEVEL OF
DEVELOPMENT.
IN MENTIONING THE NEED TO
CONSIDER THE ISSUES DURING THE
DESIGN PROCESS THE QUESTION
BECOMES HOW DO WE DO THIS?
OUR DOCUMENT INTRODUCES A
NEUROETHIC FRAMEWORK WHICH SAY
TOOL KIT FOR RISK ASSESSMENT AND
METHODOLOGY FOR THE DESIGN
PROCESS.
WE BRIEFLY INTRODUCED PROCEDURE
WHICH IS OPERATIONAL AND
NEUROETHICAL RISK ANALYSIS AND
MITIGATION PARADIGM DEVELOPED BY
JORDANO AND COLLEAGUES TO
ACCOMPLISH FOUR BASIC TASKS.
WE WANT TO BE ABLE TO ASSESS THE
CAPABILITIES AND GAPS OF THE
CURRENT TECHNOLOGIES.
WE WANT TO DEFINE THE DOMAINS
THE NEW TECHNOLOGIES IMPACT SUCH
AS HEALTH CARE AND WELLNESS AND
COMMUNICATION AND ENTERTAINMENT
AND POLITICS AND THE LEGAL
SYSTEM AND SUGGEST PROCEDURE TO
QUANTITATIVELY AND QUALITATIVELY
LOOK AT BURDENS AND RISK AND
PROMPT USERS TO ADDRESS WHAT CAN
AND SHOULD BE DONE TO ALLEVIATE
HARM MAXIMIZING BENEFITS.
AS WE DO THIS ONE THING IN THE
MILITARY GROUP WE PROPOSED AND
SO MUCH OF OUR DOMAIN IS DEALING
WITH THINGS THAT ARE COGNITIVE
ENHANCEMENTS AND PRINCIPLES DUE
TO THE POTENTIAL OF TECHNOLOGIES
DEFINING HOW HUMANS INTERACT
WITH ONE ANOTHER AND GROUP AND
WE REFERRED TO A GROUP ON
GLOBALIZING NEUROETHICS WHERE IN
THE PRINCIPLE OF AUTONOMY
BECOMES THE RIGHT TO
SELF-CREATIVITY AND HUMANS ARE
ENHANCED TODAY DON'T BECOME
OBSOLETE TOMORROW.
BENEFICENCE BECOMES EMPOWERMENT
WHICH IS LESS PATERNALISTIC AND
CITIZENSHIP PRESERVING AN
INDIVIDUAL'S CAPACITY TO
PARTICIPATE IN THEIR CIVIC
SOCIETY.
THIS FIGURE GIVES AN IDEA HOW ON
RAMP CAN BE IMPLEMENTED.
WE'LL START WITH TECHNOLOGY AND
LOOK AT PARTICULAR TECHNOLOGIES
AND AFTER WE CONSIDER THE
VARIOUS ETHICAL QUESTIONS SUCH
AS EXCITE AND WELL BEING,
AUTHORITY TO EMPOWER AND AGENCY
AND AUTHORITY, ETCETERA, WE WANT
TO TALK ABOUT HOW IT SHOULD
INFORM THE TECHNOLOGY AND THE
GREEN BOX HAS AN ITERATIVE LOOP.
THERE'S TWO FUNCTIONS WE WANT TO
DO WE WANT TO LOOK AT THE
STRATEGY NEEDS AND THE
TECHNOLOGIES BEING TASKED WITH
BEING ABLE TO ACCOMPLISH AND IS
THERE THE CAPACITY FOR THE NEEDS
IN THE TECHNOLOGY AS IT'S BEING
DEVELOPED AND THEN AS THERE'S
SELECTING THE OPTIMAL
CAPABILITIES TO INCLUDE IN THAT
TECHNOLOGY, THEY NEED TO ENGAGE
WITH THE SOCIETAL SCENARIOS THAT
COULD HAPPEN.
THEY NEED TO FIRST IDENTIFY THE
SOCIETAL DOMAINS IN WHICH THE
TECHNOLOGY MAY BE
OPERATIONALIZED TO PREDICT AND
DEFINE POTENTIAL SCENARIOS THAT
COULD BE PROBLEMATIC AND THEN TO
ANTICIPATE AND IN MANY CASES
INFORM REGULATORY COMPLIANCE
REQUIREMENTS AS THEY'RE BEING
WRITTEN AND DEVELOPMENT.
THE COMMUNITIES CAN ITERATIVELY
INTERACT AND LOOK AT THE
TECHNOLOGY AND REASSESS IT IN
THE USE CONTEXT AND THE
SCENARIOS THAT ARE GOING TO BE
DEFINED AND WE CAN ADAPT THE
DESIGN AND ENGAGE STAGES OF THE
LOOP.
OVER ALL, OUR HOPE WITH THE
DOCUMENT IS WE'LL NOT ONLY BE
ABLE TO WRAP OUR HEADS AND BE
INTRODUCED TO THE ETHICAL ISSUES
BUT WE PRESENT IT IN A WAY
THAT'S OPERATIONALIZABLE AND
TAKE MORE ACTION DURING DESIGN
THAN TO SIMPLY BEG THE QUESTION.
WITH THAT I'LL PASS THE MIC TO
MY COLLEAGUE DR. ROBINSON.
>> HI, EVERYBODY.
MY APOLOGIES FOR NOT BEING ABLE
TO JOIN LIVE BUT I'M THANKFUL TO
PRESENT THE WORK WE'RE DOING AND
TO PRESENT IN THE NEUROETHICS
FRAMEWORK AND THANKS FOR SHARING
THE OVER ALL FRAMEWORK AND
MILITARY WORKING GROUP.
I'M HERE TO SHARE SOME WORK IN
THE MEDICAL WORKING GROUP.
MY GOAL IS TO TELL YOU ABOUT
SOME CONCEPTS.
I'M REPRESENTING THE
COLLABORATIVE WORK OF A LOT OF
FOLKS I'LL MENTION AT THE END
AND HOPING TO BE ABLE TO SHARE
WITH YOU HOW I THINK YOU MAY BE
ABLE TO BENEFIT FROM THE
DOCUMENT WE'RE PUTTING TOGETHER,
HOW TO APPROACH IT AND
IMPORTANTLY TO TRY TO SEE IF
THERE'S INTEREST IN HELPING OUT
IN AREAS WHERE WE NEED WE NEED
FEEDBACK.
AS LAURA MENTIONED THE DOCUMENT
IS AROUND ALL THE APPLICATION
AREAS.
THESE ARE SAFETY, WELL BEING AND
RISK, POWER, JUSTICE, IDENTITY,
SURVEILLANCE AND POLICY AND
THAT'S HOW I DIVIDED UP THE
ISSUES.
NOW, WHEN WE APPLY THESE TO THE
MEDICAL WORK GROUP SOME COME
INTO CLEARER FOCUS.
I'LL TELL YOU WHAT WE SPENT MOST
THE TIME DISCUSSING.
IN SAFETY, WELL BEING AND RISK
ONE THING THAT'S COME UP IS
DEFINING POTENTIAL HARM FROM
BIOMEDICAL DEVICES THAT INTERACT
WITH THE BRAIN AND NERVOUS
SYSTEM.
I'LL GET INTO THOSE ON THE NEXT
SLIDE.
WHEN IT COMES TO AUTHORITY AND
POWER, ONE OF THE MAIN
CONSIDERATIONS FOR THE MEDICAL
WORKING GROUP IS HOW THE IDEAS
PERTAIN TO THE INFORMED CONSENT.
ASKING FOR CONSENT AND HOW IT'S
PRESENTED, ETCETERA.
WHEN IT COMES TO JUSTICE AND
FAIRNESS, MEDICAL DEVICES
PARTICULARLY CLASS 3 IMPLANTABLE
DEVICES GO THROUGH EXTENSIVE
TESTING AND VALIDATION AND AS A
RESULT THE COST OF DEVELOPMENT
IS QUITE HIGH.
THIS LEADS TO HIGH PURCHASE
PRICE.
FOR FOLKS WITH INSURANCE
SOMETIMES IT'S COVERED AND
SOMETIMES NOT IN ITS ENTIRETY.
AS A RESULT IT RELATES TO
ACCESS.
THESE DEVICES MAY NOT BE
ACCESSIBLE TO THOSE WITHOUT
PRIVATE INSURANCE OR IN SOME
CASES DEVICES AREN'T COVERED AT
ALL AND SECONDLY WHEN WE THINK
ABOUT COUNTRIES WHERE THEY MAY
NOT HAVE HIGH COST MEDICAL
DEVICES THERE'S A QUESTION OF
WHETHER OR NOT THE SAME TYPES OF
TECHNOLOGIES WILL BE ACCESSIBLE
TO FOLKS WITH LESSER MEANS.
IN THE CASE OF AGENCY AND
IDENTITY ONE THING THAT'S COME
UP WITH THE MEDICAL WORKING
GROUP IS THESE TECHNOLOGIES
BECAUSE THEY ADDRESS A MEDICAL
NEED CAN HAVE A HIGHER LEVEL OF
INVASIVENESS EVEN TO THE POINT
OF SURGICAL RESECTION OR GENE
THERAPIES.
PERHAPS DELIVERING OPTOGENETIC
PROTEINS AND THE IDEA OF GENETIC
MUTATION IS OUTSIDE THE OTHER
GROUPS LIKE THE ENTERTAINMENT
GROUP BUT FOR THE MEDICAL
WORKING GROUP, THERE ARE INDEED
CLINICAL TRIALS FOR THINGS LIKE
OPTOGENETIC CONSTRUCTS.
THIS CREATES A DIFFERENT TYPE OF
REVERSIBILITY THAN THE CASE FOR
OTHER TYPES OF TECHNOLOGIES.
FOR EXAMPLE, HOW DO WE TURN OFF
THE CONSTRUCT ANDAGE WE THINK OF
THE TECHNOLOGIES AS LIVING ON
THE SPECTRUM OF REVERSIBILITY
AND SOME LEVEL PERHAPS NOT
COMPLETE AND SIMILAR THINGS LIKE
ENDOVASCULAR ARRAYS FOR
SIMULATING AND RECORDING.
DIFFICULT TO REMOVE THE
ELECTRODES FROM THE STINT BUT
PERHAPS YOU CAN TURN OFF THE
I.P.G. OR PERHAPS THAT COULD BE
REMOVED OR LEAVE THE STINT IN
PLACE.
YOU'RE NOT COMPLETELY REMOVING
THE ADVICE AND CAN YOU SATISFY
THE NEEDS AS IT RELATES TO
AGENCY AND IDENTITY.
YOU STILL MAY HAVE THE DEVICE
IMPLANTED IN THE BRAIN BUT IS IT
TURNED OFF ENOUGH TO GIVE BACK
THE SENSE OF SELF.
SIMILARLY WHEN IT COMES TO
SURVEILLANCE AND PRIVACY PLAYS A
BIG ROLE.
MANY WILL CAPTURE NEURAL DATA
WITH HIGHER FIDELITY WITH
EXTERNAL WEARABLE DEVICES AND
THE QUESTION COMES UP WHO OWNS
IT AND WHO BENEFITS AND HOW DO
WE ENSURE THE DEVICES ARE SAFE.
CRITICAL FOR DEVICES MAY BE LIFE
SAVING SO CYBER SECURITY IS OF
PARAMOUNT IMPORTANCE.
AS LAURA EXPLAINED THE WAY WE
THINK OF APPROACHING THE
DOCUMENT CAN BE SEEN BY
ENGINEERS LIKE BUILDING A
DOCUMENT THEY CAN APPROACH.
AND WITH THAT IN MIND, WE
THOUGHT TECHNOLOGIES AND
THINKING ABOUT WHAT DO THEY DO
AND KNOWING WHAT DOES WHAT
ISSUES SHOULD I BE CONCERNED
ABOUT.
SO WE HAD FOUR CATEGORIES AND WE
HIGHLIGHTED ISSUES.
FOR RECORDING AND SENSING THE
IDEA OF DATA OWNERSHIP IS
IMPORTANT AND PULLING DATA FROM
THE DEVICES, CYBER SECURITY
BECOMES AN ISSUE BECAUSE MAYBE
IT CAN TELL YOU ABOUT YOU ARE
AND YOUR CONDITIONS WHICH ARE
SENSITIVE ISSUES FOR PATIENTS
WITH THESE DEVICES AND CYBER
SECURITY ADDRESSES SIMULATING
AND ACTUATING AND WE'RE TALKING
ABOUT DEVICES THAT STIMULATE
ACTIVITY IN THE BRAIN SO CYBER
SECURITY CAN BE IMPORTANT
BECAUSE THEY CAN CAUSE HARM IF
THEY WERE TO BE TUNED TO RANGES
THAT COULD PERHAPS DAMAGE THE
BRAIN OR PERIPHERAL NERVOUS
SYSTEM AND FOR SOME THAT ACTUATE
THEY CHANGE BEHAVIOR AND THAT
TOUCHES ON AUTONOMY AND AGENCY.
AM I STILL WHO I AM GIVEN
DEVICES MAY CHANGE MY BEHAVIOR
BASED ON THE PROGRAMMING.
SO THE MUCH OF IN ISSUE WITH
RECORDING AND SENSING.
THESE TECHNOLOGIES ALSO MUST BE
CONSIDER ISSUES LIKE
SELF-RESOLUTION AND THEY
REGULATE MOOD ENSURING THE USER
CAN'T MISUSE THEM AND CAN BE
ADDICTIVE TO THE THERAPIES WE
ARE HOPING TO PROVIDE.
IN THE CASE OF CLOSED-LOOP
SYSTEM CYBER SECURITY BECOMES
NUANCED.
THESE ARE SYSTEMS THAT RECORD
AND STIMULATE BUT THE STIMULATE
IS BASED ON RECORDING BASED ON
THE ALGORITHM ON THE DEVICE
ITSELF OR WEARABLE OR EXTERNAL.
IN THIS CASE CYBER SECURITY
BECOMES IMPORTANT BECAUSE
ALGORITHMS CAN CHANGE.
STIMULATION AS IT RELATES TO
SENSING COULD BE MANIPULATED BY
THIRD PARTIES AS A WAY TO MISUSE
THEM.
AND THE PRIVACY OF THE DATA IS
ALSO IMPORTANT AS IT IS FOR
RECORDING AND SENSING.
IN THE CASE OF DIRECT AND
PHYSIOLOGICAL MODULATION I
MENTIONED REVERSIBILITY AND
LONG-TERM EFFECTS AND WE TALK
ABOUT THINGS THAT MAY NOT BE
ABLE TO BE FULLY TURNED OFF AND
CULTURAL IMPLICATIONS BECOME
IMPORTANT.
THE IDEA OF REVERSIBILITY MAY BE
DIFFERENT DEPENDING ON THE
CULTURAL BACKGROUND.
THIS BRINGS ME TO AN AREA WHERE
I THINK WE HAVE NEED.
A LOT OF IN THE WORKING GROUP
ARE BASED IN THE U.S. AND EUROPE
AND HAVE PRIMARILY A WESTERN
PERSPECTIVE AND WHAT WE CONSIDER
TO BE THE KEY ISSUES ARE IN THE
BACKGROUND.
WE'D LIKE TO HAVE EXAMPLES OF
NON-U.S. CULTURAL IMPLICATIONS
AND UNDERSTANDING WHERE SOCIAL
STRUCTURES AND ORGANIZATIONS
NEED TO BE BROUGHT IN TO HAVE
THEIR PERSPECTIVE HEARD TO FLUSH
OUT THE TOTALITY OF
CONSIDERATIONS AND FINALLY WE
WANT TO BE ABLE TO INCLUDE FDA
AND THE EUROPEAN UNION IN OUR
REGULATORY FRAMEWORK TO
UNDERSTAND HOW THE REGULATORY
BODY IN THE OTHER NATIONS DIFFER
FROM WHAT WE HAVE IN THE U.S.
AND IN EUROPE AND UNDERSTAND
THEY'RE CAPTURED KWHIN WHAT WE E
IS A DOCUMENT TO BE CONSIDERED
GLOBALLY CONSIDERED IN
NEUROTECHNOLOGIES IN
SPECIFICALLY MEDICAL
APPLICATIONS.
WE'RE WORKING ON EXAMPLES OF HOW
THE FRAMEWORK CAN BE USED AS IT
RELATES TO SPECIFIC
NEUROTECHNOLOGY.
WORKING THROUGH CASE STUDIES.
ONE IS A CLOSED LOOP INTERFACE
INSPIRED WHERE ONE DEEP BRAIN
ELECTRODE CAN SENSE NEURAL
ACTIVITY.
THE DATA IS THEN USED IN THIS
IMPLEMENTED GENERATOR TO DEFINE
A STIMULATION PATTERN THAT GOES
TO A DIFFERENT BRAIN REGION.
WE'RE TAKING THE APPROACH OF
CLASSIFYING THE TYPE OF
TECHNOLOGY IN A CLOSED LOOP
SYSTEM AND THINK OF THE ETHICAL
AND LEGAL AND SOCIAL AND
CULTURAL IMPLICATIONS AND WORK
THROUGH THIS AS IT PERTAINS TO
THIS IMPLEMENTATION.
IN THIS CASE CLOSED LOOP THERAPY
FOR DEPRESSION.
WE'RE LOOKING FOR OTHER
APPLICATIONS FOR US TO USE AS
CASE STUDY TO GIVE EXAMPLES HOW
TO INTERACT WITH THE FRAMEWORK.
WITH THAT I'D LIKE TO THANK THE
CONTRIBUTORS TO THIS WORKING
GROUP.
THEY'VE BEEN FANTASTIC OVER MANY
MONTHS.
EVERYONE'S A VOLUNTEER AND ALL
WE'VE BEEN ABLE TO PRODUCE IS A
CREDIT TO THEM AND WHAT WE'VE
BEEN ABLE TO PUT TOGETHER THAT
WILL HOPEFULLY BE OF SERVICE TO
THE COMMUNITY.
THAT BEING SAID WE STILL NEED
HELP.
IF YOU WOULD LIKE TO GET
INVOLVED, WE'RE ALWAYS LOOKING
FOR MORE VOLUNTEER PARTICULARLY
FROM PEOPLE FROM OUTSIDE THE
U.S. AND ANYONE WHO HAS A
PASSION FOR THIS WE'D LOVE TO
HAVE HELP OUT.
THANK YOU FOR YOUR ATTENTION AND
THANK YOU FOR THE OPPORTUNITY TO
DISCUSS THIS WITH YOU AND HOPE
TO KEEP YOU ALL INVOLVED.
>>IN OUR SECTION WE
HAVE THREE SPEAKERS, SAR ARE
WILL TALK ABOUT UCI AND AGENCY
AND I'LL TALK ABOUT DEEP BRAIN
STIMULATION AND WE'LL HAVE A
TALK ON POST-TRIAL OBLIGATIONS.
SARA, OFF TO YOU.
>> THANK YOU, JOE.
I'M SARAH GERRING FROM THE
UNIVERSITY OF WASHINGTON WHERE I
WORK IN THE PHILOSOPHY
DEPARTMENT AND THE CENTER FOR
NEUROTECHNOLOGY.
I WANT TO TALK ABOUT BCI AND
HUMAN AGENCY.
REALLY QUICKLY LOOK AT ROSIE THE
RIVETER AND WE'RE TALKING ABOUT
THE DOGMATIC ACTION OF AGENCY
BEING DOING INTENTIONALLY VERSUS
BEING ACTED ON AND INVOLVES A
FEELING THAT WE ARE THE AUTHORS
SO OUR ACTIONS FLOW FROM OUR
BELIEFS AND INTENTION.
I ALSO WANT TO KNOW THAT
PARADIGM OF AGENCY IS NOT ALL
THAT IT IS.
WE CAN BE AGENTS WITHOUT
CONSCIOUS ACTIONS AND HAVE
HABITUAL ACTIONS THAT ARE
NONETHELESS OUR OWN AND NOT BE
FULLY INTENTIONAL AGENCY AS WHEN
WE ACT FROM IMPLICIT BIAS AND
DON'T NEED TO BE TOTALLY FREE
FROM OUTSIDE INFLUENCE ON THE
IDEA OF MAN IS AN ISLAND ISN'T
ACCURATE I THINK WHEN WE THINK
ABOUT THE WAYS IN WHICH WE'RE
AGENTS IN THE WORLD.
WE CAN CERTAINLY BE ACROSS THE
WHOLE SPECTRUM FROM A DIRECTION
FROM ACTING TO BEING COERCED.
WE MAY THINK OF AGENCY COMING A
PART FROM A SENSE OF AGENCY AND
INVOLVES A SENSE OF OWNER OVER
THE EXPERIENCES AND ACTIONS THAT
SHAPE OUR IDENTITY AND ONE OF
THE PROBLEMS HERE IS THAT
SOMETIMES AGENCY AND THE SENSE
OF AGENCY CAN BE PULLED A PART A
LITTLE BIT TO BELIEVE WE ARE AND
HAVEN'T ACTED AND THIS IS
THROUGH DIFFERENT EXPERIMENTAL
DESIGNS.
ON THE CONTRARY SIDE WE CAN
BELIEVE WE ARE NOT ACTING WHEN
IN FACT WE ARE ACTING AND
INFLUENCING ACTION DIRECTLY.
WE HAVE TO PAY ATTENTION TO HOW
THINGS WORK TOGETHER AND HOW
THEY COME A PART SO WE DON'T
INTERVENE ON THE BRAIN IN WAYS
THAT MAY MANIPULATE A SENSE OF
AGENCY WITHOUT EMPOWERING
AGENCY.
JUST A LITTLE BIT OF BACKGROUND.
I WORK WITH THE CENTER FOR
NEUROTECHNOLOGY AT U DUB AND
HAVE AN ETHICS GRANT AND I'LL
REPORT OUT A LITTLE BIT FROM
INTERVIEWS OVER THE SAME PERSON
OVER MULTIPLE TIMES DONE BY ONE
OF OUR POST-DOCS USING AN AGENCY
GUIDE IN THE GROUP.
FIRST, A LOT OF THE BCI DEVICES
HAVE BEEN VERY EFFECTIVE IN
GIVING PEOPLE SOME SENSE OF
CONTROL I JUST WANT TO NOTE TO
THE AUDIENCE THE EXCITEMENT
AROUND THINKING AND WATCHING
THIS MOVE HOI WANTED IT TO MOVE
WAS SHOCKING I WAS ABLE TO MOVE
THE THUMB.
YOU THINK THAT'S WHAT BUILT MY
BOND WITH THE ROBOTIC ARM SEEING
IT MOVE HOW I WANTED IT TO
CONTROL OR ANOTHER PERSON SAID
WHEN I MOVED THE CURSER ON THE
SCREEN IT FEELS LIKE AN
APPENDAGE.
IF THEY TELL ME TO MOVE IT WITH
THE THUMB I MENTALLY MOVE THE
THUMB TO MOVE THE CURSER.
IT FEELS LIKE I'M PUSHING AN
OBJECT BECAUSE I GET THE
SENSATION.
THERE'S NOT OBJECT BEING PUSHED
BUT FEELS THAT WAY.
OR ANOTHER PERSON SAYS IT WAS
KIND OF TWILIGHT ZONISH TO ME I
COULD THINK OF SOMETHING AND THE
COMPUTER NEW MY BRAIN WAS TRYING
TO DO IT AND IT DID IT.
THESE ARE SUCCESSES WHERE IT
FEELS LIKE IT'S VERY ENHANCING
OF A PERSON'S CAPACITY.
THIS WAS SURPRISING TO ME HOW
MANY WHO WERE PARTICIPANTS IN
THE STUDIES SAID DOING THIS WAS
MENTALLY AND PHYSICALLY
EXHAUSTING.
SO SOME THE TIME I XHONT
ACCOMPLISH WHAT THEY WANTED KNOW
AND I CAME HOME AND PRACTICE ALL
DAY LONG AND HAD TO LEARN HOW TO
COME HOME AND RELAX BECAUSE FOR
A YEAR I COULDN'T DO THAT.
I WAS JUST WORKING WITH A
ROBOTIC ARM BUT WASN'T
PHYSICALLY CONNECTED.
I WAS TRYING TO ACCOMPLISH IT
AND IT WAS TOO MUCH AND OVER
WEHELMING AND WHEN I'M DONE WIT
A SESSION I'M PRETTY BEAT WHEN
DOING THINGS WE HAVEN'T DONE AND
LIKE OVER TIME IT'S LIKE A
MUSCLE IN MY MIND IN MY ABILITY
TO PUSH THE CURSER STRENGTHENS
OVER TIME.
ANOTHER PARTICIPANT SAID IN THE
BEGINNING I PUT A LOT OF EFFORT
IN TO IT WHERE I WAS TIRED.
MY ARMS WERE TIRED.
THIS IS A PERSON WHO DOESN'T
HAVE MOTOR CONTROL OVER THEIR
ARMS AND SO MY ARMS WERE TIRED
AS IF IT WERE MY HAND AND MY
ARMS GET TIRED.
I THINK THIS IS INTERESTING.
ONE OF THE REASONS WE WANT TO
ASK PEOPLE ABOUT THEIR
PHENOMENAL EXPERIENCE OF USING
THE DEVICES.
IT DIDN'T ALWAYS GO SO WELL.
SOME PEOPLE REPORT OUT ON
FRUSTRATING EXPERIENCES.
IT'S AN EBB AND FLOW.
SOMETIMES WE BREAKTHROUGH AND
HAVE A GREAT SESSION, OTHER
TIMES THE COMPUTER IS NOT ACTING
RIGHT OR READING THE COMPUTER
100% OR WHEN THEY MAKE TWEAKS TO
THE ALGORITHMS SOMETIMES THEY
WORK AND SOMETIMES THEY DON'T.
IT'S BACK AND FORTH.
ALWAYS BACK AND FORTH TO THE
DRAWING BOARD.
AND MY DAUGHTER'S JUST
GRADUATING AND MOVING ON THROUGH
HIGH SCHOOL AND THIS IS HER
EXPERIENCE TOO.
I FEEL FRUSTRATED BECAUSE I'M
TRYING TO PUSH THROUGH AND FEEL
LIKE THE COMPUTER'S HOLDING ME
BACK.
THAT FRUSTRATION YOU GET WHEN
YOUR INSTRUCTOR SAYS YOU HAVE TO
DO A GROUP PROJECT AND YOU GET
THAT ONE PERSON IN YOUR GROUP
WHO DOESN'T PULL HIS WEIGHT.
I'M WORKING HERE AND THAT
COMPUTER IS SCREWING UP TODAY SO
THE PERSON'S TRYING TO BE
TANGENTIAL AND IT FEELS LIKE
THERE'S A BLOCK IN DOING THAT
SUCCESSFULLY WHERE AGAIN ANOTHER
PARTICIPANT WHO SAID WE'RE
ROLLING ALONG REALLY GOOD AND
NOW THINGS AREN'T WORKING.
IT WAS FRUSTRATING.
I HADN'T OPENED UP TO THE
THOUGHT MAYBE THEY'RE DOING
SOMETHING DIFFERENT OR ARE YOU
JOKING WITH ME.
IT'S A BIT OF UNCERTAINTY THERE
WHICH LEADS ME TO MY NEXT SLIDE,
UNCERTA
UNCERTAINTY, THERE'S A FORCE I
FEEL I'M WRESTLING AGAINST AND
SOMETIMES IT'S OVERWHELMING AND
SOMETIMES IT FEELS LIKE IT'S
PUSHING ME AND DON'T UNDERSTAND
WHY IT HAPPENS ON SOME OCCASIONS
AND NOT OTHERS BUT IT'S
SOMETHING THEY'RE TRYING TO
FIGURE OUT.
SOMEBODY ELSE, IS IT NOT TUNED
WELL?
SOMETHING IS NOT WORKING AND I'M
NOT SURE IF IT'S ME OR IF IT'S
THE DEVICE.
FINALLY, ONE OTHER PARTICIPANT
SAID I COULD JUST BE TIRED AND
NOT FOLLOWING ALONG AS I SHOULD
HAVE.
YOU END UP HAVING A BIAS TOWARDS
ONE DIRECTION OR THE OTHER AND
CAN'T USE THE DECODER AND OTHER
DAYS YOU MAY END UP WITH ONE
THAT'S REALLY BAD.
THIS IS TO GIVE A SENSE OF THE
DIFFICULTIES AND INTERESTING
EXPERIENCES PEOPLE HAVE HAD
PARTICIPATING IN THE VCI
STUDIES.
THEY'RE OFTEN LONG-TERM STUDIES
THAT CAN LAST THREE TO FIVE
YEARS AND SOMETIMES LONGER.
PEOPLE COME IN THREE TIMES A
WEEK SOMETIMES FOR A COUPLE
HOURS AT A TIME.
IT'S IMPORTANT WE PAY ATTENTION
TO HOW TRYING TO ACT OR EXERT
INTENTION ON THE WORLD THROUGH
THE DEVICES CAN ALTER A PERSON'S
SENSE OF THEMSELVES AS AN AGENT.
ONE OF THE THINGS OUR GROUP HAS
DONE IN THINKING THROUGH THESE
ISSUES IS TO LOOK AT DIFFERENT
DIMENSIONS OF WHAT WE WOULD CALL
DIFFERENT DIMENSIONS OF HUMAN
AGENCY.
THIS LIST IS NOT MEANT TO BE
COMPREHENSIVE OR OTHER THINGS
WE'RE NOT ACCOUNTING FOR AT THE
MOMENT BUT FROM WHAT WE HEARD
FROM RESEARCH PARTICIPANTS WE
MAY INCLUDE RESPONSIBILITIES AND
QUESTIONS AROUND DID I DO THAT
OR WAS THAT THE MACHINE.
AM I RESPONSE I AM FOR THE
DEVICE NOT WORKING AND THOSE ARE
THINGS I FOCUS ON FOR TODAY AND
AUTHENTICITY.
DOES IT FEEL LIKE ME WHEN
ACTING?
ARE THERE ISSUES THAT CAN
INTERVENE ON MY SENSE OF
IDENTITY AS OTHER PREVIOUS
SPEAKERS HAVE MENTIONED.
ONE THING WHEN WE LOOK AT VCI
DEVICES THAT OFFER SENSORY
FEEDBACK THROUGH ROBOTIC ARM OR
IN ANOTHER WAY DIRECTLY TO
SENSORY CORTEX IS ISSUES OF
TRUST DID THE SENSORY IMPRESSION
I GOT REALLY HAPPEN?
CAN I TRUST MYSELF TO KNOW IT
DID OR ARE MY SENSORY CAPACITIES
IN ALIGNMENT BASED ON THE
SENSORY FEEDBACK AND ONE OF THE
PEOPLE USING ROBOTIC ARM WITH
SENSORS ON ITS FINGER TIPS FOR
HIM THE FEELING OF THE TOUCH WAS
NOT AT THE FINGER TIPS BUT THE
KNUCKLES.
THERE'S AN ADJUSTMENT IN THE
BRAIN TO FIGURE OUT IF THE SEN
ASAT
SATION IS -- SENSATION IS
ACCURATE AND WHO HAS ACCESS TO
INFORMATION FROM WHAT IS
RECORDED MR. FROM MY BRAIN AND
HOW DO I NEGOTIATE MY OWN
BOUNDARIES?
I THINK I'M OUT OF TIME.
THANK YOU TO MY WONDERFUL U-W
NEUROETHICS TEAM.
THANKS.
>> I'M JOE FINN FROM WEILL
CORNELL LAW SCHOOL AND I WANT TO
REPORT ON THOSE WHO PARTICIPATED
IN A TRIAL AND I ENCOURAGE YOU
TO SEE POSTER 337 AVAILABLE
IMMEDIATELY AFTER THE
PRESENTATION.
THEY ACTIVATED THE CIRCUIT AND
WE ENROLLED SIX FOLKS WITH
SEVERE TO MODERATE TBI AND ONE
WAS EX PLANTED FOR A SECTION.
ALL WHO COMPLETE THE STUDY HAD A
10% OR GREATER IMPROVEMENT IN
THE TRAIL MAKING TEST PART B
WHICH IS A MEASURE OF COGNITIVE
PROCESSING SPEED AND IMPROVED
EXECUTIVE FUNCTION.
REMARKABLY, TWO OF THE FIVE
SUBJECTS HAD A ONE-POINT
INCREASE IN THE GOS-E SCALE AND
THIS IS POSSIBLE FOR WHEN
NOTHING ELSE IS AVAILABLE.
WE DID SEMI STRUCTURED
INTERVIEWS POST-OPERATIVELY AND
THEY ALL HAD DECISION MAKING
CAPACITY AND WERE ASSESSED TO
PROVIDE AUTONOMOUS CONSENT AND
THE SUBJECTS AND AT LEAST ONE OF
THEIR FAMILY MEMBERS AND THIS IS
A MASSIVE AMOUNT OF VERB YAJ WE
HAD A WORD COUNT OF 70,000 WORDS
FROM THE SUBJECTS AND FAMILY
MEMBERS AND SIMILAR IN THE
COHORT ACCOUNTING FOR THE LOSS
OF THE ONE SUBJECT WHO WAS NOT
FOLLOWED.
WE GOT TRANSCRIPTIONS OF THE
TAPE AND NEUROETHICISTS TALK
ABOUT HOW NEUROTECHNOLOGY
DISRUPTS PERSONAL IDENTITY IT'S
THE ENTRY THAT DISRUPTS PERSONAL
IDENTITY ACCORDING TO THE OF MY
DAUGHTER CHANGED FOREVER KNOWING
SHE WOULD NEVER BE WHO SHE WAS
BEFORE.
I'M RAISING HER ALL OVER AGAIN.
ANOTHER SAYING I'M SIMILAR BUT
NOT THE SAME AND ANOTHER SAID
HE'S AN IMMATURE VERSION OF HIS
FORMER SELF.
CONSENT ISSUES WERE INTERESTING.
THE SUBJECTS WERE MORE FOCUSSED
ON BENEFITS OF ALTRUISM AND THE
FAMILIES WERE MORE CONCERN ABOUT
RISK.
MANY WANTED TO MAKE A
CONTRIBUTION.
IT'S KIND OF COOL.
IT COULD BE GROUNDBREAKING.
I COULD BE HELPING A LOT OF
PEOPLE.
AT LEAST I SERVED A PURPOSE.
AND THEY HAVE A RISK REWARD
NOTION OF WHY THEY'RE
PARTICIPATING.
FAMILIES ON THE OTHER HAND WERE
VERY CONCERNED.
LIKE I TOLD YOU, INITIALLY I WAS
TOTALLY AGAINST IT WHEN A MOTHER
SAID I TRIED TO TALK HIM OUT OF
IT AND HE'S SO UNHAPPY AND
BECAUSE OF THEY WANT THAT FOR
HIM I'M GOING WITH HIS GUT ON
THIS ONE.
I PUSHED PRETTY HARD FOR HIM NOT
TO DO THIS BECAUSE I'M CONCERNED
YET IT'S HIS LIFE.
ONE INTERACTION WITH A
RESPONDENT WHEN ASKED IF SHE
WOULD STILL DO IT IF FAMILY
MEMBERS DIDN'T WANT HER TO SHE
SAID YES, IT'S MY DECISION AND
IF THEY DIDN'T WANT ME TO, TOO
BAD BECAUSE IT'S MY LIFE.
I SAID WHY IS IT YOUR DECISION?
BECAUSE IT'S MY BODY AND I'M AN
ADULT.
I HAVE LEGAL CONSENT OVER
MYSELF.
THEY DOES NOT SUFFER THERAPEUTIC
MISCONCEPTION AND SAID RESEARCH
IS DIFFERENT AND FOLLOW THE
GUIDELINES AND SOME HAVE BEEN
OUT FOR A LONG TIME AND RESEARCH
IS EXPERIMENTAL AND WE DID
DETECT IN ONE RESPONDENT WHAT A
CALL INSTITUTIONAL TRANSFERENCE.
THEY WERE IMPRESSED BY SURGERY
AT STANFORD AND SAID I DO KNOW I
HAVE THE HOPE SOMETHING GOOD
WILL COME OUT OF IT AND DIDN'T
HAVE CONCERNS ABOUT A POST-TRIAL
OBLIGATION.
ONE SUBJECT SAID MY DAD ASKED
HOW LONG THE IMPLANT WOULD BE
SUPPORTED AND MAINTAINED IF IT
WORKED SUPER WELL OR IS NICE WAS
STANFORD GOING TO CONTINUE
PAYING FOR IT OR SUPPORTING IT?
I DON'T THINK WE ASKED THE COST
TO REPLACE THE BATTERY OR
INSURANCE WOULD BE STANDING ON
THE DEGREE OF BENEFIT.
I'D LIKE IT IN PERPETUITY.
IT WOULD BE NICE IF THEY
UNDERSTAND WHY THE SCHOOL MAY BE
FORCED TO STOP AFTER A WHILE.
POST OPERATIVELY IT'S THE CELL.
ONE MOTHER SAID I GOT MY
DAUGHTER BACK.
IT'S PROFOUND FOR US.
IT'S A PROFOUND CHANGE.
AND HERE COMES THE TEARS.
IF SOMEBODY TOLD ME IN AUGUST
WE'D BE SIGNATURE HERE HAVING
THIS CONVERSATION IN JANUARY I
NEVER WOULD HAVE BELIEVED IT.
IT'S BEYOND MY HOPES.
BEYOND ANTICIPATION.
SOMEBODY TURNED THE LIGHTS BACK
ON.
AND ONE SUBJECT SAID SO I HAVE
REGROWN UP AGAIN.
BEFORE THE IMPLANT I WAS EARLIER
TEENS AND AFTER THE IMPLANT BACK
TO LATE TEENS MORE MY ACTUAL
AGE.
THEY ALSO HAD ISSUES OF
ADAPTATION AND DEALING WITH
THEIR NEW SELVES.
ONE SUBJECT TALKED ABOUT LIKING
READING BOOKS AND STUFF.
WHY?
I WOULD HAVE THOUGHT THAT WAS
BORING.
IT'S AMAZING TO ME I ENJOY DOING
THESE THINGS LIKE I'M A NERD.
YOU GUYS MADE ME A NERD.
AND THE SAME SUBJECT SAID I WENT
TO LUNCH WITH ANY GIRLFRIEND AND
I TOLD HER I LIKED READING AND
LOOKED AT ME LIKE WHY AND I
LOOKED AT HER AND KNEW OUR LIVES
WERE GOING DIFFERENT WAYS.
I NEED A DIFFERENT
GIRLFRIEND NOW.
THEY WANTED TO HAVE NEW LIVES.
HOPING THERE WAS SUPPORT GROUPS
FOR PEOPLE LIKE THEM WHO HAVE
THIS KIND OF DISABILITY AND THEY
WERE ALSO CONCERNED ABOUT
POST-TRIAL ACCESS.
ONE SUBJECT I THINK SAID WHAT
YOUR CONCERNS ABOUT THE FUTURE
AND THIS PERSON -- THE ONLY
THING THAT COMES TO MIND IS
REPLACING THE BATTERY.
NO OTHER THAN THAT.
OTHERWISE THEY DON'T UNDERSTAND
WHY THE GOVERNMENT IS NOT GIVING
ME DISABILITY INSURANCE OR
SOMETHING.
LIKE COVER MY MEDICAL
EXPERIENCES OR COVER THE
DISABILITY.
PICK ONE.
I'D RATHER HAVE THE JOB THAN
COLLECT INSURANCE AND THE SOCIAL
ASPECT IS ALSO NEEDED SITTING
HOME ALONE ALL DAY IS BORING.
THERE'S SO MANY REASONS TO GO
OUT AND GET A JOB AND DO
SOMETHING AND THEN WENT ON TO
CALCULATE THE COST OF THE
BATTERY AND HOW MUCH HE COULD
MAKE AND THE TAXES HE'D PAY IN
THE REST OF THE TRANSCRIPT AND
THEY HAD TO RECONFIGURE THEIR
LIVES AND HOPING FOR A RE-ENTRY
PROGRAM.
YOU'RE BACK TO YOUR OLD SELF
LET'S DISCOVER WHO YOU ARE AND
WHAT THINGS YOU'RE GOOD AT AND
HOW DO YOU GO ABOUT THESE AND A
STRUCTURED PROGRAM WOULD BE AN
AUTOMATIC THING IF YOU GO
PROCEDURE AND HOPE AND
IMPROVEMENT THIS OFFERS I'D LIKE
A PROGRAM TO HELP PEOPLE
UNDERSTAND WHAT THEIR LOVED ONE
IS GOING THROUGH AND DO YOU HAVE
TIPS?
IT'S THE SCIENCE AND SOCIETY
OBLIGATION OF THE BRAIN
INITIATIVE.
IT'S NOT ENOUGH TO DEVELOP
TECHNOLOGY WE HAVE TO DEVELOP
THE INFRASTRUCTURE THAT ALLOWS
PEOPLE TO THRIVE ONCE THEY HAVE
BENEFITTED FROM THESE ADVANCES
IN NEUROTECHNOLOGY.
WHERE DO WE GO FROM HERE?
I THINK THE BRAIN INITIATIVE HAS
BEEN REMARKABLE AND PREDICATED
ON DEVELOPING NOVEL
TECHNOLOGIES.
IN OUR CASE IT WAS COGNITIVE
RESTORATION AND THIS HAVE THE
SCIENCE CHALLENGE AND VE WE HAV
TO DEVELOP A WAY TO SOCIALLY
INTEGRATE THE PEOPLE AND NEED
NEW FRIENDS AND NEW LIVES AND
NEED A PATHWAY FOR RE-ENTRY.
THE PATHWAYS MOVE BEYOND THE
THALAMUS AND THEY MOVE TO
SOCIETY AND THE WORK WE'RE DOING
AT YALE LAW SCHOOL MOVING FROM
THE RIGHT TO MAKE THE CHANGES TO
FOSTERING CAPABILITIES AS TALKED
ABOUT AND WE PROPOSED AND THIS
IN THE GRANT AN AMERICANS WITH
ABILITIES ACT NOT DISABILITIES.
BECAUSE WE'RE GIVING PEOPLE
ABILITIES WITH THE
NEUROTECHNOLOGIES BECAUSE THE
A.D.A. ACCOMMODATES THE
ENVIRONMENT TO THE DISABILITY.
A PROPOSED AMERICANS WITH
ABILITIES ACT EMPOWERS
INDIVIDUALS WITH
NEUROPROSTHETICS AND ADOPTS THE
CAPABILITIES APPROACH TO ALLOW
PEOPLE TO FLOURISH WITH THEIR
NEW LIVES AND NEW POSSIBILITIES.
I'LL STOP THERE AND I'LL TURN IT
OVER TO GABE.
THANK YOU.
>> THANK YOU, DR. FINS FOR THAT
PRESENTATION.
WHAT I'LL BE DISCUSSING IS ONE
IMPORTANT COMPONENT OF WHAT
DR. FINS BROUGHT UP.
THE DEVICES HAVE WHEN THEY WORK,
THEY HAVE A PRETTY HUGE IMPACT
ON THESE PATIENTS' LIVES AND
IT'S NOT ONLY PATIENTS WITH
TRAUMATIC BRAIN INJURY BUT WE'VE
BEEN WORKING AND INTERVIEWING
PATIENTS WITH PARKINSON'S
DISEASE, TREMOR, OCD AND
TOURETTE'S SYNDROME AND THERE'S
A GREAT DEAL OF A NUMBER OF
PATIENTS THAT LUCKILY MAY BEGIN
TO HAVE ACCESS TO THESE
TECHNOLOGIES BUT THERE ARE A LOT
OF QUESTIONS ABOUT WHAT HAPPENS
ONCE THEY'RE DONE WITH THE
TRIAL.
HOW DO THEY GET ACCESS TO THESE
TECHNOLOGIES AND THESE ARE
RESISTANT CONDITIONS AND NOTHING
ELSE TO GO BACK TO IF THEY DON'T
HAVE ACCESS TO THESE DEVICES.
I'LL TALK ABOUT ADAPTIVE DEEP
BRAIN STIMULATION.
MANY ARE PROBABLY FAMILIAR BUT
IN CONVENTIONAL DEEP BRAIN
STIMULATION YOU BASICALLY
PROVIDE CONTINUOUS STIMULATION
AND ADAPTIVE ALLOWS TO YOU
IDENTIFY SOME KIND OF BIOMARKER,
ACTIVITY IN THE BRAIN ASSOCIATED
WITH THE ONSET OF SYMPTOMS AND
THEN HOPEFULLY BY READING AND
IDENTIFYING THE BIOMEDICAL YOU
CAN EITHER INCREASE STIMULATION
WHEN THE TO TURN IT ON AND WHAT
DIFFERENTIATES THIS FROM
CONVENTIONAL IS YOU'RE READING
NEURAL ACTIVITY AND THE SYSTEM
IS ABLE TO RESPOND IN WHEN IT
DETECTS THAT KIND OF ACTIVITY
ASSOCIATED WITH THE SYMPTOMS.
FOR THESE CONDITIONS I'M TALKING
ABOUT PARKINSON'S, DYSTONIA AND
TREMOR AND OCD AND TOURETTE
SYNDROME THE PATIENTS COULD NOT
ACCESS IT COMMERCIALLY IN WAY.
IS THERE LEGAL OBLIGATION TO
CONTINUE THE DEVICES IF THE
PATIENTS WOULD BENEFIT GREATLY
FROM THE DEVICES.
THE TRUTH IS IN THE U.S. THERE'S
NO LEGAL OBLIGATION CURRENTLY TO
PROVIDE ANY KIND OF CONTINUED
ACCESS.
THERE ARE CERTAIN REPORTS AND
GROUPS THAT HAVE PROVIDED
SUGGESTIONS THAT RESEARCHERS
WHEN THEY'RE PUTTING TOGETHER
DESIGNING STUDIES THEY SHOULD
THINK ABOUT POTENTIALLY
POST-TRIAL ACCESS TO THE DEVICES
FOR PEOPLE WHO BENEFIT FROM THE
DEVICES OR DRUGS, ETCETERA, BUT
NONE OF THESE ARE LEGALLY
BINDING IN THE U.S.
THE QUESTION BECOMES SOMETHING
ABOUT CHANGING THE REGULATIONS
OR IS THERE AN ETHICAL
OBLIGATION THAT THAT SHOULD
LEAVE THE DIFFERENT PEOPLE
INVOLVES IN PROVIDING AND
POTENTIALLY BENEFIT FROM THE
DEVICES TO MAKE SURE THAT THE
PATIENTS WHO BENEFIT FROM THE
DEVICES ARE ACTUALLY ABLE TO
CONTINUE HAVING ACCESS TO THEM
AT THE END OF THE TRIAL.
AS DR. FINS MENTIONED THE
DEVICES CAN MAKE A HUGE
DIFFERENCE IN THE INDIVIDUAL'S
LIVES AND THEY'VE BEEN
EXPERIENCING THE DISORDERS FOR
QUITE A BIT.
FOR THESE PATIENTS THEY HAVE
SEVERE SYMPTOMS TO MEET THE
INCLUSION CRITERIA TO
PARTICIPATE IN THE TRIALS.
WE INTERVIEW PATIENTS BEFORE THE
SURGERY AND SIX MONTHS AFTER
THEY HAD SOME EXPERIENCE WITH
THE DEVICE.
THESE ARE ALL TRIALS TESTING THE
ADAPTIVE COMPONENTS.
HAVE MADE MORE PROGRESS IN
IDENTIFYING THE BIOMARKERS
ETCETERA OF THE TRIALS TESTING
THE ADAPTIVE COMPONENT.
I'LL HIGHLIGHT SOME OF THE
THINGS THAT WE ASKED THEM AND
HEARD FROM THE PATIENTS.
AND HAVE A BREAK DOWN OF
CONDITIONS AND WE DO ANALYSIS TO
IDENTIFY THE FREQUENT THEMES AND
WE HAVE AT LEAST TWO PEOPLE THAT
CORROBORATE THE ABSTRACTIONS WE
DO FROM THE DATA.
I'M HOPING IT WILL PROVIDE
RELIEF AND I'M YOU UP FOR
KEEPING IT.
ONE OF THEM SAID AT THE END OF
THE STUDY IF THEY WANT IT BACK
THEY'LL HAVE TO FIGHT ME IT.
THEY WANTED TO MAINTAIN THE
BENEFIT.
THEY HAVE NOTHING ELSE TO GO
BACK TO.
THE OTHER PEOPLE DID NOT SAY
THEY DIDN'T WANT TO HAVE ACCESS.
MOST HAD UNCLEAR ANSWERS THAT WE
DECIDED NOT TO COUNT AS SUPPORT
FOR CONTINUED ACCESS AT THAT
POINT.
AND THEY'RE IN FAVOR OF
CONTINUING ACCESS.
WE ASKED THEM HOW DO YOU THINK
KEEPING THE DEVICE FUNCTIONING
AT THE END OF THE STUDY SHOULD
BE PAID FOR?
AND PRE-SURGERY MOST OF THEM
MENTIONED INSURANCE.
PAY FOR INSURANCE THEY SHOULD
CONTINUE THIS IS WORKING.
IT'S MEDICALLY NECESSARY FOR ME
AND SHOULD CONTINUE COVERING
THIS AND THERE'S A DECREASE IN
THE NUMBER OF PEOPLE THAT
MENTION INSURANCE AND IT'S
BECAUSE THERE'S AN INCREASE IN
THE NUMBER OF PEOPLE MENTIONED
IN DEVICE MANUFACTURERS.
IT SEEMS AS THEY SEE HOW THE
RESEARCH TAKES PLACE AND WHAT
ARE THE DIFFERENT ROLES OF EACH
OF THESE GROUPS AND PLAYERS
INVOLVED IN MAKING THE RESEARCH
POSSIBLE MANY OF THEM START
MENTIONING THAT THOSE WHO ARE
DEVELOPING THESE DEVICES AND
MANUFACTURING THE DEVICES SHOULD
HAVE SOME OBLIGATION TO HELP
PROVIDE CONTINUED ACCESS.
THEN A NUMBER OF THEM ALSO
MENTIONED THAT PARTICIPANTS
SHOULD BE ABLE TO COVER IF THEY
HAVE THE MEANS THEY SHOULD COVER
PART OF THE COST OF MAINTAINING
THE DEVICE, THE RESEARCH TEAMS
THEY MENTION AS WELL THE
HOSPITAL INSTITUTIONS WHERE THE
RESEARCH TAKES PLACE AND
GOVERNMENT.
WE ASKED WHAT GROUPS SHOULD BE
FINANCIALLY RESPONSIBLE AND FOR
DEVICE MANUFACTURE ERS WHICH WA
THE GROUP THAT REMAINED SAID
SINCE THE COMPANY OR TEAM OR THE
WHATEVER IS GETTING I HOPE A LOT
OF INFORMATION I THINK THEY HAVE
A RESPONSIBILITY TO CONTINUE TO
TAKE CARE OF THE PEOPLE THAT
HAVE THE DEVICES.
I WOULD NOT EXPECT OR WANT TO BE
CUT LOOSE AT A CERTAIN
DEFINITIVE DATE.
WE SEE THE PRINCIPLES OF
RECIPROCITY THAT ARE BEING
EXPRESSED HERE.
ANOTHER ONE WE TALKED ABOUT
INSURANCE SAID I THINK INSURANCE
SHOULD DEFINITELY PAY FOR THAT.
IT'S NOT LIKE THEY HAVE TO PAY
FOR THE SURGERY BECAUSE IT'S
PAID FOR BY THE STUDY.
I THINK THE INSURANCE SHOULD
TAKE RESPONSIBILITY AND IF THEY
WOULD JUST PAY OUT AND DO WHAT
THEY'RE SUPPOSED TO DO, THEN
YEAH, THEY NEED TO PAY FOR IT.
YOU SEE A CONTRACT LIKE
OBLIGATION THEY'RE SEEING WITH
THEIR INSURANCE PROVIDER AND
THEN THEY'RE SEEING IT'S
SOMETHING THAT'S MEDICALLY
NECESSARY THE PATIENT SHOULD
HAVE ACCESS TO IT EVEN IF IT'S
EXPERIMENTAL.
SOME MENTIONED PARTICIPANTS, IF
YOU CAN AFFORD IT YOU SHOULD BE
ABLE TO HAVE IT BUT IF YOU
CAN'T, THE SAME WAY YOU GOT IN
THE STUDY IS THE SAME IT SHOULD
BE AND IT WOULD BE CRUDE TO GIVE
THIS TO SOMEONE AND SNATCH IT
AWAY BECAUSE OF A FEW PENNIES
THOUGH I KNOW IT'S MORE THAN A
FEW PENNIES.
AND FINALLY SOME MENTION THE
RESEARCH TEAM THE STUDY SHOULD
PAY FOR IT.
I GUESS THE PARTICIPANTS IN THE
STUDY TOOK THE RISK AND HAD
EVERYTHING DONE AND I THINK
WHATEVER IS NEEDED TO KEEP IT
UP, IF IT CAN'T BE PAID BY THE
INDIVIDUAL PERSON IT SHOULD BE
TAKEN CARE OF BY THE STUDY EVEN
WHEN THE STUDY ENDS.
AND THANK YOU TO OUR
COLLABORATORS AND THE NIH FOR
THE FUNDING.
I THINK WE'LL MOVE TO THE Q&A.
>> THERE'S TWO QUESTIONS.
FEEL FREE TO KEEP THE
QUESTIONING COMING.
SO FIRST QUESTION SAYS, THE
GUIDELINES PRESENTED IN SOME OF
THE TALKS ARE QUITE
COMPLEMENTARY GIVEN THE
MULTI-DISCIPLINARY NATURE OF THE
WORK, ARE THERE SCENARIOS WHERE
THERE'S COMPETING ROLES, AIMS,
PRIORITIES BETWEEN THE
DISCIPLINES?
>> THERE'S OVERLAPPING
PRINCIPLES.
I THINK THAT THERE'S A DYNAMIC
TENSION THAT CAN COME IN BETWEEN
SOME OF THESE CONSTRUCTS ADDS
THEY APPLY IN THE MILITARY
CONTEXT VERSUS A MEDICAL
CIVILIAN CONTEXT, FOR INSTANCE.
SO THE CONCEPT OF AGENCY AND
IDENTITY HAVE A SLIGHTLY
DIFFERENT POTENTIAL IMPORTANT
BUT ALSO DIFFERENT -- IMPORT BUT
ALSO DIFFERENT STANDARDS AND
OBLIGATIONS APPLY IN DIFFERENT
CONTEXT.
I THINK THE IMPORTANT THING DO
IS TO DEFINE THE CONTEXT OF USE
WHEN WE'RE ENGAGING IN THIS SORT
OF DISCOURSE BUT BY AND LARGE I
THINK THE GROSSER CONCEPTS ARE
GOING APPLY ACROSS THE BOARD AND
IT'S UNLIKELY THAT ONE OF THESE
DOMAINS THAT A TECHNOLOGY
DEVELOPED IN THAT DOMAIN WILL
STAY IN THAT DOMAIN.
THINGS ARE FREQUENTLY DEVELOPED
INTO THE MILITARY OR IN THE
MILITARY CONTEXT AND MOVED TO A
MEDICAL OR MEDICAL AND TO THE
REST OF SOCIETY.
THESE ARE NOT LIKELY TO STAY
THERE.
THEY MAY BE IMPLEMENTED IN
WELLNESS AND ENTERTAINMENT AND
OTHER THINGS AS WELL.
I THINK IT'S IMPORTANT TO
CONSIDER MULTIPLE DOMAINS
POTENTIALLY AT LEAST IN THE
CONTEXT OF WHAT OTHER DOMAINS
MIGHT THE TECHNOLOGY BE USED IN
WHEN THEY'RE IN THE DEVELOPMENT
STAGE.
>> IS THERE ANYTHING YOU WANT IT
ADD TO THAT?
>> IN THE OLD DAYS WE WOULD HAVE
SAID THE DOMAINS THAT ARE
DISTINCT ARE CLINIC AND RESEARCH
DOMAINS BUT HERE I'M INFORMED BY
THE ANCILLARY CARE OBLIGATIONS.
WHEN WE'RE DOING RESEARCH ON THE
FOREFRONT THE PATIENTS BECOME
AGENT.
AND BEFORE THE WORK GETS
DISSEMINATED MORE BROADLY,
THERE'S A LOT OF ROLES THAT GET
CONFLATED.
THAT CREATES CONFLICTS OF
INTEREST AND CREATES PROBLEMS
BUT ALSO CREATES A RECIPROCAL
SET OF OBLIGATIONS AS WELL.
THAT MAY BE ANOTHER REASON.
>> I WANTED TO ADD I COMPLETELY
AGREE WITH JOE AND I THINK IT
WAS INTERESTING LISTENING TO
RACHEL'S DIFFERENCES BECAUSE
THERE'S CONTEXTUAL DIFFERENCES
BETWEEN MILITARY AND PLED CAL
RESEARCH CONTEXT.
THE IDEA THAT CONSENT DOESN'T
HAVE THE SAME POWER AND COMMAND
STRUCTURES.
IT SOUNDS DISTRESSING TO ME BUT
I CAN IMAGINE SEARCH BACKGROUND
ASSUMPTIONS FROM THE MEDICAL
WORLD NOT WORKING IN THAT
CONTEXT IN THE SAME WAY.
EVEN IN THE CONTEXT OF WELLNESS
IT'S NOT THE SAME LEVEL AND THE
R
RAMIFICATIONS.
THERE'S THE DIFFERENCES BETWEEN
DISCIPLINES.
AS I MENTIONED IN MY
PRESENTATION, FROM SOME OF THE
RESPONSES I SHOWED, FOR
ENGINEERS THERE'S DIFFERENT
GOALS AND PRIORITIES COMPARED TO
NEUROSCIENTISTS AND THAT'S WHY
WE DO SEE VALUE OF CREATING YET
ANOTHER FRAMEWORK OR GUIDELINE
SPECIFICALLY TARGETED TO
NEUROENGINEERS BECAUSE OUR
ASSUMPTION IS THEY'RE
COMPLEMENTALLY BUT DIFFERENCES
IN PRIORITIES THAT MAY BE
RELEVANT AND ADDRESSED TO THE
WORK WE'RE DOING.
ENGINEERS ARE TO SCIENCE WHAT
ARE PRAGMATISTS AND SPEAKS TO
ENGINEERING AND THERE'S A THREAD
OF THAT IN WHAT YOU AND YOUR
COLLEAGUES PRESENTED.
IT'S PRAGMATIC.
IT NOT ONLY HAS TO BE
THEORETICALLY CLEAN BUT WORKS IN
THE MESSY WORLD WHETHER IT'S THE
MILITARY OR ANOTHER AND WE'RE
ALL ENCOUNTERING THAT GRANULAR
SPACE.
>> THANK YOU, JOE.
HOW IS SCIENCE DEFINED AND WHAT
IF IT'S NOT DEFINED AS A
STATISTICALLY SIGNIFICANT VALUE?
AND STICKING TO PRAGMATISM
THAT'S SOMETHING WE'LL HAVE TO
CONSIDER AS A COMMUNITY
SERIOUSLY.
ONE OPTION IS TO HAVE SOME
CLINICAL ASSESSMENT AND
RELATIONSHIP WITH THE PATIENT
EXAMINE WHETHER THERE'S A
BENEFIT AND THAT'S ONE OPTION
AND IN ADDITION TO THAT TO THE
EXTENT POSSIBLE IT WOULD BE
GREAT TO EXAMINE.
THIS IS PARTICULARLY WHEN WE GET
INTO OBSESSIVE COMPULSIVE
DISORDERS AND OTHERS IT'S AN
INEXACT SCIENCE WITH THE SCALES
AND THE WAY WE MEASURE THESE
DISORDERS.
IT'S IMPORTANT WE TAKE INTO
ACCOUNT WHAT THE PATIENTS ARE
SAYING AND WHAT PARTICIPANTS ARE
SAYING AND TO THE EXTENT TO MAKE
IT AVAILABLE IF IT'S BENEFICIAL
EVEN IF WE CAN'T IDENTIFY THAT
USING THE SCALES OR WE MIGHT
HAVE BE USING NOR STUDY IF IT'S
POSSIBLE.
THAT WOULD BE IDEAL BUT BEING
TACTICAL ONE OF THE FIRST STEPS
WOULD BE TO START WITH SOME
INDEPENDENT ASSESSMENT TO SEE IF
THERE WAS AN IMPROVEMENT AND IF
SO LET'S FIGURE OUT A WAY TO
ENSURE ACCESS TO THESE
TECHNOLOGIES.
>> I THINK OUR METRICS ARE
IMPRECISE ABOUT THE BCI SUBJECTS
WHO ARE PARALYZED BUT HAVE
FATIGUE IN THEIR ARMS.
THERE WAS A SONG ABOUT MAKING
MEDICAL KNOWLEDGE AND SAID WE
HAVE TO BE PLURALISTIC IN HOW WE
UNDERSTAND THE WORLD.
THAT WOULD BE HYPOTHESIS
GENERATING.
WE NEED TO VALUE WHAT THE
SUBJECTS SAY.
IT HAS TO BE A CO-PARTNERSHIP, A
LAB -- COLLABORATION AND IN THE
MIND-BRAIN ARENA SUBJECTIVE
SENSE AND THEIR SUBJECTIVITY
MATTERS AND MAY BE HELPFUL TO
UNDERSTAND THE NEXT SET OF
QUESTIONS THAT WE CAN TURN INTO
EMPIRICAL OR QUANTITATIVE
QUESTIONS.
>> IF I CAN ADD ONE, I AGREE
WITH GABE AND OUR GROUP A LITTLE
WHILE BACK HAD ETHICISTS IN THE
ROOM AND PEOPLE TALKING WITH
RESEARCH PARTICIPANTS PRETTY
MUCH TO A PERSON THERE WAS
AGREEMENT A TRIAL CAN FAIL WHO
SHOWED SUCCESS STATISTICALLY AND
MAY STILL SAY THERE IS CLINICAL
UTILITY FROM THE DEVICE AND WE
HEARD NA FROM A LOT OF PEOPLE
AND EVEN IF IT'S NOT CLINICAL
UTILITY BUT ROBUST INDIVIDUAL
UTILITY IN TERMS OF THEIR WELL
BEING IT FEELS LIKE YOU'RE
PULLING AWAY WHAT'S BECOME A
CENTRAL LIFE-FULFILLING DEVICE.
THAT HAS BECOME PART OF THEM.
WE HAVE TO EXPAND OUR
UNDERSTANDING OF BENEFIT
RECOGNIZING THERE'LL BE OTHER
THINGS THAT WILL WE'LL HAVE TO
FACTOR IN.
ALL RIGHT.
>> JOE MENTIONED THE OBLIGATIONS
IN THE CONTEXT OF THE PATIENTS
IN THEIR STUDY AND THE PATIENTS
THAT WERE DIFFERENT.
DO YOU THINK IT SHOULD BE ACROSS
THE BOARD?
ARE THERE DIFFERENCES BASED ON
THE TYPE OF PATIENT THAT WE'RE
CONSIDERING?
>> THESE ARE INDIVIDUALS WHERE
THEY'VE BEEN NOT ABLE TO ACCESS
ANYTHING THAT WORKS.
WHEN WE ARE ABLE AS A SOCIETY TO
WORK FOR THESE INDIVIDUALS, WE
NEED TO MAKE SURE WE MAKE IT
AVAILABLE TO THEM THROUGH THEIR
LIFE TIME AND AS LONG AS IT'S
BENEFICIAL.
>> IT'S A FAIR INNINGS ARGUMENT
SPECIFIC TO THE NEED.
I AGREE WITH GABE.
>> LAURA, I THINK BECAUSE I'VE
TALKED WITH PEOPLE USING B.C.I.s
WHERE THEY'RE USING THEM
PRIMARILY IN A LAB SETTING WHICH
IS THEY'RE THERE EXTENSIVELY BUT
IT'S NOT HAVING THE SAME IMPACT
ON DAILY LIFE AN ADAPTIVE
SIMULATOR IN JOE'S CASE IS
HAVING ON THE INDIVIDUALS.
WE DO WANT TO CREATE A TAXONOMY
THAT LOOKS AT DIFFERENT STUDIES
DIFFERENTLY BECAUSE I THINK THE
POTENTIAL DAMAGE DONE IN
REMOVING ACCESS TO A TECHNOLOGY
IS VERY DIFFERENT BASED ON THE
KIND OF ROBUSTNESS OF
INTEGRATION INTO A PERSON'S LIFE
AND THE LEVEL OF BENEFIT.
>> I'LL GO TO OUR LAST QUESTION
BECAUSE WE'RE SUPPOSED TO WRAP
UP SOON.
WHEN THINKING ABOUT EXPANDING
NEW ETHICS DISCUSSIONS BEYOND
THE BELMONT PRINCIPLES,
RECONSIDERING CONTEXT OF POWER
AND AUTHORITY FOR EXAMPLE, WHO
ELSE BE THE -- BESIDES THE
PATIENTS AND OTHERS AND
PHILOSOPHERS WHO SHOULD BE
BROUGHT IN THE DISCUSSION?
>> I THINK THERE'S A NUMBER OF
CONSTITUENCIES.
THE ENGINEERS NEED TO BE IN AND
THE PUBLIC SO THEY'RE NOT
CLASSIFIED TECHNOLOGIES OR SOME
VERSION THAT'S NOT CLASSIFIED.
WE NEED TO HAVE A PROACTIVE
DISCOURSE WITH THE PUBLIC
STARTING RIGHT NOW THAT
CONSIDERS THE REALISTIC TRULY
REALISTIC CAPABILITIES OF THESE
TECHNOLOGIES THAT AVOIDS HYPE,
THAT AVOIDS HYPERBOLE AND GETS
AHEAD OF THE CURB IN TERMS OF
THE POTENTIAL KINDS OF
MISINFORMATION AND OTHER KINDS
OF INFORMATIONAL CAMPAIGNS,
MISSED CAMPAIGNS AND WAYS
INFORMATION TOWARDS THE PUBLIC
COULD BE MISUSED IN ORDER TO
IMPACT THE TRAJECTORY OF
DEVELOPMENT.
IT'S REALLY IMPORTANT FOR MANY
REASONS THERE'S A SCIENTIFICALLY
AND NEUROTECHNOLOGICALLY LITERAL
POPULATION ABLE TO DISTINGUISH
HYPE, SCIENCE FICTION FROM
SCIENCE FACT AND AT LEAST TO
ANTICIPATE WHAT'S POSSIBLE AND
NOT POSSIBLE.
THERE'S GOOD EXAMPLES OF HOW
SCIENCE FICTION, FOR INSTANCE,
HAS HAD REAL IMPACTS ON CLINICAL
AND ETHICAL DECISION MAKING
PEOPLE WHO WATCHED LUCIE AND
HEARD WE ONLY USE 10% OF OUR
BRAINS WHICH IS A MYTH.
THERE'S A NUMBER OF STUDIES AND
ANECDOTES WHERE FAMILIES HANDLE
CONDITIONS IN SITUATIONS WITH
CARE AROUND END OF LIFE WITH
STAGGERING IMPACTS BASED ON
MISINFORMM
MISUNDERSTANDING OF
MISINFORMATION.
YOU CAN UNDERSTAND THE
MISPERCEPTIONS LOCUS OF CONTROL
AND THERE MAY BE ISSUES WHERE
THERE MAY BE THE ABILITY TO
INFLUENCE SOMEBODY AT THE
TECHNOLOGIES BEING INTEGRATED AS
IN SARAH'S WORK AND GABE'S WORK
SUGGEST.
THOSE SORTS OF ACCOUNTS CAN BE
TAKEN BY THE PUBLIC THAT CAN
CREATE A LOT OF FEAR
APPROPRIATELY AND
INAPPROPRIATELY.
>> AND CAREGIVERS WOULD BE
ANOTHER CONSTITUENCY TO ADD.
FOR SOME CONDITIONS THEY PLAY
SUCH AN IMPORTANT ROLE.
GETTING THEIR PERSPECTIVES.
>> I THINK IT'S IMPORTANT TO
THINK ABOUT WHOSE NOT GETTING TO
THE TRIALS.
WHO MAY NOT HAVE THE INSURANCE
AND MAY NOT BE ABLE TO ACCESS
SOME OF THESE HOSPITALS AND THE
CARE SOME OF THE HOSPITALS
PROVIDE AND THE RESEARCH THAT
SOME THOSE CLINICIANS ARE
CONDUCTING AND WITH THAT ALSO AS
WE'VE HEARD DURING THE DAY A
NUMBER OF DIFFERENT UNDER
REPRESENTED GROUPS NOT GETTING
ACCESS TO THESE TECHNOLOGIES.
WHAT WE NEED TO MAKE SURE WE NOT
ONLY INCLUDE THOSE BUT PATIENTS,
ETCETERA THAT ARE THERE AND ALSO
LOOK FURTHER AND MAKE SURE OTHER
PEOPLE WHO COULD POTENTIALLY
BENEFIT FROM THESE ARE ALSO
BEING INCLUDED IN THE
CONVERSATION.
>> AND WE NEED TO INCLUDE THEM
AT THE DESIGN AND DEVELOPMENT
PHASE TOO WHEN IT COMES ACCESS.
FOR INSTANCE, FOR DIFFERENT HAIR
TEXTURES CAN LIMIT ACCESS TO
TECHNOLOGIES IF THEY'RE
DEVELOPED IN CERTAIN POPULATIONS
AND NOT BEING INCLUSIVE AT THAT
LEVEL.
IT'S MORE THAN JUST THE
DISCUSSION.
>> ALL RIGHT.
>> I THINK OUR TIME IS UP AND AS
CO-CONVENER WITH LAURA I WANT TO
THANK EVERYBODY FOR YOUR
OUTSTANDING PRESENTATIONS AND TO
THE BRAIN INITIATIVE FOR HOSTING
THIS DISCUSSION OF NEUROETHICS
AND ENJOY THE REST OF THE
MEETING.