>>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.