>>I WANT TO WELCOME EVERYONE TO THE 14th MEET OF THE BRAIN NEUROETHICS OR NEWG. I WANT TO ESPECIALLY EXTEND A WARM WELCOME TO OUR WORKING GROUP CO-CHAIRS, HANK GREELEY AND CHRISTINE GRADY AS WELL AS OUR INVITED SPEAKERS AND PANELISTS WHO ARE JOINING US TODAY. SO, MY NAME IS ANDREA BECKEL-MITCHENER AND THE DEPUTY DIRECTOR AS THE BRAIN INITIATIVE AND THE DESIGNATED FEDERAL OFFICIAL FOR TODAY'S MEETING. AS MOST OF YOU KNOW, THE NEUROETHICS IS NOT A FORMAL ADVISORY GROUP LIKE THE BRAIN MULTI COUNCIL WORKING GROUP, THE NEWG IS A WORKING GROUP OF THE ADVISORY COUNCILS OF THE NIH INSTITUTES THAT PARTICIPATE IN THE BRAIN INITIATIVE AND WAS ESTABLISHED BECAUSE OF THE NEED FOR IN PUT ON NEUROETHICS RELATED TO RESEARCH SUPPORTED THROUGH THE BRAIN INITIATIVE. THE NEWG DELIBERATE S PROVIDINGE INPUT AND SUGGESTING POINTS TO CONSIDER THROUGH AN ETHICS FRAME. SO, ONCE AGAIN, WE HAVE A ZOOM MEETING AND A SOMEWHAT ABRIDGE DAY CONTINUED OUR NEED TO HOLD THIS MEETING VIRTUAL FOR THE TIME BEING. WE HAVE A LOT OF INTERESTING THINGS TO COVER. TODAY WE'LL HAVE AN UPDATE FROM OUR BRAIN DIRECTOR ON THE NIH BRAIN INITIATIVE, A NEW MEMBER PRESENTATION AND OVERVIEW OF EMERGING ETHICS THEMES FROM THE LATEST FISCAL YEAR OF BRAIN AWARDS AND A BRIEF RECAP OF THE NEWG WORKSHOP HELD EARLIER THIS YEAR, ON THE OBLIGATIONS AND RESPONSIBILITIES TO PATIENTS FOLLOWING THEIR PARTICIPATION IN AND CONTRIBUTION TO A RESEARCH TRIAL. AND FINALLY, AS USUAL, WE'LL GO AROUND THE VIRTUAL TABLE AND HEAR UPDATES FROM THE NEWG MEMBERS ABOUT WHAT EVERYBODY HAS BEEN UP TO IN THE NEUROETHICS SPACE. WE HAVE ONE NEWG MEMBER SERVING THEIR FINAL MEETING TODAY, A NEW LEADERSHIP TRANSITION AND ONE NEW MEMBERS JOINING THE GROUP AND JOHN WILL DESCRIBE THESE TRANSITIONS IN A FEW MINUTES. JUST A FEW HOUSEKEEPING THINGS. AS A REMINDER THIS IS THE OPEN SESSION OF THE MEETING AND IT'S BEING VIDEO CAST LIVE IN THE PUBLIC DOMAIN AND THE RECORDING WILL BE ARCHIVED FOR LATER VIEWING ON THE NIH AND THE BRAIN WEB SITES. DURING PRESENTATIONS, WE ASK THAT YOU MUTE YOUR LINE AND TURN OFF YOUR VIDEO WHEN NOT SPEAKING, WHICH MINIMIZES THE BACKGROUND DISTRACTIONS. DURING DISCUSSIONS, PLEASE TURN ON YOUR VIDEO AND USE THE RAISED HAND OPTION IF YOU HAVE A QUESTIONS AND WE'LL CALL ON YOU TO UNMUTE YOURSELF. FOR QUESTIONS YOU'D LIKE TO RAISE IN THE GROUP FOR GENERAL DISCUSSION, WE NEED YOU TO OPT FOR THIS RAISE-HAND FEATURE RATHER THAN TYPING THE QUESTION IN OUR ZOOM SO OUR VIDEO CAST ATTEND'S CAN HEAR AND SEE THE QUESTIONS. WE KNOW EVERYBODY IS BUSY AND WE APPRECIATE YOUR TIME AND YOUR VALUABLE INPUT TODAY. NONE OF THIS CAN HAPPEN WITHOUT THE REALLY FABULOUS TEAM WE HAVE HERE AT NINDS AND I WANT TO THANK Dr. NINA HSU FOR THIS WORKING GROUP AND Dr. SASS KA HENDRICKS, Dr. DUE PRAY FOR HIS SUPPORT IN NEUROETHICS AND THE IMPORTANT ROLE THAT NEUROETHICS PLAYS IN THE BRAIN INITIATIVE. SO I AM GOING TO TURN IT OVER TO THE CO-CHAIRS, CHRISTINE AND HANK, WHO CAN INTRODUCE JOHN AND CHAIR THE REMAINDER OF THE MEETING. >> GREAT. THANK YOU SO MUCH, ANDREA. WELCOME TO EVERYBODY AND I REITERATE WHAT ANDREA SAID THANKING YOU ALL FOR JOINING US AND SPENDING THE TIME ENGAGING IN THIS IMPORTANT WORKING GROUP. IT'S GREAT TO SEE YOUR FACES. I WISH I COULD SEE YOU IN-PERSON, BUT HERE WE ARE. HANK -- >> YOU ARE MUTED. FIRST TIME THIS WEEK I HAVE MANAGED TO MESS THAT UP. MAYBE THE FIRST TIME THIS MONTH. YOU THINK TWO AND A HALF YEARS INTO THE PANDEMIC I WOULD HAVE FIGURED THIS OUT. ANYWAY, I JOIN CHRISTINE IN WELCOMING AND I THINK I WILL TURN THINGS OVER TO OUR BRAIN DIRECTOR, JOHN NGAI. >> WONDERFULLY SUCCINCT. THANK YOU ALL FOR BEING HERE AND I APPRECIATE YOUR TIME AND EFFORT AND DEDICATION TO OUR MISSION. AND ALSO AGAIN, I'D LIKE TO ECHO ANDREA'S THANKS TO THE STAFF THAT MAKE EVERYTHING HAPPEN. I JUST HAVE A FEW BRIEF UPDATES TO GIVE. LET ME SEE IF I CAN SHARE MY SLIDE. ARE WE SEEING THE CORRECT SLIDE HERE? GREAT, WELL, I WILL START WITH A HUGE THANK YOU TO OUR CO-CHAIR Dr. HANK GREELEY FOR HIS SERVICE. HANK, YOU'VE BEEN INVOLVED WITH BRAIN FROM THE VERY BEGINNING I BELIEVE, 2014. IF WE HAD TERMS FOR SERVICE, IT WOULD BE TWO TERMS BUT OF COURSE WHEN YOU ARE APPOINTED IT WAS AN INDINDEFINITE SENTENCE. WE'RE LETTING YOU OUT FOR GOOD BEHAVIOUR AND WE'LL MISS YOU. I KNOW WHERE TO FIND YOU AND DON'T BE TOO PRICE SURPRISED IF SOMEONE TALKS WITH YOUR DOOR AT THE FARM WITH A BOTTLE TO CELEBRATE IN-PERSON. WE APPRECIATE ALL OF YOUR WISE COUNCIL, YOUR WILLINGNESS TO TAKE ON TOUGH ISSUES WITH US AND SPEND TIME WITH US TO HELP US MAKE BRAIN A BETTER ENTERPRISE. THANK YOU, VERY MUCH. >> IT'S BEEN A GREAT PLEASURE AND PRIVILEGE HANK IS CO-CHAIR AND A NEWG MEMBER AFTER THIS MEETING. AND SO, I CHECKED MY NOTES, YOU DID AGREE TO SERVE AS CO-CHAIR FOR ANOTHER YEAR. >> THAT WOULD BE AWKWARD IF I HADN'T BUT YES, I DID. >> WELL, WE HAVE A TRADITION OF CORNERING PEOPLE LIVE. BUT YEAH, SO, WE ARE WELCOMING NITA AS NEW CO-CHAIR. YOU'VE BEEN ON THE NEWG FOR QUITE A FEW YEARS. SHE HAS A REALLY DISTINGUISHED VERY WELL-EARNED REPUTATION AND DISTINGUISHED RECORD IN THE AREA OF BIOETHICS AND HER CREDENTIALS CAN YOU SEE HERE. BUT SHE'S BEEN A GREAT WISDOM, COUNCIL AND DEDICATE THE EFFORT LIFTING US ALL. WE STRIVE TO BE BETTER BECAUSE FOLKS LIKE NITA ARE PUSHING US TO DO THAT. I LOOK FORWARD TO WORKING WITH YOU AS CO-CHAIR AS I HAVE ENJOYED WORKING WITH YOU OVER THE PAST FEW YEARS. WELCOME AND THANK YOU FOR TAKING THIS ON AND WE'LL TRY NOT TO HAVE THIS ARE AN INDEFINITE SENTENCE AS WELL. WE'RE LEARNING OUR LESSONS THERE. >> I'M LOOKING FORWARD TO IT, THANK YOU. >> I JUST WANTED TO SAY THAT NITA IS LEAVING THE NINDS COUNCIL AND HANK WILL JOIN THE NINDS COUNCIL SO IT'S A REVOLVING DOOR. >> WE'RE TRADING PLACES. >> AND THERE ARE NO PLAYERS TO BE NAMED LATER. IT'S AN EVEN TRADE. WE VALUE BOTH EQUALLY. SO, THAT IS ONE DEPARTURE AND ONE WELCOME. I'M DELIGHTED TO WELCOME CAROLINE MONTOJO AS A NEW MEMBER. SHE'S TAKEN ON THE PRESIDENCY AND SHE SERVES AS C.E.O. OF THE DANA FOUNDATION AND SHE'S BEEN RESPONSIBLE FOR A IMPORTANT SHIFT IN THE DATA'S EMPHASIS ON NEUROSCIENCE WITHIN SOCIETY. HER NAME, FACE OR WORK HAS PROBABLY NOT A STRANGER TO ANY OF US HERE. SHE WAS PREVIOUSLY DIRECTOR OF LIFE SCIENCES AND THE DIRECTOR OF BRAIN INITIATIVES AT THE KAVLI FOUNDATION AND SHE'S AN ACTIVE VOICE AND FORCE WITHIN THE BRAIN INITIATIVE AS ONE OF OUR PARTNERS, BUT ALSO IN THE SPACE OF NEUROETHICS AND THE ETHICAL LEGAL SOCIETY IMPLICATIONS OF ALL WE DO. WE'RE DELIGHTED TO HAVE CAROLINE COME ON FORMALLY. IT'S A GREAT OPPORTUNITY TO WORK TOGETHER IN THIS CAPACITY. WE'VE SET ASIDE TIME FOR HER TO TELL US A BIT WHAT SHE'S DOING AND HOW SHE ENVISIONS THE FUTURE. WELCOME, WE'RE REALLY DELIGHTED TO HAVE YOU. THANK YOU FOR AGREEING TO SERVE. >>> SO I JUST WANTED TO GIVE A BRIEF UPDATE AND I THINK WE'LL GET INTO THIS LATER ABOUT A FEW EVENTS THAT HAVE HAPPENED SINCE WE LAST MET IN THE NEUROETHICS AND RELATED SPACE. WE HAD A NEWG WORKSHOP ON CONTINUING TRIAL RESPONSIBILITIES IN MAY. IT WAS A TWO-DAY PUBLIC WORKSHOP. IT WAS FOCUSED ON THE RESEARCH-RELATED CARE REQUIREMENTS SO IT'S MORE THAN REQUIREMENTS FOR PARTICIPANTS WHO ARE IN THESE CLINICAL TRIALS INVOLVING PRIMARILY THE IMPLANTABLE DEVICES, INVASIVE DEVICES. SO, IT REALLY IS A ISSUE OF CONCERN. WE LEARNED A LOT ABOUT THESE ISSUES, IT'S NOT JUST A MATTER OF WHAT HAPPENS A YEAR OR TWO AFTER A TRIAL ENDS, BUT WHAT WE LEARNED FROM SOME OF THE PARTICIPANTS WHO WERE PATIENTS THEMSELVES, WE WERE TALKING ABOUT DECADES. AND SO, WHAT ARE THE RESPONSIBILITIES, WHAT ARE THE NEEDS, WHO IS GOING TO TAKE ON THE POSSIBILITIES FOR THESE VITAL PARTNERS IN THESE EFFORTS WHO HAVE LITERALLY GIVEN PARTS OF THEIR LIVES TO FURTHERING THE SCIENCE AND SEEKING BETTER CURES, BETTER TREATMENTS. OF COURSE, WE'RE CONSTRAINED BY LOTS OF THINGS, INCLUDING LEGALITIES OF WHAT WE CAN OR CAN'T DO AND WE HAD STAKEHOLDERS FROM THE DIFFERENT SECTORS FROM GOVERNMENT SIDE AND INVESTIGATORS, THE INSTITUTIONS, THE HOSPITALS AND UNIVERSITIES, DEVICE MANUFACTURERS, INSURANCE COMPANIES, CMS AND WHAT HAVE YOU AND WE'RE TRYING TO NAVIGATE A WAY TO INSURE THAT THE FOLKS WHO ARE WILLING TO BE OUR HUMAN PARTNERS IN THE RESEARCH ACTUALLY ARE PROPERLY TAKEN CARE OF GIVEN THEIR COMMITMENT TO THE PROJECTS. SO THIS IS GOING TO BE AN ONGOING SERIES OF DISCUSSIONS BUT THIS WORKSHOP WAS REALLY VERY, VERY HELP TO HAVE US, I THINK TO ALL INVOLVED TO IDENTIFY THE AREAS AND JUST SEE WHO, WHAT WILL IT TAKE IN TERMS OF PARTNERSHIP AMONG ALL STAKEHOLDERS BEV TO HAVE A BETTER SET OF OUTCOMES. THAT WAS IN MAY. IN JUNE WE HAD THE EIGHTH ANNUAL BRAIN INITIATIVE MEETING THAT WAS GREAT. WE WERE HOPING TO HOLD THIS MEETING AS A HYBRID EVENT, BUT THE LOCAL COVID RATES PRECLUDED US FROM DOING SO BECAUSE WE COULDN'T HAVE FIT ALL THE PEOPLE WHO SIGNED UP INTO THE SPACE WE HAVE RESERVED. SO WE PIVOTED TO A VIRTUAL FORM A IT WAS A GREAT MEETING IN TERMS OF CONTENT AND INTERACTIONS THERE. IT WAS NOT A INSIGNIFICANT PART OF THIS MEETING WAS DEDICATED TO DISCUSSION OF NEUROETHICS ISSUES, INCLUDING THE IMPORTANCE AND THE IMPLICATIONS OF EXPANDING A HUMAN NEURO IMAGES STUDIES TO MORE DIVERSE PATIENT POPULATIONS AND THE PITFALLS OF DOING SO. THE ISSUES ABOUT AGENCY RESPONSIBILITY AND ACCESS TO NEUROTECHNOLOGY AND ISSUES ABOUT PRIVACY AND OTHER BEST PRACTISES. THIS IS ALL ON THE WEB IF YOU GO TO THAT LINK AT BOTTOM THERE, YOU CAN SIGN UP AND VIEW ALL THE CONTENT OF THESE ISSUES AS WELL AS THE PLENARIES AND ALL THE OTHER TALKS AND WE'LL HAVE ACCESS TO THAT MATERIAL THROUGH JUNE OF 2023. THERE WERE ALSO TWO CONGRESSIONAL BRIEFINGS THAT WERE FACILITATED BY THE AMERICAN BRAIN COALITION WITH A CONGRESSIONAL NEUROSCIENCE CAUCUS. THIS FIRST ONE WAS BACK IN MARCH OF 2022 THAT WAS CO-HOSTED BY THE ABC AS WELL AS THE BRAIN DONOR PROJECT AND WE TALKED ABOUT BRAIN DONATION IN THE RESEARCH THAT WE DO AND THE IMPORTANCE OF THIS FOR TREATING AND EVENTUALLY CURING HUMAN BRAIN DISEASE AND DISORDERS. THERE WAS A FAMILY MEMBER WHOSE HUSBAND, THEY DONATED HER HUSBAND'S BRAIN FOR RESEARCH AND OF COURSE, THE MODERATOR WAS Ms. TISH HEVEL AND WE COVERED HAVING DIVERSE REPRESENTATION IN THESE BRAIN DONOR BANKS SO WE CAN ACTUALLY GET BETTER INFORMATION THAT WILL HELP EVERYBODY WE WISH TO HELP THROUGHOUT SOCIETY AND THE REALIZATION THAT FOLKS IN THE FAMILIES WHO DONATE THEIR LOVED ONES' BRAINS FOR RESEARCH, ARE REALLY GIVING US A GREAT GIFT AND THAT'S NOT TO BE UNDER APPRECIATED BY ANYONE. SO THAT WAS ONE, A CONGRESSIONAL BRIEFING. THE OTHER, AGAIN, WAS SPONSORED BY THE AMERICAN BRAIN COALITION AND THE DANA FOUNDATION AS WELL AS OTHERS ON THE IMPORTANCE OF NEUROETHICS. AGAIN, IT WAS REALLY COVERING SOME VERY, VERY IMPORTANT GROUND. FEATURE PANELISTS WERE Dr. FINS FROM CORNELL WHO TALKS ABOUT STIMULATION IN TRAUMATIC BRAIN INJURY PATIENTS AND THEIR RECOVERIES AND RAISED SOME INTERESTING NEUROETHICS ISSUES. I TOOK AWAY THE TENSION BETWEEN WHAT THE PATIENT WANTS AND WHAT THE FAMILIES WANT ARE NOT NECESSARILY ALWAYS ALIGNED AND THIS HAS TO DO WITH ISSUES OF AGENCY AND AUTONOMY. THAT WAS QUITE INTERESTING. AND THEN WE HAD ANOTHER SET OF ANNALISTS, Dr. JAYATRI DAS AND Dr. CLAIRE WEICHESBAUM AND HIGHLIGHTED THE IMPORTANCE OF PUBLIC ENGAGEMENT IN NAVIGATING THESE TRICKY NEUROETHICS ISSUES AND POST TRIAL RESPONSIBILITIES BUT AGENCY AUTONOMY AND IN FACT, ONE OF THE NINE CORE GUIDING PRINCIPLES THAT I THINK THIS GROUP WORKED ON, IS PUBLIC ENGAGEMENT SO IT WAS A GOOD TO HELP NAVIGATE THESE ETHICAL LEGAL VOCATIONS IN A WAY THAT SOCIETY WILL ULTIMATELY ACCEPT. WITH THAT, I WILL TURN THE FLOOR OVER TO OUR CO-CHAIRS. >> THANK YOU, JOHN, FOR THAT GREAT INTRODUCTION AND UPDATE. IT'S MY PRIVILEGE TO WELCOME CAROLINE MONTOJO. THE PRESIDENT AND C.E.O. OF THE DANA FOUNDATION WHICH IS A PRIVATE PHILANTHROPIC ORGANIZATION TO ADVANCING UNDERSTANDING ABOUT THE BRAIN. SHE LEADS THE FOUNDATION, WHICH FOCUSES ON NEUROSCIENCE WITHIN OWE SOCIETY AND HOW NEUROSCIENCE REFLECTS AND INFORMS SOCIETY. SHE'S BEEN DEEPLY INVOLVED IN SEVERAL LARGE-SCALE NEUROSCIENCE INITIATIVES INCLUDING THE U.S. BRAIN INITIATIVE, AND THE INTERNATIONAL BRAIN INITIATIVE, AND SHE CONTRIBUTES TO PUBLICATIONS ON INTERNATIONAL NEUROSCIENCE AND NEUROETHICS IN A NUMBER OF FLORA AND SHE'S DID SHER ARE HER POSTDOC ORAL RESEARCH AT UCLA WHERE SHE FOCUSED ON INVESTIGATING NEURO BIOMARKERS FOR PSYCHIATRIC ILLNESS USING FUNCTIONAL MRI AND BEHAVIOURAL TECHNIQUES AND SHE RECEIVED EAR B.A. FROM UC BERKELEY AND A MASTERS AND PH.D AT JOHN HOPKINS UNIVERSITY. AND I CAN'T RESIST NOTING, ONE INDICATION OF HOW TALENTED AND SMART CAROLINE IS, IS THAT SHE SUCCESSFULLY RECRUITED CARA RAMOS TO BE HER V.P. WELCOME AND THANK YOU FOR JOINING US. IT WILL BE GREAT TO HAVE YOU HERE. >> THANK YOU FOR THAT INTRODUCTION AND THANK YOU JOHN AND HANK AS WELL. ALSO, THANKS TO THE ENTIRE NIH BRAIN INITIATIVE NEUROETHICS WORKING GROUP. IT'S SO EXCITING. IT'S A DELIGHT AND REALLY HUMBLING TO BE JOINING THE NEW, ESPECIALLY SINCE MY LEARNINGS ABOUT NEUROETHICS FROM THE NEWG HAVE BEEN QUITE INFLUENTIAL IN MY THINKING OVER THESE YEARS. CHRISTINE, WE ARE DELIGHTED TO HAVE CARA RAMOS AT THE DANA FOUNDATION SO I THANK THE NEWG FOR HAVING HER JOIN US AND CONTRIBUTING TO OUR STRATEGIC DEVELOPMENT HERE WHICH YOU WILL HEAR ABOUT TODAY. I'M GOING TO SHARE MY SLIDES. SO, LET ME JUST -- I'LL GO BACK TO THE BEGINNING. SO, FOR TODAY, I'LL SHARE A LITTLE BIT ABOUT MYSELF, MY ENTRY INTO THE NEUROETHICS AREA THROUGH SCIENCE PHILANTHROPY AND SO, FIRST UP, I'LL SHARE A LITTLE BIT ABOUT MY BACKGROUND AS CHRISTINE HAD MENTIONED. MY NAME IS CAROLINE MONTOJO AND I'M PRESIDENT AND C.E.O. OF THE DANA FOUNDATION, WHICH IS A PRIVATE PHILANTHROPIC ORGANIZATION BASED IN NEW YORK CITY THAT WAS FOUNDED IN 1950 BY CHARLES A. DANA. HE WAS A LEGISLATURE, INDUSTRIALIST AND PHILANTHROPIST. THE DANA FOUNDATION HAS A HISTORY IN THE 1950s THROUGH 1990s OF FOCUSING ON EDUCATION AND TRAINING AT SMALL INDEPENDENT COLLEGES, SUPPORTING DIVERSITY IN ACADEMIC INSTITUTIONS AND FUNDING HEALTH PRIMARILY THROUGH CANCER RESEARCH. AND THEN IN THE 1990s, THE FOUNDATION FOCUSED ITS PHILANTHROPY ENTIRELY ON NEUROSCIENCE RESEARCH AND OUTREACH WITH THE SIGNATURE PROGRAMME BEING BRAIN AWARENESS WEEK, WHICH MANY OF OF YOU ARE WELL FAMILIAR WITH TO FOSTER ENTHUSIASM AND SUPPORT FOR BRAIN SCIENCE. AND AS CHRISTINE MENTIONED, JUST LAST YEAR, THE FOUNDATION ENTERED INTO A NEW CHAPTER IN ITS HISTORY FOCUSING ON THE INTERSECTION OF NEUROSCIENCE AND SOCIETY. AND SO, AS WE MOVE FORWARD, OUR NEW MISSION IS TO ADVANCE NEUROSCIENCE THAT BENEFITS SOCIETY AND REFLECTS THE ASPIRATIONS OF ALL PEOPLE. I ALSO AM HAPPY TO SHARE JUST AS OF LAST YEAR, THE DANA FOUNDATION JOINED THE BRAIN INITIATIVE ALLIANCE, WHOSE MISSION IS TO COORDINATE AND FACILITATE COMMUNICATIONS FROM ITS MEMBERS RELATED TO THE BRAIN INITIATIVE. TODAY JOHN AND NITA ASKED ME TO SHARE ABOUT THE NEUROETHICS WORK I'VE BEEN INVOLVED IN AND PROVIDE A INTRODUCTION TO THE DANA FOUNDATION'S NEW MISSION IN NEUROSCIENCE AND I WILL FOCUS ON THE DANA FOUNDATION IN THE LATTER PART OF MY REMARKS. >> AM I ADVANCING FOR YOU? >> OK. >> SO HERE IS THE OUTLINE OF THE TALK THAT I'LL GIVE TODAY. FIRST, I'M GOING TO SHARE ABOUT HOW I GREW AN INTEREST IN NEUROETHICS. THIS IS LARGELY INSPIRED BY HOW THE LARGE-SCALE BRAIN INITIATIVES, AROUND THE WORLD, HIGHLIGHTED THE IMPORTANCE OF ETHICAL AND SOCIETAL CONSIDERATIONS IN NEUROSCIENCE. AND THEN, FROM THAT WORK WITH THE BRAIN INITIATIVES, IT STARTED TO BE CLEAR THAT THERE ARE MANY FACETS TO THIS NEED TO ADDRESS ETHICAL, LEGAL AND SOCIETAL ISSUES IN NEUROSCIENCE. THESE INCLUDE PUBLIC UNDERSTANDING, AND ENGAGEMENT WITH NEUROSCIENCE AND ALSO THE NEEDS FOR CHANGES AND HOW NEUROSCIENCE RESEARCH IS TAUGHT AND CONNECTED. AND SO TODAY I'M GOING TO BE FOCUSING REALLY MORE ON THE BUY-DIRECTIONAL ENGAGEMENT ASPECT. I'M GOING TO TALK ABOUT THE NEXT CHAPTER OF THE DANA FOUNDATION. I'M GOING TO DESCRIBE HOW WE AT DANA, ARE WORKING TO CATALYZE CHANGE THROUGH THE NEXT CHAPTER, WHICH FOCUSES ON NEUROSCIENCE AND SOCIETY SO I'M LOOKING FORWARD TO SHARING ALL OF THESE DEVELOPMENTS WITH YOU. SO, FOR THE FIRST POINT, TALKING A LITTLE BIT ABOUT THE BEGINNING OF MY JOURNEY IN NEUROSCIENCE AND SOCIETY, THIS FIRST STEP IN MY JOURNEY AND THE RECOGNITION BY NEUROSCIENCE AND NEURO TECHNOLOGY WERE ADVANCING QUICKLY AND THEY WERE ADVANCING IN SUCH EXCITING WAYS THAT OFTEN CARRIES SIGNIFICANT ETHICAL, LEGAL AND SOCIETAL IMPLICATIONS. AND NOW LOOKING BACKWARDS IN 201, AND ONWARD IN THE U.S., AS WELL AS EUROPE, JAPAN, AND MANY OTHER COUNTRIES, THEY BEGAN TO LAUNCH OR DESIGN LARGE-SCALE NATIONALLY SPONSORED BRAIN INITIATIVES. AND AT THE TIME, I WAS STILL AT THE FOUNDATION WHICH PLAYED A CATALYST ROLE IN THE U.S. AND INTERNATIONAL BRAIN INITIATIVES. AND BACK IN 2016, IN THIS PICTURE YOU SEE HERE, CORY BAGMAN AND RAFFE CONVENED THE LEADERS OF THIS INITIATIVES AND ASKED THEM ABOUT THEIR HIGHEST PRIORITY AREAS. THAT WERE COMMON CHALLENGE AND POTENTIAL COLLABORATIVE OPPORTUNITIES. AND A YEAR AFTER THAT CONVENING, THERE WAS AN ARTICLE THAT CAME OUT IN "SELF" AND YOU CAN ACCESS THIS OPEN ACCESS AND IT DESCRIBED THE HIGH PRIORITY AREAS THAT EMERGE FROM THE CONFERENCE AND ONE QUOTE YOU SEE FROM THAT PAPER IS THAT THE ETHICAL QUESTIONS RAISED BY NEURO TECHNOLOGIES ARE INTERNATIONAL QUESTIONS. THEY CAN CARRY MORE ETHICAL, LEGAL OR SOCIAL WEIGHT BECAUSE THE ACTIVITY OF OUR BRAINS LEADS TO OUR INNER MOST SELVES. ETHICAL AND SOCIETAL QUESTIONS ARE NOT FOR EXPERTS ALONE AND THE DISCOVERIES IN BRAIN SCIENCE ABOUT EFFECT THE POPULATION AS A WHOLE. THERE WAS A LOT IN THAT STATEMENTS AND A LOT IN THAT MEETING AND GIVEN THAT CLEAR CALL FOR COLLECTED ACTION ON NEUROETHICS, THROUGH THE MINISTRY OF SCIENCE AND THE BRAIN RESEARCH INSTITUTE TO BRICK EACH BRAIN INITIATIVE TOGETHER. AND SO, THIS GLOBAL NEUROETHICS SUMMIT IS LED BY KAREN RONMELLANR AND ALSO BID SO I SUNG-JIN JEONG. AND WHAT THE GNS FOCUSED ON WAS VALUES IN CULTURE AND NEUROETHICS. UNDERSTANDING THAT EACH OF THESE DETERMINED WHAT KIND OF SCIENCE HAPPENS AND WHERE IT CAN HAPPEN. JUST IN 2019, THIS GROUP THAT GNS PUBLISHED A SPECIAL ISSUE ON PRACTISING NEUROETHICS AND THE CONTEXT OF EACH OF THESE LARGE-SCALE BRAIN INITIATIVES AND THIS REPRESENTS THE FIRST OF ITS KIND OF SPECIAL ISSUE AND A HIGH-IMPACT NEUROSCIENCE JOURNAL BACK IN 2019. AND SO IF YOU CHECK OUT THESE PAPERS, YOU CAN READ MORE ABOUT HOW EACH INITIATIVE CONSIDERED KEY NEUROETHICS QUESTIONS. THIS SET OF PAPERS MARKED THE CULTURAL SHIFT WITHIN THE NEURO SCIENTIFIC COMMUNITY, DEMONSTRATING THE NECESSITY, THE VALUE OF NEUROETHICS WITHIN THE NEUROSCIENCE ENTERPRISE. AND THROUGH THIS GNS WORK, ONE OF THE MOST IMPORTANT NEEDS THAT STARTED TO SURFACE THROUGH OUT THESE CONVERSATIONS, IS THAT OF WHAT IS CALLED BUY-DIRECTIONAL PUBLIC ENGAGEMENT ON NEUROETHICS ISSUES. THERE'S A PAPER ACTUALLY IN PREPARATION THAT DESCRIBES HOW THE GMS EXPLORED THE ROLE AND POSSIBLE GOALS OF PUBLIC ENGAGEMENT ON HOT TOPICS IN NEUROSCIENCE. AND SO, MOVING INTO PUBLIC ENGAGEMENT, I'LL FAST FORWARD IN TIME OF IT TO PROVIDE ONE CON CREE EXAMPLE OF A CALL FOR PUBLIC ENGAGEMENT JUST FROM THE LAST YEAR. THE DANA FOUNDATION, ALONG WITH THE U.S. NATIONAL INSTITUTES OF HEALTH, CO FUNDED A CONSENSUS STUDY REPORT ON THE EMERGING FIELD OF HUMAN NURRAL ORGANOIDS TRANSPLANTS AND THIS NATIONAL ACADEMY'S REPORT FOCUSED ON THE STATE OF THE SCIENCE, ETHICS AND GOVERNANCE OF THESE MODELS FOR STUDYING THE BRAIN. THIS REPORT IS AVAILABLE FOR FREE DOWNLOAD. THERE WAS A SECTION OF WHEN NEW SCIENCE AND TECHNOLOGY IS DEVELOPED AND INTERESTINGLY IN THEIR REPORT, THE AUTHORS ALSO STATED THAT THE UNITED STATES CURRENTLY LACKS EFFECTED MECHANISMS TO CARRY AND FACILITATOR CORY OUT PUBLIC ENGAGEMENT AT THE NATIONAL LEVEL. AND ONE THING TO TAKE THIS CONCEPT OF PUBLIC ENGAGEMENT, A BIT DEEPER, PUBLIC ENGAGEMENT HAS BEEN USED TO DESCRIBE A VARIETY OF DIFFERENT ACTIVITIES AND I THINK IT'S IMPORTANT TO CLEARLY DEFINE THE GOALS OF PUBLIC ENGAGEMENT AND THERE'S VALUE TO ALL OF THESE DIFFERENT GOALS. ONE PAPER THAT HAS BEEN INFLUENTIAL IN MY OWN THINKING COMES FROM THE UNIVERSITY OF WISCONSIN MADISON AND HIS CO-AUTHORS WHO PUT OUT A PNAS PAPER ABOUT WHAT WE KNOW ABOUT EFFECTIVE PUBLIC ENGAGEMENT ON CRISPR AND BEYOND. IT OFFERS A NICE FRAMEWORK FOR SEVEN EXQUISITE GOALS THAT PROGRAMMES CAN SET FOR PUBLIC ENGAGEMENT. THESE GOALS ARE ORDERED BASED ON THE EXTENT TO WHICH DIVERSE PUBLIC AUDIENCES ARE ENGAGE. THIS CAN RANGE FROM A CONTROVERSY, TO MEANINGFULLY PROVIDING INFLICT OF POLICY. SO, AT THE VERY BEGINNING OF THIS LADDER, THEY DESCRIBED ONE GOAL MIGHT BE SIMPLY AVOID POTENTIAL CONTROVERSY, THIS IS OFTEN AN IMPLICIT GOAL IN ORDER TO PROMOTE THE ADOPTION OF A NEW TECHNOLOGY. ADVANCING IN THE LATTER. ANOTHER GOAL IS TO EDUCATE THE PUBLIC. THIS IS AN AREA THE DANA FOUNDATION HAS BEEN INVOLVED IN AND MANY OTHERS HAVE BEEN INVOLVED IN IN BRAIN AWARENESS WEEK AND OTHER INITIATIVES AT VARIOUS UNIVERSITIES AND ORGANIZATIONS. NOW, I DON'T HAVE TIME TO DESCRIBE EACH OF THESE, BUT YOU CAN CERTAINLY READ MORE IN THE PAPERS AS WELL. THE AREAS THAT WE AT DANA FOUNDATION ARE ESPECIALLY INTERESTED IN FOR OUR FUTURE WORK, ARE THOSE IN WHICH DIVERSE PUBLICS MIGHT MEANINGFULLY PROVIDE INPUT FOR A DECISION-MAKING, OR INFORMED POLICY. SO FOR EXAMPLE, IN THE GOAL OF ENABLING RESPONSIBLE INNOVATION, PUBLIC ENGAGEMENT COULD BE USED TO HELP INFORM THE RESEARCH ENTERPRISE, PERHAPS FOR THE TYPES OF RESEARCH QUESTIONS THAT ARE ASKED OR HOW THE METHODS ARE APPROACHED IN A RESEARCH DESIGN T COULD HELP PROVIDE OR MAXIMIZE POSSIBLE SOCIETAL RETURNS FROM INVESTMENTS IN SCIENCE. SO IT'S ONE WAY TO LOOK AT THIS RANGE OF GOALS. ALL RIGHT. SO I THINK THAT NOW IT'S ABOUT THE HALFWAY POINT SO I'M GOING TO SUMMARIZE WHAT WE COVERED UP TO THIS POINT. I SHARED THE RECENT DEVELOPMENT IN THE NEUROSCIENCE LANDSCAPE THAT PROMPTED BY LOOK AT NEUROETHICS ISSUES IN THE SUMMIT. THIS LEAD TO A DEEPER DIVE INTO THE IMPORTANCE OF PUBLIC ENGAGEMENT ON NEUROETHICS ISSUES AND ALSO THE IMPORTANCE OF CLEARLY IDENTIFYING THE GOALS OF ENGAGEMENT AT THE OUTSET OF THE PROGRAMME. AND THEN, FOR THIS LAST PART OF MY IT TALK, I'M GOING TO TALK ABOUT THE FUTURE OF THE DANA FOUNDATION. THIS NEXT CHAPTER AND I WANT TO ALSO NOTE BEFORE I GO INTO IT THAT WE'RE GOING THROUGH A REBRANDING PROCESS CURRENTLY SO THE LANGUAGE AND THE VISUALS YOU WILL SEE ARE STILL IN REFINEMENT BUT I HOPE IT GIVES A SENSE WE ARE WE'RE HEADED. ALL RIGHT. SO, OUR FUTURE LOOKING VISION AT THE DANA FOUNDATION, IS BRAIN SCIENCE FOR A BETTER FUTURE. AND WHAT WE ENVISION IS A FUTURE WHERE, NEUROSCIENCE BO INFORMS D REFLECTS SEW SIGH THEME LISTENING AND RESPONDING TO PEOPLE OF ALL AGES, BACKGROUNDS AND CULTURES, AS WELL AS PROFESSIONALS FROM OTHER DISCIPLINES, WE BELIEVE THE FIELD WILL HELP IMPROVE THE LIVES OF INDIVIDUALS AND COMMUNITIES. WE ALSO THINK THAT NEUROSCIENCE WILL BE BETTER UNDERSTOOD AND VALUED BY THE PUBLIC. A NEW GENERATION OF NEURO SCIENTISTS WILL BE EQUIPPED TO PUSH THE FIELD INTO NEW FRONTIERS. THEY'LL BE TRAINED WITH AN APPRECIATION FOR AND KNOWLEDGE OF OTHER DISCIPLINES. AND WHEN IT WILL BE A DRIVING FORCE FOR A HEALTHIER WORLD THAT LIVES TO ITS HIGHEST IDEALS OF EQUITY AND JUSTICE. SO THAT IS THE BIG VISION. NOW I'LL TALK ABOUT THE BUILDING BLOCKS TO GET THERE AND OUR MISSION IS TO ADVANCE NEUROSCIENCE THAT BENEFITS THE SOCIETY AND REFLECTS THE ASPIRATIONS OF ALL PEOPLE SO WE REALLY FOCUS ON THE CONNECTIONS BETWEEN NEUROSCIENCE AND SOCIETY CHALLENGES AND OPPORTUNITIES AND WORK TO MAXIMIZE THE POTENTIAL OF THE FIELD TO DO GOOD. AND WE FULFILL THIS MISSION THROUGH THREE KEY PROGRAMME PILLARS. THIS STRATEGY FOR THE PROGRAMME IS LED BY CARA RAMOS WHO IS FANTASTIC AND BUILT THE NEUROETHICS FOR THE U.S. BRAIN INITIATIVE. SO NOW DIVING IN TOUR PILLARS, THE FIRST IS THE DANA EDUCATION PROGRAMME DRAWING FROM OUR ROOTS STEMMING BACK TO THE 1950s BUT DIVING VERY DEEPLY INTO THE EDUCATION AND OUTREACH WORK IN NEUROSCIENCE FROM THE 90s ONWARD AND THE GOAL HERE IS TO STRENGTHEN NEUROSCIENCES POSITIVE ROLE IN THE WORLD AND SPARKING CENTRE AND EDUCATION AROUND NEUROSCIENCE AND THE MANY WAYS THAT IT INTERFACES WITH OUR DAILY LIVES. AND THIS PROGRAMME IS LED AT THE DANA FOUNDATION BY KATHLEEN ROWNEA WHO IS THE DIRECTOR OF EDUCATION. THE NEXT PILLAR IS THAT OF THE DEAN AND NEXTGEN PROGRAMME. THE GOAL IS TO STRENGTHEN THE POSITIVE ROLE IN THE WORLD BY DEVELOPING A NEW GENERATION OF INTER DISCIPLINARY EXPERTS WHO SHEPPARD NEUROSCIENCE USES FOR A BETTER WORLD. WE ANTICIPATE DOING A FEW THINGS UNDER THIS PILLAR, SUPPORTING TRAINING PROGRAMMES, SEEDING CROSS DISCIPLINARY COLLABORATIVE WORK AND ALSO AIMING TO GROW A NEW FUTURE LEADERS TO SHEPPARD NEUROSCIENCE FOR A BETTER WORLD. THIS PROGRAMME, AT DANA, IS LED BY GUPTA THE PROGRAMME OFFICER, HE IS A FORMER COLLAB TO BE AT THE UNIVERSITY OF WASHINGTON AND HE JUST PRESENTED THE POST TRIAL RESPONSIBILITY AND WE'RE HAPPY TO HAVE HIM WITH AS WELL. WE CALL IN THE DANA FRONTIER PROGRAMME AND THE GOAL SCHEER TO STRENGTHEN NEUROSCIENCES POSITIVE ROLE IN THE WORLD BY GROWING CAPACITY FOR INFORMED PUBLIC REFLECTION ON EMERGING NEUROSCIENCE AND NEURO TECHNOLOGY AND THERE ARE A FEW OBJECTIVES UNDER THIS PILLAR. I'M GOING TO SHARE AN EXAMPLE OF THIS TODAY JUST IN THE INTEREST OF TIME. BUT WE REALLY HOPE THAT WE CAN INCREASE OUR UNDERSTANDING AND DELIBERATION ON THESE NEW SCIENCE ADVANCES, AMONG PROFESSIONALS WHO ARE ALREADY INTERFACE WITH NEUROSCIENCE AS WELL AS OTHER SECTORS OF THE PUBLIC. WHO TOUCH CLOSELY UPON NEUROSCIENCE. THIS PROGRAMME IS LED BY PAULA CROXEN WHO JUST JOINED US LAST WEEK AND SHE WAS PREVIOUSLY THE DIRECTOR OF PUBLIC PROGRAMMES AT THE ZUCKERMAN INSTITUTE SO WE'RE BUILDING PILLARS AND WE'RE BUILDING PROGRAMMES AND YOU MIGHT WANT TO THINK ABOUT THIS, ONE WAY TO THINK ABOUT THIS IN A SIMPLIFIED WAY IS THESE NEW PILLARS THAT I SHOW HERE, COULD REPRESENT TWO ENDS OF THE SAME SCIENCE PIPELINE. YOU HAVE THE PEOPLE WHO DO THE SCIENCE, TOUCH UPON THE SCIENCE AND THE PEOPLE WHO USE THE SCIENCE. AND THE IMPORTANTLY WE SEE THERE'S A BY-DIRECTIONALITY BOTH OF FEED FORWARD AS WELL AS FEEDBACK WARDS, CIRCULATION OF INFORMATION WITHIN THIS PIPELINE. AND SO, WITH THAT, I HOPE THAT PROVIDES A BIT OF A FOUNDATION FOR SOME PROGRAMMES THAT FALL UNDER THESE PILLARS AND THE FIRST I'LL SHARE ABOUT FALLS UNDER THE DANA EDUCATION PILLAR, WHICH YOU WILL REMEMBER THE GOAL BEING TO SPARK INTEREST IN EDUCATION AROUND NEUROSCIENCE AND THE WAY IT INTERFACES WITH OUR LIVES AND IT'S A ILLUSTRATIVE EXAMPLE OF THIS. IT BEGAN IN 1996 BY THE DANA ALLIANCES FOR BRAIN INITIATIVES AND THE EUROPEAN DANA ALLIANCE FOR THE BRAIN AND IT IS A CAMPAIGN THAT IS COORDINATED BY THE DANA FOUNDATION. AND SO, JUST IN THE INTEREST OF TIME, YOU CAN READ MORE ABOUT THIS THROUGH THE BRAIN AWARENESS WEEK WEBSITE. WE PARTNER CLOSELY WITH THE FEDERATION OF EUROPEAN NEUROSCIENCE SOCIETY AS WELL AS THE INTERNATIONAL BRAIN RESEARCH ORGANIZATION FOR ANYONE OUT THERE WHO IS INTERESTED IN POTENTIALLY HOSTING, PARTNERING ON THIS, THESE CALL FOR PROPOSALS, WILL GO OUT THIS COMING FALL FROM THOSE FENS AND IBRO. THEY COVER COUNTRIES OUTSIDE OF NEURO SO CHECK THAT OUT. AND NOW FOR AN EXAMPLE OF A PROGRAMME WITHIN THE DANA NEXTGEN PILLAR. THIS IS VERY KNEW AND HOT OFF THE PRESSES AND WE'RE ACTUALLY IN A REVIEW PERIOD FOR THIS FIRST LAUNCH OF A REQUEST FOR PROPOSALS. IN MAY, WE LAUNCHED AN RFP FOR A DANA CENTRE IN NEUROSCIENCE AND SOCIETY. AND WE SEE THIS INTE CENTRE BEIY COMMITTED TO INTER DISCIPLINARY TRAINING IN NEUROSCIENCE THAT ENGAGES IN RESEARCH WITH AN EYE TOWARDS ADDRESSING PRACTICAL ISSUES RAISED BY NEUROSCIENCE AND WE SEE THESE CENTRES ACTING AS CATALYTIC HUBS WHERE MULTI-DISCIPLINARY SCHOLARS CAN GATHER TO LEARN AND EXCHANGE IDEAS, AND GORGE COLLABORATIONS, WE RECEIVED A ROBUST CALL FOR PROPOSALS THAT FAR EXCEEDED OUR EXPECTATIONS IN TERMS OF NUMBER AND QUALITY SO WE'RE IN A DEEP REVIEW PROCESS FOR THESE PROPOSALS BUT I HOPE IT ILLUSTRATES THE SPIRIT OF THE TYPES OF PROGRAMMES WE HOPE TO LAUNCH UNDER THIS DANA NEXTGEN PROGRAMME. AND FINALLY, AS AN ILLUSTRATION OF OUR THIRD D PILLAR, I'LL SHAT THIS EXAMPLE WHICH WAS A FOLLOW ONTO THE CALLS AND THE RECOMMENDATIONS THAT WERE PROVIDED IN THAT NATIONAL ACADEMY REPORT ON TRANSPLANTS AND ORGANOIDS I SHARED ABOUT. FOR NEW APPROACHES TO BIDIRECTIONAL PUB ENGAGEMENT WITH A FOCUS ON NEURAL ORGANOIDS AND BRAIN DATA PRIVACY. YOU SEE A FEW OF THE PEOPLE THAT JOHN MENTIONED EARLIER FROM A NEUROSCIENCE BRIEFING THAT TOOK PLACE ON THE IMPORTANCE OF NEURO ETH PICK AND THIS TEAM HERE INCLUDING CLAIRE, RAE AND JAYEHI AND DARYL ARE WORKING ON DEVELOPING NEW MODELS FOR ENGAGEMENT AND THE NEXT STEP WITH THEIR WORK, THEY'RE GOING TO COLLABORATE WITH A SMALL COHORT OF THE NATIONAL INFORMAL STEM EDUCATION NETWORK TO TEST AND EVALUATE THE ENGAGEMENT ACTIVITIES THAT THEY'RE DEVELOPING AT DIFFERENT SITES. SO, THAT'S AN ILLUSTRATION. THE FOUNDATION AIMS TO PARTNER WITH ORGANIZATION TO STRENGTHEN AND GROW NEUROETHICS AS A WHOLE. WHAT WE'RE DOING THIS YEAR IS PARTNERING WITH THE INTERNATIONAL NEUROETHICS SOCIETY ON THEIR CONFERENCE AND IT MARKS THE 20th ANNIVERSARY OF THE DANA FOUNDATION'S LANDMARK MEETING ON NEUROETHICS MAPPING THE FIELD WHICH WAS CONSIDERED BY MANY TO BE THE BIRTH OF NEUROETHICS AND THE GENESIS OF THE INS. SO, I HAVE HERE LISTED THE DATES THAT A PLUG FOR THE MEETING AND AS WELL AS A COUPLE OF THE SESSIONS THAT YOU MAY WANT TO CHECK OUT. TAKING BOTH RETROSPECTIVE VIEW AND PROSPECT AND PAUL WILL BE A MODERATOR AND THAT SESSION AND YOU SEE ON THE LEFT AND ON THE RIGHT IS A DANA SEMINAR IN NEUROSCIENCE AND SOCIETY. WHERE DO WE GO? WHAT IS THE FUTURE OF THE FIELD LOOKS LIKE? WE HAVE MEMBERS OF THE GROUP HERE INCLUDING WINSTON CHIONG THAT WILL SPEAK AS PART OF THIS PANEL. SO OUR WORK AS WE MOVE FORWARD, IS GOING TO BE VERY MUCH COLLABORATIVE IN PARTNERSHIP-BASED. WE REALLY SEEK TO HELP THOSE WHO ARE ABLE TO REACH OUT TO SCHOLARS AND OTHERS IN THE FIELD TO STRENGTHEN THEIR WORK. AND SO JUST A COUPLE OF FINAL POINTS HERE. ONE IS THAT WE WANT A TO HEAR FROM YOU. AS WE FORGE AHEAD IN OUR NEW MISSION, WE CONTINUE TO SEEK COMMUNITY AND STAKEHOLDER INPUT TO FURTHER REFINE OUR OWN PROGRAMMATIC STRATEGY. ONE WAY TO INVITE THIS INPUT IS THROUGH CONVERSATIONS WITH DANA STAFF MEMBERS AND SO THE DANA FOUNDATION IS GOING TO HOST SAY SATELLITE SOCIAL EVENT AT THE UPCOMING SOCIETY FOR NEUROSCIENCE CONFERENCE IN SAN DIEGO THIS YEAR AND TO HEAR IDEAS AND NEEDS FOR TRAINING INTER DISCIPLINARY TRAINING IN NEUROSCIENCE AND SOCIETY. YOU CAN FIND MORE ABOUT THIS PROGRAM IN THE PRELIMINARY PROGRAM FOR NEUROSCIENCE SFN AND WE INVITE YOU TO CHAT WITH US IN AN INFORMAL CONTEXT SO WE CAN HEAR FROM YOU, ESPECIALLY THIS IS AN INVITATION TO TRAINEES OR THOSE WHO ARE INVOLVED IN NEUROSCIENCE TRAINING PROGRAMS. ALL RIGHT. AND SO THIS IS MY FINAL SUBSTANCE SLIDE WHICH IS ALSO AN INVITATION FOR COLLABORATION, OPPORTUNITIES FOR COLLABORATION, PERHAPS BETWEEN THE NIH BRAIN INITIATIVE AND DANA FOUNDATION. I THINK THERE ARE MANY SHARED INTERESTS BETWEEN ORPHANEDDATIOD FOR EXAMPLE, THE BRAIN INITIATIVE CHALLENGE FOR HIGH SCHOOL STUDENTS TO EXPLORE ETHICAL ISSUES IN NEUROSCIENCE ALIGNS CLOSELY WITH THE DANA FOUNDATION'S EDUCATION GOALS I DESCRIBED EARLIER. AND AS ANOTHER EXAMPLE, THE BRAIN INITIATIVES EFFORTS TO INTEGRATE NEURO ETHICS INTO NEUROSCIENCE ALIGNED WITH OUR WORK IN THE DANA CENTER TO SUPPORT CAT A LID I CA CATALYTI. SOME IDEAS FOR THIS, WE COULD ENVISION THAT AT THE CENTERS WHERE THERE'S GOING TO BE SEED FUNDING PROVIDED FOR INTER DISCIPLINARY PROJECTS, PERHAPS THESE PROJECTS COULD PRODUCE PRELIMINARY DATA THAT COULD BE PARLAYED INTO AN NIH NEUROETHICS RO1 GRANT FOR EXAMPLE OR SIMILARLY OUR SUPPORT FOR NEUROETHICS PROGRAMS COULD BE SUPPORTING NEUROETHICS TRAINING WITH THE HOPE THAT AN AGENCY, MIGHT ONE DAY LAUNCH T32 AND THESE ARE JUST SOME EXAMPLES, SOME WAYS THAT WE THINK ABOUT PUBLIC-PRIVATE PARTNERSHIPS AND SO HOPEFULLY THAT CAN BE SOME FODDER FOR FURTHER DISCUSSION AND COLLABORATION. AND SO WITH THAT, I JUST WOULD LIKE TO THANK YOU, AGAIN, I THANK THE NEW WORKING GROUP FOR THE INVITATION TO SPEAK TODAY AND I ENCOURAGE YOU TO VISITS OUR WEBSITE TO STAY IN THE KNOW ABOUT NEWS AND OPPORTUNITIES. I LOOK FORWARD TO COLLABORATION WITH THIS GROUP AND THE BRAIN INITIATIVE TO STRENGTHEN NEUROSCIENCE'S ROLE IN THE WORLD. THANK YOU. >> THANK YOU, VERY MUCH Dr. MONTOJO. EXCITING THINGS THE DANA FOUNDATION IS DOING UNDER YOUR LEADERSHIP AND I THINK THERE WILL BE SOME OPPORTUNITIES FOR COLLABORATION BETWEEN THINGS THAT WE'RE WORKING ON AND WE'RE THRILLED TO HAVE YOU AS A MEMBER OF THE NEWG AS WELL. WE HAVE TIME FOR SOME QUESTIONS OR COMMENTS. WHILE YOU ARE THINKING OF WHAT YOU WANT TO ASK, I WANT TO NOTE THAT Dr. WHITE HAS PUT A COUPLE OF LINKS IN THE CHAT THAT ARE VERY USEFUL IF YOU ARE INTERESTED IN FOLLOWING UP ON SOME OF THOSE. OPPORTUNITIES. JIM -- >> THANK YOU, CHRISTINE. THANK YOU, CAROLINE. IT WAS REALLY NICE TO SEE HOW THE DANA FOUNDATION IS DEVELOPING AND ADVANCING IT'S ALREADY REALLY IMPORTANT MISSION. WITH THAT IN MIND, AS YOU ARE THINKING ABOUT THE NEW DIRECTION, NEW EMPHASIS FOR THE DANA, DO YOU HAVE MORE THOUGHTS HOW TO ENGAGE THE RESEARCHERS THEMSELVES, IN THINKING ABOUT NEUROETHICS AND REALLY BECOMING MORE INVOLVED IN THINKING ABOUT SOCIETAL IMPACT AND EDUCATION AND REALLY GETTING THEM MORE IN SYNCH WITH WHAT YOU ARE THINKING ABOUT. >> YES. THIS IS SOMETHING THAT OUR PROGRAMMATIC DEAL AS WELL AS MEMBERS ON THIS CALL ARE ACTIVELY TALKING ABOUT. ONE OF OUR PRIORITIES AT THE DANA FOUNDATION IS BEING ABLE TO GROW A NEW GENERATION OF INTER DISCIPLINARY EXPERTS WHO CAN REFLECT ON ETHICAL AND SOCIETAL ISSUES IN NEUROSCIENCE. SO AS FAR AS IDEAS GO, THERE ARE A FEW DIFFERENT WAYS IN WHICH WE'RE STARTING TO PILOT AND TACKLE SOME OF THE GAPS THAT WE SEE RIGHT NOW. I THINK ONE OF THE FIRST IS THE IMPORTANCE OF DESIGNING AND LAUNCHING INNOVATIVE TREATMENT PROGRAM THAT CAN GO FAR BEYOND THE KINDS OF INTERNET MODULES ON RESPONSIBLE CONDUCT AND RESEARCH TRAINING THAT MANY OF US, WHO GREW IN THE SIGNS FIELD WERE EXPOSED TO BUT, YOU KNOW, DIDN'T COVER THE LANDSCAPE OF ETHICAL SOCIETAL ISSUES IN WAYS THAT ARE INTEGRATED AND RELATE TO THE SCIENCE THAT WE'RE DOING AT THE BENCH IN OUR LABS. SO, I THINK THAT BEING ABLE TO INTEGRATE THIS INTO NEUROSCIENCE CURRICULA IN A MORE SYSTEMATIC, AS WELL AS A DEEPLY MEANINGFUL AND ENGAGING WAY. NOT UNI DIRECTIONAL BUT MORE OF THE ENGAGE DEBATE, DIALOGUE DISCUSSION, CASE STUDY FROM THAT COULD BE REALLY USEFUL. THERE ARE SOME OF THESE COMPONENTS AND THERE'S A STRONG CULTURAL COMB UPON COMB PHONE A. THERE'S STILL A LOT TO BE BUILT IN TERMS OF UNDERSTANDING THE VALUE THAT NEUROETHICS BRINGS INTO THE RESEARCH ENTERPRISE. SO, THIS CULTURAL ASPECT IS ONE THAT WE'RE ALSO THINKING A LOT ABOUT. I THINK IT WILL REQUIRE COMMUNITY BUILDING, REQUIRE A LOT OF VALUE DEMONSTRATION TO SHOW CONCRETELY WITHIN THE SCOPE OF PROJECTS, FOR EXAMPLE, LIKE WHAT'S BEING FUNDED IN THESE RO1 NEUROETHICS GRANTS TO SHOW PRACTICAL WAYS IN WHICH NEUROETHICS IS INTEGRATED INTO THEIR RESEARCH SETTING. SO THEY'RE PRACTICAL AS WELL AS MORE COMMUNITY-BUILDING ASPECTS TO HOPING THIS GENERATION, THE CURRENT AND FUTURE GENERATIONS OF NEURO SCIENTISTS INTEGRATING ETHICS IN OUR WORK. IT'S AN IMPORTANT QUESTION AND SOMETHING WE TALK ABOUT SO WE INVITE SUGGESTIONS. >> THANK YOU, CAROLINE. I LOOK FORWARD TO SEEING HOW THINGS PROGRESS. >> THANK YOU. >> SAMIR. >> THANK YOU. THAT WAS GREAT AND I REALLY ENJOYED THAT. REALLY APPRECIATE THE EMPHASIS OF THE DANA AND THE SCIENCE AND SOCIETY AND THE RELATIONSHIP BETWEEN THEM AND THE INTERACTION BACK AND FOURTH. MY QUESTION I GUESS IS ONE OF WHAT YOU SEE IN TERMS OF THE FUTURE OF THE THE FOUNDATION IN TERMS OF ITS ROLE AS AN INFLUENCER IN THIS SPACE, IN THIS NEUROETHICS SPACE? SO, AS A FUNDER, ANY FUNDER, CERTAINLY NIH FOUNDATIONS, ET CETERA, I MEAN YOU NATURALLY INFLUENCE THE SCIENCE THAT IS HAPPENING. BECAUSE YOU KNOW, THE STUFF THAT GETS FUNDED HAPPENS AND THE STUFF THAT DOESN'T GET FUNDED DOESN'T. DO YOU SEE PART OF THE FUTURE ROLE WITH THE DANA FOUNDATION ALSO AS INFLUENCING THESE QUESTIONS OF, I MEAN, A LOT OF STUFF WE'LL TALK ABOUT TODAY, HOW TRIALS SHOULD BE CONDUCTED, YOU KNOW, WHAT SHOULD HAPPEN, HOW COULD IT HAPPEN? COME UP WITH SOLUTIONS, SPREAD THE WORDS SO ALL THE DIFFERENT STAKEHOLDERS KNOW THAT THIS IS NOW THE DANA FOUNDATION FEELS ABOUT THESE PARTICULAR ISSUES AND WHAT SHOULD HAPPEN? IS THAT LIKE A GOAL OF THE FOUNDATION AS YOU MOVE FORWARD IN THIS NEW WAY? >> THANK YOU FOR THAT QUESTION. IT'S A WONDERFUL ONE. THE ANSWER IS YES. THE DANA FOUNDATION DOES SEE ITSELF AS AN INFLUENCER AND AS A PRIVATE FOUNDATION AND JUST HAVING GROWN IN THE WORLD OF SCIENCE PHILANTHROPY AND WE RECOGNIZE THAT PRIVATE FOUNDATIONS HAVE A ROLE TO PLAY AS A CATALYZER AND ALSO AS YOU PUT IT, AN INFLUENCER AND ANOTHER WAY WE THINK ABOUT IT IS SYSTEMS CHANGE, THAT PRIVATE PHILANTHROPIES HAVE AN OPPORTUNITY TO INVEST IN NEW PERHAPS MORE RISKY IDEAS AT EARLY STAGES. ESPECIALLY FOCUSING ON AREAS THAT ARE INTER DISCIPLINARY BECAUSE YOU CAN KIND OF DO SOME BOUNDARY WORK NOT CONSTRAINED BY TRADITIONAL MECHANISMS. I WHAT I HOPE TO SEE AND WHAT WE AIM FOR IS THAT WE CAN ACT AS BOTH A PARTNER, RIGHT, WORKING WITH THOSE IN THE FIELD THAT HAVE LEVERS FOR CHANGE, INFLUENCE THE FIELD IN DIFFERENT WAYS. AND ALSO, HELP TO PROVIDE INSPIRATION AND EXAMPLES FOR OTHERS TO INTEGRATE ADVANCE-THINKING PROACTIVE AND PARTICIPATORY THINKING ABOUT ETHICAL, LEGAL AND SOCIETAL CONSIDERATIONS WITHIN NEUROSCIENCE AND HOPEFULLY, IF WE'RE DOING IT RIGHT, COULD BE BEYOND NEURO SCIENCE BECAUSE THERE ARE AREAS LIKE A.I. THAT ARE STARTING TO GO INTO THESE DIFFICULT TO NAVIGATE TERRITORIES. SO, THE ANSWER IS YES. WE LOOK FORWARD TO PARTNERING WITH OTHERS TO DO THIS. I WILL SAY THAT THE FOUNDATION IS ALSO PART OF THE SCIENCE PHILANTHROPY ALLIANCE WHICH IS A COLLECTION OF PRIVATE FUNDERS THAT SUPPORT VARIOUS SCIENCE FIELDS. MANY OF THEM BEING NEUROSCIENCE AS WELL AND SO IF WE CAN PROVIDE MODELS HOW THE WORK IS DONE IT WITH INSPIRE OTHERS TO ADOPT THOSE TWO. >> VERY NICE, THANK YOU. >> I SEE TWO MORE QUESTIONS AND THEN WE'RE OUT OF TIME. TED ABLE, FIRST. >> THANK YOU FOR A TERRIFIC TALK. TED ABLE AT THE UNIVERSITY OF IOWA AND THANK YOU FOR THE DANA FOUNDATION FOR THEIR IMPACT. IT WAS AT PENN AND WE STARTED A KIDS JUDGE NEUROSCIENCE FAIR AND COURSES IN LOCAL ELEMENTARY SCHOOLS, PART OF THE KIND OF BRAIN BE AND EVERYTHING ELSE THAT THE DANA FOUNDATION ENCOURAGE IN TERMS OF THEIR BRAIN AWARENESS WEEK SO THINK FOR THAT IMPACT AND LOOKING FORWARD TO THE IMPACT HERE. MY QUESTION IS A QUESTION FROM THE PERSPECTIVE OF NEURODIVERSITY. AND WHEN WE THINK ABOUT NEUROETHICS, WE HEAR A LOT OF DISCUSSIONS ABOUT TREATMENT AND WE ALSO HEAR A LOT OF DISCUSSIONS ABOUT INCLUDING DIVERSE PERSPECTIVES. BUT IT'S INTERESTING HOW LITTLE WE HEAR ABOUT NEURODIVERSITY AND OUR SON IS STARTING A COURSE THIS WEEK AT THE UNIVERSITY OF IOWA ON DIVERSE PERSPECTIVES IN MATHEMATICS. AND WHEN YOU THINK ABOUT THAT AND THE CONTRIBUTION OF INDIVIDUALS, WITH BRAIN DISORDERS, TO MATHEMATICS AND THEIR CREATIVITY IT'S STRIKING. SO, I WONDER WHAT THE DANA FOUNDATION'S PERSPECTIVE IS ON NEURODIVERSITY AND MORE BROADLY FOR THIS NEW AG PANEL ON NEURODIVERSITY? >> THANK YOU SO MUCH FOR THAT QUESTION. IT'S SUCH AN IMPORTANT ONE AND SO RELEVANT IN THE CONTEXT OF A LOT OF THE EMERGING NEUROSCIENCE AND NEURO TECHNOLOGY TODAY. THIS AREA IS AN AREA THAT WE'RE HEARING A LOT ABOUT, ESPECIALLY AS NEW TECHNIQUES FOR GENETIC TESTING AND PRE SCREENING IN GENETIC TESTING ARE COMING ON-LINE FOR BOTH PSYCHIATRIC AS WELL AS NEUROLOGICAL DISORDERS. AND I THINK ONE OF THE THINGS THAT WE'RE FINDING IS HOW CRITICAL IT IS TO HAVE MEANINGFUL BIDIRECTIONAL ENGAGEMENT BY PATIENTS AND FAMILIES SO I THINK THAT THINKING ABOUT NEURODIVERSITY IS GOING TO REQUIRE A MULTI-STAKEHOLDER PATIENT AND FAMILIAL ORIENTATION FACING THESE NEW TECHNIQUES THAT ARE COMING ON-LINE. THERE'S MORE TO SAY ABOUT THAT, BUT THIS IS ONE OF THE AREAS THAT WE'RE SPEAKING WITH OTHERS ABOUT BECAUSE WE SEE SOME OF THE NEUROSCIENCE LARGE INITIATIVES THAT ARE STRUGGLING AND THEY'RE STRUGGLING AND NAVIGATING THIS AND A KEY ASPECT IS THAT ENGAGEMENT COMPONENT. >> ONE THING AT WENDY CHUNG IS THINKING ABOUT STRENGTH IN AUTISM AND HASN'T COME PUBLICLY BUT THEY HAD A MEETING ABOUT THAT RECENTLY SO IT'S GREAT TO HEAR. THANK YOU. >> YES. ABSOLUTELY. >> THANK YOU FOR AN INSPIRING AND TERRIFIC PRESENTATION. I WORK WITH UNDERGRAD WAD AND GRAD WAD STUDENTS IN DISCUSSIONS OF SCIENCE ETHICS AND SOCIETY THROUGH COURSES AND THE DANA FOUNDATION HAS ALWAYS BEEN A GO-TO PLACE FOR RESOURCES. I HAVE TWO QUESTIONS YOU CAN ANSWER ONE OR BOTH. THEY'RE RELATED. THE FIRST S. WE ALL TALK A LOT ABOUT COMMUNITY ENGAGEMENT, BUT IT'S NOT EASY. SO, I WONDER IF YOU HAVE SOME THOUGHTS AND I'M INTERESTING WHAT DO YOU THINK IS THE MOST DIFFICULT ASPECT OF THAT? AND SECOND, IS THE DANA PARTNERING WITH STUDENT ORGANIZATIONS? THERE ARE A LOT OF THEM OUT THERE. STUDENT PUGWASH FOR EXAMPLE, THEIR ORGANIZATIONS THAT PROMOTE STUDENTS SUCH AS AB RA CAMS, ARE YOU WORKING TO BUILD TIES WITH THOSE ORGANIZATIONS? >> YES, THANK YOU. THANK YOU FOR ALSO SHARING ABOUT YOUR INTEREST IN EDUCATION AND TRAINING ON ETHICAL AND SOCIETAL ISSUES IN NEUROSCIENCE. I LOVE TO FOLLOW-UP WITH YOU MORE ABOUT THAT. YES, SO, YOUR SECOND QUESTION WAS ABOUT WHAT'S MOST CHALLENGING ABOUT COMMUNITY ENGAGEMENT? IT'S A FANTASTIC QUESTION AND ONE OF THE NETWORKS, ONE OF THE COMMUNITIES THAT WE'RE ACTUALLY LOOKING TO FOR LEARNING IN THIS AREA IS CALLED THE CIVIC SCIENCE FELLOWS NETWORK, WHICH CLAIRE, WHO I MENTIONED, IS A PART OF. THEY INCLUDE GROUPS LIKE CNCI PUERTO RICO, THEY INCLUDE GROUPS THAT ARE WORKING WITH ORGANIZATIONS LIKE SACKNAS AND WE'RE LEARNING A LOT ABOUT COMMUNITY ENGAGEMENT, BUT CHALLENGES AND ALSO THE IMPORTANCE OF TRUST-BUILDING AND MEETING PEOPLE WHERE THEY ARE. AND SO, THE OTHER ASPECT IS IT REALLY TAKES TIME, RIGHT. THESE ARE NOT PACKAGED ONE AND DONE KINDS OF THINGS. IT REQUIRES A GREAT DEAL OF TRUST-BUILDING BETWEEN THE RESEARCHERS COMMUNITY, THE EMBASSADORS FOR THE PUBLIC OUTREACH PROGRAM, AS WELL AS THOSE IN THE COMMUNITY. SO I THINK IT HAS TO BE SUSTAINED AND ONE OF THE THINGS THAT WE HAVE LEARNED THAT IS ANOTHER CHALLENGE IS RELATED TO THE NAS REPORT QUOTE THAT I MENTIONED THAT WE CURRENTLY LACK EFFECTIVE MECHANISMS FOR BIDIRECTIONAL PUBLIC ENGAGEMENT IS THAT COMMITTEE ENGAGEMENT THESE TO BE DONE WELL, IT SHOULD BE SUSTAINED. SO THESE ARE COME OF THE CHALLENGE WE SEE FIND IN THIS WORK BUT IT'S NO LESS IMPORTANT AND SO IT'S ABSOLUTELY CRITICAL, EVEN IF THEY SERVE AS CATALYTIC MODELS THAT CAN BE SCALED TO OTHER COMMUNITIES THAT HAVE DIFFERENT SETS OF NEEDS AND VALUES. THE THIRD QUESTION, I'M SORRY, YOUR THIRD QUESTION, WOULD YOU REMIND ME? >> I WAS ASKING GENERALLY BEEN COMMUNITY, REACHING OUT TO WHAT WE CALL THE GENERAL PUBLIC, WHICH IS I THINK A VAGUE AND STRANGE TERM BECAUSE WE ARE ALSO PART OF THAT, DEPENDING ON RELATIONSHIP TO AN ISSUE. JUST WORKING WITH STUDENTS, PARTNERING WITH STUDENTS, REACHING OUT TO STUDENT ORGANIZATIONS, BECAUSE I THINK THE LINK AS AN EDUCATOR BETWEEN US AND COMMUNITY IS OUR STUDENTS. I WORK A LOT WITH NATIVE AMERICAN STUDENTS AND IF YOU WORK WITH THE NATIVE COMMUNITY TO BUILD TRUST, YOU REACH A STUDENT, YOU REACH THEIR FAMILY. AND IT'S SUSTAINED AND IT TAKES A LOT OF TIME TO BUILD. I DON'T THINK PEOPLE RECOGNIZE HOW LONG IT TAKES TO BUILD THAT TRUST. >> I'M SO GLAD YOU BROUGHT UP THAT POINT BECAUSE WHEN WE WERE THINKING ABOUT THE FUTURE DIRECTIONS OF THE DANA FOUNDATION, WHAT WE'RE BUILDING OUTWARD AS WE LOOK TO THE FUTURE, WE ALSO RECOGNIZED THAT THE K-12 FOCUS OF THE EDUCATION AND OUTREACH WORK OF THE PAST IS ALSO A VEHICLE FOR THAT ENGAGEMENT AND AS MENTIONED THE KINDS OF INFORMATION THAT STUDENTS BRING HOME TO THEIR FAMILIES, IS REALLY A DIRECT FORUM OF THAT ENGAGEMENT TO SPARK THE RELEVANCE OF BRAIN SCIENCE WITHIN THE FAMILY CONTEXT, RIGHT. IT BRINGS IT HOME. SO, I REALLY APPRECIATE THAT. I ALSO APPRECIATE YOUR MENTION OF ENGAGEMENT WITH INDIGENOUS POPULATIONS AS WELL BECAUSE I THINK THAT EACH OF THESE DIFFERENT SETTINGS, THESE DIFFERENT COMMUNITY SETTINGS, COULD REALLY SERVE AS CATALYTIC MODELS FOR US TO LEARN FROM. >> JOHN, LAST WORD. >> THANK YOU. THANK YOU CAROLINE FOR A GREAT PRESENTATION AND IT'S REALLY WONDERFUL TO SEE THE DIRECTIONS IN WHICH YOU ARE TAKING THE DANA FOUNDATION. WE'RE DELIGHTED TO HAVE YOU HERE ON NEWG AND I'M ALSO DELIGHTED TO HAVE THE DANA FOUNDATION IN THE PARTNER OF THE BRAIN INITIATIVE ALLIANCE. MY QUESTION SLASH STATEMENT FOLLOWS UP TO THE PREVIOUS ONES WILL ENGAGEMENT AND THE IDEA AND THE CONCEPT O BIDIRECTIONAL ENGAGEMENT AND FOLLOWING ON THE QUESTION OF THE CHALLENGES. MY QUESTION IS AROUND -- I THINK IT'S NOT UNFAIR TO STATE THAT THESE DAYS, THERE IS A PERVASIVE UNHEALTHY SKEPTICISM OF SCIENCE AND NOT JUST SCIENCE BUT A SCIENTISTS AND ALSO KEYING OFF WHAT ELBA SAID WE'RE DIVERSE IN HERITAGE AND VIEW POINTS. WHAT STRATEGIES ARE YOU THINKING ABOUT TO REACH PEOPLE TO ENGAGE THEM AND MEET THEM WHERE THEY ARE AND SEE WHAT ARE THE ISSUES TRULY AND HOW CAN WE ADDRESS THEM AND UNDERSTAND IT AND NOT JUST UNDERSTAND BUT ACCEPT THEM TO WHATEVER DEGREE POSSIBLE AND TO TRY TO HELP MOVE THE UNDERSTANDING TO BERET BETTER PLACE. >> JOHN, THIS IS SUCH A FUNDAMENTAL ISSUE. I THINK FACING ALL OF SCIENCE AND SO, ONE OF THE THINGS THAT WE HAVE TO THINK ABOUT REALLY DEEPLY AT THE DANA FOUNDATION IS HOW DID WE APPROACH OUR WORK KNOWING THIS IS JUST A LAYER THAT SPANS ACROSS ALL OF SCIENCE AND SORT OF RELATIONSHIP BETWEEN SCIENCE AND SOCIETY. , WHICH ACTUALLY AT A DEEPER LEVEL, THERE'S BEEN A REALLY STRONG HISTORY SPANNING BACK TO THE BUSH REPORT WHERE THESE HAVE BEEN SOMEWHAT SILOED AND SEPARATE ASPECTS OF SOCIETY. SCIENCE AND SOCIETY, WHEN IN FACT SCIENCE IS A SOCIETAL ACTIVITY. THERE'S A LOT OF HISTORICAL ASPECT AND CONTRIBUTION TO THAT. AT THE SAME TIME, I THINK THAT ONE WAY WE LOOK AT THIS IN THE DANA FOUNDATION AND IT'S MAYBE ON TWO LEVELS AND SO ONE IS THINKING ABOUT THE BROADER COMMUNITY AND SCIENCE STAKEHOLDERS SO AS I MENTIONED EARLIER, THE DANA FOUNDATION IS PART OF THIS ORGANIZATION CALLED THE SCIENCE PHILANTHROPY ALLIANCE WHICH WORKS CLOSELY WITH VARIOUS ORGANIZATIONS INCLUDING THE NATIONAL ACADEMY OF SCIENCE AND THEIR COMMITTEE ON MISINFORMATION AND SO, THERE'S SORT OF A RECOGNITION IF YOU WILL AMONG MANY WITHIN THE SCIENCE COMMUNITY THAT WE HAVE TO DO SOMETHING DIFFERENT, RIGHT AND THIS IS A CHALLENGE THAT WE'RE ALL FACING IN ORDER TO SUPPORT THE ADVANCEMENT OF SCIENCE SO I THINK PART OF THAT IS VERY MUCH MULTI-STAKEHOLDERS AND CROSSFIELD AND AND THEN I THINK THE OTHER ASPECT IS MORE SPECIFIC TO THE DIN A FOUNDATION WORK AND WHEN WE THINK ABOUT OUR PUBLIC ENGAGEMENT WORK, IT'S REALLY IMPORTANT TO THINK ABOUT IT IN AREAS THAT ARE TANGIBLE AND ACCESSIBLE TO SOME DEGREE SO SIMILAR TO WHAT ELBA MENTIONED TO, THE K-12 AGE GROUP AND HAVING A READY, SET OF STUDENTS TO BE ABLE TO FAKE HOME THE RELEVANCE OF NEUROSCIENCE AND INTRODUCE IT INTO THAT SETTING IT'S ONE EXAMPLE OF BEING ABLE TO REACH PEOPLE WHERE THEY ARE. THESE CONCEPTS THAT ARE RELEVANT TO DAILY LIFE. THE OTHER ASPECT THAT RELATES TO PUBLIC ENGAGEMENT IS THINKING ABOUT THE SECTORS OF THE PUBLIC THAT ALREADY INTERFACE WITH NEUROSCIENCE, EVEN IN THE PROFESSIONAL SETTING, THIS COULD BE THE JUDICIARY, SCIENCE COMMUTE CATERS AS WELL AS REGULATORS AND SO AGAIN, THINKING ABOUT THIS APPROACH THAT IS ALSO FEASIBLE AND COULD CATALYZE OTHER MODELS, IF WE'RE ABLE TO ACCESS AND PROVIDE GREATER UNDERSTANDING AND ENGAGEMENT IF THESE SECTORS OF THE PUBLIC THAT ARE REALLY ASKING FOR MORE RESOURCES AND TRAINING IN UNDERSTANDING IN NEUROSCIENCE THAT'S ANOTHER INROAD FOR EFFECTIVE PUBLIC ENGAGEMENT SO I WOULD SAY IT'S A TWO-LEVELS, ONE IS REALLY A COMMUNITY WIDE, A COMMUNITY WIDE NEED AND THE OTHER ONE IS THINKING ABOUT HOW THE WORK THAT WE AND OUR PARTNERS DO CAN BE CACATALYTIC WITHIN CERTAIN SECTS OF THE PUBLIC. >> THANK YOU SO MUCH AND I LOOK FORWARD TO LOTS MORE DISCUSSIONS ABOUT THINGS THAT DA DANA IS DG AND INTERACTION S WITH THE NEWG. I NEED TO TURN IT OVER TO HANK AND SASKIA, SORRY FOR THE DELAY. >> THIS IS SOMETHING WE'VE BEEN DOING IN THE NEW MEETINGS FOR A LONG TIME, WHEN WE GET THE NEW AWARDS THAT THE BRAIN INITIATIVES MADE, STAFF LOOKS THROUGH THEM FOR THINGS THAT MAY HAVE SOME ETHICS, SOME NEURO ETHICAL IMPLICATIONS AND THEY THEN GET SENT OFF TO VARIOUS NEWG MEMBERS TO TAKE A LOOK AND SEE WHAT THEY THINK. SO I'D LIKE TO START BY THANKING ALL THE NEWG MEMBERS WHO DID REVIEW THESE AND THANKING SASKIA HENDRIKS FOR THE ANALYSIS THAT SHE'S ABOUT TO PRESENT ABOUT THE BRAIN GRANTS AWARDED IN FISCAL YEAR 2021. >> THANK YOU, HANK. SO IT'S MY PLEASURE TO PRESENT THE ANNUAL SCAN OF THE NIH BRAIN GRANTS AWARDED IN THE PAST FISCAL YEAR. SO, WE'VE HAD 221 NEW GRANTS THAT HAVE BEEN AWARDED AND OF THOSE 38 INVOLVED HUMAN SUBJECTS RESEARCH. WE ALWAYS LOOK AT HOW MANY GRANTS INVOLVE HUMAN SUBJECTS RESEARCH. IT'S BEEN RELATIVELY STABLE OVER THE LAST FIVE YEARS. BOTH IN ABSOLUTE TERMS, THAT'S THE ORANGE GRAPH AS WELL AS THE RELATIVE TERMS THAT'S THE GREEN GRAPH. SO, ONE OF THE CHARGES OF THE NEUROETHICS WORKING GROUP IS TO HELP US IN SCANNING THAT BRAIN PORTFOLIO TO IDENTIFY ETHICAL CHARGES THAT MAY BENEFIT FROM CONSIDERATION. SO, TO REDUCE THE BURDEN TO NEWG MEMBERS, MEMBERS OF THE NEUROETHICS TEAM OF BRAIN HAVE REVIEWED THE PUBLICLY AVAILABLE ABSTRACT AND WE FOUND THAT 128 GRANTS WHY UNLIKELY TO RAISE ETHICAL QUESTIONS AND THE OTHER GRANTS WERE DISSEMINATED AMONG THE NEWG MEMBERS AND IT WAS REVIEWED BY ONE OR TWO NEWG MEMBERS FOR ETHICAL CHALLENGES. SO WE RECEIVED WRITTEN RESPONSES OF THE NEWG MEMBERS AND CONTENT ANALYSIS TO IDENTIFY THE THEMES OF ETHICAL CHALLENGES BASED ON THESE RESPONSES. FOR 19 GRANTS, NEWG MEMBERS DID NOT IDENTIFY ANY ETHICAL CHALLENGES SO THIS ANALYSIS ARE COMMENTS ON THE REMAINING 72 GRANTS. ONE IMPORTANT THING TO NOTE HERE IS ALL REVIEWS WERE BASED ON PUBLICLY AVAILABLE ABSTRACTS AND I THINK THIS IS AN IMPORTANT LIMITATION OF OUR ANALYSIS AND IT GOES IN TWO WAYS THAT IS POSSIBLE THAT THE CHALLENGES THAT NEWG MEMBERS IDENTIFIED HAVE ACTUALLY ALREADY BEEN RESOLVED IN THE FULL PROJECTS. AND IT'S ALSO POSSIBLE THE OTHER WAY AROUND. THERE MAY BE ADDITIONAL QUESTIONS THAT COULD COME UP UPON REVIEW OF THE FULL PROTOCOL ENACTMENTS. I WANT TO LOOK AT THE OUTSET. IT COULD BE IN SEVERAL WAYS FOR EXAMPLE, WE COULD HAVE TOPICAL WORKSHOPS TO CREATE MORE CLARITY OR GUIDANCE ALSO ON TOPICS. AND THESE THEMES COULD INFORM FUTURE BRAIN NEUROETHICS RESEARCH FUNDING OR IT COULD INFORM ASPECTS OF THE BRAIN NEUROSCIENCE PORTFOLIO AND A FEW AREAS MAY MERIT DISCUSSION WITH RESEARCHERS. SO LET ME START AT THE OUTSET BY POINTING OUT THAT VARIOUS NEWG MEMBERS EXPRESS EXCITEMENT AND STRESS THE IMPORTANCE OF THE RESEARCH THAT IS BEING FUNDED BY BRAIN. IN TERMS OF THE ETHICAL CHALLENGES THE QUESTIONS THAT NEWG MEMBERS BROUGHT UP COULD BE GROUPED INTO TWO OVERARCHING CATEGORIES. FIRST, CHALLENGES IN TERMS OF HOW TO RESEARCH IS CONDUCTED. HOW DO WE CONDUCT THIS RESEARCH IN A ETHICAL WAY AND SECOND, CONSIDERATION OF THE LONG-TERM IMPLICATIONS OF THE RESEARCH AND IT'S PRODUCTS. INCLUDING TOOLS AND TECHNOLOGIES AND INDIVIDUALS WHO MIGHT USE THE PRODUCTS, GROUPS AND SOCIETY. SO LET'S START WITH THE FIRST GROUP. CHALLENGES AND HOW TO CONNECT RESEARCH IN A MOST ETHICAL WAY. THIS IS THE TEAMS THAT CAME UP IN THE COMMENTS FROM THE NEWG MEMBERS AND I'LL GO OVER EACH OF THEM BRIEFLY AND IT'S THE TEAMS AND SHOWING HOW MANY TIMES THESE THEMES CAME UP AND HOW MANY DIFFERENT GRANTS. I WILL SAY THAT I THINK THIS IS AN INTERESTING DATA POINT AS IT SHOWS SOMETHING ABOUT THE PREVALENCE OF CERTAIN CHALLENGES IN THE PORTFOLIO AND HOWEVER, I WOULD ALSO SAY THAT THIS IS NOT NECESSARILY SUFFICIENT FOR DETERMINING THE PRIORITY OF EACH TOPICS FOR EXAMPLE, IT COULD BE A ETHICAL ISSUE THAT COMES UP ALONG BUT IT'S ACTUALLY ALREADY BEEN DEALT WITH IN TERMS OF REGULATORY OR ETHICAL GUIDANCE. OR THE OTHER WAY AROUND, IT MIGHT BE ISSUES THAT COME UP ONLY IN A FEW GRANTS BUT ARE STILL REALLY IMPORTANT TO RESOLVE. SO, STARTING WITH THE GENERAL HUMAN SUBJECT CHALLENGES. FOR SEVERAL OF THE STUDIES, NEWG MEMBERS POINTED TO SEVERAL CLASSIC TYPES OF CHALLENGES AND ALSO THE FACT THAT WE HAVE RECENT REGULATIONS IN THESE TYPES OF QUESTIONS ARE FAMILIAR, FROM OTHER TYPES OF CLINICAL RESEARCH, THAT DOESN'T NECESSARILY MEAN THAT ALL OF THESE QUESTIONS RAISED BY NEWG MEMBERS HAVE BEEN RESOLVED AND IN FACT, THERE MAY BE QUESTIONS HERE WHERE THERE'S A NEED FORT FURTHER INTERPRETATION OR SPECIFICATION OF EXISTING GUIDANCE SO SOME OF THE SPECIFIC AREAS OF INTEREST THAT WERE MENTIONED INCLUDED RISK BENEFITS FOR PARTICIPANTS, FOR EXAMPLE, WHEN ARE WE READY TO CONDUCT STUDIES AND WHAT ARE ACCEPTABLE RISKS IN RESEARCH WITHOUT A PROCESS RESPECT OF BENEFIT FOR PARTICIPANTS? AND WHAT ARE THE EFFECTS OF CERTAIN INTERVENTIONS ON THE DEVELOPING FRAME? HOW MIGHT WE THINK ABOUT POTENTIAL A TYPICAL RISK OF BENEFITS AND FOR EXAMPLE, EFFECT OF PERSONALITY? AND WHAT POTENTIAL IS THERE TO MAXIMIZE THE BENEFITS OF THE RESEARCH FOR THE PARTICIPANTS? QUESTIONS AROUND INFORMED CONSENT CAME UP INCLUDING HOW DID WE FRAME THE BENEFITS OF A PARTICULAR STUDY AND CONSENT? AND QUESTIONS ABOUT RESEARCH CONDUCTED WITH MINORS AND FOR EXAMPLE, RESEARCH WITH PATIENTS THAT MAY LOOSE THE ABILITY TO CONSENT THROUGH OUT THE RESEARCH PROCESS. NOW THE TOPIC INCLUDED FOR OUR PARTICIPANT SELECTION, FOR EXAMPLE, THE APPROPRIATENESS OF INCLUDING HEALTHY VOLUNTEERS VERSUS PATIENTS AND THE INCLUSION OF MINORS IN THE STUDY. SOCIAL VALUE OF RESEARCH ALSO CAME UP. WITH QUESTIONS ABOUT WHAT WILL BE THE MOST PROMISING INTERVENTION OR STUDY DESIGN, AND HOW TO BALANCE BETWEEN ANIMAL WELFARE AND PARTICIPATE INTEREST VERSUS OPTIMIZING SOCIAL VALUE AND CONSIDERING WHAT ENPLAN INFERENCES CAN BE DN FROM DATA. QUESTIONS CAME UP AS WELL ABOUT THE APPROPRIATE CONVERSATION OF RESEARCH PARTICIPANTS AND A NEED FOR COMMUNITY OUTREACH AND SUPPORT, WHICH WE JUST HEARD ABOUT IN OUR LAST SESSION. OVER ALL, I'LL NOTE THAT COMPARED TO THE PREVALENCE OF HUMAN SUBJECTS CHARGES LAST YEAR, THERE WERE MORE THIS YEAR. IT WAS ALMOST DOUBLE ACTUALLY. SO THERE WAS AN INTERESTING POTENTIALLY INTERESTING DATA POINT. SO, NEXT IS ANIMAL RESEARCH EFFORTS. CHARGES RELATED TO DURING RESEARCH WITH ANIMALS MOSTLY CAME UP IN THE CONTEXT OF NOM NON HUMAN PRIMATE RESEARCH AND ESPECIALLY IF IT INVOLVED GENOME EDITING AND THE QUESTIONS THAT CAME UP INCLUDED THINGS LIKE YOU HOW TO BALANCE RESEARCH WITH ANIMAL WELFARE AND MINIMIZING THE STRESS AND SUFFERING AND THE ANIMALS. MAXIMIZING SCIENTIFIC VALUE AND PUBLIC PERCEPTION OF THE RESEARCH SO SOME MEMBERS HIGHLIGHTED OVERSIGHT STRUCTURES AND LIKE THE TO ASSESS ANIMAL WELFARE ISSUES. NEW MEMBERS BROUGHT UP CHALLENGES RELATED TO HUMAN RESEARCH DATA. THESE COULD BE CHALLENGES AROUND HAVING SENSITIVE TYPES OF DATA, FOR EXAMPLE, DATA FROM CHILDREN, DATA ABOUT STIGMATIZED CONDITIONS, DATA AND RISK OF REIDENTIFICATION, FOR EXAMPLE, SOME QUESTIONS RAISED INCLUDED IS THERE A POTENTIAL FORENSIC UTILIZATION OF RECORDINGS CAN THEY BE SUBPOENAED? OR SOMETHING MEMBERS ASKED THE IMPORTANCE OF THE ABILITY TO TURN OFF RECORDINGS IN PRIVATE SETTINGS. OTHER QUESTIONS RAISED ENCLOUDED SECURITY ISSUES OF DATA AROUND DATA STORAGE AND TRANSFER AND ALSO QUESTIONS AROUND DATA SHARING WITH OTHER RESEARCHERS ALTHOUGH OF CLEAR SCIENTIFIC VALUE, THERE'S A NEED TO CONSIDER ACCESS THAT THEY USE WITH THIS TYPE OF DATA. QUESTIONS AROUND THE RETURN OF RESEARCH RESULTS ALSO CAME UP. WHAT IF YOU IDENTIFIED PREDICTORS IN YOUR RESEARCH STUDY AND YOU ARE IN THE EARLY STAGE OF THE SCIENCE WITH LITTLE CERTAINTY ABOUT WHAT THESE PREDICTORS MEAN FOR THE FUTURE HEALTH OF A PATIENT. SHOULD YOU RETURN THOSE RESULTS TO PARTICIPANTS? HOW DOES IT PLAY A ROLE IN THOSE QUESTIONS? GO ABOUT THE VALUE OF THE RISK PROVIDING UNCERTAIN INFORMATION. AND SOME QUESTIONS CAME UP ABOUT WHO OWNS THE DATA. IS IT THE SUBJECTS, THE COMPANIES OR THE ACADEMIC INSTITUTIONS? WHAT ARE FOUNDERS? FOR VARIOUS STUDIES, NEWG MEMBERS BROUGHT UP IN THIS STUDY IT WILL BE IMPORTANT TO ENSURE THAT RESEARCH PARTICIPANTS WILL BE REPRESENTATIVE OF THE OVER ALL POPULATION AND THE STUDY ACROSS FACTORS OF AGE, GENDER, RACE, ETHNICITY, SOCIOECONOMIC STATUS, NEURODIVERSITY AND OTHERS. IN THIS CASES, IT MAY BE NEED FOR EFFORTS TO INCLUDE UNDER REPRESENTED MINORITIES. THE EXAMPLE IS ESPECIALLY IMPORTANT WHEN ESTABLISH WHAT IS IS NORMAL PHYSIOLOGY AND OR CREATING A LARGE DATABASE THAT WILL BE USED AS A RESEARCH FOR FUTURE STUDIES. SOME STUDIES NEWG MEMBERS HIGHLIGHTED POTENTIAL DIFFERENCES ACROSS FOR CAPITAL LANGUAGE AND CULTURES WHEN ANALYZING DATA. AND ANOTHER THING THAT CAME UP FOR A COUPLE OF HUMAN STUDIES IS FOR EXAMPLE, INDIVIDUALS WITH AN INDEVI MAY WANT TO KEEP IT SO THEY MAY NEED LONG-TERM CARE OR MAINTENANCE. WE HELD A WORKSHOP ON THE TOPIC IN MAY AND Dr. NINA SHU WILL GIVE US AN EXAMPLE LATER THIS AFTERNOON. BRAIN MODELS ALSO CAME UP TO NEWG MEMBERS MENTIONED IT THEY INTERESTING IF ORGANIZED DEVELOPED FURTHER FOR EXAMPLE IF THEY SHOW CAPACITY OF ETHICAL ISSUES AND SUCH AS STRUCTURES AND CONNECTIVITY AND THAT COULD BE PRE CURSERS TO MENTAL STATES AND SO ON. ON THIS BROUGHT UP THE NEED TO CONSIDER HOW TO APPROPRIATELY GET CONTENT FOR THE INTEGRATION OF ORGANOIDS FROM THE HUMANS WHICH THESE ISSUES HAVE BEEN LEFT. LET'S CONSIDER THE THEMES THAT CAME UP IN RELATION TO THE LONG-TERM IMPLICATIONS OF THE RESEARCH AND IT'S PRODUCTS AND HOW IT MAY INDIVIDUALS, GROUPS AND SOCIETIES. THE PREVALENCE AND AS YOU CAN TELL, THIS CHARGES CAME UP LESS OFTEN AS COMPARED TO THE RESEARCH THAT THESE CHALLENGES AND IT DOESN'T NECESSARILY MAKE THEM OF LESS IMPORTANCE OR WORTHY OF ATTENTION. SO THE FIRST THING IS ABOUT IMPROVED HUMAN BRAIN MODULATION SO HERE SIGNIFICANT IMPROVEMENTS IN HUMAN BRAIN MODULATION OR IN OUR UNDERSTANDING OF BRAIN FUNCTION, WHICH MAY ENABLE MODULATION OF SETTINGS MAY LEAD TO SEVERAL THINGS INCLUDING, FOR EXAMPLE, SO-CALLED AA KIP TAL RISK AND TERMS IN AGENCY, IDENTITY, AUTHENTICITY AND ALSO THE MOOD OF BEHAVIOR AND MAYBE EVEN THE DECISION-MAKING PROCESSES, MEMORIES AND SO ON. SO WHAT EXTENT ARE WE INTERFERING WITH THESE? WHAT'S THE IMPACT ON PATIENTS? SECOND, THIS TECHNOLOGIES MAY HAVE AFFECTS BEYOND THOSE ON THE PATIENTS WHO WILL USE THEM. FOR EXAMPLE, INCREASING OUT OUR ABILITY TO UNDERSTAND AND MODULATE MOTIONS, DECISION-MAKING, AND SO ON AND MAY LEAD US TO ADAPT TO REDEFINE WHAT WE MEAN WHEN WE TALK ABOUT CONCEPTS IKE AGENCY OR IDENTITY AND AUTONOMY. THERAPY THAT ARE BEING DEVELOPED FOR COGNITIVE OR MOOD DISORDERS OFFER IMPORTANT ASPECTS OF IMPROVING HEALTH BUT AS SOME NEWG MEMBERS POINTED OUT THE SAME TECHNOLOGY MAY OVER TIME BE USED FOR NON THERAPEUTIC PURPOSES FOR ENHANCEMENT OR TO PROVIDE EVIDENCE IN THE LEGAL SYSTEM. THIS RAISES QUESTIONS LIKE WHAT USES ARE APPROPRIATE? WHAT IF ANYTHING DO WE NEED TO CONSIDER ABOUT THIS POTENTIAL USERS NOW AS WE'RE DEVELOPING THESE TECHNOLOGIES? THE DEVELOPMENT OF NEURAL CORRELATES FOR BEHAVIOR PHENOTYPES AND NEURO COGNITIVE FUNCTION AND DISEASE ESPECIALLY IF PREDICTIVE, MAY IMPACT FUTURE PATIENTS IN MULTIPLE WAYS. IT MAY PROVIDE IMPORTANT HEALTH BENEFITS. FOR EXAMPLE, EARLY TREATMENT OPTIONS AVAILABLE. BUT IT MAY ALSO INVOLVE RISKS INCLUDING PSYCHOSOCIAL RISK, ECONOMIC RISK, LEGAL RISK WHICH RAISES THE QUESTION OF WHETHER THINGS LIKE STIGMA OR INSURE ABILITY SHOULD BE CONSIDERED THAT THIS STAGE OF THE DEVELOPMENT AND AS IT GOES INTO ALL THE TECHNOLOGIES ARE INTEGRATED INTO SOCIETY. SO PRIVACY AND SECURITY IS NOT JUST A CONCERN IN RELATIONSHIP TO THE STUDY WE DISCUSSED BEFORE BUT IT REMAINS A TOPIC THAT NEEDS ATTENTION FOR THE TOOLS WE'RE DEVELOPING AND ALSO WE'RE INFLUENCING. SO GENERALLY SPEAKING AS TECHNOLOGY TOOLS IMPROVE IT'S MORE SENSITIVE BECAUSE WE CAN LEARN MORE ABOUT THE PERSON. WHICH RAISES MORE PRIVACY CONCERNS, FOR EXAMPLE, YOU CAN THINK OF PHENOTYPES AND NEURAL CORRELATES AND INNOVATIVE DEVICES MAY RAISE QUESTIONS ABOUT SECURITY FOR EXAMPLE IF THERE'S WIRELESS TRANSMISSION OF DATA AND DATA SHARING RACES QUESTIONS INCLUDING THE SECURITY OF PLATFORMS AND THE ANALYSIS SOFTWARE, THE IMPACT OF BIG DATA ON THE RE-IDENTIFY ABILITY RISK, HOW TO CONTROL FOR BUY SASSED DATASETS AND IMPROVED ACCESS TO DATA. THERE WERE TWO RISK AND THE POTENTIAL REDEFINITION OF SIGHS AT TRICK ILLNESS SYMPTOMOLOGY WHICH MAY RAISE IMPORTANT ETHICAL QUESTIONS AND HAVE IMPLICATIONS FOR PATIENTS AS WELL AS YOU ARE INCREASED UNDERSTANDING OF HERITABILITY OF COGNITIVE TRAITS AND IMPACTS ON SOCIETY. AND THE FREQUENCY OF THESE ISSUES SEEMS PRETTY STABLE EXCEPT FOR A COUPLE OF INSTANCES I MENTIONED IN THIS TALK. COMPARED TO LAST YEAR. SO, WE'RE THINKING ABOUT MAYBE COMPILING A FIVE-YEARS WORTH OF PORTFOLIOS IN THE WORKING GROUP TO GET A SENSE OF HISTORICAL TRENDS IN THE TEAMS BUT WE HAVEN'T DONE THAT YET. SO, I'M CLOSING WITH SOME THOUGHTS. THAT WE WOULD LOVE NEWG INPUT ON. ARE THERE OTHER CONSIDERATIONS THAT WE MAY WISH TO TAKE IN? WHAT SHOULD THE NEWG DO WITH THESE THEMES AND HOW CAN WE AS ALWAYS IMPROVE THIS PROCESS? SO, WITH THAT, I WOULD WELCOME ANY QUESTIONS AND COMMENTS. >> ANY QUESTIONS OR COMMENTS FOR SASKIA? NITAS. THAT A HAND UP? >> I'M TRYING TO FIND MY HAND REACTION. THANK YOU. THANK YOU, SASKIA, THIS WAS GREAT AND REALLY HELPFUL TO SEE AND I LIKE THE IDEA OF KIND OF FIVE YEARS OF LOOKING ACROSS TO SEE WHAT SOME OF THE ISSUES ARE THAT ARISE. IN PARTICULAR FOR FIGURING OUT WHERE WE HAVE GAPS IN THE KIND OF RECOMMENDATIONS OR WORKSHOPS THAT WE'VE REALLY TAKEN A DEEPER DIVE INTO, ONE, OF COURSE, THAT IS NEAR AND DEAR TO ME THAT WE'VE BEEN CIRCLING AROUND FOR A WHILE ARE A LOT OF ISSUES AROUND PRIVACY AS THE DATA FURTHER DEVELOPS AND IT WOULD BE USEFUL TO DO A DEEPER DIVE IN THAT. IT'S REALLY INTERESTING TO SEE THE CONSISTENCY OF THEMES YOU'VE PULLED OUT AND TO SEE CHANGES OVER TIME, THAT WE'RE SAYING IN THAT THAT'S ONE OF THE THINGS THAT WOULD BE NEAT TO LOOK AT WITH THE FIVE YEARS IS TO SEE WHAT ARE THE ISSUES THAT WE'RE RECOGNIZING PULLING OUT AND SEEING MORE FREQUENTLY NOW VERSUS FIVE YEARSING AN AGO ANDT CHANGING WITH NEUROSCIENCE AND NEURO TECHNOLOGY AND I WONDER IF YOU HAVE, HAVING DONE THIS FOR A WHILE, IF YOU HAVE OFF THE CUFF IF YOU SEE ANY SHIFTS IN TRENDS OVER TIME THAW MIGHT WANT TO HIGHLIGHT FOR US? >> UM, SO I PREFER TO HAVE THE DATA IN FRONT OF ME SO I CAN GIVE YOU A TRUE ANSWER. >> OF COURSE, OF COURSE. >> ANYTHING THAT STRIKES YOU AS YOU LOOK ACROSS IT? >> THIS YEAR WE HAD MORE NEW COMMENTS ABOUT RESEARCH WITH MINORS. SO I DON'T KNOW WHETHER THAT ACTUALLY REPRESENTS AN INCREASE IN THE NUMBER OF STUDIES WITH MINORS IN BRAIN. I WOULD HAVE TO LOOK AT THOSE NUMBERS. WE GOT MORE COMMENTS ABOUT THEM THIS YEAR. ANOTHER THING THIS WE HAD MORE THIS YEAR WAS CHALLENGES RELATED TO HUMAN SUBJECTS RESEARCH. LIKE THE FIRST BIG CATEGORY. AND YEAH, THOSE NUMBERS WERE SIGNIFICANTLY HIGHER THIS YEAR THAN LAST YEAR. I DON'T HAVE IMMEDIATE EXPLANATION FOR THAT. THAT MIGHT BE SOMETHING. >> THAT'S HELPFUL AND USEFUL FOR US TO DIVE INTO TO SEE THE GAPS OR WHAT WE HAVE THAT ARE LEADING TO KIND OF GREATER IDENTIFICATION OF THOSE ISSUES SO THANK YOU FOR DOING THAT. IT'S TERRIFIC AND I KNOW YOU ARE MUCH MORE, I'M SURE, INTERESTED IN LOOKING AT THE DATA ITSELF SO I LOOK FORWARD TO THAT WHEN YOU HAVE A CHANCE TO DO SO. >> JIM -- >> THANK YOU, HANK. SASKIA, THANK YOU FOR THE OVERVIEW. YOU ALWAYS DO A GREAT JOB OF GETTING THIS IN ALL TOGETHER FOR US. I GUESS THIS IS MORE A QUESTION FOR THE GENERAL GROUP. MAYBE FOR JANUARY AND ANDRO ANN PARTICULAR. IS THERE RATIONALE PROVIDING FEEDBACK TO THE INVESTIGATORS OF THE GRANTS WITH THE ETHICAL ISSUES THAT HAD BEEN DISCUSSED WITH RESPECT TO THE GRANTS. NOT THAT THEY HAVE AN ISSUE, BUT WOULD THAT HELP EDUCATE OUR INVESTIGATORS AS TO SOME OF THE NEUROETHICS CONSIDERATIONS THAT WE WOULD LIKE ALL OF THEM TO SORT OF KEEP IN MIND? >> IT'S A GOOD POINT, JIM. IT'S HAPPENING ORGANICALLY AND LET ME COME BACK TO YOUR QUESTION. IT'S HAPPENED ORGANICALLY TO SOME EXTENT. I MEAN, WE HAVE THIS RESEARCH OPPORTUNITIES IN HUMANS CONSORTIUM WHICH WAS INITIALLY SELF-ORGANIZING AND IT'S GOTTEN TO BE QUITE ROBUST SO I THINK MANY OF YOU KNOW, SOME OF THE NEUROETHICS ISSUES THAT HAVE COME UP HERE AND ELSEWHERE WERE RAISED AND ADDRESSED IN DIFFERENT FORMS AND FORUMS BY THE ROH CONSUMPTION INCLUDING NICE PUBLICATIONS SO SOME OF IT HAPPENED ORGANICALLY. ONE WAY TO DO THIS IS TO DIRECTLY ENGAGE THE INVESTIGATORS IN WORKSHOPS, MEETINGS, WHICH WE ARE DOING AS WELL. WHETHER WE'RE TELLING THEM WE'RE DOING THAT IN FEEDBACK IS A DIFFERENT STORY. I THINK CERTAINLY WE CAN -- WE WILL AND SHOULD CONTINUE DOING THAT AND PERHAPS DO SOME IN A MORE INTENTIONAL WAY. AND AS NOTED, I WOULD LIKE THE IDEA OF A FIVE-YEAR SCAN TO SEE, CAN WE IDENTIFY TRENDS AND WITH ANY WORKSHOP THAT WE DO, IT'S A MATTER OF THE WORKSHOP ORGANIZERS WHICH WOULD BE US, EITHER BRAIN OR NEWG OR NEWG IN COLLABORATION WITH BRAIN TO IDENTIFY ISSUES WE WOULD LIKE TO BRING FORWARD FOR DISCUSSION AND MAKE FORWARD THE RESEARCHERS THERE ARE WITH A STRONG COLLECTIVE, NOT COLLECTIVE AND VOICE WHICH AGAIN IS ONE THING WE DID LEARN FROM THE TRIALS AND RESPONSIBILITIES WORKSHOP IS WE NEEDED DIFFERENT VOICES AT THE TABLE TO SOLVE THESE COMPLEX PROBLEMS. SO THIS IS DEFINITELY SOMETHING THAT I THINK WE WILL BE DOING. >> IF I COULD JUST ADD ON TO THAT AS WELL, THERE ARE BOTH FORMAL AND INFORMAL WAYS THAT WE'RE DOING THIS. PROGRAM STAFF ARE ALERT TO THIS AND WE HAVE AN INTERNAL TEAM, OUR NEUROETHICS TEAM LED BY NINA HSU AND JAY CHURCHHILL AND IT HAS MEMBERS OF LOTS OF PROGRAM STAFF FROM OUR BRAIN INITIATIVE AND THEY DO DISCUSS THESE ISSUES QUITE REGULARLY. SO THAT'S THE WAY WE DEAL WITH THESE INTERNALLY. IN ADDITION, BECAUSE OF THE WORK OF THE NEUROETHICS WORKGROUP AND OTHERS AT NIH WE HAVE THE COIN RATED THE EX F PER TEASE INTO A NUMBER OF OUR FUNDING OPPORTUNITIES. IT WAS A FORMAL WAY AND WE HAVE OUR REALLY IMPORTANT ISSUES OUT THERE AND WE NEEDED NEURO ETH SIS AND ETH A SIS RIGHT UP FRONT IN TERMS OF THEIR INVOLVEMENT IN PROJECTS. >> JUST TO ADD A FINAL COMMENT, SOMETIMES DUNG THIS ANALYSIS EVERY YEAR WE HAVE A RESPONSE TO A GRANT WHERE IT'S NOT SO MUCH ETHICAL AND WHERE WE ETHICAL CONCERN WHERE WE REVIEWS AND SEPARATELY AFTER THE PORTFOLIO ANALYSIS. >> THANK YOU ALL. >> WE HAVE A BREAK COMING UP. >> KAREN, WERE YOU RESPONDING TO SOMETHING BEFORE? DO YOU WANT TO GO FIRST? I'LL MAKE IT QUICK. I THINK ONE OF THE GREAT AND REALLY NECESSARY THINGS THAT THE NEWG DOES IS STAY AHEAD OF SOME OF THE IMPORTANT QUESTIONS AND NOT BE REACTIVE BUT BE PROACTIVE TO THINGS THAT ARE COMING ON THE HORIZON AND IT WAS POINT NUMBER FIVE. REALLY NICE SUMMARY, THANK YOU, I REALLY ENJOYED THAT. WHICH IS THAT, YOU KNOW, THE USE OF SURGICALLY IMPLANTED DEVICES FOR ENHANCEMENT. THIS IS, YOU KNOW, THIS IS ALREADY HERE AND SO I WONDER WHAT WE SHOULD BE DOING TO THINK ABOUT HOW TO ESTABLISH SOME SORT OF RAILS FOR THIS, I MEAN IT COULD BE CRAZY AND TREMENDOUS IN A GOOD WAY OR BAD WAY OR ANY DIFFERENT WAY AND I WONDER IF THIS IS ONE OF THE THINGS THAT WE SHOULD BE THINKING ABOUT IN TERMS OF THE FUTURE OF WHAT WE CAN DO TO HELP ESTABLISH SOME SORT OF PRINCIPLES UNDER WHICH WE HOPE THIS WORK WILL TAKE PLACE. LIKE SAID, IT'S ALREADY HERE AND IT'S INEVITABLE AND MAYBE WHAT WE DO IS NOT GOING TO MATTER BECAUSE IT WILL TAKE ON ITS OWN FORCE. I THINK WE SHOULD TRY AS A COMMUNITY OF INDIVIDUALS TO TRY TO INFLUENCE HOW THAT DEVELOPS. I GUESS THERE'S NO QUESTION THERE. >> OK. LET'S GO TO KAREN. >> SUGGESTION TAKEN. >> THANK YOU. SASKIA AMAZING SUMMARY AS ALWAYS AND SO I'M SO GRATEFUL YOU DO THOSE FOR US SO TAUGHTFULLY AND CAREFULLY ANSWER QUESTIONS WE HAVE ABOUT THEM. I THINK MY STATEMENT IS A COMMENT. IT'S ALSO MAYBE AN APPEAL I'VE MADE A COUPLE OF TIMES. MAYBE IT'S RELEVANT NOW, WHICH IS JUST BROADLY, AS LOOKING FOR GAPS AND ACTIVITIES IN A FIVE-YEAR ANALYSIS MAY BE WOULD THERE BE INTEREST IN DOING AN INTERNAL ASSESSMENT OF OUR TOOLS THAT WE'VE DEVELOPED. THERE'S STILL THE NEUROETHICS ROADMAP WE'VE DISCUSSED SEVERAL TIMES THINKING ABOUT PICKING UP AND DOING SOMETHING WITH THE SIGNIFICANT WORK DONE THERE AND LED BY OUR FEAR LESS CO-CHAIRS, JIM, AND MANY OTHERS WHO WERE ON THE TEAM. AND ALSO WE HAVE CREATED OUR OWN ETHICS PRINCIPLES BACK IN THE DAY, THAT I'M NOT REALLY SURE HAVE MADE THEIR WAY INTO OUR ANALYSIS AND I HAD BROUGHT THIS UP ACTUALLY WITH JOHN, IF WOULD BE INTERESTING TO LOOK BACK AT THOSE PRINCIPLES AND LOOK AT THEIR UTILITY IN DOING SOME OF THESE ANALYSIS AND IF WE'RE NOT USING THEM, EITHER MAYBE WE DON'T HAVE AWARENESS OR THEY'RE NOT USEFUL IN ITS TIME TO UPGRADE THEM SO THEY'RE USEFUL INTERNALLY AND WE WE HOPE WE CREATE TOOLS USEFUL FOR THE REST OF THE SCIENTIFIC COMMUNITY. SO, I THINK A CONSISTENT CALL IS MY WORK THESE DAYS IN THE INSTITUTE AND LOOKING AT PROCESS IN IMPLEMENTATION AND I THINK THAT SCIENTISTS AND PRACTITIONERS ARE REALLY HUNGRY FOR ACTIONABLE TOOLS MORE THAN A THEORETICAL ANALYSIS ALTHOUGH IT'S USEFUL IN A PRECURSOR AND WE CAN WORK TO DEVISE SOME EFFECTIVE TOOLS OR AT LEAST ASSESS THE TOOLS THAT WE HAVE. >> OK. NOT HEARING AN UPWARD TONE AT THE END OF THAT SENTENCE. I WILL ACCEPT IT'S NOT A QUESTION. I THOUGHT I SAW ELBA'S HAND UP EARLIER. BUT I DON'T SEE IT UP NOW. AND SOMEONE IN THE UPPER-LEFT CORNER -- WHOSE LOCATION MAKES ME THINK YOU HAVE A HAND UP BUT I'M NOT SEEING A HAND UP. ANYBODY ELSE? ALL RIGHT. WELL, I WILL MAKE ONE COMMENT ON THIS AND IT'S THE LAST TIME I'LL MAKE THIS COMMENT AT A NEWG MEETING. I MENTIONED IT'S THE BIGGEST ETHICAL ISSUE AROUND BUT I THINK THE BRAIN INITIATIVE AND NIH MORE BROADLY, HAS THIS SERIOUS POTENTIAL SLOW-MOTION WITH NON HUMAN PRIMATES. NEURO SCIENTISTS WANT TO USE IT ON PRIMATES MORE AND MORE FOR GOOD AND UNDERSTANDABLE REASONS AND CONGRESSIONAL OF PRIMATES IS RISING AND I SEE THAT AS A POTENTIAL REAL PROBLEM FOR FUTURE NEUROSCIENCE RESEARCH THAT I HOPE NIH PROBABLY AT A LEVEL HIGHER THAN JUST THE BRAIN INITIATIVE, IS GOING TO BE THOUGHTFUL AND ACTIVE ON. HAVING SAID THAT, AND LOOKING AT A BUNCH OF HUMAN PRIMATES, WE'RE SCHEDULED TO GO UNTIL BREAK UNTIL 10:40. WE'VE GOT SIX AND A HALF MINUTES I THINK THAT'S PROBABLY ENOUGH FOR THE BASIC NEEDS FOR A BREAK COME BACK HERE AT AROUND 10:40 AND WE WILL RESUME. SEE YOU IN SIX MINUTES. >> GUESS WE'LL GET STARTED. Dr. NINA HSU WILL RECAP WHAT WE HEARD SEVERAL TIMES. A LOT OF YOU WERE THERE BUT NOT EVERYONE WAS THERE AND IT WILL BE GOOD FOR EVERYONE TO SORT OF REMEMBER WHAT WE DISCUSSED AT THE WORKSHOP. BEFORE I TURN IT OVER TO NINA, I WANT TO PUBLICLY THANK NINA HSU AND SASKIA HENDRIKS, ESPECIALLY, FOR ALL THE WORK THEY WENT AND THEY DID TO GO INTO THAT WORKSHOP. IT WAS REALLY A VERY EXCELLENT WORKSHOP AND WE'RE STILL TALKING ABOUT THE NEXT STEPS. SO THANK YOU BOTH. NINA -- TAKE IT AWAY. >> THANK YOU SO MUCH, CHRISTINE. I THINK THE SLIDES WILL BE COMING UP IN JUST A SECOND. GREAT. ALL RIGHT. SO PERFECT. AND GREAT, SO, WHAT I WILL BE BRIEFLY RECAPPING Dr. AND THE SUMMARY OF OUR MAY TWO-DAY WORKSHOP AROUND CONTINUING TRIAL RESPONSIBILITIES THAT FOCUSED ON PATIENTS WHO PARTICIPATED IN IMPLANT AND NEURAL DEVICE TRIALS. AS CHRISTINE AND JOHN ALLUDED TO, WE'RE CONTINUING TO PROCESS THE RICH DISCUSSIONS FROM THE WORKSHOP AND WE DISCUSSION THAT LATER ON TODAY AS WELL. SO JUST TO GIVE A LITTLE BIT OF BACKGROUND AND DEVICES REQUIRES CONDUCTING RESEARCH WITH HOW MANY AN VOLUNTEERS AND WE WOULDN'T BE ABLE TO ADVANCE THE FIELD WITHOUT THE GENEROUS CONTRIBUTIONS OF THE PATIENTS WHO VOLUNTEER FOR THESE TRIALS. IT'S WORTH NOTEING AND WE HEARD IT IN THE WORKSHOP AND THESE PATIENTS HAVE TRIED ALL OTHER AVAILABLE TREATMENTS AND HAVE FOUND THEIR CONDITIONS TO BE TREATMENT RESISTANT SO WE PARTICIPATE IN THESE TRIALS MAY OR MAY NOTTEN UP HELPING THEM ON AN INDIVIDUAL LEVEL. AND SO WHEN THESE PATIENTS CONTRIBUTE TO THESE TRIALS, IT'S IMPAIRED THAT WE AS A SCIENTIFIC COMMUNITY UPHOLD HIGH ETHICAL STANDARDS AND TRY TO DO OUR BEST TO REDUCE THEIR PARTICIPATE RISK AND BURDENS. SO THIS WORKSHOP DEALT WITH ONE AREA RELATED TO THAT GENERAL GOAL OF NIH AND THE RESEARCH COMMUNITY AT LARGE. SO SPECIFICALLY, PATIENTS WHO RECEIVE EXPERIMENTAL NEURAL DEVICES MAY HAVE NEEDS RELATED TO THEIR REOPEN PARTICIPATE AFTER THE TRIAL ENDS. FOR EXAMPLE, PATIENTS EXPERIENCING BENEFITS MAY WANT TO KEPT DEVICE AND PATIENTS WHO KEPT DEVICE MAY NEED THINGS SUCH AS DEVICE MAINTENANCE, INCLUDING HARDWARE REPLACEMENTS SUCH AS BATTERIES, AND MAY ALSO NEED DEVICE EX PLANTATION FOR EXAMPLE, DUE TO COMPLICATIONS. AND THESE RESEARCH RELATED PERIODS CAN APPEAR IN DIFFERENT SCENARIOS THE CLASSIC SCENARIO IS THE TRIAL HAS ENDED BUT THE DEVICE HAS NOT BEEN APPROVED FOR CLINICAL USE. BUT IT'S IMPORTANT TO KNOW THAT THERE ARE OTHER POSSIBLE SCENARIOS AS WELL FOR EXAMPLE, THE TRIAL MAY JUST CONTINUE PREMATURELY AND THE DEVICE MAY NOT RECEIVE APPROVAL AND THE CLASSIC SCENARIO BETWEEN THE END OF THE TRIAL AND DEVICE APPROVAL IS TIME LITED BUT SOME OF THESE OTHER SCENARIOS COULD LAST AS LONG AS THE PATIENT'S LIFETIME. AND THERE HAVE BEEN SEVERAL REASONS ACROSS PROFESSIONAL STAKEHOLDERS THAT HAVE BEEN EXPRESSED BY THESE PROFESSIONAL STAKEHOLDERS WERE THESE TRIALS MAY HAVE RESPONSIBILITIES TO ANTICIPATE AND PLAN FOR PARTICIPATE POST TRIAL NEEDS THAT ARE LINKED TO TRIAL PARTICIPATION. THIS CAN INCLUDE A RESPONSIBILITY TO PREVENT OR REDUCE THE HARMS THAT RELATE TO HAVING SUCH A DEVICE FOR INDIVIDUALS AND SO NON-MALEFICENCE AND REPROVIDE CARE FOR THE BURDEN AND RISK THAT THEY UNDERGO AS PARTICIPANTS TO ADVANCE THE SCIENCE AND -- AND THE RELATIONSHIP BUILDING THAT HAPPENS BETWEEN PARTICIPANTS AND THOSE WHO ARE INVOLVED IN THE TRIAL WHICH CAN CREATE RELATIONAL DUDES AFTER THAT TRIAL HAS ENDED. THERE ARE ARGUMENTS WHY THESE POST TRIAL RESPONSIBILITIES MAY BE LIMITED. THE FIRST IS OPPORTUNITY COSTS. THAT TO BE ABLE TO SUPPORT POST TRIAL CARE FOR PARTICIPANTS, STAKEHOLDERS MAY HAVE TO FOREGO OTHER VENTURES INCLUDING IMPORTANT FUTURE TRIALS TO BENEFIT THE PATIENT POPULATION AT LARGE. RELATEDLY THERE'S A TRADE OFF BETWEEN RESEARCH GOALS AND CLINICAL CARES AND IN THIS CASE WHERE THE CARE IS RELATED TO RESEARCH PARTICIPATION, THAT BOUNDARY BECOMES SOMEWHAT UNCLEAR. AND LASTLY M. ARGUE AS LONG AS THE PATIENTS WERE INFORMED OF, UNDERSTOOD AND CONSENTED TO A LACK OF KO CON CREE ARRANGEMENTS AROUND POST TRIAL CARE THE LACK OF ARRANGEMENTS MAY BE ACCEPTABLE. SOME OF YOU MAY RECALL THAT THE NEW WORKSHOP THAT DISCUSSED POST TRIAL CARE BACK IN 2017, AND THE GROUP CONCLUDED THAT THERE ARE NO DEFINITIVE ETHICAL OR REGULATORY FRAMEWORKS OR EVEN STANDARD PRACTICES REGARDING POST TRIAL CARE FOR DEVICES. THE NEW DRAFT HAD THREE POINTS TO CONSIDER THAT POST TRIAL NEEDS TO BE ANTICIPATED AHEAD OF THE TRIAL WITH DIFFERENT SCENARIOS PLANNED FOR THAT PROFESSIONAL STAKEHOLDERS HAVE A LIMITED SHARED RESPONSIBILITY TO TAKE REASONABLE STEPS TO FACILITATE CONTINUED ACCESS TO DEVICES THAT BENEFIT PARTICIPANTS AND MAY HAVE FURTHER RESPONSIBILITIES. AND THAT PATIENTS SHOULD BE INFORMED ABOUT THESE POST TRIAL NEEDS AND PLANS. SO WE TOOK THESE AS ASSUMPTIONS WHEN PLANNING THE WORKSHOP. AS FAR AS THE CURRENT STATE OF THE FIELD, THERE'S STILL VARIETY AS TO WHETHER STUDIES PLAN FOR ALL DIFFERENT SCENARIOS AND FOR THOSE PLANS THAT ARE MADE, THERE'S HETERO A LETTERGENAITY E HIGH LEVEL GUIDANCE THAT EMERGE INTERESTED THIS WORKSHOP. FOR EXAMPLE, WHAT ARE REASONABLE RESEARCH RELATED CARE NEEDS THAT PROFESSIONAL STAKEHOLDERS THAT SHOULD PROVIDE THAT MAY DEPEND ON THE TRIAL AND HOW MAY THESE NEEDS BE PROVIDED FOR IN AS FAR AS THEY ARE NOT CURRENTLY. AND THUS, THE GOAL OF THIS WORKSHOP IN MAY WAS TO BRING TOGETHER THE RELEVANT STAKEHOLDERS TO DISCUSS REASONABLE EXPECTATIONS FOR RESEARCH RELATED CARE PLANS THAT COULD EVENTUALLY INFORM BEST PRACTICES FOR THE RESEARCH COMMUNITY. AND SO THE WORKSHOP WAS STRUCTURED AS A SERIES OF PROGRESSIVE PANELS OV A TWO-DAYT TO GO IDENTIFY POST TRIAL RESEARCH CARE NEEDS AND SECOND TO UNDERSTAND WHAT IS CURRENTLY IN PLACE TO PROVIDE FOR THOSE CARE NEEDS AND THIRD TO IDENTIFY WHAT SHOULD BE THE MINIMUM OR REASONABLE LEVEL OF RESEARCH-RELATED CARE THAT SHOULD BE FACILITATED AND LASTLY, TO CONSIDER THE DIFFERENCE BETWEEN WHAT IS CURRENTLY PROVIDED AND WHAT SHOULD BE. YOU'VE SEEN THE SCREEN SHOT BEFORE BUT I WANTED TO SHOW IT ALSO AS A WAY TO POINT OUT THE BREADTH AND DIVERSITY OF PERSPECTIVES WE WERE AND WORKSHOP AND I DO WANT TO HIGHLIGHT THAT OVER THE COURSE OF THE TWO DAYS, WE WERE ABLE TO BRING A WIDE VARIETY OF PERSPECTIVES TO THE VIRTUAL TABLE. AND THIS INCLUDED MULTIPLE PATIENT PERSPECTIVES, HE HAVE PHYSICIAN, INVESTIGATORS, DEVICE MANAGERS, INSURANCE PAYERS INCLUDING CMS AND PRIVATE INSURANCE AND REPRESENTATIVES AND RESTRAIGHTORS AND AS WELL AS THE FDA AND THE VARIOUS SESSIONS WERE CO MODERATED BY NEWG MEMBERS AS WELL AS NIH STAFF. SO MOVING INTO SOME OF THE KEY THEMES WE HEARD FROM EACH OF THE PANELS. WHAT NEEDS MIGHT STUDY PARTICIPANTS HAVE IN RELATION TO THEIR TRIAL PARTICIPATION AFTER A TRIAL ENDS. WE HEARD A NEED TO BE CONTINUED ACCESS TO AN ALREADY IMPLANTED DEVICE, PARTICULARLY IF THE PATIENT IS BENEFITING. WE HEARD ABOUT A NEED FOR FOLLOW-UP CARE AND DEVICE SUPPORT AND MAINTENANCE AND THIS COULD INCLUDE FOR EXAMPLE, ACCESS TO SPECIALIZED CLINICIANS AND COMPATIBLE HARDWARE AND REPLACEMENT PARTS AS WELL AS THE ASSOCIATED SURGERY COSTS, AND COMPATIBLE SOFTWARE. WE ALSO HEARD ABOUT EMERGING INSURANCE SYSTEMS AND HELPING PATIENTS TO FIND ADDITIONAL CLINICAL TRIAL OPPORTUNITIES OR TREATMENT OPTIONS AFTER THE STUDY COMPLETES AND TO HELP NAVIGATE THE RECEIPT OF CARE FOR OLDER VERSIONS OF MEDICAL DEVICES INCLUDES THOSE THAT MAY NOT BE FDA APPROVED. AND IN ADDITION, WE HEARD ABOUT A NEED WE HEARD IT CAN BE POSSIBLE TO REQUEST FUNDS FOR EX PLANTATION IN AN APPLICATION BUT IT ISN'T CONSISTENTLY DONE AND WE ALSO HEARD A PATIENT PERSPECTIVE THAT DEVELOPING A DECISION OR POSSIBLE CONTINGENCY PLANS CAN BE PRESENTED TO PATIENTS MAY BE HELPFUL TO HELP THEM UNDERSTAND THEIR OPTIONS RELATED TO EXPLANTATION. OTHER NEEDS WE HEARD ABOUT INCLUDED DEVICE REPLACEMENT, ALSO REQUIRING HARDWARE IN SURGERY COSTS, PSYCHOLOGICAL SUPPORT AND NEED FOR REASONABLE OPTION AND CLARITY FOR FUTURE ACCESS OF CARE AND ASSOCIATED OUT OF POCKET COSTS AND THIS COULD BE ACHIEVED THROUGH REGISTRY. AND I WANT TO HIGHLIGHT HERE SOME QUOTES FROM THE PATIENT VOICES THAT WE HAD AT THE WORKSHOP. SO TWO QUOTES FROM TWO DIFFEREN. IT'S NOT AN EXPERIMENT, IT'S A WAY TO KEEP ME ALIVE. WE KNOW THIS WORKS. THE OPTIONS FOR ME WERE TRY THIS OR DEATH. I WASN'T THINKING ABOUT THE FUTURE. THREE YEARS IN WITH A BATTERY THAT IS SAID TO LAST 15 YEARS, I'M THINKING ABOUT WHAT WILL HAPPEN 20 YEARS FROM NOW AND I THINK THESE QUOTES ARE POWERFUL AND EXPRESSING THESE PERSPECTIVES. AS WE SHIFTED TO PANEL TWO WE HEARD FROM PROFESSIONAL STAKEHOLDERS AND THEIR PERSPECTIVES ON WHAT THEY PROVIDE AND OVER ALL WHAT WE TOOK AWAY IS THAT ALL STAKEHOLDERS COVER SOME POST TRIAL NEEDS AND SOME NEEDS ARE GENERALLY COVERED BY A PATIENT HEALTH AND THEY HAVE INSURANCE AND THIS INCLUDES EMERGENCY CARRIE LATING TO SIDE EFFECTS OR DEVICE COMPLICATIONS AND ROUTINE MEDICAL CARRIE LATED TO MEDICAL CONDITION, FOR EXAMPLE, THROUGH SPECIALIST APPOINTMENTS AN AND EXPLANTATION DUE TO A MEDICAL INDICATION. WE HEARD THAT OTHER POST TRIAL RESEARCH RELATED CARE NEEDS, ARE NOT CONSISTENTLY PROVIDED. INSTEAD, THERE ARE A NUMBER OF FACTORS THAT DETERMINE COVERAGE AND PROVISION OF THESE POST TRIAL CARE NEEDS. ONE IS THE RELATIVE SUCCESS OF THE DEVICE SO WHETHER THE DEVICE HAS BEEN APPROVED AND DETERMINING FDA APPROVAL WILL REQUIRE EVALUATION OF DATA, OFTEN EVALUATED ON A CASE-BY-CASE BASIS. AND ANOTHER FACTOR DETERMINING COVERAGE INCLUDES WHETHER THE PARTICIPANT HAS INSURANCE AND WHICH INSURANCE IT CAN VERY FROM PROVIDER TO PROVIDER AND EVEN WITHIN THIS SO WHETHER AN INSURANCE PAYER WILL PROVIDE COVERAGE IS INFLUENCED BY WHETHER THE DEVICE HAS BEEN FDA APPROVED FOR CLINICAL USE AND FOR WHAT INDICATION AND AS WELL AS WHETHER RESEARCH DATA IS SUFFICIENT TO QUALIFY FOR PUBLIC OR PRIVATE HEALTH INSURANCE COVERAGE. AND ANOTHER FACTOR DETERMINING COVERAGE IS WHETHER THERE ARE AVAILABLE FINANCIAL RESOURCES AND LEADERSHIP SUPPORT IN THE PROFESSIONAL ORGANIZATIONS THAT ARE INVOLVED IN THE TRIAL. WHETHER SOME OF THE POTENTIAL AVAILABLE MECHANISMS THAT COULD PROVIDE COVERAGE ARE UTILIZED AND KNOWN AND IF THEY ARE KNOWN, IF THEY'RE KNOWN WELL ENOUGH IN ADVANCE FOR ANY PREPARATIONS TO SUBMIT THE PAPERWORK OR INFORMATION TO ACHIEVE COVERAGE AND FINALLY IS THE AVAILABILITY OF THESE PATIENTS TO COORDINATE CARE. SO A GENERAL TAKE HOME POINT FROM OUR FIRST DAY, WAS THERE WAS REALLY NO-ONE-SIZE-FITS ALL. AND THAT MEANT AS WE SHIFTED INTO OUR THIRD PANEL, AROUND WHAT SHOULD BE PROVIDED, WE WERE FACED WITH SOME INITIAL REALITIES ABOUT FACILITATING RESEARCH-RELATED CARE. THAT THERE ARE NO PERFECT SOLUTIONS, THAT DESPITE LOTS OF PLANNING, SCENARIOS CAN ALWAYS ARISE THAT HAVEN'T YET BEEN PLANNED FOR. WE ALSO TOOK AWAY THAT THE RESPONSIBILITIES MUST BE SHARED BUT TO ALSO ACKNOWLEDGE THAT EACH PROFESSIONAL STAKEHOLDER HAS LIMITS RELATING TO THEIR ORGANIZATIONAL MISSIONS AS WELL AS THEIR AVAILABLE RESOURCES AND YET DESPITE THIS THAT THERE'S MORE THAT WE MUST DO. SO FROM PANEL 3 FARCE WHAT WE SHOULD PROVIDE TO PARTICIPANTS AFTER TRIALS, WE HEARD ABOUT A PLAN FOR POST TRIAL CARE AHEAD OF THE TRIAL. THIS IS A FAMILIAR POINT. THIS COULD INCLUDE PERHAPS SOME FORM OF GUIDANCE OR GUARDRAILS IN MAKING DECISIONS AROUND POST-TRIAL CARE. WE HEARD ABOUT IMPROVED CONSENT REGARDING POST-TRIAL CARE AS WELL AS CLARITY ABOUT FUTURE ACCESS TO CARE AND ASSOCIATESSED OUT OF POCKET EXPENSES AND WE HEARD THAT WHAT SHOULD ALSO BE PROVIDE SOLDIER POSTED-TRIAL ACCESS TO DEVICE AND DEVICE MAINTENANCE FOR PARTICIPANTS EXPERIENCING BENEFITS FOR THOSE WHO LACK ALTERNATIVE OPTIONS AND THIS WOULD INCLUDE ALL THE NECESSARY HARDWARE AND SOFTWARE UPDATES AS WELL AS THE ASSOCIATED CARE COSTS. IN ADDITION, WE HEARD THAT WE SHOULD ALSO BE ABLE TO PROVIDE SUPPORT FOR TRANSITION TO PATIENTS WHO ARE NOT ABLE TO GET POST-TRIAL ACCESS. ABOUT EXPLANTATION IF IT'S MEDICALLY IMPLICATED AND IF IT'S AN ELECTIVE CHOICE FOR EXPLANTATION AND TO ALSO BE ABLE TO IMPROVE THE AVAILABILITY OF RESEARCH DATA TO PARTICIPANTS AS WELL AS OTHERS. AS WE MOVED INTO THE LAST SESSION, WE WANTED TO TRY TO COALESCE INFORMATION FROM THESE FIRST THROW PANELS TO COLLECTIVELY BRAINSTORM SOLUTIONS AND ADDRESS SOME OF THE POTENTIAL GAPS THAT WERE IDENTIFIED. SO AS FAR AS WHAT WE HEARD FROM THE FOURTH SESSION IN TERMS OF CONSIDERATIONS FOR TRIAL DESIGN, I THINK OVER ALL, WE HEARD THAT WHILE THERE ARE NO PERFECT SOLUTIONS, WE WANT TO TRY TO PLAN FOR DIFFERENCE SCENARIOS UNDERSTANDING THAT MOST PLANS INVOLVE DIFFERENT STAKEHOLDERS, CONTRIBUTING DIFFERENT PORTIONS, AND THAT IN THE SESSION THERE WERE POTENTIAL SOLUTIONS THAT WERE DISCUSSED FOR EACH OF THE POST TRIAL MEANS MENTIONED AND AS FAR AS TRIAL DESIGN, WE HEARD ABOUT AN IMPORTANCE OF PATIENT INVOLVEMENT EARLY ON IN THE TRIAL DESIGN AND INCLUDING IDENTIFYING AND PLANNING FOR POST TRIAL NEEDS BY HEARING FROM THESE PATIENT VOICES. ANOTHER CONSIDERATION IS CARRYING CARE NEEDS AND RECHARGEABLE BATTERIES THAT LIMIT THE NUMBER OF PROCEDURES THEY HAVE TO UNDERGO. THE USE OF INTERCHANGEABLE HARDWARE COMPONENTS IF POSSIBLE IN THE DESIGN OF DEVICES FOR SAFE AND EASY REMOVAL. FOR TRIAL DESIGN WE HEARD ABOUT AN EARLY INVOLVEMENT FOR THE PAYORS, CMS OR OTHER PRIVATE PAYORS AND I THINK ANOTHER CROSS CUTTING THEME ACROSS THESE CONSIDERATIONS FOR TRIAL DESIGN ALSO INCLUDED CONVERSATIONS AROUND DIVERSE PARTICIPANT ENROLLMENT CONSIDERING SOME OF THE FINANCIAL BURDENS THAT ARE ASSOCIATED WITH PARTICIPATION AND THESE TRIALS AS WELL AS LONG-TERM FOLLOW-UP RESEARCH TO BE ABLE TO STUDY PATIENT OUTCOMES AND SAFETY. AND SO SOME OF THE ONE BULLET POINT OR TAKEAWAY FROM EACH OF THESE SESSIONS MIGHT BE AS FOLLOWS -- THE DURATION AND BREADTH OF THESE POST TRIAL CARE NEEDS COULD POTENTIALLY LAST A PERSON'S LIFETIME. THAT WE HEARD A FEW POST TRIAL CARES ARE GENERALLY COVERED BY PATIENTS INSURANCE AND THAT OTHERS ARE INCONSISTENTLY PROVIDED. THERE ARE NO PERFECT SOLUTIONS AND POSSIBLE SCENARIO AND THERE WAS COLLECTIVE AND SHARED ENTHUSIASM FOR WANT TO GO DO MORE. WE BRAIN STORMED SOLUTIONS BASED ON HOW THESE PROFESSIONAL STAKEHOLDERS MIGHT PROVIDE OR FACILITATE POST TRIAL CARE NEEDS FOR THESE PARTICIPANTS. AND I THINK OVER ALL, THERE WAS ALSO AN UNDERSTANDING AROUND THE NEEDS TO MITIGATE EQUITY IN THE HEALTH-CARE SYSTEM TO UNDERSTAND THAT THIS MAY BE AN IMPORTANT SPACE FOR IN OVATION AND SOLUTIONS FOR PROVIDING POST TRIAL CARE AND I WANT TO EMPHASIZE THOSE TWO POINTS. AND SO IN TERMS OF NEXT STEPS WHICH I WILL ALSO SAY ARE VERY MUCH ON GOING, BUT FROM THE WORKSHOP, WE HEARD A LOT ABOUT QUANTIFY THE UNDER MET NEEDS AND SOME OF THE THESE EXISTING RISK AND IT CAN BE HARD TO QUANTIFY WHAT IS CURRENTLY NOT YET AVAILABLE BUT AS MUCH AS POSSIBLE, THE EX TENTS THAT WE CAN USE A DATA-DRIVEN APPROACH TO UNDERSTAND NEXT STEPS THAT WOULD BE USEFUL. WE ARE CURRENTLY INVESTIGATING THE FEASIBILITY OFFS SOME OF THE POTENTIAL SOLUTIONS THAT WERE BRAIN STORMED AND RAISED IN OUR LAST PANEL. WE HEARD A LOT ABOUT THE IMPORTANCE OF THESE MULTI STAKEHOLDERS COLLABORATIONS, UNDERSTANDING THAT DIFFERENT STAKEHOLDERS CAN CONTRIBUTE DIFFERENT PORTIONS, OR POST-TRIAL CARE. WE ALSO DISCUSSED SOME PRIORITIES FROM THE SOLUTION THAT'S WERE RAISED, WHAT MIGHT BE SHORT, MID AND LONG-TERM SOLUTIONS TO HELP US MOVE FORWARD. AND OVER ALL, I THINK WE THOUGHT CONSENSUS WAS THE WORKSHOP WAS PROGRESS IN A COMPLICATED TOPIC AND IT'S A BEGINNING OF A CONVERSATION AND A DIALOGUE AND ALSO AN EARLY IMPORTANT STEP FOR DEFINING AND MANAGING REASONABLE EXPECTATIONS FOR POST TRIAL CARE PLANS. SO I THINK WITH THAT -- I GUESS THE SLIDES DIDN'T MATCH. THERE WE GO. I WANT TO THANK YOU ALL FOR YOUR ATTENTION AND I CAN POINT YOU, YOU WILL SEE IN THE SLIDE HERE, THERE'S A LINK TO THE WORKSHOP WEBSITE AND INCLUDING THE AGENDA, BOTH DAYS OF THE VIDEO CAST AND I WANT TO GIVE A BIG THANK YOU TO THE WORKSHOP PLANNING COMMITTEE ESPECIALLY Dr. SASKIA HENDRIKS AS WELL AS MANY OTHERS WHO HELPED FACILITATE AND MAKE THE WORKSHOP HAPPEN. I'M HAPPY TO TAKE QUESTIONS AND ALSO, HEAR REFLECTIONS FROM THE NEWG MEMBERS WHO ATTENDED AND WE'LL CONTINUE THE CONVERSATION AROUND THE WORKSHOP LATER ON TODAY. THANK YOU. >> THANK YOU, NINA, FOR THAT EXCELLENT SUMMARY. DO PEOPLE HAVE QUESTIONS FOR NINA? OR COMMENTS? ADDITIONAL MEMORIES? >> JIM? >> THAT WAS REALLY AN AMAZING REVIEW AND IT HELPS ME REMEMBER ASPECTS OF WHAT WE DISCUSSED MANY TIMES IN THE PAST AS WELL. ONE OF THE THINGS I WONDERED WAS, IN TERMS OF DATA -- MAKING DATA AVAILABLE TO OTHERS, AFTER THE TRIAL, WHAT WERE SOME OF THE DISCUSSIONS ALONG THOSE LINES? HOW DID THE INDIVIDUALS, THE PATIENTS AS WELL AS THE PRIVATE PROVIDERS THINK ABOUT GETTING THAT DATA TO PEOPLE FOR USE IN OTHER STUDIES? >> >> THANK YOU, JIM FOR THE QUESTION. IT'S A GREAT ONE. I THINK IT WAS COMPLICATED. SO I THINK WHAT I REMEMBER FROM THE PATIENTS AND I WOULD INVISIT OTHERS WHO ARE AT THE WORKSHOP TO PLEASE, ALSO CHIME IN. IS THAT, WI WHAT THE PATIENTS EXPRESSED WAS MAKING THAT DATA AVAILABLE COULD FACILITATE CARE FOR THEM, IF THEY WANT TO, FOR EXAMPLE, BE IN A DIFFERENT LOCATION AT SOME POINT IN THEIR LIFE. SO I THINK SOME OF THESE PATIENTS HAVE MOVED TO WHERE THESE STUDIES ARE HAPPENING TO BE ABLE TO BE NEARBY. IF THEY WERE TRAVELING AND WINDED UP IN A DIFFERENT LOCATION AND SOMETHING HAPPENS, HAVING THAT DATA AVAILABLE TO A PROVIDE THEY'RE IS DIFFERENT THAN THEIR TRIAL PROVIDER COULD HELP THEM HAVE A CONTINUOUS STREAMLINED LEVEL OF CARE SHOULD A NEED ARISE. AT THE SAME TIME, MAKING THAT DATA AVAILABLE FROM THE PROFESSIONAL STAKEHOLDERS, COULD BE CHALLENGING. IT RAISES CONCERNS AROUND REPOSITORIES PERHAPS DATA SHARING AND PRIVACY CONCERNS AS WELL SO I DIDN'T THINK THERE WAS STRONG CONCLUSIONS THERE BUT THERE ARE MULTIPLE PERSPECTIVES THERE TO CONSIDER IN MAKING THAT DATA AVAILABLE. >> THANK YOU FOR THAT. IT REALLY IS A COMPLICATED ISSUE. JUST A FOLLOW-UP BEFORE I TURN IT OVER. THE OTHER THING IS, YOU HIGHLIGHTED WAS MAXIMIZING THE BENEFIT. AND ONE OF THE THINGS THAT I THINK SHOULD ALWAYS BE TRUE IS THE PATIENTS INVOLVED SHOULD HAVE ALL GENOME SEQUENCING SO AS THEY RECOVER FROM TREATMENT OR THEY RESPOND IT TREATMENT, THERE'S A GENETIC AGAIN ET DICO CORRELATE DATA WITH THAT SO IN TERMS OF MAXIMIZING DATA, WAS THERE A DISCUSSION OF EXPANDING THESE TRIALS TO GO BEYOND THE PARTICULAR THING THAT THEY'RE TRYING TO TREAT TO MAKING DATA LIKE IS THAT MORE GENERALLY AVAILABLE AND SO -- THANK YOU, JIM. I DON'T RECALL THAT COMING IN THE DISCUSSION. >> I DON'T THINK SO. >> THERE WAS A CALL FOR INCREASING DATA SHARING BUT ALL THE SCIENTIFIC BENEFITS ASSOCIATED WITH THAT WITH ALL THE RESEARCH RESEARCH I MEAN. >> >> REALLY NICE PRESENTATION AND REALLY NICE MANUSCRIPT. I HAVE TWO COMMENTS. I'LL DO ONE FOR NOW FOR THE SAKE OF TIME AND THERE'S TIME WE'LL COME BACK OTHERWISE WE CAN DO THIS OVER E-MAIL BECAUSE IT'S A LITTLE MORE SPECIFIC TO THE MANUSCRIPT MAYBE. THE ONE IS -- INTENTIONALLY, A LOT OF THE FOLKS HERE WAS ON DEVOICES, IMPLANTS THAT SORT OF HAVE THE POSSIBILITY FOR CONTINUATION BECAUSE THERE'S A COMMERCIAL VERSION OF IT OR THERE'S RECHARGEABLE VERSION OR WHATEVER. MOST OF THESE THINGS OR THERAPIES COULD BE CONTINUED BECAUSE THE COMPANIES WILL BE AROUND AND THERE ARE VERSIONS OF COMMERCIAL VERSIONS THAT RESEARCHERS AND PARTICIPANTS CAN GET FOR EXAMPLE. I THINK KIND OF LIKE MY PREVIOUSLY COMMENT, WHERE ARE WE GOING AND WHAT'S IN THE FUTURE AND THERE'S MORE AND MORE OF THESE ONE-OFFS START UP AND NEURO TEXT TYPES OF DEVICE AND WE SEE THEM ALL OVER THE PLACE. AND THESE THINGS ARE NOT NECESSARILY REMOVABLE AND YOU THINK OF THE STENTS AND THE THREADS BEING SEWN INTO YOUR BRAIN. NUMBER TWO, IF IT DOESN'T WORKOUT, THEY'RE ORPHANED AND STUCK IN PEOPLE. THIS IS NOT A NEW CONCEPT. WE'VE DEALT WITH THIS BEFORE. ONE THOUGHT I HAD IN READING SOME OF THOSE TABLES IN THE MANUSCRIPT IS, IS THERE A CONCEPT LIKE THERE'S A BENEFIT AND RISK AND SOME OF THESE THINGS LIKE OK HAVING THESE THREADS SEWN NO YOUR BRAIN HAS RISK SO IT CAN ALL BE DELINEATED AND APPROPRIATELY SO FOR POTENTIAL PARTICIPANTS, BUT YOU KNOW, HOW MUCH DO WE TALK ABOUT FUTURE RISK OF BEING STUCK WITH AN IMPLANT THAT'S NOT SUPPORTED, ET CETERA. IT'S ALWAYS BEEN AROUND BUT I DON'T KNOW THAT WE'VE SORT OF TRIED TO CALCULATE THIS CONCEPTS OF FUTURE RISK AND TRIED TO BALANCE IT BY SOME SORT OF CURRENT BENEFIT. IS THERE SOMETHING THAT THESE FOLKS SHOULD BE GIVEN, PROMISED, WHATEVER, UP FRONT, TO ACCOUNT FOR THIS FUTURE RISK THAT THEY'RE TAKING, THAT IS VERY CLEAR, YOU KNOW, FOR THESE KIND OF ONE-OFF TYPE DEVICES. WE FACED THIS SITUATION BEFORE BUT I'M NOT SURE WE CALCULATED IT ASK TRIED TO BALANCE WITH THE CURRENT WITH THE FUTURE. IS THAT A THING? IS THAT POSSIBLE? >> I THINK IT'S A THING. ONE OF THE THINGS WE HEARD DURING THE WORKSHOP IS THAT, INFORMED CONSENT WHEN IT COMES TO POST TRIAL NEEDS MIGHT CURRENTLY NOT BE SUFFICIENT IN TERMS OF, WE DON'T INFORM PEOPLE ENOUGH ABOUT RISK AND BENEFITS THAT THEY MIGHT ENCOUNTER AFTER THE TRIAL HAS ENDED. THE RESEARCH REGULATIONS ALSO I DON'T SAY ANYTHING ABOUT WHAT YOU HAVE TO SAY ABOUT THAT IN NEW CONTENT FOR EXAMPLE, AND I THINK THERE WAS ONE OF THE IMPORTANT TAKEAWAYS FROM THE MEETING IS THAT WE REALLY NEED TO DO BETTER ABOUT THE INFORMED CONSENT WHEN IT COMES TO POST TRIAL NEEDS WE WE NEED TO DO MORE AND WE DEFINITELY NEED DO THAT. >> ONE THING THAT STRUCK ME AND YOU GUYS PROBABLY SEE THIS IN YOUR OWN PRACTICE BECAUSE HEARING FROM THE PATIENTS, THE TWO PATIENTS TELLING US, GETTING THIS DEVICE WAS FOR THEM A MATTER OF LIFE AND DEATH. IT WASN'T ABOUT MAKING THEIR LIVES CRA MENTALLY BETTER IT WAS ABOUT WHETHER THEY WERE GOING TO BE ALIVE TOMORROW. AND I THINK PUT IN THOSE TERMS, THE IMMEDIATE POTENTIAL BENEFIT AND THE FUTURE RISK, I MEAN, THERE'S ALMOST NO CALCULATION. IF I WERE IN THAT POSITION, THERE WOULD BE NO CALCULATION, RIGHT. SO THIS TO ME IS GOING TO BE SOMETHING THAT WE NEED TO DEAL WITH BECAUSE YOU KNOW, AT WHAT POINT ARE PEOPLE TRULY ABLE TO MAKE, WHAT IS A GOOD DECISION, IT'S NOT UP TO US TO MAKE IT FOR THEM AND IT'S OUR RESPONSIBILITY THAT WE ARE NOT PUTTING POEM IN POSITIONS OF UNDUE INFLUENCE AS WELL. ALL THESE THINGS WRAPPED IN TOGETHER IT'S A GREAT POINT YOU RAISED BUT WHAT STRUCK HOME TO ME WAS YEAH, THIS ISN'T JUST ABOUT MAKING MY LIFE BETTER IT WAS ABOUT BEING AROUND TOMORROW. I THINK WHEN YOU PUT IT IN THOSE TERMS, THOSE CALCULATIONS JUST KIND OF GO OUT THE WINDOW. >> RIGHT. FOR SURE. ON THE OTHER HAND THOSE ARE ABOUT ABOUT THESE COMPANIES ARE TALKING ABOUT ENHANCEMENT ALREADY, AND SO, WHEN IT'S LIKE I'M OK NOW, OR I'M SOME STABLE STATE, CAN I MACK MYSELF BETTER, WHAT'S THE POTENTIAL UNKNOWN FUTURE RISK OF THAT AND HOW CAN YOU BALANCE THAT RIGHT NOW. THERE'S A REFERENCE TO SOME UNPUBLISHED THING BY GABE AND ANOTHER THING FROM ANNA WE CAN LER, MAYBE IT'S THE SAME THING, THERE'S SO MUCH THAT IS NOT ABSORBED DURING THE CONSENT PROCESS AND THIS WOULD BE SO EASY TO JUST GLOSS OVER. EVEN A VERY SOPHISTICATED PERSON PAYING A LOT OF ATTENTION WOULD NOT THINK WHAT HAPPENS YEARS FROM NOW WHEN THIS COMPANY FOLDS AND I'M STUCK WITH THIS THING. ANYWAY, THANKS. >> IT'S NOT A HYPOTHETICAL. >> IT'S ALREADY HAPPENED AND IT'S GOING TO HAPPEN AGAIN, A LOT. >> I JUST WANTED TO INTERJECT WITH RESPECT TO THAT THREAD. IT'S NOT JUST THE PATIENT WHOSE LIFE OR DEATH DECISION HAS BEEN ENCOURAGED OR HELPED WITH THIS. THEIR LIVES HAVE BEEN EXPANDED IT'S THEIR FAMILIAR LOWS AS WELL. CAREGIVERS AND EVERYONE ELSE WHO IMPACTED BY THAT PATIENT'S BENEFIT FROM THIS DEVICE. SO IT GOES EVEN BEYOND THAT. >> VERY IMPORTANT POINT. WE'RE OUT OF TIME BUT WE HAVE TWO MORE HANDS UP SO WE'LL GO WITH THOSE, HANK -- >> GOOD, SO I LOVE THE WORKSHOP. IT WAS A GREAT WORKSHOP. PARTICULARLY HEARING FROM THE PATIENTS PARTICIPANTS AND ALSO BASICALLY EVERYBODY THERE WAS VERY SYMPATHETIC BUT EVERYBODY THOUGHT IT WAS A REAL HARD PROBLEM. I HERDS ABOUT THIS 15 YEARS AGO WHO FROM HELEN WOULD WAS DEDICATED TO THIS ISSUE FOR A LONG TIME AND FROM THE BEGINNING OF THE NEWG, THIS IS ONE OF THE THINGS WE WERE TALKED ABOUT AND IT'S FRUSTRATING THAT WE HAVE NOT BEEN ABLE TO MAKE MORE PROGRESS AND I COMMAND IT TO FUTURE NEWG CONSIDERATION AND WONDER IF IT NEEDS TO BE HEALTH WITH AT THE NEWG BECAUSE IT HAS BRAIN INITIATIVE WHICH IS ON MORAL RESPONSIBILITIES AND MAYBE THERE SHOULD BE A NATIONAL ACADEMY STUDY OF IT AND IT'S NOT GOING TO COME STRAIGHT FROM BRAIN INITIATIVE AND IT WILL TAKE HIGHER AUTHORITIES TO WORK SOMETHING OUT THAT WILL MAKE THIS MORE ETHICALLY APPROPRIATE. >> THANK YOU. CAROLINE -- >> THANK YOU, CHRISTINE AND THANK YOU TO THE ORGANIZERS OF THAT WORKSHOP. NINA, WONDERFUL JOB SUMMARIZING THE DISCUSSION THROUGHOUT THAT WORKSHOP. I LEARNED A LOT FROM IT AND I REALLY APPRECIATED THE PERSPECTIVES THAT WERE BROUGHT IN BY PATIENTS WHO HAVE BEEN INVOLVED IN THESE STUDIES AS WELL AS THE RESEARCHERS WHO WERE DOING REALLY DEEP QUALITATIVE INTERVIEWS WITH THESE PATIENTS AS THEY'RE OUTGOING FROM THESE STUDIES. ONE THING THAT STRUCK ME FROM SARAH GERRING AND GUPTA'S TALK WAS THEY DISCUSSED PATIENT COMMENTS ABOUT THEIR RELATIONSHIP WITH RESEARCHERS, SAYING THINGS LIKE, WE'VE BECOME MORE LIKE FAMILY AND THAT RESEARCHER-PATIENT BOND SOUNDS LIKE IT CAN DEVELOP INTO A DEEP ONE AND RELATES TO THE EVOLUTION OF THE INDIVIDUAL SOCIAL SIGH DEN TEE OF THAT PATIENT AND THIS SEEMS RELEVANT WHEN YOU THINK ABOUT THE EXTENDED WELLBEING OF THE PATIENT AFTER THEIR RECOVER ROW FROM A SERIOUS ILLNESS. WHEN I THINK ABOUT SOME OF THE POINTS THAT YOU MENTIONED, NINA, IN YOUR SUMMARY. THE CLINICAL CONSULLATION ASPECT OR SUPPORTING THE TRANSITION FOR PATIENTS THAT DON'T GET POST TRIAL ACCESS, I WONDER WHETHER WE COULD ALSO ACKNOWLEDGE THAT THE ON GOING NEEDS OF PATIENTS GO BEYOND THE TECHNICALITIES OF THE DEVICE MONITORING AND POST TRIAL RESPONSIBILITIES BEYOND POST TRIAL ACCESS AND I JUST WONDER IF WE CAN PULL THAT THREAD A LITTLE BIT MOIR STRONGLY BASED ON WHAT QUESTION HEARD FROM THAT WORKSHOP. >> I CAN START. I THINK AND EXCELLENT POINT AND IT WAS NOT ONLY REITERATED FROM SARAH AND E SHAWN PRESENTATION BUT A PARTICIPATE SAID HE WOULD DO ANYTHING FOR THESE INVESTIGATORS BECAUSE OF WHAT THEY'VE DONE FOR HIM, ONE SEAN WHAT THEY'VE DONE FOR HIM AND SO I THINK IT'S A REALLY IMPORTANT POINT, THE RELATIONAL COMPONENTS OR RELATIONSHIP-DRIVEN COMPONENTS AROUND POST TRIAL CARE THAT GO BEYOND THE TECHNICALITIES. >> I WANT TO RESPOND TO CAROLINE'S IDEA ABOUT IT GOES BEYOND ACCESS TO THE DEVICE AND THERE ARE THESE SORT OF ADJACENT NEEDS THAT MANY OF THE PEOPLE IN THE WORKSHOP EXPRESSED ARE ALMOST AS IMPORTANT, YOU KNOW, YOU HAVE TO HAVE ACCESS TO THE DEVICE BUT YOU NEED ACCESS TO A SPECIALIST AND YOU NEED SOME KIND OF COORDINATION OF CA AND A LOT OF THINGS THAT GO AROUND THE DEVICE THAT ARE NOT THE DEVICE ITSELF. SO IT'S REALLY IMPORTANT POINTS. WITH THAT, WE'RE GOING TO TURN TO OUR LAST SESSION OF THE OPEN SESSION, WHICH I'M GOING TO TURNOVER TO HANK. BEFORE I DO, I'M GOING TO STEAL A COUPLE OF MINUTES TO PUBLICLY THANK HANK FOR HIS LEADERSHIP AS A CO-CHAIR OF THE BRAIN NEUROETHICS WORKING GROUP. FOR ME IT'S BEEN A TRUE PRIVILEGE TO WORK CLOSELY WITH HANK OVER THESE LAST SEVERAL YEARS AND WE'VE BOTH FORMED THE NEWG AND SAW IT INTO ITS CHILDHOOD, I WOULD SAY. SO I'M GOING TO SAY A FEW WORDS. AS MOST OF YOU KNOW, HANK IS A DISTINGUISHED SCHOLAR WITH A WIDE RANGE OF TALENTS AND ACCOMPLISHMENTS. HIS BIO SAYS HE SPECIALIZES IN THE ETHICAL, LEGAL AND SOCIAL IMPLICATIONS OF NEW BIOMEDICAL TECHNOLOGIES, PARTICULARLY THOSE RELATED TO GENETICS, ASSISTED REPRODUCTION, AND NEUROSCIENCE OR STEM-CELL RESEARCH, THAT'S A WIDE RANGE OF STUFF. HANK IS THE PROFESSOR OF LAW AT STANFORD LAW SCHOOL AND A PROFESSOR BY COURTESY OF GENETICS AT STAN FORDS MEDICAL SCHOOL AND HE IS ALSO THE DIRECTING DIRECTOR OF THE STANFORD FOR LAW AND BIO SCIENCES AND THE DIRECTOR OF THE STANFORD PROGRAM IN NEUROSCIENCE AND SOCIETY. HE HAS A FOUNDER AND PAST PRESIDENT OF THE INTERNATIONAL NEWER NEUROETHICS SOCIETY AND CHANGE OF THE ETHICAL AND LEGAL SOCIAL ISSUES COMMITTEE OF THE EARTH BIO GENOME PROJECT AND CHAIR OF CALIFORNIA HUMAN STEM CELL RESEARCH ADD VOICE RECOMMITTEE AND SERVED ON COMMITTEES AND ADVISORY BOARDS INCLUDING MANY FOR THE NIH. HE IS ALSO PUBLISHED SEVERAL BOOKS, INCLUDING ONE CALLED "CRISPR PEOPLE," THE SCIENCE OF EDITING HUMANS IN 2021 AND ANOTHER IN 2016 CALLED" THE END OF SE AND THE FUTURE OF HUMAN REPRODUCTION." BOTH GREAT TITLES OF BOOKS. BUT FOR US, HANK HAS BEEN AN INTEGRAL MEMBER AND LEADERS OF THIS NEUROETHICS WORKING GROUP SINCE ITS BEGINNING. HE IS A MEMBER OF THE, AS YOU HEARD ALREADY, A MEMBER OF THE NIH BRAIN INITIATIVE MULTI COUNCIL WORKING GROUP SINCE 2014 AND A GROUP HE HAS TERMED THE MICK WIG, THAT TERM HAS CAUGHT ON FOR OTHERS. THEN IN MID TO LATE 2015, HE AND I WERE ASKED BY WALTER CAROSH ETS TO CO-CHAIR A MEMBER OF THE MICK WIG AND WE WEPT THROUGH A FEW DIFFERENT NAMES AND WE WERE A SUBGROUP AND A DIVISION AND WORKING GROUP AND WE SETTLED ON WORKING GROUP AND AFTER A FEW PHONE MEETINGS IN LATE 2015, WITH MEMBERS WHO WERE INVITED TO PARTICIPATE, MANY OF YOU WHO ARE STILL HERE, WE HAD OUR FIRST MEET NORTH FEBRUARY OF 2016 AND IT SEEMS A LONG TIME AGO IN SOME RESPECT AND JUST LIKE YESTERDAY. SINCE THEN, WE'VE MET TWICE A YEAR, USUALLY IN BETHESDA AND ONCE ON STANFORD CAMPUS AND MORE ON ZOOM. HANK HAS LED US THROUGH A FEW TOPICAL WORKSHOPS AND A COUPLE OF IMPORTANT PUBLICATIONS, SOME CHALLENGING CONSULTATIONS AND LOTS OF ROBUST DISCUSSIONS. HANK IS NOT ONLY AN ACCOMPLISHED AND WISE POLY MATH BUT HE HAS A WONDERFUL SENSE OF HUMOR AND A DEEP REPERTOIRE OF INFORMATION. SOME OF WHICH IS ACTUALLY RELEVANT IN THE NEWG. [LAUGHTER] BUT NOT ALL OF IT. SO, I WANT TO THANK YOU, HANK, I DON'T KNOW IF YOU ARE STILL THERE, YOUR CAMERA IS OFF. THANK YOU, HANK, FOR YOUR MANY SIGNIFICANT CONTRIBUTIONS TO THIS GROUP. WE REALLY APPRECIATE ALL THAT YOU HAVE DONE. WE HAVE ENJOYED WORKING WITH YOU AND GETTING TO KNOW YOU. I WILL CERTAINLY MISS YOU. BUT AS YOU KNOW WELL, WE WILL BE IN GOOD HANDS WITH NITA, AS OUR NEXT CO-CHAIR. IF WE WERE NOT VIRTUAL AT THIS POINT, I WOULD OPEN A BOTTLE OF CHAMPAGNE AND TOAST TO YOU BUT I OFFER A RAIN CHECK NEXT TIME YOU ARE IN D.C. OR I AM IN CALIFORNIA, WE CAN HAVE A BOTTLE OF CHAMPAGNE. THANK YOU FOR ALL YOU'VE DONE AND I WANT TO INVITE EVERYBODY TO JOIN ME IN THANKING HANK FOR A WONDERFUL LEADERSHIP OF THIS COMMITTEE. >> WELL, THANK YOU, CHRISTINE AND I TURN MY CAMERA OFF BECAUSE I DON'T WANT IT KNOWN I CAN BLUSH. IT'S BEEN FASCINATING, IT'S BEEN CHALLENGING BUT MOSTLY IT'S BEEN FUN. IT'S BEEN FUN BOTH BECAUSE THE TOPICS ARE SO DEEPLY INTERESTING AND BECAUSE THE PEOPLE HAVE BEEN FUN TO WORK WITH. THAT IS CHRISTINE BUT IT'S ALSO EVERYBODY ELSE. ALL THE MEMBERS, JOHN, WALTER, TARA, NINA, AND ALL THE OTHER PEOPLE I'M FOR GETTING, THANK YOU FOR MAKING THE LAST SIX OR SEVEN YEARS OF MY WORK MORE INTERESTING THAN IT OTHERWISE MIGHT HAVE BEEN. >>> BUT NOW I HAVE TO WORK SOME MORE BECAUSE I'M SUPPOSED TO MODERATE THE NEXT SESSION. >> YOU HAVE TO GO BACK TO WORK AND FINISH THIS MEETING. >> TURNING IT BACK TO YOU. >> OK. WELL, THANK YOU, ALL. OUR NEXT SESSION IS AGAIN SOMETHING THAT WE REGULARLY DO THE ROUNDTABLE UPDATE. I'M GOING TO GO JUST IN THE ALPHABETICAL LIST OF MEMBERS OF THE NEWG AND SEE IF YOU'VE GOT ANYTHING THAW THINK WE SHOULD KNOW ABOUT THAT'S BEEN GOING ON IN THE WORLD OF NEUROETHICS. STARTING WITH WINSTON. ALPHABETICAL BY LAST NAME NOT FIRST NAME. ARE YOU THERE? >> ALL RIGHT. JIM. >> THANK YOU. HANK. REALLY THANK YOU FOR ALL YOUR SERVICE AND HELP THROUGH OUT THE YEARS AND YOU ARE INSIGHTS HAVE REALLY BEEN CRITICAL TO HOW THE NEWG HAS PERCEIVED BY THE OUTWARD COMMUNITY AND RESEARCHERS IN THE COMMUNITY. THANK YOU FOR EVERYTHING YOU'LL DONE. I HAVE NO UPDATE. THANK YOU. >> NITA. >> I'LL JOIN IN THE THANKS TO YOU, HANK. I WILL JUST SAY I HAVE NO PARTICULAR UPDATES BECAUSE I HAVE BEEN FINISHED COMPLETING MY BOOK WHICH IS OFF TO THE PRESSES, REORDER THE "THE BATTLE FOR YOUR BRAIN" WHICH TAKES THE ISSUES LOOKING AT DEVELOPMENT IN NEURO TECHNOLOGY AND THE IMPLICATIONS OF THINKING ABOUT IT FROM A LEGAL AND ETHICAL PERSPECTIVE SO THAT'S BEEN MY PRIMARY FOCUS AND THAT AND UPDATING THE CHARTER THAT HANK AND I OWE AT THE END OF THE WEEK ON NEUROSCIENCE FOR THE SCIENTIFIC METHODS FOR MANUAL JUDGES. THAT'S ALL FOR ME. >> SID. >> I DON'T HAVE A LOT NEW TO ANNOUNCE. I'VE BEEN WORKING WITH VARIOUS ORGS ON BRAIN DEATH AND NON-HUMAN PRIMATE RESEARCH AND ZENO TRANSPLANTATION. AND THANK YOU, HANK, FOR YOUR YEARS OF SERVICE. >> ALL THESE THANK YOUS YOU DELAYING THE BREAK. >> CAROLINE, I KNOW YOU HAD OPPORTUNITIES BUT IF THERE'S ANYTHING ELSE YOU WANT TO THROW IN THAT IS HAPPENING IN NEUROETHICS, THIS IS A GOOD TIME. >> THANK YOU, HANK. YES, I THINK I HAVE SHARED THE UPDATES THAT I HAVE COMING FROM THE DANA AND JUST ALSO ECHOING OTHERS IN THE THANKS TO YOU, HANK. I REMEMBER I THINK ONE OF MY FIRST MEETING TO LEARN A LITTLE BIT MORE ABOUT NEUROETHICS WAS WITH YOU AND OTHER MEMBERS OF THE NEWG AT THE TIME. SO, VERY, VERY INPACTFUL AND INFLUENTIAL SERVICE YOU HAVE PROVIDED TO THE FIELD. >> KAREN. >> I'M DELAYING THE BREAK BUT THANK YOU HANK FOR STEWARDING US AND PIONEERING ALL THIS. YOU ARE AMAZING CO-CHAIR TO KICK US OFF AND I HAVE ALWAYS APPRECIATED HOW WHEN WE WERE WORKING WITH THE TEAM AND THE VARIOUS SCIENTISTS YOU ALWAYS HAD ASKED, WELL, HOW CAN WE BE HELPFUL TO YOU AND WHAT CAN WE DO TO PUSH US BEYOND OUR INTELLECTUAL CURIOSITY AND HELP GROW THE COMMUNITY. I WILL SHARE TWO ACTIVITIES THAT I THINK THAT ARE RELEVANT. ONE IS THAT MANY OF YOU WORKED ON THE OECD RECOMMENDATION ON RESPONSIBILITY INNOVATION FOR NEURO TECHNOLOGY ADOPTED IN DECEMBER OF 2019. IT'S CURRENTLY IN ITS IMPLEMENTATION PHASE SO ALL 38 MEMBER STATES ARE GOING TO BE ASKED TO REPORT BACK ON HOW THEY IMPLEMENTED THOSE STANDARDS. OR THOSE PRINCIPLES AND AS PART OF THAT EFFORT, THEY HAVE BEEN WORKING WITH ORGANIZATIONS CALLED BRAIN MIND, WHICH IS A BIG ECOSYSTEM BUT REALLY UNIQUE IN ITS INVESTOR AND START UP COMMUNITY. SO THEY'VE, TOGETHER, HOSTED AN EVENT IN PARIS, THAT WAS ALSO SHARED IN PARTNERSHIP WITH THE DANA FOUNDATION AND WE EXPLORED SOME CROSS SECTORAL INTEREST COMMUNITY BUILDING AND PRIORITIES FOR SOME WORKSHOPS MOVING FORWARD. THE SECOND EVENT I WANTED TO MENTION IS ONE RELATED TO AN ORGANIZATION CALLED JES GESDA WN EXPERIMENT FROM THE SWISS GOVERNMENT THAT PASSED ITS THREE-YEAR PILOT PHASE AND HAS PARTICULAR SPECIALTY IN FORESIGHT AND ANTICIPATION AND ONE OF ITS PRIMARY FORESIGHT ACTIVITIES HAS BEEN IN NEURO TECHNOLOGY AND THEY HAVE A PROPOSAL FOR KIND OF A OBSERVATORY CALLED THE NEURO TECH COMPASS THAT WILL BE ANNOUNCED AT THEIR ANNUAL SUMMIT ON OCTOBER 12th THROUGH THE 14th IN GENEVA SO IF YOU ARE INTERESTED IN THAT YOU CAN REQUEST AN INVITATION AND I'LL PUT THE WEBSITE IN THE LINK BUT A VERY INTERESTING GROUP. THANK YOU. >> ELBA. >> SAMIR. >> HANK, THANK YOU. I WON'T TAKE UP ANYMORE TIME WITH THAT. I'LL PUT SOME MORE IN THE CHAT. ONE QUICK THING THAT I FOUND INTERESTING, LAST WEEK I WAS AT THIS MEETING AND THE DBS THINK-TANK AND I DON'T KNOW IF PEOPLE HEARD ABOUT IT BUT EVERYBODY WOULD BE INTERESTED IN IT. IT'S RUN BY THE UNIVERSITY OF FLORIDA GROUP AND IT'S ANNUAL RIGHT AROUND THIS TIME OF YEAR AND THERE'S ALWAYS A HYBRID VERSION AND AND IT HIT SOUTHERN FLORIDA SO THEY'RE GOOD AND NEURO AND THERE'S ALWAYS A SESSION ON NEUROETHICS THAT TAKES HALF A DAY AND IT'S A REAL SESSION OUT OF A TWO NIAGARA FALLS DAY MEETING AND THIS YEAR, SYDNEY WAS THERE AND IN THE PAST OTHER FOLKS THAT YOU ALL KNOW HAVE BEEN THERE AND FIRST OF ALL, IT'S A GREAT MEETING AND TUNE IN NEXT YEAR VIRTUALLY FOR THAT SESSION. BUT ONE POINT FROM THAT THAT I FOUND REALLY FASCINATING, THE LAST SESSION IN THAT MEETING WAS ON LIKE NEURO TECH AND COMMERCIAL VERSIONS OF IT AND I SOUND LIKE A BROKEN RECORD BUT I'M SPOOKED ABOUT HOW F FAST THS HAPPENED. THE SAME MEETING A FEW YEARS AGO WE DISCUSSED NEURO ENHANCEMENT WITH IMPLANTS, ET CETERA, AND KNEW NAN US INLY IT WAS LIKE OH MY GOSH, ON THE ONE HAND IT'S INEVITABLE AND IT'S A LONG WAYS AWAY WITH DYSTOPIAN FUTURE MOVIES LIKE WHO IS GOING TO DO THAT. JUST A FEW YEARS LATER IT'S ALREADY HERE AND IT'S ACCEPTED AND THE WHOLE TONE IS DIFFERENT, WELL, IF YOU CAN'T BEAT THEM JOIN THEM SORT OF THING LIKE WE STILL BE BETTER PART OF THE CONVERSATION AND BECAUSE THERE'S A LOT TO FIGURE OUT AND WE DON'T WANT THE CORPORATE BILLIONAIRES TO DECIDE HOW THIS WILL HAPPEN. SO, IT WAS EYE-OPENING FOR ME AND INTERESTING. I INVITE YOU ALL TO TUNE IN NEXT TIME. THERE'S A LOT OF FORD THINKING NEUROETHICS THAT GOES ON WITH THAT MEETING. >> CHRISTINE, ANY UPDATES? >> THE ONLY OTHER THING IS IF PEOPLE MISSED IT, WHICH I DOUBT, THERE WAS A VERY INTERESTING PAPER ABOUT ORGAN X WHICH WAS A SORT OF NEXT GENERATION VERSION OF BRAIN X. WHICH HAS HUGE IMPLICATIONS FOR TRANSPLANTATION AND OTHER THINGS IN THE FUTURE. IF YOU HAVEN'T SEEN IT, I WOULD LOOK FOR IT. >> CAN I ADD ONE THING TO THAT, HANK, WHICH IS PART OF THE HUGE IMPLICATIONS IT HAS, OF COURSE, ARE PART OF I THINK THE CONTROVERSY THAT WOULD BE GREAT TO GET MORE FOLKS THAN ARE CURRENTLY INVOLVED IN IT IS ON OUR DEFINITION OF BRAIN DEATH. AND SO I HAVE BEEN THE REPORTER FOR WHAT'S CALLED THE UNIFORM LAWS COMMISSION WHICH YOU KNOW ABOUT BECAUSE YOU ARE INVOLVED AS OBSERVERS ON THE COMMITTEE, FOR UPDATING THE UNIFORM DETERMINATION OF DEATH ACT. THE LANGUAGE FOR BOTH CIRCULATORY AND RESPIRATORY AS WELL AS BRAIN DEATH. AND IT IS, YOU KNOW, CONSIDERABLY MORE CONTROVERSIAL THAN I WOULD HAVE IMAGINED ENTERING INTO IT AS SOMEONE WHO REALLY HAD THOUGHT ABOUT IT FROM THE PERIPHERY BUT NOT SQUARELY WITHIN THE DEBATE FOR THOSE IN THE DEBATE A LOT LONGER YOU KNOW THAT IT IS. WE RECENT MEDIA COVERAGE OF THE CASES AND SAYING THINGS LIKE BRAIN DEAD AND LIFE-SUPPORT AND CONFUSION ABOUT WHAT IT MEANS AND CHANGES IN NEUROSCIENCE OVER TIME AS WELL AS CHANGES POSSIBILITIES WITH THINGS LIKE BRAIN ACTS AND ORGAN ACTS THAT CHALLENGE THOSE DEFINITIONS OF DEATH AND THIS IS A GROUP AND ENCOURAGE TO BE MORE INVOLVED IN THE PROCESS AND WE'RE GOING INTO OUR SECOND YEAR OF DRAFTING THIS YEAR IF YOU ARE INTERESTED IN SERVING AS AN OBSERVER JUST E-MAIL ME AND LET ME KNOW AND WE'LL HELP TO GET YOU APPOINTED BECAUSE THIS IS ONE OF THE NEXT GREAT BATTLE GROUNDS AND AFTER THE DECISION THIS PAST YEAR. >> AL I'LL THROW IN ONE MORE TH. JUST IN THE LAST COUPLE OF DAYS THERE'S A NEW STUDY OUT STIMULATION AND SHOWING REMARKABLY GOOD RESULTS AND WITH 120 AND HOW MANY WORDS CAN YOU REMEMBER AND IT'S NOT DEEPEN HANCEMENT AND STANDARD TEST. 10 OR 15 YEARS AGO, THERE WAS A LOT OF INTEREST IN THIS NON-INVASIVE ELECTRICAL STIMULATION AND COMPANIES WERE SELLING PRODUCTS AND I THINK HALO MAY STILL SELL ITS PRODUCTS AND I THINK THINK WENT OUT OF BUSINESS AND BECAUSE OF THE NON INVICVASE I HAVE NATURE IT RAISA LOT OF THE KINDS OF ISSUES THAT SAMIR WAS TALKING ABOUT IN A LOWER TECH AND LESS INTRUSIVE AND DIFFICULT WAY THAN THE INPUT WOULD. IT'S BEEN GETTING A LOT OF ATTENTION AND THERE MAY BE ANOTHER ROUND OF DISCUSSIONS ABOUT THIS AND IT'S SOMETHING TO KEEP AN EYE ON. MY OWN VIEW IS LIVED THROUGH 10 OR 15 YEARS OF THESE AND SEEING LOTS OF STUDIES SHOWING POSITIVE EFFECT, NO EFFECTS, NEGATIVE EFFECTS, I THINK WAIT AND SEE IS THE RIGHT ANSWER FOR THIS NEWEST STUDY. I THINK IT'S PROBABLY GOING TO END UP, THERE'S A GOOD CHANCE THAT IT WILL END UP BEING MUG THAT NEWG WILL WANT TO AND NEED TO TAKE A LOOK AT. OTHER ROUNDTABLE UPDATES? NINA, SASS KEY A. AN SASKIA, ANU TWO? ALL RIGHT. WELL, I THINK IT'S TIME FOR A BREAK. AND YOU GET 19 AND A HALF MINUTES. BE HERE AT 50 MINUTES AFTER THE HOUR WHATEVER HOUR IT MAY BE. >> ACTUALLY, THANK YOU ALL VERY MUCH. I JUST WANT TO NOTE THAT WE WILL BE GOING INTO CLOSED SESSION. SO THERE IS ANOTHER ZOOM LINK FOR MEMBERS TO JOIN SO PLEASE, LOOK FOR THAT IN THE CALENDER INVITE OR IN THE E-MAIL THAT YOU RECEIVED BUT WE WILL BE LEAVING THIS ZOOM AND I ALSO WANT TO THANK OUR VIDEO CAST COLLEAGUES FOR THEIR, AGAIN, FLAWLESS RUNNING OF THIS MEETING, WE REALLY APPRECIATE THEIR INVOLVEMENT IN THE BACKGROUND AND TO EVERYBODY ELSE. THANK YOU SO MUCH. FOR ALL OF YOU IN THE OPEN MEETING AND WON'T BE IN THE CLOSED MEETING, THANK YOU FOR COMING.