>>I WOULD LIKE TO WELCOME
EVERYONE TO THE 13TH MEETING OF
THE BRAIN NEUROETHICS WORK
GROUP. FONDLY REFERRED TO AS THE
NEWG OR THE NEWG. I WANT TO
EXTEND A WARM WELCOME THE OUR
WORKING GROUP CO-CHAIRS DR. HANK
GREELY AND CHRISTINE GRADY AS
WELL AS MEMBERS OF THE WORKING
GROUP ALONG WITH OUR INVITED
SPEAKERS AND PANELISTS WHO WILL
BE JOINING US TODAY. MY NAME IS
ANDREA MITCHENER, DEPUTY
DIRECTOR O OF THE NIH BRAIN
INITIATIVEINITIATIVE. I SERVE AS
DESIGNATED FEDERAL OFFICIAL FOR
TODAY'S MEETING. NOTICE I'M A
NEW FACE IN THIS ROLE AS WALTER
MENTION AND I WANT TO TAKE A
QUICK MOMENT TO ACKNOWLEDGE THE
TREMENDOUS CONTRIBUTIONS OF MY
PREDECESSOR DR. RAMOS, DR. RAMOS
RECENTLY TOOK A POSITION AT THE
DANA FOUNDATION AS THE VICE
PRESIDENT OF NEUROSCIENCE WITHIN
SOCIETY. SO WHILE SHE WAS AT NIH
IN ADDITION TO BEING DFO FOR
THIS GROUP, DR. RAMOS WAS VIEW
MENTAL IN FACILITATING THE RAPID
GROWTH OF NEUROETHICS EFFORTS
FOR THE BRAIN INITIATIVE AND
REALLY SENDING A STRONG
FOUNDATION FOR NIH AS AN
EMERGING LEADER IN THIS SPACE SO
WE ARE VERY GRATEFUL FOR HER
CONTRIBUTIONS, THANK YOU, KARA.
AS MOST OF YOU KNOW THE
NEUROETHICS WORKING GROUP IS NOT
A FORMAL ADVISORY GROUP LIKE THE
BRAIN MULTI-COUNCIL WORKING
GROUP THE NEWG IS A WORKING
GROUP OF ADVISORY COUNCIL OF THE
NIH INSTITUTES AND CENTERS THAT
PARTICIPATE IN THE BRAIN
INITIATIVE. IT WAS ESTABLISHED
BECAUSE OF THE RECOGNIZED NEED
FOR INPUT ON NEUROETHICAL
CONSIDERATIONS RELATED TO THE
RESEARCH THAT IS SUPPORTED
THROUGH THE BRAIN INITIATIVE.
THE NEWG DELIBERATES ONETH CAT
QUESTIONS THAT COME UP IN
CONTEXT OF BRAIN RESEARCH AND
CAN OFFER INPUT AND FURTHER
POINTS FOR CONSIDERATION. SO
TODAY WE AGAIN HAVE A ZOOM
MEETING AS WE CONTINUE IN THE
VIRTUAL FORMAT UNTIL THE DAY
THAT WE CAN ONCE AGAIN MEET IN
PERSON. WE'LL START TODAY WITH
AN UPDATE FROM THE BRAIN
DIRECTOR, DR. JOHN NGAI.
FOLLOWING THAT WE'LL DEVOTE
MAJORITY OF TODAY TO A SESSION
OF ETHICAL CHALLENGES IN
IMPLANTED NEURODEVICE RESEARCH
INVOLVING HUMAN PARTICIPANTS
INCLUDING A PANEL SESSION AND
DISCUSSION. WE'LL THEN DEDICATE
SOME TIME TO THINK ABOUT FUTURE
ACTIVITIES AND WE'LL WRAP UP THE
DAY WITH UPDATES FROM THE NEWG
MEMBERS ABOUT WHAT EVERYONE HAS
BEEN UP TO IN THE NEUROETHICS
SPACE. SO WE HAVE NO NEW NEWG
MEMBERS JOINING US BUT WE HAVE A
MEMBER ROTATING OFF FOLLOWING
TODAY'S MEETING AND JOHN WILL
DESCRIBE THESE TRANSITIONS IN A
FEW MINUTES. SO JUST A FEW
HOUSEKEEPING ITEMS BEFORE WE
START. AS REMINDER THIS OPEN
SESSION IS BEING VIDEOCAST LIVE
IN PUBLIC DOMAIN. THE RECORDING
WILL BE ARCHIVED FOR VIEWING ON
THE NIH AND BRAIN WEB SITES.
DURING PRESENTATIONS PLEASE MUTE
YOUR LINE AND TURN OFF YOUR
VIDEO WHEN NOT SPEAKING, THIS IS
HELP FOR THE VIDEOCAST. AND
DURING DISCUSSION PLEASE TURN ON
YOUR VIDEO AND USE THE RAISE
HAND OPTION IF YOU HAVE
QUESTIONS. WE'LL CALL ON YOU TO
UNMUTE YOURSELF FOR QUESTIONS
THAT YOU WOULD LIKE TO RAISE OR
COMMENTS FOR GENERAL DISCUSSION
OPT FOR THE RAISE HAND FEATURE
RATHER THAN TYPING THE QUESTIONS
IN THE ZOOM CHAT. SO YOUR
VIDEOCAST ATTENDEES CAN SEE THE
QUESTIONS. I KNOW EVERYONE IS
REALLY BUSY AND WE VERY MUCH
APPRECIATE YOUR TIME AND YOUR
INPUT TODAY. JUST A FINAL NOTE
THIS CAN'T HAPPEN WITHOUT REALLY
FABULOUS TEAM WE HAVE AT NIH.
THANK YOU TO COLLEAGUES WHO
MANAGE THE VIDEOCASTING,
ESPECIALLY WANT TO EXTEND THANKS
TO DR. NINA SHOE, THE SCIENCE
COMMITTEE SPECIALIST FOR THIS
WORKING GROUP. ALONG WITH DR.
HENDRIX AND KRISTIN DUPRUIS.
LAST BUT NOT LEAST DR. NGAI
BRAIN DIRECTOR FOR SUPPORT OF
NEUROETHICS IN GENERAL AND NOW I
WILL BE TURNING IT OVER TO YOU,
JOHN FOR YOUR UPDATE.
>> THANK YOU. DO I REMEMBER HOW
TO DO THIS? ARE YOU SEEING THE
CORRECT SLIDES? AS ANDREW
MENTIONED WE HAD TRANSITIONS IN
AND AROUND NEWG. FIRST TO
MENTION IS STEVE HYMAN WILL
CYCLE OFF, BEFORE I CAME ON AS
BRAIN DIRECTOR MAY 2020, WORKING
GROUP MEMBERS WERE APPOINTED TO
INDEFINITE TERMS AND TO OUR
WORKING GROUP BOTH NEWG AND
MULTI-COUNCIL WORKING GROUP OR
NCWG. WILLINGNESS TO GO ALONG
WITH THIS SHENANIGAN COMPARED TO
MORE TYPICAL FOUR YEAR
APPOINTMENTS ADVISORY COMMITTEES
AND STUDY SECTIONS SPEAKS TO THE
GREAT STARTUP SPIRIT OF EVERYONE
WHO HELPED MAKE BRAIN I THINK
THE VIBRANT ENTERPRISE THAT IT
IS TODAY. BUT TIME HAS COME TO
TARGET GIVING PEOPLE THEIR LIVES
BACK SO WE ARE CYCLING FOLKS OFF
THE COMMITTEES AND APPOINTING
NEW MEMBERS NOW TO FOUR YEAR
TERMS. SO BEHALF OF EVERYONE
HERE AT BRAIN AND ENTIRE
NEUROSCIENCE COMMUNITY I WANT TO
I WANT TO EXTENT UNENDING
GRATITUDE AS WE BID FAIR WELL TO
STEVE HYMAN WHO SERVED SINCE
015. HE MADE ENORMOUS
CONTRIBUTIONS TO BIOMEDICINE IN
THIS COUNTRY AND THE WORLD. HE
HELD A NUMBER OF VERY IMPORTANT
POSTS AND STEVE WE LOOK FORWARD
TO STAYING IN TOUCH WITH YOU AND
SEEING ALL THE GREAT THINGS YOU
CONTINUE TO DO IN THE FIELD OF
NEUROSCIENCE AND NEUROPSYCHIATRY
NEUROPSYCHIATRY. AS ANDREA ALSO
MENTIONED ANOTHER PERSON VERY
NEAR AND DEAR TO US, CHARA MAY
ROSE, I THINK YOU IN THE VIRTUAL
SPACE WATCHING US. SHE'S BEEN
INSTRUMENTAL ESTABLISHING
NEUROETHICS AS A KEY PIECE OF
WHAT WE DO HERE NOT ONLY IN THE
BRAIN INITIATIVE BUT ACROSS
NINDS AND NOW THANKS TO HER
RECENT EFFORTS BEFORE LEAVING
ACROSS THE NIH IN GENERAL. KHARA
WORE MANY HATS HERE YOU CAN SEE.
SHE CO-LED NEUROETHICS PROGRAM
TEAM, SHE DIRECTED INUREMENTICS
PROGRAM, SHE WAS CHIEF OF
NEUROSCIENTIST CONTENT AND
STRATEGY AT NINDS, AND CO-CHAIR
OF THE NIH COORDINATING
COMMITTEE FOR BIOETHICS RESEARCH
AND CHAININGING. SHE'S NOW TAKING A
NEW EXCITING ROLE AS VICE
PRESIDENT OF NEUROSCIENCE WITHIN
SOCIETY AT THE DANA FOUNDATION
AND WE LOOK FORWARDING TO
WORKING WITH HER IN HER NEW
ROLE. WE MISS YOU DEARLY BY VERY
HAPPY FOR YOU. SO I WANT TO GIVE
YOU A FEW UPDATES OF THE GOINGS
ON AROUND HERE. BRAIN
ANYWHERETIVE STARTED A DATA
SHARING POLICY LAST YEAR. IT
DOVE TAILS WITH AND PRECEDES THE
BROADER DATA SHARING POLICY
COMING THROUGH NIH MORE
GENERALLY. OUR POLICY REQUIRES
INVESTIGATORS WHO ARE GENERATING
ANY SIGNIFICANT DATA SETS TO
DEPOSIT THE DATA WITH
APPROPRIATE METADATA INFORMATION
AS WELL AS MEETING REQUIRED
QUALITY CONTROL STANDARDS TO ONE
OF ABOUT HALF DOZEN DATA
ARCHIVES THAT ARE SUPPORTED BY
BRAIN. WE JUST ROLLED THIS OUT
LAST YEAR. AND WE ARE NOW
WORKING WITH DPIs TO MAKE SURE
THAT ALL GOES WELL AND THE
COORDINATED APPROPRIATELY WITH
THE ARCHIVE MANAGERS. AGAIN,
THIS DOVE TAILS WITH THE NIH
DATA SHARING POLICY WHICH IS
ROLLING OUT NOW AND THIS IS VERY
IMPORTANT TO MAKE SURE THAT THE
RESOURCES WE GENERATE THROUGH
BRAIN AND THROUGH NIH FUNDED
RESEARCH ARE AVAILABLE FOR ALL
TO BENEFIT FROM.
I WANT TO POINT OUT THIS
INFORMATION FOR GENOMIC DATA
SHARING POLICY. THIS IS JUST TO
KEEP PACE WITH THE EVOLVING
SCIENTIFIC OPPORTUNITIES BUT
ALSO THE POTENTIAL RISKS
INVOLVED AS WE GENERATE MORE
DETAILED INFORMATION THAT WILL
BE KEY FOR BIOMEDICAL RESEARCH
AND ADVANCES BUT ALSO RAISING
SIGNIFICANT ISSUES ABOUT PRIVACY
GIVEN THAT MANY GENOMIC DATA
THEMSELVES CAN BE USED TO
DEIDENTIFY THIS SOURCE
INDIVIDUAL. ONE CAN SUBMIT
COMMENTS AT THE LINK PROVIDED
BELOW AND I DO ENCOURAGE YOU TO
THINK ABOUT THIS AND SUBMIT YOUR
COMMENTS BY THE REPLY DATA
FEBRUARY 28 IF YOU HAVE SOME
GOOD PERSPECTIVES TO SHARE. NOW,
AS I HOPE YOU CAN APPRECIATE
GIVEN WE ARE MEETING HERE AS THE
NEUROETHICS WORKING GROUP BRAIN
DOES HAVE A COMMITMENT TO
SUPPORTING NEUROETHICS RESEARCH
AND HAVING A BETTER
UNDERSTANDING OF THE IMPACTS
THAT OUR RESEARCH IS HAVING ON
THE HUMAN CONDITION AT LARGE. WE
HAVE AN OPEN CALL FOR
SUPPLEMENTS TO EMBED ETHICISTS
WITHIN CURRENTLY BRAIN
INITIATIVE FUNDED RESEARCH,
NOTICE IS POINTED OUT HERE. THIS
IS REALLY TO ENHANCE SCIENTIFIC
IMPACT OF CURRENTLY FUNDED
PROJECTS INTEGRATING AGAIN THESE
PERSPECTIVES AND APPROACHES
WITHIN THE PROJECTS. AND THERE
ARE A NUMBER OF AREAS COULD BE
REALLY QUITE USEFUL FOR STUDY
AND ARE LISTED HERE BUT
CERTAINLY NOT ALL INCLUSIVE
LIST. WE HAVE A ROLLING
SUBMISSION LIST AND REVIEW
PROCESS THROUGH APRIL OF THIS
AREA. IS SO I WON'T GET INTO
THIS TOO DEEPLY HERE, I WILL
SPEAK MORE ABOUT THIS TOMORROW
AT THE MULTI-COUNCIL WORKING
GROUP BUT WE ARE IN THE MIDST OF
LAUNCHING A THE THREE SO CALLED
BRAIN 2.0 TRANSFORMATIVE
PROJECTS RECOMMENDED BY THE
BRAIN 2.0 WORKING GROUPS THAT
COULD HAVE POTENTIAL FOR
TRANSFORMING THE WAY WE
UNDERSTAND THE NERVOUS SYSTEM,
THE BRAIN IN PARTICULAR, WITH AN
EYE TOWARDS TREATING HUMAN BRAIN
DISORDERS. THE THREE PROJECTS WE
CHOSE TO PURSUE ON THE HUMAN
BRAIN ATLAS, THE DEVELOPING TOOL
KIT FOR GETTING PRECISION CELL
ACCESS TO BRAIN CELL TYPES, AS
WELL AS WHOLE BRAIN
MICROCONNECTIVITY PROJECT. AND
THE IDEA BEHIND THESE PROJECTS
IS TO PROVIDE THE GROUND TRUTH
WITH THE CELL ATLAS AND
CONNECTIVITY PROJECT AND MEANS
OF TESTING AND LEVERAGING THAT
INFORMATION WITH THE PRECISION
ACCESS TOOLS TOOLS. SO IN MANY MANY
WAYS THESE THREE PROJECTS WHICH
WE SUPPORT AND SYNERGISTIC AND
WE ARE EXCITE ABOUT THESE
PROJECTS, WE ARE WELL ON OUR WAY
TO LAUNCHING THE HUMAN CELL
ATLAS PROJECTS THOSE
APPLICATIONS WERE JUST RECEIVED,
WE STARTED ROLLING OUT THE
AWARDS AND MORE UNDER REVIEW FOR
PRECISION CELL ACCESS AND BRAIN
MICROACTIVITY PROJECT, THESE
FOAs ARE DUE TO BE ISSUED THE
NEXT FEW MONTHS.LY TALK ABOUT
THAT MORE TOMORROW AND IF YOU
ARE INTERESTED IN READING
FURTHER, JUST PUBLISHED A
COMMENTARY ON THE TRANSFORMATIVE
PROJECTS IN CELL THAT CAME OUT A
FEW WEEKS AGO.
I THOUGHT I WOULD JUST FINISH UP
BY TOUCHING ON A FEW SCIENTIFIC
ADVANCES. I WON'T GET INTO
DETAIL HERE BUT IT WILL FRAME
THE DISCUSSION WE'LL HAVE IN A
FEW MINUTES THE ETHICAL AND
OTHER IMPLICATIONS OF STUDYING
HUMANS IN INVASIVE TRIALS. THIS
IS A STUDY I TOUCHED ON THIS I
THINK AT THE LAST NCWG FROM PHIL
STAR'S GROUP UCS, IF THEY USED
BIDIRECTIONAL ELECTRODES IN THE
TREATMENT OF MOVEMENT DISORDERS
AND PARKINSON PATIENTS AND THE
IDEA HERE IS TO USE ADAPTIVE
STIMULATION TO FINE TUNE THE
STIMULATION TO THE PATIENTS
NEED. THE COOL THING HERE IS
THAT THE DEVICE, THE ELECTRODES
AND CONTROLLERS ARE FULLY
IMPLANTED AND THE COMMUNICATE
WIRELESSLY WITH THE TABLET AND
THEREFORE CAN BE USED TO
IDENTIFY PERSONALIZED
PHYSIOLOGICAL SIGNATURES OF SAY
DESIGNEES SHAH AND TO TAILOR THE
STIMULATION ACCORDINGLY, IT
WORKS WELL IN EARLY STUDIES AND
THESE ARE ONGOING. SO VERY
EXCITING AREA, IT DOES RAISE
SEVERAL ISSUES IN TERMS OF
PRIVACY, AS WELL AS THE
PARTICIPATION OF PATIENTS IN
CLINICAL TRIALS BUT THIS IS
REALLY A VERY EXCITING ADVANCE.
KINESIA. LAST YEAR, A STUDY FROM
UCSF EDDIE CHANG'S GROUP LOOKED
AT A PATIENT WITH TREATMENT
REFRACTORY DEPRESSION WHO WAS
IMPLANTED AND USE THESE DBS
ELECTRODES TO STIMULATE TO SEE
IF THEY CAN OFFSET OR AMELIORATE
SOME OF THESE SYMPTOMS OF
DEPRESSION AND IN THIS CASE THIS
ONE CASE STUDY THAT SEEMEDDED TO
HAVE SUCCESS. SO THIS OPENS THE
DOOR FOR USING DEEP BRAIN
STIMULATION TO TREAT TREATMENT
REFRACTORY DEPRESSION AS WELL AS
OTHER NEUROPSYCHIATRIC DISORDERS
SO EXCITING ADVANCE, WE HAVE A
LONG WAY TO GO BUT THERE IS
PROMISE HERE IN THIS BURGEONING
FIELD. A PAPER ALSO IS PUBLISHED
IN NATURE MEDICINE FROM CHEF'S
GROUP, USE THESE BIDIRECTIONAL
ELECTRODES TO RECORD FROM A
PATIENT WITH OCD OVER A THOUSAND
HOURS OF BRAIN RECORDINGS AND
HOPE DOWN THE LINE IS THAT BY
USING THESE RECORDINGS WE CAN
FIND ELECTROPHYSIOLOGICAL
BIOMARKERS FOR ASPECTS OF THE
CONDITION AND USE TO TAILOR
THERAPIES IN ADAPTIVE WAY NOT
UNLIKE THE WAY ADAPTIVE DBS IS
APPLIED TO MOVEMENT DISORDERS.
SO I'M JUST HIGHLIGHTING THESE
THREE STUDIES BRIEFLY TO GIVE A
GENERAL OVERVIEW, THERE ARE
THOSE HERE ON THE COMMITTEE HAVE
DONE STUDIES HAVE MORE KNOWLEDGE
ABOUT THEM AND I THINK IT WILL
BE GREAT TO THINK ABOUT STUDIES
THAT IMPACT POTENTIAL BUT ALSO
THE RISK THEY ENTAIL AND THE
BURDEN, I SHOULDN'T SAY BURDEN,
BUT THE ROLE THAT HUMAN
PARTICIPANTS ARE RESEARCH
PARTICIPANTS PLAY IN THIS GROUND
BREAKING RESEARCH. WITH THAT I
WILL STOP. I THINK WE MIGHT BE A
LITTLE OVER TIME BUT IF THERE'S
ANY QUESTIONS PERHAPS WE CAN
TAKE A FEW QUICK ONES.
>> I'M NOT SEEING ANY HANDS
RAISED SO I THINK WE CAN GO
AHEAD AND MOVE -- NO. JIM.
PLEASE GO AHEAD.
>> THANKS, ANDREA. JOHN, I DON'T
KNOW IF YOU HAVE HAD THIS
INFORMATION BUT FOR THE
EMBEDDING OF NEUROETHICIST IN TO
ONGOING BRAIN GRANTS HOW MANY
HAVE DONE THAT, HOW MANY OF THE
SUPPLEMENTS HAVE BEEN GIVEN AND
DO YOU THINK IT IS WORKING.
>> NINA OR JAY, DO YOU WANT TO
WEIGH IN, A NEW RFA NEW NOTICE I
BELIEVE?
>> I GUESS THIS IS JAY I WOULD
SAY TWO THINGS. ONE IS WE HAVE
DONE A SIMILAR THING IN THE PAST
AND THAT MAYBE WHAT JIM IS
REFERRING TO. I DON'T HAVE
NUMBERS AT HAND, WE DON'T HAVE
ANY APPLICATIONS FOR THIS YEAR.
BUT I CAN SAY THERE HAVE BEEN
REALLY FANTASTIC CASES OF THIS
MIND FRANCIS SHANNON, EMBEDDED
IN UO 1 AND THAT PROJECT LED TO
A FULL NEUROETHICS APPLICATION
AND THEN GRANT AS WELL. AND
THERE IS A FEW OTHER CASES AS
WELL.
>> THANKS, JAY.
>> I WILL ADD THAT THIS IS --
THIS ACTIVITY IS BAKED IN TO
SOME OF OUR FUNDING OPPORTUNITY
ANNOUNCEMENTS, BUT THE
SUPPLEMENT OPPORTUNITY BASICALLY
OPENS THAT UP TO OTHER BRAIN
AWARDEES.
>> THANK YOU.
>> ALL RIGHT. I DON'T THINK WE
HAVE ANY OTHER QUESTIONS FOR
YOU, JOHN. SO I THINK RIGHT NOW
WE CAN TURN IT TO OUR CO-CHAIRS,
DR.S CHRISTINE GRADY AND HANK
GREELY. CHRISTINE, I BELIEVE YOU
ARE UP FIRST.
>> IF I CAN GET MY MUTE OFF I
CAN BE ON FIRST. CAN YOU HEAR ME
NOW?
>> YES.
>> SO FIRST I WANT TO THANK DR.
NGAI AND DR. BECK EXL MITCHENER
FOR THEIR LEADERSHIP AND GETTING
US STARTED TODAY. AND AS A
CO-CHAIR HANK AND I WOULD LIKE
TO WELCOME EVERYBODY AND THANK
YOU IN ADVANCE FOR YOUR
CONTRIBUTIONS TO THE DISCUSSION
TODAY. BEFORE I INTRODUCE THE
NEXT SESSION I WOULD LIKE TO
ECHO SOME OF THE THANKS THAT
HAVE BEEN MADE IN ADDITION TO
JOHN AND ANDREA, I WANT TO THANK
THE PEOPLE BEHIND THE SCENES AND
MOST ESPECIALLY NINA, AND DR.
HENDRIX AND DUPRUIS BECAUSE THEY
DO A LOT OF PREPARATORY WORK FOR
THESE MEETINGS. ALSO THANKS
STEVE IN NEWG, GREAT TO HAVE YOU
AND WE'LL MISS YOU AND THANKS TO
KHARA WHO I THINK IS LISTENING
AND WE MISS HER TERRIBLY AND WE
ARE GLAD SHE IS STILL GOING TO
BE AVAILABLE TO COLLABORATE IN
DIFFERENT WAYS SO WE LOOK
FORWARD TO WORKING WITH YOU IN
YOUR NEW RESPONSIBILITIES. SO
TODAY OUR FIRST SESSION TODAY IS
ENTITLED ANDREA MENTIONED,
ETHICAL CHALLENGES IN IMPLANTED
NEURAL DEVICE RESEARCH WITH
HUMAN PARTICIPANTS. SO MANY OF
YOU I'M SURE ARE AWARE OF SOME
OF THE ETHICAL CHALLENGES IN
THIS KIND OF RESEARCH FROM YOUR
OWN WORK. AND THE NEWG IS ALSO
DISCUSSED SOME OF THESE
CHALLENGES IN THE PAST. WE HAD A
WORKSHOP A FEW YEARS AGO RELATED
TO INVASIVE NEURO DEVICES THAT
ALLO DEVICES THATRESULTED IN THE JAMA NEUR OLOGY
PAPER IN MY OPINION THERE ARE
IMPORTANT CONTRIBUTION THERE ARE
ISSUES WE DIDN'T DISCUSS AT THIS
WORKSHOP AND WE HAVEN'T
DISCUSSED IN NEWG. AND THERE ARE
LOTS OF ONGOING ETHICAL
CHALLENGES IN HUMAN RESEARCH
WITH IMPLANTED NEURAL DEVICES.
FURTHER I THINK AND IMPORTANTLY
FOR TODAY'S DISCUSSION THERE ARE
SPECIFIC CHALLENGES OR MAYBE THE
MOST PRESSING OR VEXING
CHALLENGES THAT DIFFER DEPENDING
ON THE -- EXACT NATURE OF THE
RESEARCH. SO WE ARE GOING TO TRY
TO FOCUS A LITTLE BIT ON THAT
TODAY. WE ARE GOING TO START
WITH TWO BRIEF PRESENTATIONS
FROM BRAIN FUNDED NEUROETHICS
INVESTIGATORS. ONE OF WHOM WILL
FOCUS ON INTRACRANIAL OR
INTEROPERATIVE RESEARCH AND THE
OTHER ON ETHICAL CONSIDERATIONS
IN LONG TERM INTERACTIVE
STUDIES. AFTER THESE TALKS WE
ARE GOING TO HAVE A PANEL OF
THREE INVESTIGATORS AND ONE
RESEARCH PARTICIPANT WHO ARE
HELP US CONSIDER A NUMBER OF
ETHICAL ISSUES AND ENGAGE IN
DIALOGUE WITH ALL OF US ON THIS
ZOOM. AS YOU ARE LISTENING, I
INVITE YOU TO BEGIN TO FORMULATE
YOUR QUESTIONS AND THE THINGS
YOU WOULD LIKE TO TALK ABOUT.
ESPECIALLY WITH RESPECT TO HOW
THE ETHICAL CHALLENGES MIGHT
DIFFER IN DIFFERENT TYPES OF
NEURAL DEVICE RESEARCH AND HOW
THOSE MIGHT GUIDE OUR DISCUSSION
GOING FORWARD. SO WITH THAT I'M
GOING TO INTRODUCE OUR FIRST
SPEAKER, OUR FIRST SPEAKER IS
DR. ASHLEY FEINSINGER, A
BIOETHICS FACULTY MEMBER AT THE
DAVID GETHIN SCHOOL OF MEDICINE
DEPARTMENT OF PHILOSOPHY AT
UCLA. HER INTERESTS LIE AT THE
INTERSECTION OF ETHICS
PHILOSOPHY OF LANGUAGE AND
MEDICINE, AND SHE RECEIVED HER
Ph.D. IN PHILOSOPHY FROM UCLA.
SHE WORKS CLOSELY WITH
DEPARTMENT OF NEUROSURGERY ON
ETHICS OF INVASIVE
NON-THERAPEUTIC HUMAN
NEUROSCIENCE RESEARCH AND NOTION
OF SOCIETAL BENEFIT AND THIS
COLLABORATION IS SUPPORTED BY
BRAIN. DR. FEINSINGER WILL SPEAK
TO US ABOUT INVESTIGATORS
PERSPECTIVES ON ETHICAL
COMMITMENTS, PRINCIPALS AND
PRACTICES GUIDING INTRACRANIAL
NEUROSCIENTIFIC RESEARCH IN
HUMANS. BELL COME, ASHLEY. --
WELCOME,
ASHLEY.
>> THANK YOU SO MUCH, DR. GRADY. GRADY.
LET ME TRY TO SHARE MY SCREEN A
SECOND.
>> CAN EVERYONE SEE THE SLIDES?
GREAT. FIRST I WANT TO THANK THE
NEUROETHICS WORKING GROUP FOR
HAVING ME HERED TO TO DISCUSS
ETHICAL COMMITMENTS PRINCIPLES
AND PRACTICES GUIDEN
INTRACRANIAL NEUROSCIENTIFIC
RESEARCH IN HUMANS. I'M GRATEFUL
FOR THIS OPPORTUNITY, I KNOW
SOME OF YOU I HAVE WORKED WITH
YOU IN THE PAST AND I THINK THIS
IS A FANTASTIC FORUM FOR PUSHING
FORWARD SOME OF THIS WORK. SO I
WOULD LIKE TO START WITH
ACKNOWLEDGMENTS, THE WORK I WILL
TALK ABOUT TODAY IS THE RESULT
OF LARGE COLLABORATIVE EFFORT
BETWEEN NUMEROUS DISCUSSIONS AND
ETHICAL CONVERSATIONS, WITH
MEMBERS OF THE ROH CONSORTIUM OF
THE BRAIN INITIATIVE. SO THIS IS
RESEARCH OPPORTUNITIES IN HUMANS
CONSORTIUM. AND IT IS MADE UP OF
MORE THAN 30 INVESTIGATORS
FUNDED BY THE NIH TO DO BASIC
HUMAN NEUROSCIENCE RESEARCH.
THAT RESEARCH VARIES IN KIND AND
I WILL TRY TO WALK THROUGH THE
DIFFERENT TYPES OF RESEARCH THAT
THESE INVESTIGATORS DO. AND THE
ETHICAL FRAMEWORK THAT I'LL
PROPOSE TODAY HOW THAT
INTERSECTS WITH THESE VERY
DIFFERENT TYPES OF STUDIES. AS
MENTIONED I'M ALSO FUNDED BY THE
BRAIN INITIATIVE TO DO ETHICS
COLLABORATIVE WORK WITH
PARTICIPANTS WHO JOIN
INTEROPERATIVE STUDIES SO
GRATEFUL FOR THAT SUPPORT AND
ALSO INCREDIBLY GRATEFUL TO THE
SUPPORT OF THE NIH FOR
FACILITATING SOME OF THESE LARGE
COLLABORATIVE CONVERSATIONS AND
FOR REALLY EMBRACING AN
OPPORTUNITY FOR INVESTIGATORS TO
GET TOGETHER AND SPEAK WITH AN
EMPHASIS THEMSELVES ABOUT
THINKING HOW TO FORMULATE
ETHICAL PRINCIPLES TO GUIDE
THEIR WORK.
SO I WILL BE FOCUSING TODAY ON
PRESENTING THE ETHICAL FRAMEWORK
THAT HAS RECENTLY BEEN PUBLISHED
IN A PAPER IN NEURON, WHICH IS
CO-AUTHORED BY MYSELF AND THE
INVESTIGATORS FROM THE ROH
CONSORTIUM. WHICH EXPLORES
PRACTICES AND EXPERIENCES FROM
THE PERSPECTIVE OF INVESTIGATORS
WHO CONDUCT THIS RESEARCH WITH
HUMANS, WITH IMPLANTED DEVICES.
SO AS AN OUTLINE I WILL JUST
SURVEY THE DIFFERENT TYPES OF
RESEARCH THAT ROH INVESTIGATORS
PARTICIPATE IN. I WILL PRESENT
SOME OF THE ETHICAL ISSUES AT
THE FOREFRONT OF THAT RESEARCH
TRYING TO STAY TRUE TO THE
DIFFERENCES BETWEEN THE STUDIES
AND TRYING TO HIGHLIGHT ISSUES
IN INTEROPERATIVE RESEARCH. I
WILL HIGHLIGHT THE NOTABLE
KNEETURES OF THE PROPOSAL IN
THIS PAPER, I THINK IT IS
ACTUALLY -- FEATURES, IT IS
QUITE INTERESTING, IT HAS BEEN
QUITE EYE OPENING TO SEE HOW
THINGS ARE PRESENTED TO
INVESTIGATORS IN THE ISSUES THAT
THEY FIND AT THE FOREFRONT. THEN
WE'LL END WITH SOME QUESTIONS
FOR CONTINUED WORK IN THIS
SPACE.
SO THE KIND OF RESEARCH THAT I
WILL BE FOCUSED ON TODAY IS
BASIC INTRACRANIAL RESEARCH,
RESEARCH CONDUCTED IN CLOSE
CONCERT WITH NEUROSURGICAL
INTERVENTIONS WHICH PROVIDES
RESEARCHERS WITH A UNIQUE TO
PEER INTO THE BRAIN SO TO SPEAK
AND GAIN UNPARALLELED ACCESS TO
HUMAN BRAIN FUNCTION. SO FOR
EXAMPLE, WE HAVE IN COLUMN ONE
RESEARCHERS MAY TAKE EXTRA
REPORTING FROM THE
THERAPEUTICALLY IMPLANTED
DEVICE, SO THIS MIGHT BE EXTRA
REPORTINGS MAKING USE OF A RNS
NEUROPACE RNS IMPLANTED DEVICE
IN A PARTICIPANT FOR EPILEPSY.
IN COLUMN TWO RESEARCHERS MAY
RECORD THROUGH THE MODIFICATION
OF CLINICALLY INDICATED IMPLANT
FOR RESEARCH PURPOSES. THROUGH
MODIFIED WIRES TO DETECT
INDIVIDUAL NEURONS FIRING DURING
A PATIENT STAY IN THE EPILEPSY
MONITORING UNIT. IN THREE
RESEARCHERS MAY RECORD THROUGH
EXTRA TEMPORARY IMPLANTS SO THIS
FOR EXAMPLE MIGHT PLACE A
TEMPORARY ECOG STRIP DURING THE
DBS SURGERY TO RECORD ADDITIONAL
TASKS. AND IN THE FOURTH COLUMN
RESEARCH CONDUCTED AS PART OF
INVESTIGATIONAL DEVICE TRIAL SO
HERE WE SEE A PICTURE OF UTAH
ARRAY, IMPLANTED FOR THE USE OF
BCI RESEARCH BUT MAY ALSO BE
USED FOR BASIC SCIENCE RESEARCH.
SO IN THIS SLIDE WE SEE EXAMPLES
OF PARTICIPANTS WHO MAKE THESE
POSSIBLE AND WHAT IT LOOKS LIKE
REALLY TO BE A PARTICIPANT IN
ONE OF THESE STUDIES AND TO
OFFER THESE OPPORTUNITIES TO
INVESTIGATORS. SO IN SLIDE ONE
WE HAVE A PARTICIPANT WEARING A
MOBILE BRAIN MONITORING DEVICE
THAT WORKS IN CONJUNCTION WITH
AN RNS SYSTEM, THIS PARTICIPANT
COMES TO THE LAB TO PARTICIPATE
IN BASIC SCIENCE RESEARCH ABOUT
MEMORY. IN COLUMN TWO WE HAVE A
PARTICIPANT IN THE ENU
PARTICIPATING IN BASIC RESEARCH
ABOUT VISION AND EMOTION. IN
COLUMN THREE WE HAVE A PATIENT
PERFORMING COGNITIVE TEST, USING
A JOY STICK DURING DEEP BRAIN
STIMULATION SURGERY. FOR BASIC
SCIENCE RESEARCH AND IN COLUMN
FOUR WE HAVE A PATIENT IN A BCI
STUDY WHO IS PLAYING THE PIANO
VIRTUAL PIANO USING NEURAL BRAIN
CONTROL BASED ON SCIENCE
PRINCIPLES DERIVED FROM ONGOING
UCI RESEARCH. SO WHILE THESE
STUDIES ARE IMPORTANTLY
DIFFERENT AND I APPRECIATE DR.
BRIDIE'S POINT TRYING TO GRAPPLE
WITH THAT DISCUSSION, APOLOGIZES
FOR MY SLIDES. THEY HAVE SOME
FEATURES IN COMMON. SO THEY ARE
ALL UNITED IN THE FOLLOWING
THREE WAYS. THEY SHARE THE GOAL
OF UNDERSTANDING BASIC SCIENCE
QUESTIONS ABOUT THE HUMAN BRAIN.
THERE IS THE ABSENCE OF NEAR
TERM THERAPEUTIC BENEFIT FROM
PARTICIPANTS AND THEY MAKE USE
OF INTRACRANIAL RECORDINGS AND
STIMULATIONS IN HUMAN SUBJECTS
WHO EITHER HAVE A CLINICAL NEED
FOR NEUROSURGICAL INTERVENTION
OR WHOSE CONDITIONS ALLOW THEM
TO UNDERGO FOR THE SAKE OF
STUDY. THERE ARE WELL KNOWN
ETHICAL CHALLENGES FOR ALL THIS
TYPE OF RESEARCH AND THIS IS
NOTED IN THE LITERATURE AND MANY
PEOPLE WHO ARE HERE TODAY MADE
INCREDIBLE CONTRIBUTIONS TO
THIS. THESE ARE SOME OF THE
CONSIDERATIONS THAT FROM
INVESTIGATORS PERSPECTIVES STAND
OUT AS INCREDIBLY SALIENT. FOR
ONE, THE UNIQUE CONTEXT OF THIS
RESEARCH. ASIDE FROM THE FACT
THAT PATIENTS HAVE A CLINICAL
NEED FOR BRAIN SURGERY OFTEN,
CLINICAL CARE AND RESEARCH
OVERLAP IN SPACE AND TIME FROM
MANY OF THESE STUDIES AND
PARTICULARLY IN INTEROPERATIVE
STUDIES WHERE IT IS THE SAME
SURGICAL EVENT IN WHICH
PARTICIPANTS ARE DOING TASKS FOR
THERAPEUTIC BENEFIT OR DOING
TASKS FOR RESEARCH. THERE IS A
HIGH PREVALENCE OF DUAL ROLE
CLINICIAN RESEARCHERS. FOR
EXAMPLE, THE SURGEON FOR THE
IMPLANTATION PROCEDURE MAY ALSO
BE AN INVESTIGATOR FOR THE
RESEARCH STUDY AND
INTEROPERATIVE CASES. THERE'S
QUESTIONS AND I HOPE YOU CAN
TALK ABOUT THAT TODAY, ABOUT
PATIENT PARTICIPANT
VULNERABILITIES. NOT JUST
VULNERABILITIES THAT ARISE FROM
THINKING ABOUT THE NEUROLOGICAL
OR PSYCHIATRIC DIAGNOSES OF
THESE PATIENTS BUT ALSO FROM
THINKING THE CONTEXT WHICH
RESEARCH TAKES PLACE,
PARTICULARLY THE SURGICAL
CONTEXT. AS MENTIONED BEFORE,
THIS TYPE OF RESEARCH IS ABLE TO
BE DONE BECAUSE OF A RARE
CLINICAL OPPORTUNITY AND THAT
CREATE TENSION BETWEEN PRESSURE
TO TAKE ADVANTAGE OF THAT
OPPORTUNITY TO APPLY FOR
GRANTSES, THE REWARDS OFFERED
FOR THIS TYPE OF HIGH IMPACT
RESEARCH AND ALSO PROTECTING
PATIENTS WHO ARE IN A VERY
UNIQUE POSITION. AND LASTLY AS
MENTIONED BEFORE BUT REALLY
CRUCIAL IS THE RESEARCH IS
NON-THERAPEUTIC SO IT IS NOT
AIMED PROVIDING BENEFITS BUT
THERE MAYBE A RANGE OF
ADDITIONAL RISKS AND THOSE MAY
VARY DEPENDING ON CONTEXT OF
RESEARCH. SOME OF THOSE RISKS
MIGHT BE HARD TO QUANTIFY. SO
EXTRA TIME IN THE OPERATING
ROOM, EXTRA TIME IN THE
OPERATING ROOM FOR EXAMPLE IS
DIFFICULT TO QUANTIFY, UM
COMPARE THAT WITH THE RISKS OF
BATTERY DRAINAGE IF YOU ARE A --
YOU HAVE AN RNS SYSTEM AND
PARTICIPATING WITH RESEARCH IN
THE CLINIC. SO CONSIDERING THESE
ETHICAL CONCERNS, INVESTIGATORS
WANTED TO OFFER REFLECT ON THESE
AND OFFER ETHICAL FRAMEWORK TO
TRY TO PROMOTE DISCUSSION AND
BEST PRACTICES IN THIS FIELD.
THIS FRAMEWORK IS OFFERED AS A
STARTING POINT FOR DISCUSSION SO
IT IS REALLY GRATEFUL WE GET A
CHANCE TO TALK ABOUT IT TODAY.
IT IS MEANT FOR CRITICISM AND
REFLECTION AND CONSIDERED
ALONGSIDE OTHER FRAMEWORKS IN
THE VIEWS OF PATIENT
PARTICIPANTS. SO THE FRAMEWORK
CONSISTS OF TWO FUNDAMENTAL
ETHICAL COMMITMENTS AND
ASSOCIATED PRINCIPLES AND
SPECIFIC PRACTICES THAT
INVESTIGATORS HAVE IMPLEMENTED
OR THINK WOULD BE IMPORTANT TO
CONSIDER GOING FORWARD SO HERE
ARE THE TWO BASIC FUNDAMENTAL
COMMITMENTS PROPOSED BY THIS
GROUP OF RESEARCHERS. FIRST,
MAINTAINING INTEGRITY OF
CLINICAL CARE AND SPACE. SO --
APOLOGIES JOHN WHY IT'S DOING
THAT. PRIORITIZING INTEGRITY OF
CARE, MAINTAINING CARE GUIDED BY
FUNDAMENTAL CLINICAL PRINCIPLES
REQUIRES PRACTICES TO ENSURE
THAT CARE IS NOT COMPROMISED
PURPOSEFULLY OR INADVERTENTLY.
NOTICE THIS PRINCIPLE IS NOT
JUST OR THIS COMMITMENT IS NOT
JUST ABOUT PATIENT COMPREHENSION
OF THE SEPARATION OF CLINICAL
CARE IN RESEARCH. BUT ALSO
PROMOTING RESEARCH DESIGN THAT
HONORS THE SEPARATION. THE
SECOND FUNDAMENTAL COMMITMENT IS
ENSURING VOLUNTARINESS OF
PARTICIPATION AND THE PRINCIPLES
IN THIS SPACE FOCUS ON CONSENT
PRACTICES, WHICH MINIMIZE
INFLUENCE, INFLUENCE OF THE
INVESTIGATOR, BUT OPTIMIZE
PATIENT UNDERSTANDING AND THAT'S
SOMETHING THAT I THINK IS QUITE
AT THE CENTER OF THE ETHICAL
CHALLENGES OF THIS RESEARCH, HOW
TO FIND THAT MIDDLE GROUND. THEY
ALSO FOCUS ON ATTENTION TO THE
NOTION OF CONTINUED CONSENT AND
THE RIGHT TO WITHDRAW. HOW THAT
MIGHT LOOK DIFFERENT DEPENDING
ON TYPE OF STUDY AND THE
IMPORTANCE OF MEANINGFUL
DISCUSSIONS OVER TIME TO DISCUSS
CONCERNS WITH PARTICIPANTS, AS
PATIENT VIEWS ABOUT RESEARCH MAY
CHANGE AS HAY EXPERIENCE WHAT IT
IS LIKE TO BE PART OF STUDY. SO
I WANTED TO SHOW WHAT THE
PAYMENT iFRAMEWORK LOOKS LIKE
IN THE PAPER THERE'S TABLES WITH
EACH COMMITMENT, THE COMMITMENT
ON THE LEFT,ASSOCIATED
PRINCIPLES DOWN CENTER MOTIVATED
BY THE COMMITMENT AND THE OTHER
SIDE SEE EXAMPLES OF CURRENT
PRACTICES THAT INVESTIGATORS USE
TO TRY TO RESPOND TO THESE
COMMITMENTS AND THEIR PRACTICE,
INVESTIGATORS THINK WOULD BE
HIGHLY VALUABLE TO CONSIDER. WE
FOLLOW ACROSS CLINICAL CARE
RESEARCH SHOULD BE UNCOUPLED.
SUCH THAT CARE BE NEITHER
COMPROMISED BY NOR CONDITIONAL
ON RESEARCH PARTICIPATION AND
THIS MUST BE COMMUNICATED TO
PATIENTS, THAT IS AN INTERESTING
THEME THROUGHOUT THE PROPOSAL AS
WELL THE FOCUS ON COMMUNICATION. COMMUNICA TION.
THEN WE HAVE CURRENT PRACTICES,
TIME SPACE AND PERSONNEL AND
SOME PROPOSED PRACTICES SEEK
VERBAL CONFIRMATION AND
UNDERSTANDING OF OPERATION OF
CLINICAL CARE AND RESEARCH BUT
ALSO CONSIDERATION OF
STANDARDIZE VIDEOS HOW WE MAKE
USE OF STANDARDIZE TOOLS TO
PROVIDE CONSISTENT EXTERNAL
VOICE TO DESCRIBE THAT
SEPARATION AND WE MIGHT THINK
HOW THOSE TOOLS ARE IMPLEMENTED
WITH A VARIABLE APPROACH THAT
RESPECTS DIFFERENCES BETWEEN
STUDIES. THIS IS THE SECOND
COMMITMENT AND I CAN COME BACK
TO THIS IF FOLKS WANT TO DISCUSS
IT. THIS IS AN EXAMPLE HOW WE
COULD MOVE FROM COMMITMENT TO
ASSOCIATED PRINCIPLES. FOR
EXAMPLE, NUMBER FIVE INFORM
CONTENT PROCEDURES, POTENTIAL
FOR NEUROLOGICAL INJURY HIGH
RATE OF INVESTIGATORS AND
PATIENT VULNERABILITIES AND YOU
WILL SEE AN EXAMPLE OF PRACTICES
ON THE SIDE AND NOTABLY AGAIN
SUGGESTION FOR THINKING ABOUT
STANDARDIZE VIDEOS WITH
EXPERSONAL PERSPECTIVES OF BASIC
STUDY INFORMATION SO SUPPLEMENT
MORE NUANCE CONVERSATIONS
BETWEEN PATIENTS AND MEMBERS OF
THE TEAM. I'LL SKIP IN INTEREST
OF TIME BUT EXAMPLE HOW YOU
MIGHT FORMALLY WALK THROUGH THE
DIFFERENT ETHICAL JUSTIFICATIONS
FOR PRACTICES AND REFLECT AND
REFINE THEM. SO I THINK THERE IS
A FEW NOTABLE FEATURES OF THIS
PROPOSAL. THAT ARE SLIGHTLY
DIFFERENT THAN SOME OF THE PAST
WORK IN THIS PROJECT. HIGHLIGHT
PERHAPS THE VALUE OF BRINGING
INVESTIGATORS INTO THESE
CONVERSATIONS. THE FIRST IS A
BROADER FOCUS ON THE DUIALITY OF
THE RESEARCH CONTEXT ITSELF,
BEYOND FOCUS ON THE DUAL ROLE OF
INVESTIGATOR. SO THINKING ABOUT
REALLY WHAT THE CLINICAL
SURGICAL CONTEXT DOES ETHICALLY
FOR INVESTIGATORS PATIENT AND
OTHER MEMBERS OF THE RESEARCH
TEAM WHICH IS AN INTERESTING
CONSIDERATION. THERE IS A DESIRE
FOR SPECIFIC STANDARDIZE TOOLS
BUT IN THE CONTEXT OF ALLOWING
FOR HETEROGENEITY IN PRACTICE.
THAT IS INTERESTING AS WELL, IT
SUGGESTS AN INTEREST AND MODULAR
APPROACH TO THINGS LIKE CONSENT,
THAT COULD BE CUSTOMIZED
DEPENDING ON NUANCES OF EACH
STUDY. THE STANDARDIZE TOOLS
MIGHT ALSO SUPPORT SMALLER
RESEARCH TEAMS WHICH I THINK IS
QUITE INTERESTING. THERE IS AN
ESSENTIAL ROLE FOR PATIENT
PARTICIPANT INPUT TO DEVELOP
BEST APPROACHES SO WHEN THINKING
ABOUT PRINCIPLES LIKE PATIENTS
HAVE THE RIGHT TO WITHDRAW AT
ANY TIME, THAT MAY LOOK VERY
DIFFERENT IF YOU ARE
PARTICIPATING IN RESEARCH
INTEROPERATIVELY VERSUS BCI
STUDY. SO HOW CAN WE LEARN FROM
PATIENTS WHAT WOULD BE A
MEANINGFUL WAY TO APPROACH THEM
AND MEET THEM WHERE THEY ARE TO
RESPECT THAT ETHICAL PRINCIPLE
AND I THINK THE FRAMEWORK
REFLECTS A DESIRE FOR ETHICAL
COLLABORATION BETWEEN
INVESTIGATORS. SO HOW CAN WE
WORK TOGETHER, HOW CAN THEY WORK
TOGETHER NOT ONLY SHARE DATA, WE
ARE TALKING DATA SHARING PLANS
BUT HOW THEY ALSO WORK TOGETHER
TO SHARE ETHICAL CHALLENGES TO
MOVE THIS FIELD FORWARD. TO
PROPOSE QUESTIONS FOR CONTINUED
WORK THAT I THINK THIS GROUP AND
DISCUSSIONS ARE REALLY STILL
GRAPPLING WITH THE FIRST IS WHAT
ARE THE MOST IMPORTANT ETHICALLY
SALIENT FEATURES OF THESE
STUDIES. HOW DOES TEMPORAL
RELATIONSHIP BETWEEN CLINICAL
INTERVENTION MATTER. WHAT IS THE
FULL IMPACT OF THE DUAL ROLE
RESEARCHER, I THINK HOW CAN WE
CONSIDER WHETHER THERE ARE
POTENTIAL BENEFITS OR VALUE TO
THIS DUAL ROLE AND HOW SHOULD
THAT TRANSLATE INTO PRACTICE.
WHAT WAYS ARE INTEROPERATIVE
STUDIES UNIQUE. SO WHAT DOES
THAT SURGICAL CONTEXT REALLY DO
TO SPECIFIC PRACTICES THAT COULD
BE IMPLEMENTED. THERE'S
PRACTICAL QUESTIONS INCLUDING
HOW SHOULD WE BEST DEVELOP
STANDARDIZED TOOLS, WHAT COULD
BE THE BENEFITS AND PITFALLS OF
USING THINGS LIKE THAT THAT. HOW
SHOULD WE THINK ABOUT THE
LANGUAGE WE USE TO TALK ABOUT
BENEFIT ACROSS THE DIFFERENT
TYPES OF STUDIES TO DEVELOP
LANGUAGE TO MAKE OPPORTUNITIES
TO WITHDRAW MEANINGFUL AND
METHOD LOGICAL QUESTIONS WHICH
INTERESTS ME QUITE A BIT,
PARTICULARLY THIS LAST ONE
SHOULD INVESTIGATORS
PARTICIPATE, IN DEVELOPING
ETHICAL GUIDELINES FOR THEIR OWN
WORK AND IF SO IN WHAT WAYS. I
WOULD LIKE THE CLOSE WITH JUST A
QUOTE FROM A PATIENT PARTICIPANT
BECAUSE THE VALUE OF
INVESTIGATORS INPUT IS CRUCIAL
AND THEY ARE ON THE INSIDE
MAKING MICRO AND MACRO DECISIONS
IN WAYS FOLK LIKE ME AND
ETHICISTS ARE NOT. SO THEY DO
HAVE A CRUCIAL PERSPECTIVE BUT
THIS HAS TO BE TEMPERED WITH THE
PATIENT PERSPECTIVE SO I'M HAPPY
TO TALK ABOUT THAT AS WELL.S
THAT QUOTE FROM A PARTICIPANT
WHO JOINED INTEROPERATIVE
RESEARCH STUDY DURING HIS DBS
SURGERY. SO THE BASIC THING IS
IF I DIDN'T TRUST HIM, THEN I
WOULDN'T HAVE AGREED TO HAVE THE
SURGERY DONE AT ALL. SO I TRUST
HIM WITH THAT AND THIS IS A WAY
THAT CAN HELP ANYBODY I WAS
GRATEFUL FOR THE PEOPLE THAT DID
ANYTHING TO HELP SO I COULD HAVE
THE SURGERY, SOMEBODY HAS TO
PRACTICE STUFF AND LEARN THINGS.
SO IT SEEMED LIKE AS LONG AS YOU
ARE IN THERE, YOU MIGHT AS WITH
HE WILL GO FOR IT. THANK YOU
VERY MUCH, I LOOK FORWARD TO
CONTINUED DISCUSSION IN THE REST
OF THE PANEL.
>> WONDERFUL. THANK YOU, ASHLEY,
VERY MUCH, THAT WAS GREAT. I
THINK WE HAVE A COUPLE OF
MINUTES IF PEOPLE HAVE SPECIFIC
QUESTIONS FOR ASHLEY WE WILL GET
TO DIALOGUE WITH ASHLEY AGAIN AS
PART OF THE PANEL. IF THERE ARE
SPECIFIC QUESTIONS NOW, PLEASE
RAISE YOUR HAND AND I WILL CALL
ON YOU. MAYBE I CAN START -- I
WAS VERY INTRIGUED BY THE IDEA
OF STANDARDIZE TOOLS OR
STANDARDIZE VIDEOS BUT I ALSO
NOTED THAT YOU SAID THEY NEEDED
TO BE CUSTOMIZED SO I'M
WONDERING IF YOU CAN TALK ABOUT
THAT TENSION BETWEEN WHAT THE
GOAL OF STANDARDIZATION MIGHT BE
AND HOW YOU WOULD STANDARDIZE
AND CUSTOMIZE AT THE SAME TIME.
>> THAT IS A CRUCIAL POINT. I
DON'T KNOW THE ANSWER. I THINK
PART OF THE MOTIVATION FOR
THINKING ABOUT STANDARDIZE TOOLS
IS IS TO PROVIDE A STARTING
POINT FOR PEOPLE TO HAVE SOME
OBJECTIVE AND SHARED TOOLS THAT
COULD EITHER GET THEM STARTED
HOW TO APPROACH PATIENTS IN A
KIND OF CONSISTENT WAY, BUT ALSO
TO HELP TEAMS WHO MAY NOT HAVE
THE PERSONNEL OR INFRASTRUCTURE
TO CREATE THAT SEPARATION. SOME
GROUPS NOTED THAT WHAT THEY DO
TO TRY TO REALLY PROMOTE PATIENT
UNDERSTANDING OF THE SEPARATION
OF THE CLINICAL AND THE RESEARCH
IS THE CHANGE LITERALLY THE
PERSON WHO IS IN THE ROOM WHO IS
DOING THE CONSENT. IT MAY BE
THAT SOME THINGS DON'T HAVE
THOSE RESOURCES TO DO THAT. SO
HAVING A KIND OF -- I GUESS IT
DOESN'T HAVE TO BE STANDARDIZE
TOOL BUT THAT TOOL COULD SERVE
THAT PURPOSE AS WELL. HERE IS A
VIDEO WITH AN EXTERNAL VOICE
THAT SHARES SOME KIND OF COMMON
ETHICAL PRINCIPLES ACROSS
STUDIES THAT COULD BE USED TO
FACILITATE THAT. THAT'S A GOOD
POINT. DOES THAT ANSWER YOUR
QUESTION A BIT?
>> ABSOLUTELY. GREAT. SARA HAS
HER HAND UP.
>> HI. THANKS, ASHLEY, THAT WAS
GREAT. MY QUESTION IS ALSO ABOUT
VIDEO WHICH I THINK IS REALLY
INTERESTING IDEA. AND I GUESS
I'M JUST WONDERING WHAT YOUR
THINKING WOULD GO OR THE GROUP
IS THINKING WOULD GO INTO THAT
SO IS IT MORE FOCUSED ON GETTING
ACROSS THE DIFFERENCE BETWEEN
WHAT IS CLINICAL AND WHAT IS
RESEARCH OR THE RISK OF THE OR
OR I GUESS WHAT I'M WONDERING
ABOUT, THIS WILL I'M
FORESHADOWING WHAT I WILL SAY
LATER, WILL YOU INCLUDE THINGS
FROM PREVIOUS PARTICIPANTS ABOUT
WHAT IT FEELS LIKE TO BE IN THAT
RESEARCH. BECAUSE I THINK THAT
IS A THING EVEN THE RESEARCHER
MAY KNOW FROM THE INSIDE AND IT
MIGHT BE RELEVANT TO THINKING
ABOUT PROS AND CONS OF JOINING.
>> THAT IS A REALLY GOOD POINT.
THIS CAME UP AS WELL. SOME
THINGS THAT CAME UP WERE
OPPORTUNITIES TO NOT JUST MAKE
CONNECTIONS BETWEEN PATIENTS BUT
ALSO -- BE CAREFUL HOW I SAY IT,
EXPOSE PATIENTS OR PARTICIPANTS
TO THE IDEA THEY ARE PART OF A
RESEARCH COMMUNITY. SO THERE ARE
OTHER PARTICIPANTS, WHAT IT IS
LIKE FOR THEM TO CREATE THAT
COMMUNITY, NOW THAT COULD BE FOR
THE BENEFIT OF THE RESEARCHER OR
COULD BE FOR BENEFIT OF THE
PATIENTS. BE CAREFUL HOW YOU
MIGHT DESIGN THAT. BUT THAT IS A
FANTASTIC POINT. I WONDER HOW
INVESTIGATORS WOULD FEEL ABOUT
PROMOTING PARTICULAR PATIENT
PERSPECTIVES. I THINK THERE
MIGHT BE A LITTLE BIT OF A
CONCERN ABOUT TOKENISM OR MAKING
SURE IT IS REPRESENTATIVE OR HOW
TO NOT SWAY. SO I THINK THE
INITIAL MOTIVATION WAS SOMETHING
LIKE OBJECTIVITY OR SOMETHING
LIKE, GET THE KIND OF PARTICULAR
RESEARCHER OR SURGEON SOME
DISTANCE SO THE PATIENT HAS TIME
TO CONSIDER PARTICIPATION IN
EXTRACTION FROM THOSE INTIMATE
RELATIONSHIPS THAT THEY MAY OR
MAY NOT HAVE OR THEY WILL GET AS
THEY GO THROUGH HAVING A
SURGICAL INTERVENTION. HTHAT IS A
FANTASTIC POINT POINT. I'M NOT SURE. I
THINK IT WAS MORE STANDARDIZED
WAY TO GIVE PATIENTS INFORMATION
THAT COULD DISTANCE FROM THE
POTENTIAL INFLUENCE. BUT THAT IS
INCLUDING PARTICIPANT VOICES IS
A REALLY IMPORTANT POINT. I
THINK WE SHOULD THINK ABOUT HOW
BEST TO DO THAT, ESPECIALLY WHAT
PARTICIPANT STORIES GET IN AND
WHAT PARTICIPANTS STORIES GET
OUT AND ARE WE GOING TO SHARE
THE STORIES OF THE FOLKS WHO HAD
NOT SO GREAT EXPERIENCES AND HOW
MIGHT WE DISCUSS THAT. IT WAS A
GREAT POINT.
>> THAT IS A GREAT POINT TO
DISCUSS WITH THE PANEL BECAUSE
WE HAVE THE VALUE OF A
PARTICIPANT WITH US TO GIVE US
HIS OPINION. SO I SEE TWO MORE
HANDS UP WHICH I HOPE ARE
RELATIVELY SHORT QUESTIONS SO WE
DON'T TAKE UP TOO MUCH OF SARA'S
TIME. BRUCE ROSEN, DO YOU HAVE A
QUESTION?
>> VERY QUICKLY. IT DOES SEEM
ESPECIALLY SURGEON HAS THIS
POSITION OF TRUST, IT WAS THAT
LAST QUOTE FROM THE PARTICIPANT
THAT REALLY INSPIRED IT. YET
THAT TRUST IS NOT ALWAYS FREELY
GIVEN IN THE SENSE THAT A
PATIENT GOING IN FOR A
PROCEDURE, A LIFE THREATENING
SITUATION HAS A STRONG
PSYCHOLOGICAL NEED TO DEVELOP
THAT TRUST EVEN IF IT IS --
THERE WERE OTHER UNDER OTHER
CIRCUMSTANCES NECESSARILY HAVE
IT. SO WHAT ARE THE
CONSIDERATIONS ON THE FACT THAT
THIS NOTION OF TRUST THAT
PATIENTS MAY EXTEND TO THEIR
PHYSICIANS UNIQUE WORLD THAT
PHYSICIAN RESEARCHER MIGHT HAVE,
MIGHT ITSELF NOT NECESSARILY BE
THIS KIND OF OPENLY GIVEN SENSE
OF TRUST THAT WE MIGHT IMAGINE
UNDER OTHER CIRCUMSTANCES.
>> THAT IS A GREAT QUESTION AS
WELL. I THINK IT POINTS TO A
REALLY IMPORTANT DIFFERENCE
BETWEEN INTEROPERATIVE STUDIES
AN THESE LONGER TERM HIGHLY
INTERACTIVE STUDIES WHERE EVEN
FOR KIND OF THE RNS STUDIES,
THERE IS MULTIPLE OPPORTUNITIES
TO DEVELOP THAT RELATIONSHIP
WITH THE INVESTIGATOR OVER TIME
AND TO HAVE SPACE AND TIME FOR
THESE CONVERSATIONS, WHERE YOU
THINK THERE'S AT LEAST THE
OPPORTUNITY FOR THAT TRUST TO BE
KIND OF DEVELOPED AND ETHICALLY
APPROPRIATE WAYS. FOR SOME OF
THESE OTHER STUDIES ESPECIALLY
INTEROPERATIVE STUDIES I
REMEMBER ONE PATIENT WE
INTERVIEWED, MET THE SURGEON AND
INVESTIGATOR ONE TIME BEFORE
THEY HAD THEIR SURGERY AND
PARTICIPATED IN THE RESEARCH. SO
HOW DO WE THINK ABOUT PRACTICES
THAT CAN MAKE SURE THAT THAT
TRUST IS DEVELOPED IN MORALLY
GOOD WAYS. I THINK YOU ARE
RIGHT, WHAT CHOICE DO YOU HAVE,
IF YOU HAVE TO PARTICIPATE IN
THE SURGERY, YOU NEED IT FOR
YOUR HEALTH THAT TRUST GETS
TROJAN HORSED IN A LITTLE BIT,
YOU ALMOST DON'T HAVE A CHOICE
AND IN A WAY GET TROJAN HORSE
INTO THE RESEARCH AS WELL AND
TRUSTING THAT INVESTIGATOR IN
THAT SENSE. I THINK THE FRAME
WORKS FOCUS ON REALLY WANTING TO
UNDERSTAND THE FULL ROLE THAT
DUAL ROLE, FULL RELATIONSHIP
COMPONENT IS A PLACE FOR CRUCIAL
FURTHER WORK SO THINKING ABOUT
WHAT IT IS LIKE TO BE IN THAT
RELATIONSHIP WITH SOMEONE AND
HOW CAN WE DEVELOP ATTITUDES AND
BEST PRACTICES AND IN SOME BAYS
VIRTUE RESEARCHERS THEMSELVES TO
TAKE CARE OF THAT TRUST. I DON'T
KNOW IF THAT ANSWERS YOUR
QUESTION.
>> VERY THOUGHTFUL. THANK YOU.
>> GREAT. ANOTHER GREAT TOPIC
FOR THE PANEL. JIM.
>> THANK YOU. REALLY
INFORMATIVE. I HAD TO STEP AWAY
FOR A MOMENT, YOU MAY HAVE
MENTIONED THIS BUT I LIKE THE
EMPHASIS ON COMMUNICATION
BETWEEN PATIENT RESEARCHERS AND
SURGEON AND EVERYONE WHO HAVED.
BUT WHAT ABOUT DISCUSSION OF
RESULTS OF BASIC RESEARCH IN
FUNDAMENTAL RESEARCH? I DIDN'T
SEE NOTES ABOUT THAT, DO YOU
THINK THAT WILL IMPACT PATIENT
PARTICIPANT ENTHUSIASM FOR
POTENTIAL ADDITIONAL STUDIES OR
ADDITIONAL INVOLVEMENT OR JUST
THEIR OWN INVOLVEMENT WHETHER OR
NOT THEY FEEL SATISFACTION. IS
THERE A WAY OF EXPLAINING
FUNDAMENTAL RESEARCH THAT YOU
GUYS HAVE BEEN TALKING ABOUT? OR
THINKING ABOUT?
>> YEAH. THAT IS ALSO A
FANTASTIC QUESTION. SO I THINK
IN SOME OF THE INTERVIEWS WE
HAVE DONE WITH PATIENT
PARTICIPANTS, THERE IS EVEN IN
INTEROPERATIVE STUDIES WHERE IT
IS IN SOME WAYS ONE AND DONE YOU
ARE DOING IT, DURING THE
RESEARCH, THAT IS IT. THAT IS
YOUR PARTICIPATION. WILL IS A
DESIRE EVEN IN STUDIES TO KNOW
WHAT HAS BEEN THE OUTPUT OF THE
OUTCOME OF THIS RESEARCH. SO
MANY PARTICIPANTS DON'T MAKE THE
DECISION TO JOIN LIGHTLY. THEY
VALUE WHAT THEY ARE DOING. HOW
CAN WE KIND OF NUMBER ONE KEEP
THEM ENGAGED AND LET THEM KNOW
THE RESULTSES OF THEIR OWN
PARTICIPATION BUT ALSO HOW WE
CAN TALK WITH THEM THE RESULTS
OF PARTICIPATION IN OTHER BASIC
RESEARCH AND HOW IS THAT
TRANSLATED OR NOT INTO
THERAPEUTIC OPPORTUNITIES IN THE
FUTURE. SO I THINK THAT IS
SOMETHING THAT IS NOT THE FOCUS
OF THIS PAPER BUT IT IS
SOMETHING WE HAVE BEEN THINKING
ABOUT A LOT, THINKING CONSENT,
WE TALK ABOUT RISK AND WE WANT
TO MAKE SURE PATIENTS UNDERSTAND
THE RISKS. BUT WE DON'T TALK
PERHAPS IN AS GREAT DETAIL AND
NUANCE ABOUT BENEFIT AND THE
TRANSLATIONAL LIKELIHOOD OF
THEIR PARTICIPATION TOWARDS A
CLINICAL BENEFIT THEY MAY BE
PART OF THE MOTIVATION FOR THEM
JOINING. I THINK THAT IS ANOTHER
AREA FOR REALLY IMPORTANT WORK.
WHAT ARE THE WAYS IN WHICH WE
SHOULD APPROACH PATIENTS TALKING
ABOUT THAT. THAT MIGHT BE A
GREAT OPPORTUNITY TO INCLUDE IN
VIDEOS AS WELL, EXAMPLES OF
TRANSLATIONAL PATH WHICH MAY BE
LONGER AND MORE NEBULOUS THAN
PATIENTS THINK WHEN THEY
PARTICIPATE IN STUDIES SO WHAT
IS OUR RESPONSIBILITY TO DO
THAT. AGAIN I DON'T KNOW IF THAT
ANSWERED YOUR QUESTION, JUST
SOME REFLECTIONS BACK, THAT IS A
REALLY FANTASTIC POINT.
>> THANK YOU, ASHLEY.
>> THANK YOU SO MUCH, ASHLEY. WE
LOOK FORWARD TO HAVING MORE
CONVERSATION WITH YOU IN A
MINUTE AFTER SARA IS DONE, OUR
SECOND SPEAKER IS DR. SARA
GOERING, PROFESSOR PHILOSOPHY
CORE PROGRAM ON ETHICS AND
DISABILITIES PROGRAM AT THE
UNIVERSITY OF WASHINGTON, WITH
SUPPORT FROM BRAIN FOR
NEUROETHICS RO1 FOR RESEARCH
EXPLORES AGENCY IN AGENCY WITH
NEURAL PROSTHETICS AND HOW IT
CAN IMPROVE INFORM CONSENT
PRACTICES. SHE RECEIVED HER
Ph.D. IF IN PHILOSOPHY
UNIVERSITY OF COLORADO BOULDER
AND TODAY SHE WILL TALK TO US
ABOUT ETHICAL CONSIDERATIONS FOR
BRAIN RESEARCH PARTICIPATION IN
LONG TERM HIGHLY INTERACTIVE
STUDIES. THANK YOU, SARA.
>> SLIDE ARE UP.
>> I AM JUST LOOKING FORWARD TO
TALKING TO YOU ABOUT SOME WORK
THAT WE HAVE DONE IN OUR GROUP
AROUND -- THESE ARE JUST
EXAMPLES NOT NECESSARILY OUR
PEOPLE BUT FOR PARTICIPANTS WHO
ARE IN LONG TERM HIGHLY
INTERACTIVE STUDIES OF BCI WHERE
THEY ARE PRIMARILY AS YOU CAN
SEE IN PICTURES USING NEURAL
ACTIVITY TO MOVE ROBOTIC ARM OR
CURSOR ON THE SCREEN OR THAT
KIND OF THING. THIS COMES OUT
OF OUR GRANT I'M CO-PI ON AARON
KLINE ON BCI AND HUMAN AGENCY,
AS WE SAID THEN, BCI OPERATE
DIRECTLY ON THE BRAIN AND IN OR
BETWEEN THOUGHTS AND ACTIONS AND
EMOTIONAL FEEDBACK AND BECAUSE
OF THAT CAN EFFECT HUMAN AGENCY
OR SENSE OF OURSELVES AS AGENTS.
IF WE THINK OF AGENCY AS A SENSE
OF OWNERSHIP OVER THE
EXPERIENCES AND ACTIONS THAT
SHAPE OUR IDENTITIES THEN WE
WANT TO BE ABLE TO SAY IN USING
THE ROBOTIC ARM OR USING THE BCI
TO MOVE CURSOR THAT WE CAN
CONFIDENTLY SAY I DID THAT
RATHER THAN IT IS SOMETHING THAT
JUST HAPPENED O SO IN OUR GRANT
WE DEVELOPED A CONCEPTUAL MAP OF
AGENCY MORE THOSE ETHICAL
CONCEPTUAL WORK AND WE PUBLISHED
A PIECE IN A JOB NEUROSCIENCE
WITH THIS MAP MAYBE NOT REALLY
MAP, RIGHT, OUTLINING DIFFERENT
DIMENSIONS OF AGENCY THAT ARE
HIGHLY RELEVANT IN THIS
ENVIRONMENT. SECONDLY WE WANTED
TO UNDERSTAND THE EXPERIENCES AN
PERSPECTIVES OF BCI RESEARCH
PARTICIPANTS ON THEMES RELATED
TO ETHICS AND AGENCY AND IDEA
WAS THAT WE WOULD DO IN DEPTH
PHENOMENOLOGICAL INTERVIEWS
MULTIPLE TIMES THROUGH THE
COURSE OF THE STUDY. AND FINALLY
TO CREATE A TOOL FOR IMPROVING
INFORMED CONSENT FOR PEOPLE
COMING INTO THESE STUDIES. SO
THEY MIGHT KNOW -- MIGHT BE ABLE
TO THINK ABOUT WHAT THEY WOULD
WANT TO KNOW IN MAKING THEIR
PARTICIPATION DECISIONS. SO I'M
REALLY GOING TO TALK ABOUT AIM 2
IN THIS SHORT TALK. I AM VERY
GRATEFUL TO GUPTA A POST DOC IN
THE GRANT TRAINING IN
PHENOMENOLOGICAL TRAINING
METHODS. YOU ARE NOT JUST
ASKING QUESTIONS TO GET OPINIONS
ABOUT SOMETHING BUT YOU ARE
ASKING THE PARTICIPANT TO FULLY
ARTICULATE OUR EXPERIENCE. IT
IS SUCH UNUSUAL EXPERIENCE TO
MOVE A THING THROUGH YOUR
THINKING OR CONCENTRATION ON
CERTAIN IMAGERY, THAT NOT
EVERYBODY DOES IT RIGHT OFF, SO
IT TAKES TIME, KIND OF CYCLING
BACK, BUT MORE WHAT THAT FELT
LIKE AND I WANT TO SHARE SOME OF
THOSE RESPONSES WITH YOU HERE
TODAY. SO WE ASKED THINGS LIKE
WHAT MADE O MOTIVATED YOU TO
ENROLL IN THE STUDY, WHAT WAS IT
LIKE TO LEARN TO USE THE DEVICE
AND NOW THAT YOU HAVE LEARNED,
HOW DOES IT FEEL TO USE THE
DEVICE. THE INTERVIEWS TYPICALLY
LASTED ONE AND A HALF HOURS OR
SO AND IT IS A SMALL NUMBER, IN
PART BECAUSE THERE AREN'T VERY
MANY PEOPLE WHO HAVE THIS
EXPERIENCE, AND ALSO GLOBAL
PANDEMIC KIND OF SLOWED DOWN
RECRUITMENT AND ACTUAL SESSIONS.
SOME KEY FEATURES I WANT TO TALK
ABOUT AN OVERVIEW SLIDE OUR
ORIGINAL FOCUS WAS ABOUT AGENCY,
WHAT IS IT LIKE TO DO THINGS
WITH YOUR THOUGHTS IN THE
LANGUAGE OF KERGAL E ET AL IN THIS
2020 PAPER, IT IS AGENCY
ENHANCING YOU CAN DO THINGS BUT
YOU WOULDN'T HAVE BEEN ABLE TO
DO WITHOUT THIS DEVICE. BUT ALSO
POTENTIALLY AGENCY DISRUPTING
AND WE WANT TO PAY ATTENTION TO
BOTH OF THOSE. WHAT CAN WE LEARN
ABOUT IMPACT ON PEOPLE WITH
EXPERIENCE USING THE DEVICE SO
THAT WAS OUR FOCUS. IN THE
CONTEXT OF THESE INTERVIEWS,
WHAT IS OUR QUITE LENGTHY, WE
FOUND INTERESTING COMMENTARY ON
OTHER ASPECTS OF STUDIES. SO I'M
GOING TO GO THROUGH SOME OF
THESE TODAY. THE FACT THEY ARE
TIME CONSUMING AND INTENSIVE,
MENTALLY AND PHYSICALLY
EXHAUSTIVE, REIS SKI IN A
VARIETY OF WAYS, THERE ARE
ISSUES OF BARE RECIPROCITY FOR
WHAT IS OFFERED FROM THE
PARTICIPANTS WHAT THEY FEEL THEY
GET BACK. AND THAT THERE'S
OPPORTUNITY FOR MEANINGFUL
PARTICIPATION IN RELATIONSHIP
BUILDING. ASHLEY TOUCHED ON THAT
A BIT AT THE END OF HER TALK AND
ALSO THAT IT IS NOVEL THAT IT
CAN BE DIFFICULT FOR PERSPECTIVE
PARTICIPANTS TO UNDERSTAND WHAT
TO EXPECT. SO I WILL GIVE YOU A
GLIMPSE OF THESE THINGS. LEANING
ON QUOTE FROM OUR INTERVIEWS.
FIRST WITHOUT A DOUBT, THIS IS
GROUND BREAKING AND AGENCY
ENHANCING AND REALLY EXCITING.
SO ONE PERSON SAYS THEY WILL ASK
ME TO DO DIFFERENT TASKS PRETEND
YOU ARE USING YOUR THUMB TO MOVE
THIS CIRCLE ON THE SCREEN,
PRETEND. THAT WAS TWILIGHT
ZONISH TO ME, I THOUGHT REALLY?
HOW DO I DO THAT? THE MOST
INCREDIBLE THING TO ME WAS THAT
I COULD THINK ABOUT DOING
SOMETHING AND THE COMPUTER KNEW
MY BRAIN WAS TRYING TO DO IT AND
IT DID IT AMAZING. ANOTHER
PERSON SAYS I WOULDN'T GET
SENSATION OR MOVE MY FINGERS BUT
JUST WATCHING THE ROBOTIC ARM
MOVE EXACTLY HOW I WANTED IT TO
MOVE, IT WAS SO SHOCKING I THINK
IN THE BEGINNING THAT I WAS ABLE
TO MOVE THE THUMB. I THINK THAT
IS WHAT BUILT MY BOND WITH THE
ROBOTIC ARM, SEEMINGLY TO ACT
EXACTLY HOW I WANTED TO CONTROL
IT, I BUILD MY BOND WITH ROBOTIC
ARM AND MAKE IT TAKE STEPS TO
PEEL LIKE MY ARM. FASCINATING
ABOUT SENSE OF EMBODIMENT. BUT
THERE ARE ALSO CERTAIN WAYS IN
WHICH IT WAS INVASIVE ON AGENCY.
SO I THINK ONE THING I WANT TO
PAUSE A SECOND WE TALK ABOUT
INVASIVENESS IN THIS SPACE AS IF
IT IS JUST ABOUT ANYTHINGNA GOES
UNDER THE SKIN BUT INVASIVENESS
MATTERS FOR A SENSE OF WHAT I AM
AS AN AGENT. A THING COULD BE
OUTSIDE OF MY BRAIN
NON-IMPLANTABLE ONE THAT COULD
HAVE INVASIVE ISSUES. SO SOME OF
THE THINGS PEOPLE SAID HERE,
THERE IS A FORCE THAT I FEEL
THAT I'M WRESTLING AGAINST.
SOMETIMES IT IS NOT AS STRONG,
OTHER TIMES OVERWHELMING WHERE I
CAN'T PUSH AGAINST IT. IN FACT
IT PUSHES ME. I DON'T
UNDERSTAND WHY IT HAPPENED ON SO
OCCASIONS AND NOT OTHERS BUT IT
IS SOMETHING THEY TRYING TO
FIGURE OUT. IT SAYS LATER I
FEEL FRUSTRATED BECAUSE I'M
TRYING TO PUSH THROUGH AND THE
COMPUTER IS HOLDING ME BACK. I'M
TRYING TO EXERCISE MY AGENCY IN
THIS WAY AND THERE'S PUSH BACK
FROM THE COMPUTER. ANOTHER
PERSON SAYS WAIT A MINUTE WE
WERE JUST ROLLING ALONG REALLY
GOOD AND NOW THINGS AREN'T
WORKING. WHAT IS WRONG? IT WAS
FRUSTRATING. AND I HADN'T OPENED
UP FOR THOUGHT THAT OH, MAYBE
THEY ARE DOING SOMETHING
DIFFERENT, MAYBE ARE YOU JOKING
WITH ME? WHY CAN'T THIS BOARD
SUPPOSE TO GO DO WHAT IT IS
SUPPOSED TO DO, I THINK IS THE
CLAIM THERE, AND THEN IT WORKED
SO WHY DID THAT HAPPEN? I DON'T
UNDERSTAND IT. I DON'T
UNDERSTAND IF IT IS SOMETHING
I'M DOING SOMETHING RESEARCHERS
ARE DOING OR WHAT IS HAPPENING.
IF THINGS GOT AWAY FROM ME, SHE
SAYS I SAY THIS ISN'T WORKING
RIGHT, IF I COULDN'T CONTROL IT,
ESPECIALLY WE HAD ALREADY
MANAGED TO CONTROL A TASK TASK. THEN
ALL OF A SUDDEN I DIDN'T HAVE
CONTROL OVER WHATEVER IT WAS IT
WAS DOING. I SAY THIS IS NOT
RIGHT. I KNOW HOW TO DO THIS,
SOMETHING IS DIFFERENT. I FEEL I
CAN DO THIS THEN I CAN'T AND I
CAN'T EXPLAIN WHAT'S HAPPENING
THERE. FINALLY A THIRD PERSON
SAYS I FELT LIKE THAT MAYBE WHEN
THE GAIN ON THE COMPUTER SIDE
WAS TOO HIGH, IT WAS TOO EASY. I
HAD TO PUT NO EFFORT IN
COMPLETING THE TASK. BUT I
ALWAYS SHARED THAT BECAUSE I
FELT LIKE I WAS THERE TO WORK
AND WANTED TO MAKE SURE IT WAS
ME DOING THE TASK AND NOT THE
HELP OF THE COMPUTER
ACCOMPLISHING IT. THAT KIND OF
SHOWS YOU THIS NEED TO FEEL AGE
ENIAL. I'M DOING IT AND FEELING
UNCERTAINTY WHEN IT FEELS TOO
EASY IT FELT LIKE THE COMPUTER
WAS DOING IT. THESE ARE TIME
CONSUMING INTENSIVE STUDIES.
THEY ARE TYPICALLY SOMEWHERE
BETWEEN ONE AND FIVE YEARS.
HIGHLY INTERACTIVE. SO PEOPLE GO
INTO THE LAB, AT LEAST PRE-COVID
TWO OR THREE TIMES A WEEK FOR
TWO HOURS AT LEAST, OFTEN
REQUIRES TRAVEL TO LAB, PARKING
AND ALL OF THESE THINGS AS WE
KNOW CAN BE MADE MORE DIFFICULT
IN CASES WHERE THE RESEARCH
PARTICIPANT HAS A NEED FOR
ACCESSIBLE BAND DISABLED
PARKING, LOGISTICS OF HAVING A
CAREGIVER, HEALTH THEM GET THERE
ET CETERA. SO ONE PERSON SAYS
HERE JUST TO BE ILLUSTRATIVE. IT
FELT LIKE I WASN'T IN CONTROL
SOME OF THE TIME. IT ALSO FELT
LIKE MY ENERGY MY CAREGIVERS PUT
TO GET ME THERE ON TIME WAS
POINTLESS. SO THAT'S WHY I WOULD
BE MAKING A POINT TO SPEAK OUT
BECAUSE IT IS THE WHOLE PROCESS
THAT HAS TO BECOME THE CAREGIVER
HAS TO BE THERE. I HAD TO BE,
THE WHOLE EFFORT WOULD BE
USELESS. IT WAS LIKE WHY WAS I
THERE, WHY DID IT WAKE UP IN THE
MORNING? THIS IS JUST -- IT
TAKES A LOT OF EFFORT TO GET
THERE, I WANT TO MAKE SURE MY
TIME IS USED WELL. WHEN THEY
ARE THERE, IN THESE HIGH LITER
ACTIVE SESSIONS. I --
INTERACTIVE SESSIONS. IT IS
MENTALLY, JUST DOING VISUAL
IMAGERY, MENTALLY AND PHYSICALLY
EXHAUSTING. SO A FEW EXAMPLES OF
THE SOME OF THE TIME I COULDN'T
ACCOMPLISH WHAT THEY WANTED ME
TO ACCOMPLISH ACCOMPLISH. I COME HOME AND
CONTINUE WORKING IN MY BRAIN.
COME HOME AND PRACTICE ALL DAY
LONG. DOESN'T HAVE ROBOTIC ARM,
DOESN'T HAVE THE SET UP BUT THEY
ARE PRACTICING THE
CONCENTRATION. I HAD TO LEARN
HOW TO COME HOME AND RELAX.
BECAUSE I WANT TO SAY MAYBE FOR
A YEAR, I COULDN'T JUST COME
HOME AND RELAX. I WAS WORKING
WITH THE ROBOTIC ARM BUT NOT
PHYSICALLY CONNECTED TO IT. I
WAS STILL MENTALLY TRYING TO
ACCOMPLISH IT. IT WAS TOO
EXHAUSTING. IT WAS TOO MUCH IT
WAS OVERWHELMING. ANOTHER
PERSON, VERY HARD, IN FACT IT IS
PHYSICALLY DRAINING AS WELL AS
MENTALLY. LIKE I SAID BEFORE WE
MET UP WITH YOU GUYS WHEN I'M
DONE WITH A SESSION I'M BEAT.
ESPECIALLY WHEN WE ARE DOING NEW
THINGS THAT I HADN'T DONE
BEFORE. OVER TIME IT IS ALMOST
LIKE A MUSCLE IN MY MIND, AND IN
MY ABILITY TO PUSH THE CURSOR.
IT STRENGTHENS OVER TIME AND
FREQUENT USE. IT TAKES TIME FOR
ME THE BUILD UP STRENGTH
MENTALLY AND PHYSICALLY. BUILT
UP STRENGTH TO SEND THAT SIGNAL
DOWN TO MY FOOT AND MIMIC THE
ACTION OF MOVEMENT. THE FOOT
ISN'T MOVING AT ALL, THE ARMS
AREN'T MOVING AT ALL BUT IT IS
PHYSICALLY EXHAUSTING TO DO THE
MENTAL WORK. ONE MORE, IN THE
BEGINNING I TOOK EFFORT INTO IT
AND TO THE POINT WHERE MY MIND I
WAS TIRED. MY ARMS WERE TIRED.
AS IF IT WERE MY HAND, AS IF I
HAD ACTUALLY BEEN DOING IT. THAT
STILL HAPPENS. MY ARMS GET
TIRED. I FIND THAT FASCINATING.
WHAT IS HAPPENING WHEN A PERSON
ISN'T MOVING THEIR ARMS BUT
THEIR ARMS FEEL TIRED THE
PHENOMENAL EXPERIENCES THAT
TIREDNESS. AT THE END OF THE
SESSION I AM TIRED I WOULD FALL
ASLEEP A COUPLE OF HOURS. THAT
DEPLETION OF BRAIN POWER. AFTER
A SESSION. IT IS RISKY. WE KNOW
THIS. THAT IS WHEN WE ARE
TALKING UNDERSTANDING OF RISK
AND THE CONSENT PROCESS, THIS IS
A KEY THING. ONE PARTICIPANT
SAYS I CONSULTED MY MOM, MY SON
MY DAUGHTER I HAD NO FAMILY
SUPPORT. NOBODY WANTED ME TO DO
IT. NOBODY WANTED ME TO DO IT.
THEY THOUGHT I MIGHT DIE OR THAT
I WOULD HAVE SOME BRAIN DAMAGE.
BASICALLY THEY TOLD ME THE ONLY
PART THAT FUNCTIONS CORRECTLY
ABOUT YOU IS YOUR BRAIN AND YOU
ARE GOING TO CUT IT OPEN? THEY
WERE COMPLETELY AGAINST IT. THIS
IS THE THINGS I HEARD FROM
OTHERS A HE WILL WITH THINKING
ABOUT THE PROSPECT OF ENTERING
SUCH A STUDY. THAT'S THE THING
THAT IS WORKING WELL, WHY WOULD
YOU TAKE ANY RISK WITH IT.
ANOTHER PERSON SAYS I'M STILL
CAUTIOUS I DON'T WANT ANYTHING
TO HIT PEDESTALS. WE HAD A
SITUATION WHERE THERE'S TWO
PEDESTALS OUT OF ONE THE SCREWS
CAME LOOSE AND I WAS GETTING
HEADACHES. THEY TOOK ME TO
SURGERY AND MOVED THE PEDESTAL
OVER AND PUT NEW SCREWS IN BUT
THAT WAS AN OUTPATIENT THING. I
JUST HAVE TO BE CAREFUL, WE NEED
TO HAVE OUR HAIR DONE AND MY
HAIR DRESSER HAS TO BE CAREFUL
THAT SHOULDN'T HIT THEM WHEN
WASHING MY HAIR IS IT IS NOT
ONLY THIS INITIAL SURGICAL RISK
BUT RISK GOING ALONG OF
DISLODGING THEM OR NEEDING
ANOTHER SURGERY TO CONTINUE
PARTICIPATION. I WANT TO I
THOUGHT ABOUT THIS ONE, THERE
ARE GOING TO BE ISSUES ABOUT
THEIR RECIPROCITY AND THINKING
ABOUT COMPENSATION OR
RECOGNITION FOR THE EFFORT PUT
FORTH BY THE PARTICIPANT. THIS
PERSON SAYS BECAUSE THE PROJECT
IS RECEIVING MULTI-MILLION
DOLLAR, WE ARE TALKING OVER $150
MILLION DONATIONS, AND I'M OVER
HERE GETTING $50 FOR MY TIME,
WHEN I JUST TO COME TO YOU IT
WOULD TAKE SEVERAL HOURS, ANY
LEGAL IMMIGRANT DAY LABOR IS
GETTING PAID MORE THAN WHAT I'M
DOING AND DIDN'T MAKE SENSE TO
COME OUT MAKING CAREERS OVER
HERE. I'M HELPING MAKE CAREERS.
THESE PEOPLE ARE GOING TO BE
RECOGNIZED FOR THE REST OF THEIR
LIVE WHAT IS THEY ESTABLISH,
WHEY I'M HELPING THEM ACCOMPLISH
AND THEY ARE NOT RECOGNIZING ME
AT ALL. THINKING ABOUT WHAT IS
FAIR IN TERMS OF WHAT THE
DIFFERENT PARTIES IN THIS
ENDEAVOR RECEIVE IS SOMETHING I
THINK WE HAVE TO TALK MORE
ABOUT. THERE ARE ALSO CONCERNS
ABOUT CONTINUED ACCESS, I JUST
LOOK AT IT AS BEING PART OF ME
THAT WAS THERE BECAUSE WHEN A
DEVICE IS EXTERNAL IT IS A TOOL.
BUT IF IT IS PART YOUR KNOWN
ANATOMY, IT IS THERE, USE IT. I
ALWAYS LOOK AT IT AS BEING PART
OF ME, NOT SOMETHING THAT I
WOULD SHUT OFF OR TURN BACK ON.
IT BECOMES PART OF WHO I AM.
SOMEBODY ELSE SAYS YOU WANT TO
GO MANY THERE BE CONNECTED MOVE
THE ROBOTIC ARM LIKE A HUMAN
BODY ARM BUT YOU QUICKLY LEARN
YOU ARE NOT ABLE TO DO THAT,
THERE IS A PROCESS, IT WAS
DISAPPOINTING. IT WASN'T
DISAPPOINTING TO THE POINT I
WASN'T GOING TO BE PART OF
PROJECT AND CONTINUE MOVING
FORWARD. I WOULD HAVE LIKE TO
KNOW THAT DARPA WAS THE OWNER OF
THE ROBOTIC ARM I BEGIN WITH AND
COULD HAVE CAME IN AND TOOK IT
WHEN I FELT LIKE IT, THAT IS
WHAT HAPPENED. SO ONE OF THE
THOUGHTS HERE IS THAT WHEN YOU
DO GET SOME ENHANCEMENT IN
AGENCY OR FEELING OF THIS THING
BEING EMBODIED, THEN IT IS
REMOVED, AT THE END OF THE STUDY
OR WHEN SOMEBODY EXITS THE
STUDY, THAT -- IT IS NOT JUST
BACK TO BASELINE, IT FEELS LIKE
A VIOLATION OF SOMETHING THAT
CHANGE THE WAY THE PERSON IS IN
THE WORLD. WE ALSO HEARD THIS I
WILL JUST SAY I'M MAINLY TALKING
BCI FOR MOTOR CONTROL STUDIES
BUT WE ALSO HEARD FROM PEOPLE
WHO ARE USING RESEARCH OR
CLINICAL RESEARCH DBS FOR
PSYCHIATRIC ISSUES. ONE PERSON
SAID MY ONLY CONCERN IS IF IT
DOESN'T GET APPROVED HOW MUCH
SUPPORT ARE WE GOING TO GET ONCE
THE STUDY ENDS, IT IS IN THERE,
SEEMS TO BE WORKING BUT I DON'T
KNOW WHAT HAPPENS WHEN THE STUDY
ENDS. I WILL SAY SO THESE ARE
SOME WORRIES THAT CAME OUT FROM
THE INTERVIEWS. I WILL SAY
THOUGH THAT PEOPLE REALLY FOUND
IT MEANINGFUL AND APPRECIATED
THE RELATIONSHIP BUILDING THAT
WENT ON GIVEN THE LENGTHY NUMBER
OF YEARS THEY ARE INVOLVED,
NUMBER OF TIMES PER WEEK. SO ONE
PERSON SAYS IT GAVE ME A
PURPOSE, WHEN I WENT THROUGH THE
ACCIDENT. AND REALIZED I WAS
PARALYZED NOT JUST PARALYZED
FROM LEGS BUT LITERALLY
SHOULDERS DOWN I THOUGHT IT IS
OVER FOR ME, HOW AM I GOING TO
DO THOSE THINGS. THIS IS A
PERSON WHO WAS A NURSE. HOW AM I
GOING TO TAKE CARE OF PATIENT?
AS I STARTED TO ENGAGE MORE INTO
THIS PROJECT AND SEEING THE
POTENTIAL BENEFIT, I FEEL LIKE I
NEVER LEFT THE PROFESSION. MY
CONTRIBUTION IS HERE. I FEEL
LIKE I'M DOING SOMETHING VERY
MEANINGFUL, IT MATTERS. BEYOND
MYSELF. ANOTHER PERSON SAYS
BEING INVOLVED WITH THE RESEARCH
HAS GIVEN ME IMPROVED SENSE OF
SELF BECAUSE I'M CONTRIBUTING
NEEDED AND HAVE VALUE FOR THINGS
I'M ABLE TO DO FOR RESEARCH. SHE
JOKED ABOUT BEING A LAB RAT THEN
NOTED PI OF THE STUDY SAID I
DON'T LOOK AT YOU AS A LAB RAT,
YOU ARE A CO-WORKER, A
COLLEAGUE. IT WAS A NICE
SENTIMENT SO THE SENSE OF DOING
SOMETHING MEANINGFUL AND
BUILDING A RELATIONSHIP AS A
TEAM MEMBER. TO OUR THIRD AIM WE
ASK PEOPLE IF THEY UNDERSTOOD
WHAT THEY WERE GETTING INTO.
THESE ARE PEOPLE ALL THE WAY --
WELL INTO THE STUDY OR EVEN OUT
OF IT. ONE SAYS I THINK I
UNDERSTOOD AS MUCH AS I WAS
GOING TO UNDERSTAND WITHOUT
BEING PART OF IT. I TRIED TO
ASK ALL THE RIGHT QUESTIONS, I
COULD, BUT I DON'T THINK
ANYTHING PREPARES YOU. I DON'T
THINK YOU CAN ASK THE RIGHT
QUESTIONS. WITHOUT BEING PART OF
IT. I THINK THAT'S REALLY
FASCINATING. YOU DON'T KNOW WHAT
TO ASK UNTIL YOU ARE ALREADY IN
THERE. ANOTHER PERSON SAYS I
UNDERSTOOD IT ON PAPER AND THEN
TO HAVE IT ACTUALLY HAPPEN TO BE
DOING THE TASKS ARE COMPLETELY
DIFFERENT THAN WHAT I THOUGHT IT
WAS GOING TO BE. I HAD THAT
THOUGHT THAT I WOULD BE ABLE TO
START USING A TABLET APPLICATION
I WAS USED TO USING AND MAN I
HAD TO DROP DOWN MY EXPECTATIONS
LOW THAT THIS WAS NOT ABOUT THAT
AT ALL. SHE SAYS I PROBABLY
WOULD HAVE WANTED TO TALK TO
SOMEBODY ALREADY INVOLVED TO SEE
WHAT THEIR EXPERIENCE WAS LIKE,
AS IT TURNED OUT THERE'S NOT
MANY PEOPLE DOING THIS. SO MY
FINAL SLIDE. SO WHAT. I INVOLVE
THESE QUOTE I GAVE YOU. SOME
TENTATIVE TAKE HOME LESSONS. IT
IS REALLY IMPORTANT TO FIGURE
OUT WAYS TO RECOGNIZE
PARTICIPANTS FOR THEIR
CONTRIBUTIONS FOR THE RISKS THEY
TAKE, THE TIME THEY INVEST, THE
WORK THEY DO, AND MENTALLY AND
PHYSICALLY EXHAUSTING, WE NEED
TO MAKE SURE THAT THEY GET
RECOGNITION FOR THAT. IT IS
GOING TO BE IMPORTANT TO DEVELOP
CONSENT DISCUSSION TOOL TO HELP
PERSPECTIVE PARTICIPANTS
UNDERSTAND WHAT THEY CAN EXPECT.
THIS IS SOMETHING OUR GROUP IS
WORKING ON THIS YEAR IN THE
FINAL YEAR OF OUR GRANT.
ATTENTION TO SUPPORT STRUCTURE
WITHIN THE STUDY, THINKING ABOUT
WAYS THAT PEOPLE CAN BE
PARTICIPANTS CAN BE AS WELL
SUPPORTED AS POSSIBLE IN TERMS
OF GETTING THEIR HAVING COVERAGE
FOR CAREGIVER ROLES, IF THERE
ARE CAREGIVERS WHO CONTRIBUTE TO
THE RESEARCH IN SOME WAY
UNDERSTANDING WHAT THEY CAN DO
AND INCLUDING THEM. THINKING
ABOUT FINANCIAL COMPENSATION. I
ACKNOWLEDGE THERE ARE DANGERS
AND IN THE LITERATURE THERE IS
WORRY ABOUT UNDUE INDUCEMENT,
GIVEN THAT QUOTE I GAVE ON THE
FAIR RECIPROCITY SLIDE THERE IS
A SENSE I'M DOING A LOT HERE.
AND A LOT OF MONEY IS BEING MADE
AND I DON'T FEEL LIKE I'M BEING
TREATED FAIRLY IN TERMS OF WHAT
MY COMPENSATION IS. OUR TWO
WONDERFUL POST DOCS HAVE PAPER
IN PROCESS ON THAT GUPTA AND
ANDREA, OTHER WAYS TO RECOGNIZE
AND VALUE AND CONTRIBUTION
BEYOND PAYMENT. THINGS LIKE
THINKING OF PEOPLE AS TEAM
MEMBERS, TRYING TO EXPLORE WHAT
THAT WOULD MEAN TO MAKE SURE
PEOPLE FEEL RECOGNIZED AND
RESPECTED IN THAT ROLE. AND THEN
ALSO BETTER POST TRIAL ACCESS OR
HELP TRANSITION OUT OF THE
STUDY, OUR GROUP RAN A POST
TRIAL OBLIGATION WORKSHOP LAST
SPRING AND WE ARE WORKING ON A
PAPER THAT SHOULD BE SHARED
AROUND HOW TO MAKE SURE PEOPLE
ARE REALLY TREATED WELL AND
SUPPORTED THROUGH THE EXIT OF
THE STUDY. THIS IS MY AWESOME
GROUP HERE FROM UDUB. HAPPY TO
TAKE SOME QUESTIONS. I WILL SEE
IF I CAN STOP MY SHARE.
>> THANK YOU, SARA. THAT WAS
WONDERFUL. COUPLE OF BRIEF
QUESTIONS FOR SARA BEFORE WE
START THE PANEL DISCUSSION?
ANYBODY? ASHLEY.
>> THANK YOU FOR THAT.
>> REALLY WONDERFUL WONDERFUL. SO SOME OF
THE THINGS YOU SAID TO ME, SO WE
ALSO DO SOME WORK WITH PATIENTS
WHO ARE LIKE IN EARLY
FEASIBILITY STUDIES FOR VISUAL
BCI SYSTEMS, HAVING VISUAL
CORTICAL PROSTHESIS DEVICE AND
REALLY COMMON THEMES WHAT YOU
SHARE AND SOME OF THE THINGS WE
SEE LIKE EXPECTATIONS, MAYBE
THAT THIS IS KIND OF LIKE A
TRANSFORMATIVE EXPERIENCE IN
SOME WAY WHERE YOU CAN KIND OF
UNDERSTAND WHAT IT IS LIKE UNTIL
YOU DO IT. I'M WONDERING
WHETHER YOUR THOUGHTS ARE, ON
THE BENEFITS OF CROSS TALK,
ACROSS THE VARIOUS BCI STUDIES.
WHAT YOU THINK MIGHT BE THE
BENEFIT OF BEING ABLE TO SHARE
THOSE COMPARE THOSE EXPERIENCES.
WE HAVE BEEN THINKING THERE'S
SIGNIFICANTLY DIFFERENT BUT I'M
WONDERING YOUR THOUGHTS ON THAT
GIVEN MOVEMENT AND VISION AND
SPEECH AND ALL THE THINGS
HAPPENING IN THE SPACE.
>> WE HAVE TO PAY ATTENTION TO
THOSE DIFFERENCES. BUT I GUESS
THIS IS WHERE I THINK THE
EMPIRICAL WORK MATTERS WE NEED
TO TALK TO PEOPLE IN THE STUDIES
TO KNOW BETTER WHETHER OR NOT
THE ISSUES AND THE PHENOMENAL
EXPERIENCES REALLY SIMILAR AT
LEAST IN BROAD STROKES OR VERY
DIFFERENT. I THINK DIFFERENT
STUDIES SOME IN YOUR HOME, SOME
INTO THE LAB, IT IS NOT ONLY THE
MODALITY THAT WE ARE TALKING
ABOUT BUT HOW THEY ARE ORGANIZED
AND STRUCTURED. THIS IS WHAT I
THINK, SO INTERESTING THAT THE
PEOPLE WE TALK TO SAID YEAH, I
JUST -- I WOULDN'T HAVE EVEN
KNOWN WHAT QUESTIONS TO ASK. I
FEEL LIKE I UNDERSTAND AS BEST I
COULD BEFORE I HAVE THE
EXPERIENCE. BUT NOW THAT WE HAVE
THE EXPERIENCE, LET'S USE THE
EXPERIENCE TO FEEDBACK TO
PERSPECTIVE PARTICIPANTS, AS YOU
SAID IN MY QUESTION IN YOUR
SESSION ASHLEY, NOT TO JUST PICK
ONE OR TOKEN HERE TOKEN THERE
BUT TO SORT OF SAY THIS IS A
RANGE OF EXPERIENCES THAT PEOPLE
HAVE HAD DOING THIS AND YOU JUST
WANT TO KNOW SOMETHING ABOUT
THAT. BEFORE YOUR SIGNING UP FOR
IT TO MAKE SURE YOU ARE WELL
INFORMED. SOME OF THE THINGS I
DIDN'T TALK ABOUT BUT SOME
PARTICIPANTS SAID IS THERE ARE
ALSO LOST OPPORTUNITIES, IF YOU
ARE IN THIS STUDY YOU ARE NOT
GOING TO BE IN THE STEM CELL
STUDY. SO YOU WANT TO BE CLEAR
ABOUT THE POSSIBILITIES FACING
WHAT YOU ARE DOING, I THINK WE
WILL STILL DO IT, I WILL SAY OUR
PARTICIPANTS I THINK ALL OF THEM
SAID EVEN THE PEOPLE VERY
CRITICAL, SAID THEY REALLY LIKED
BEING IN THIS STUDY. BUT WE ARE
NOT JUST DONE THERE, THERE ARE
SIGNIFICANT CONCERNS WE WANT TO
PAY ATTENTION TO THOSE AND THINK
ABOUT WAYS ESPECIALLY AS THIS
WORK EXPANDS THAT WE CAN DO IT
WITH BETTER SUPPORT FOR THEM AND
THEIR NEEDS.
>> STEVE.
>> SO LET ME JUST FIRST SAY
AMAZING STUDY STUDY. I THANK YOU AND
AND THANK ON OUR BEHALF ALL OF
YOUR TRAINEES AND SO FORTH WHO
PARTICIPATED. THIS IS
INCREDIBLE. BUT NOW TO ASK
SOMETHING PRAGMATIC AND NOTHING
YOU WOULD FIND IN PHILOSOPHY OR
DARKER PAGES, WHICH IS HOW DO
YOU REDUCE THIS TO PRACTICE? YOU
HAVE DONE THIS EMPIRICAL STUDY,
IT IS ONE STUDY, IT IS VERY
CONVINCING. YOU JUST SAID WE
SHOULD LEARN FROM PEOPLE'S
EXPERIENCE, WOULDN'T IT BE NICE
IF THEY KNEW THESE THINGS AHEAD
OF TIME. THE PROBLEM IS THIS IS
COMING FROM DIFFERENT FUNDING
AGENCIES AND DINT UNIVERSITIES.
ASIDE FROM ALL THE NOT A HUGE
NUMBER BUT SCHOLAR PAPER IF YOU
HEARD ONE ABOUT ANOTHER ONE
TODAY ON ETHICAL COMMITMENTS,
THESE VERY IMPORTANT PAPERS. IS
THERE A WAY OF LITERALLY TURNING
THIS INTO A BEST PRACTICE THAT
WOULD BE EXPECTED ACROSS FUNDING
APE GYPSIES, WHEN THEIR PROJECTS
SUCH AS THIS? IT SHOULD BE A
LIVING DOCUMENT. BECAUSE I AGREE
ENTIRELY, THIS IS BASED ON
PEOPLE'S EXPERIENCE. THAT WILL
CHANGE OVER TIME OR THERE WILL
BE NEW POINTS BUT CURIOUS, MAYBE
IT IS UNFAIR THE ASK YOU, BUT
HOW WOULD WE -- HOW WOULD WE
MAKE THE VOLUNTEERS THE
BENEFICIARIES, THE TRUE
BENEFICIARIES OF YOUR EMPIRICAL
WORK?
>> IT IS A GREAT QUESTION.
PHILOSOPHERS DOING WORK FOR THE
NIH ARE GOING TO HAVE TO HAVE
THAT PRACTICAL TURN. THIS IS
OUR THIRD AIM IN OUR GRANT AND
ONE OF THE THINGS THAT WE HAVE
LOOKED AT WITHIN THERAPEUTICS SO
CANCER CARE, THERE IS A THING
CALLED A QUESTION PROMPT LIST.
WHICH IS A SET OF QUESTIONS THAT
MIGHT GUIDE YOUR DISCUSSION
AROUND INFORMED CONSENT AGAIN IN
THE THERAPEUTIC CONTEXT BUT WE
THINK THERE ARE WAYS TO PIVOT
THAT TO THINKING ABOUT INFORM
CONSENT PROCESS AND THOSE
QUESTIONS I THINK BY AND LARGE
WOULD COME FROM PREVIOUS
PARTICIPANTS. NOW IT IS A MOVING
THING. SO WE ARE GOING TO --
AREAS, THE DEVICE IS GOING TO BE
DIFFERENT BUT THAT COULD BE
UPDATE -- IF THERE IS A --
>> A LIVING DOCUMENT, NOT A
MOVING THING BUT A LIVE
DOCUMENT.
>> SOMETHING WE CAN KEEP
UPDATING AND TO ASHLEY'S POINT
THINKING ABOUT VIDEO THAT IS
REMOVED FROM THE INDIVIDUAL
CLINICIAN RESEARCHER, THAT
CONTAINS INFORMATION THAT MIGHT
HAVE TO BE SLIGHTLY ADJUSTED IF
IT IS ABOUT A VISUAL PROSTHETIC
VERSUS A MOTOR -- BECAUSE THE
EXPERIENCE IS --
>> THAT IS WHY TREATING THIS AS
BEST PRACTICE, NOT AS A SET OF
REGULATORY GUIDELINES IS
IMPORTANT. THE OTHER THING, LET
ME JUST SAY IS, I'M WARY OF
INCLUDING THIS IN INFORMED
CONSENT BECAUSE I GOT THE SENSE
FROM YOUR DISCUSSION OF YOUR
EMPIRICAL WORK THAT PEOPLE MAY
HAVE FELT THERE WAS SO MUCH
INFORMATION, OR MORE THAN THAT,
THEY COULDN'T IMAGINE WHAT THEY
WERE GETTING INTO. AND IT SOUNDS
LIKE THERE SHOULD BE SOME
WRITTEN EVIDENCE OF THIS FOR
SUBJECTS AND THEIR FAMILIES.
>> WRITTEN EVIDENCE WOULD BE
GOOD. . FOR THE COMING INTO IT.
I THINK WE -- INTO THE STUDY, I
THINK WE ALSO THINK IT IS --
CONSENT IS AN ONGOING PROCESS,
PARTLY ONCE THE PERSON IS IN THE
STUDY MAYBE THE ONUS SHIFTS TO
THE RESEARCHER TO BE ASKING
CERTAIN KINDS OF QUESTIONS ABOUT
SENSE OF AGENCY, THEIR FELT
RECOGNITION, DO YOU FEEL HOW ARE
THINGS GOING CHECK IN, BACK TO
ASHLEY'S CONCERN ABOUT CLINICIAN
RESEARCHER MIGHT NEED TO BE
SOMEBODY WHO IS A LITTLE
INDEPENDENT BECAUSE WE ALL KNOW
E MORE VULNERABLE IN THE
POSITION RESEARCH YOU DON'T WANT
TO BE THE SQUEAKY WHEEL.
>> IRBs INONGOING INFORMED
CONSENT IS A PROCESS, NOT A LOT,
MAYBE ZERO.
>> IT IS OFTEN A IDEAL WE ASPIRE
TO AND MAYBE DON'T PUT INTO
PRACTICE WELL ENOUGH. IT TENDS
TO BE EPISODIC. RATHER THAN
ONGOING.
>> SAMIR. I WAS GOING TO CALL ON
YOU BEFORE BUT THEN YOU
DISAPPEARED. LOOKS LIKE YOU HAD
SURGERY.
>> I DID I (INAUDIBLE) IN THE
DISCUSSION BUT THIS WILL BE
SHORT. THANKS SO MUCH REALLY
INTERESTING. WONDERING I WAS
INTERESTED IN WHAT THE
PARTICIPANT WHO IS TALKING ABOUT
THIS RELATIVE MAGNITUDE OF
DOLLARS SPENT, PROJECT OVERALL
GIVEN $50 PARKING PERHAPS. AND
TIMES WHAT WE DISCUSS IN THIS
GROUP THERE IS THE LAST TIME WE
MET HOW MUCH IS ENOUGH, TOO
MUCH, SHOULD THERE BE ANY, NONE,
COMPENSATION WISE FOR THESE
PARTICIPANTS IN PARTICULAR FOR
THESE BCI STUDIES. I WONDER IF
THAT CONVERSATION WENT FURTHER
AND WHETHER THE PARTICIPANT HAD
IDEAS OR SUGGESTIONS, YOU GAVE
THEM A TON OF MONEY AND IT IS
UNDUE INFLUENCE, DID THEY HAVE
ANY SUGGESTIONS FOR WHAT THEY
THOUGHT WOULD BE THE APPROPRIATE
BALANCE?
>> NO, I WILL SAY ABOUT THIS
ONE, UNFORTUNATELY NOT -- I
THINK OUR INTERVIEWER WAS MOVED
BY HOW VEHEMENTLY ABOUT HOW HE
SPOKE ABOUT IT, IT WAS A LITTLE
SURPRISED. ONE THING BACK TO
INTERVIEW OR PLAN IS TO
INTERVIEW THEM MULTIPLE TIMES SO
WE CAN ADD THOSE THINGS IN AS WE
GO. KEY QUESTION. IT IS
SOMETHING THIS WHOLE GROUP
SHOULD BE TALKING ABOUT.
>> I HOPE WE CAN DISCUSS IT MORE
AT THE PANEL DISCUSSION. KAREN
DID YOU TAKE YOUR NAME, -- HAND
DOWN. OKAY. SHOULD WE MOVE TO
THE PANEL THEN? DID YOU WANT THE
SAY SOMETHING KAREN? PANEL.
OKAY.
>> THANK YOU. SO I WOULD LIKE TO
INVITE MR. JOHNSON AND DR.
ZAGHLOUL TO JOIN US FOR THE
PANEL, I WILL INTRODUCE THEM AND
THEY CAN MAYBE SAY A WORD OR
TWO. SO MR. JAMES JOHNSON, THANK
YOU FOR BEING WITH US TODAY. IS
A PATIENT PARTICIPANT IN
RESEARCH STUDIES CONDUCTED AT
THE TNC BRAIN MACHINE INTERFACE
CENTER LED BY RICHARD ANDERSON
AT CAL TECH. OVER THE LAST THREE
YEARS, HE'S BEEN A LONG TERM
ACTIVE PARTICIPANT IN STUDIES
INVESTIGATING MOTOR ACTIVITY AND
MOTOR PLANNING ACTIVITY TO
UNDERSTAND HOW BRAIN PROCESS IT
IS WORLD. THANK YOU FOR JOINING
US, MR. JOHNSON. DR. KAREEM
ZAGHLOUL IS A SENIOR
INVESTIGATOR OF FUNCTIONAL
RESTORATIVE NEUROSURGEON SECTION
AT THE NINDS INTRAMURAL PROGRAM
AT THE NIH. HIS LAB FOCUSES ON
NEURAL MECHANISMS UNDERLYING
HUMAN COGNITIVE FUNCTION, DR.S
ZAGHLOUL RECEIVED HIS M.D. AND
Ph.D. DEGREES FROM THE
UNIVERSITY OF PENNSYLVANIA
COMPLETED A RESIDENCY IN
NEUROSURGERY AT PENN AND
COMPLETED CLINICAL FELLOWSHIP IN
EPILEPSY SURGERY AND DBS
SURGERY. THANK YOU SO MUCH FOR
JOINING US TODAY. I WANTED TO
START BY ASKING MR. JOHNSON IF
YOU WOULD LIKE TO SAY A FEW
WORDS OF INTRODUCTION BECAUSE
OUR OTHER TWO SPEAKERS OF DR.
GOERING AND FEINSINGER HAD A
CHANCE TO SPEAK SO I WILL LET
DR. JOHNSON AND ZAGHLOUL SAY A
FEW WORDS AND SEE IF ANYONE
WOULD LIKE THE ASK QUESTIONS AND
BEGIN THE DIALOGUE.
MR. JOHNSON, WOULD YOU LIKE TO
START?
>> WE CAN HEAR YOU FINE. THANK
YOU.
>> MY NAME IS JAMES, AND ACTIVE
PARTICIPANT IN THE STUDY BMI,
BRAIN MACHINE INTERFACE. MY
BACKGROUND IS RESPIRATORY
THERAPISTS AND I WAS INJURED IN
A ROLL OVER ACCIDENT IN 2017. I
WAS WENT THROUGH A LOT OF
THERAPY AND TOWARDS THE HINT IF
I STAY AT REHAB FACILITY, I WAS
APPROACHED BY ONE OF THE
PHYSICAL THERAPISTS WHO HAPPENED
TO BE COORDINATOR FOR
TECHNOLOGIES THAT INJURED
PATIENTS COULD USE, TO GET ALONG
IN THE WORLD. AND SHE ASKED IF I
WOULD BE INTERESTED IN
PARTICIPATING AT STUDY. KNOW
MUCH ABOUT STUDIES SO I ASK
INFORMATION ON -- ABLE TO
INTRODUCE ME TO TEAM AT CAL TECH
WORKING WITH DR. RICHARD
ANDERSON. BASICALLY TOLD ME
ABOUT STUDY, WHAT IT INVOLVED.
AND VERY MUCH WAS INTERESTED IN
THE STUDY BECAUSE AS A
RESPIRATORY THERAPIST, RN, I
WORKED IN NEUROLOGY DEPARTMENT.
SO I WAS MADE AWARE OF SOME
THINGS THAT ARE BEING DONE WITH
PATIENT WHO GOT INJURIES. SO I
THOUGHT WHY NOT. IT WOULD BE A
GREAT WAY FOR WHOM? TO
CONTRIBUTE STILL NOT ONLY AS
WHICH I IN ADDITION BUT AS
REGULAR JOE.
>> GREAT. WONDERFUL. AS WE GET
INTO THE DISCUSSION I WOULD LOVE
TO HEAR HOW SOME OF SARA'S
FINDINGS RESONATED WITH YOU IN
YOUR EXPERIENCE. DR. ZAGHLOUL
TELL US ABOUT YOUR PERSPECTIVE
HERE.
>> SURE. FIRST I WANT TO THANK
YOU GUYS FOR PUTTING THISSING TO
AND THIS HAS BEEN WONDERFUL SO
FAR AND REALLY GREAT. GREAT
TALKS AND IMPORTANT TOPIC. I
KNEW ABOUT ASHLEY'S PAPER BUT
SARA YOUR STUDY WAS QUITE
FASCINATING TO HEAR JUST THAT
PERSPECTIVE. SO JUST GIVE YOU A
SENSE OF WHO I AM, I'M A
NEUROSURGEON IN THE NIH
INTRAMURAL PROGRAM OF THE NIH
MOST OF MY SORT OF INVOLVEMENT
IN THIS PARTICULAR AREA REVOLVES
AROUND PATIENTS WHO ARE GETTING
INTRACRANIAL ELECTRODES AROUND
SEE INSURE MONITORS PATIENTS
WITH EPILEPSY AND OUR RESEARCH
THIS IS ONE OF THE FOUR
DIFFERENT AREAS THAT I THINK
ASHLEY MENTIONED OUR RESEARCH
WAS SPECIFICALLY ON
INVESTIGATING NEURAL SIGNALS WE
CAPTURE FROM ELECTRODES WHILE
PATIENTS ARE HERE IN THE
MONITORING PERIOD SO STANDARD
CLINICAL CARE TO ADDRESS
QUESTIONS WE THINK MIGHT BE
IMPORTANT FROM NEUROSCIENCE. SO
WE THINK ABOUT ISSUES QUITE A
BIT, WE HAVE NOT BEEN HEAVILY
INVOLVED IN BCI TECH BOARD BUT
WE HAVE TALK ABOUT AND THINK
ABOUT THOSE ISSUES AS WELL. WE
THINK THESE THINGS ARE VERY
IMPORTANT ISSUES AND I THINK
REALLY THE MAIN EMPHASIS WE TRY
TO AT LEAST CARRY WITH US
THROUGHOUT OUR WORK IS PUTTING
THE CLINICAL CARE AND PATIENT
FIRST. EVERYTHING ELSE BECOMES
SECONDARY TO THAT. SO WE TRY AS
MUCH AS POSSIBLE TO REVISIT
THOSE QUESTIONS OVER AND OVER
AGAIN FOR EVERY PATIENT IN TERMS
OF WHO WE ARE.
>> THANK YOU SO MUCH AND THANKS
FOR BEING WITH US. SO I WOULD
LIKE TO INVITE ANYONE TO RAISE
THEIR HAND AND TO BEGIN TO RAISE
QUESTIONS THERE WAS FODDER FOR
DISCUSSION THAT BOTH ASHLEY AND
SARA GAVE US AND I KNOW WE HAVE
SOME GENERAL QUESTIONS THAT I'M
GOING TO ASK NINA TO MAKE SURE
THEY GET PUT UP SO PEOPLE CAN
SEE THEM, GENERAL QUESTIONS THAT
MIGHT GUIDE OUR DISCUSSION BUT
WE DON'T HAVE TO STICK TO THOSE.
SO OF COURSE ONE GENERAL
QUESTION IS, DID -- IS ANYTHING
BEING MISSED? WE HAVE ALREADY
TALKED ABOUT A WHOLE BUNCH OF
ISSUES BOTH IN INTRACRANIAL
INTEROPERATIVE RESEARCH AND ALSO
IN THE BCI INTERACTIVE LONG TERM
STUDIES, DID WE MISS ANY ISSUES
ARE THERE ISSUES THE REST OF YOU
THINK OR THOSE WHO SPOKE THINK
WE DIDN'T -- WE HAVEN'T HEARD
THAT.
>> CAN I JUST TOUCH ON SOMETHING
--
>> PLEASE.
>> SARA MENTIONED. WITH REGARDS
TO COMPENSATION FOR PARTICIPANTS
I REALLY DO FOR NEW PERSON,
DIDN'T GET INTO THE STUDY FOR
ANY TYPE OF COMPENSATION, SO
THAT WAS JUST ADDED PLUS MONEY,
REALLY FOR ME IT WAS MORE ALONG
THE LINES OF WHAT CAN I DO ABOUT
THE PLACE I'M IN HOW CAN I BE
SOMEONE WHO HAS WORK OR VALUE,
ESPECIALLY HAVING A CAREER SUCH
AS MINE IN MEDICAL FIELD AND
UNDERSTANDING WHAT COMES NEXT
FROM THE BEGINNING OF THE INJURY
ALL THE WAY UP UNTIL NOW EVEN, I
UNDERSTOOD EVERY STEP COMING TO
-- EVERY STEP OF THE WAY. WHEN
THAT QUESTION WAS PRESENTED TO
ME WHETHER OR NOT I WOULD BE
INTERESTED IN A STUDY, I TOOK IT
AS MY OPPORTUNITY TO CONTINUE TO
CONTRIBUTE TO MEDICINE IN
GENERAL AND TO THE WELL BEING OF
PEOPLE OTHER THAN MYSELF WHO
GOING THROUGH SIMILAR CRISES. SO
AS FAR AS COMPENSATION THAT IS
GREAT, I UNDERSTAND WHAT THAT
PARTICULAR PERSON WAS TALKING
ABOUT IN TERMS OF MULTI-MILLION
DOLLAR PROJECTS AND SEEMS WHAT
AMOUNTS TO BE PENNIES ON THE
DOLLAR THAT THE PARTICIPANTS ARE
GETTING. AND I GET THAT VERY
MUCH. BUT FOR ME PERSONALLY LIKE
I SAID, IT WAS MORE ALONG THE
LINES OF WHAT CAN I DO IN MY
STATE OF ME HOW CAN I CONTRIBUTE
LIKE I WAS CONTRIBUTING BEFORE
OR GRATIFYING LEVEL. I FIND
RESEARCH TO BE HAPPENING FOR ME.
>> THANK YOU SO MUCH FOR THAT
COMMENT. I WANT TO ASK YOU
FOLLOW-UP QUESTION AN MAYBE SARA
HAS SOME THINGS TO SAY ABOUT
THIS. I THINK A LOT OF PEOPLE
FEEL LIKE THEY ARE -- AND THEY
ARE, MAKING A HUGE CONTRIBUTION
TO SCIENCE BY PARTICIPATING IN
STUDIES OF THIS NATURE. I WONDER
ABOUT THE -- AN COMPENSATION IS
A PART OF IT BUT SARA MENTIONED
SOMETHING BIGGER THAN
COMPENSATION. I THINK YOU
CALLED IT FAIR RECIPROCITY WHICH
INCLUDED RECOGNITION,
RECOGNITION OF YOUR
CONTRIBUTION. MR. JOHNSON HOW
IMPORTANT IS THAT?
>> VERY IMPORTANT BECAUSE
EVERYBODY WANTS TO BE RECOGNIZED
FOR WHAT THEY DO. THAT IS JUST
WHO WE ARE AS HUMAN BEINGS. WHAT
I APPRECIATED FROM DR.
ANDERSON'S TEAM WAS THAT WAS
ACTUALLY INCLUDED AND CONTRACT
DID I WANT TO BE RECOGNIZED FOR
MY CONTRIBUTION ANY STUDIES OR
PAPERS OR OR IF THERE ARE ANY
JOURNALS OR ANYTHING OF THE
NATURE, THEN I WANT TO BE
RECOGNIZED, I SAID ABSOLUTELY
YES AND I FEEL THAT ANYBODY MANY
MY SITUATION WOULD WANT TO BE
RECOGNIZED. YEAH.
>> GREAT. SARA OR OTHERS ANYONE
SAY ANYTHING ABOUT THAT?
>> I SO APPRECIATE WHAT YOU ARE
SAYING, JAMES. AND I THINK
SOMEBODY ELSE THAT WE TALK TO
INTERESTING THE PRONOUNS. WE
PUBLISHED A PAPER WE DID THIS
BECAUSE SHE FELT LIKE SHE WAS
PART OF THAT TEAM, RECOGNIZED AS
A EQUALLY CONTRIBUTING MEMBER
WHO HAD DONE SOMETHING REALLY
IMPORTANT IN THE WORLD. I GUESS
I THINK ONE OF THE CONCERNS
WOULD BE HOW WE MAKE SURE HA
THAT KIND OF RELATIONSHIP IS
ALWAYS GOING TO BE PART OF THE
BAY, ESPECIALLY FOR THESE LONG
TERM VERY INTENSIVE HIGHLY
INTERACTIVE STUDIES THAT IT IS
ALWAYS THERE. I GUESS ON THE
COMPENSATION QUESTION I DO THINK
PEOPLE ARE GOING TO BE
DIFFERENTLY POSITIONED RELATIVE
TO THIS. ONE OF THE THINGS THAT
COMES TO MIND I WAS HAVING THIS
CONVERSATION WITH THE PAST GRAD
WHO HAS BEEN ADJUNCTS TEACHING
AND APPARENTLY OUR INSTITUTION
HAS MADE A RULE THAT YOU ARE NOT
ALLOWED TO TEACH FOR FREE. SHE
WANTS TO TEACH FOR FREE BECAUSE
SHE HAS A RELATIONSHIP WITH
CERTAIN STUDENTS THAT WANT
INDEPENDENT STUDY IN HER AREA OF
EXPERTISE. BUT I UNDERSTAND THE
UNIVERSITY POSITION AS WELL,
THERE IS A KIND OF EXPLOITATION
THAT GOES ON EVEN IF YOU HAVE
VOLUNTEERS WHO ARE WILLING TO DO
THAT. SO I WANT TO RECOGNIZE
INCREDIBLE VALUE OF DOING
SOMETHING FOR THE SAKE OF
MEANINGFUL PARTICIPATION AND
FEELING LIKE YOU ARE MAKING A
DIFFERENCE. THAT SHOULD NEVER BE
-- I DON'T WANT IT TO BE JUST A
JOKE. BUT I ALSO THINK THERE IS
A WAY WHICH FAIR COMPENSATION
FOR THE TIME IS PROBABLY
SOMETHING WE SHOULD TALK ABOUT
BECAUSE OF INTERACTIVITY AND
EXTENT OF IT IT FEELS MUCH MORE
LIKE A KIND OF PART TIME JOB
THAN OTHER CLINICAL STUDIES.
>> THREE HANDS. GO I A HEAD,
JAMES, DID YOU WANT TO RESPOND?
>> WHAT I HAVE TO SAY TO THAT IS
EVERYONE IS COMING FOR A
DIFFERENT -- I GUESS FINANCIAL
SITUATION WOULD BE UNFORTUNATE
ALL THE THINGS I DO OR I PAID
FOR BY MY CAREER NOW AS A
BUSINESS OWNER. I CAN UNDERSTAND
HOW OTHERS WOULD FEEL THAT WAY,
BECAUSE PARTICIPATING IN THESE
STUDIES IS EXTREMELY TAXING ON
THE PARTICIPANTS. LITERALLY WHEN
I LEAVE A SESSION, I JUST WANT
TO SLEEP. I JUST WANT TO HIT THE
BED. IT IS LIKE EXERCISING A
MUSCLE THAT HASN'T WORKED OUT IN
MONTHS. I THINK YOU GO BACK TO
THE GYM -- AND THEN YOU GO BACK
TO THE GYM. YOU HAVE TO BUILD UP
YOUR STAMINA WITH EACH SESSION
TO THE POINT WHERE YOU CAN
ACTUALLY DO TASKS WITHOUT IT
BEING SO DIFFICULT WHILE DOING
SOMETHING SO DRAINING. I GET
THAT, IT IS HARD -- IT IS
DIFFICULT SOMETIMES BECAUSE WE
DO RELY ON -- HEAVILY ON OUR
CAREGIVERS. AND WE DO HAVE TO
COMPENSATE OUR CAREGIVERS. FOR
THEIR TIME. AND FOR US TO -- THE
STUDIES. FOR ME PERSONALLY, PUT
IT THIS WAY WAY. WE HAVE BEEN DOING
THIS FOR THREE YEARS PLUS NOW
AND THERE ARE THINGS THAT WE
DISCOVERED WHILE DOING THIS IS
JUST ABSOLUTELY AMAZING. I WANT
VERY MUCH TO BE PART OF THAT.
ONE EXAMPLE IS THEY WANT TO SEE
HOW I WOULD BE ABLE TO MANAGE
CONTROLS, AND SAY LIKE A VIDEO
GAME. ASKING WHAT KIND OF VIDEO
GAMES DO YOU LIKE. I SAID WELL,
I LIKE FIRST PERSON SHOOTER
GAMES LIKE CALL OF DUTY AND
THOSE TYPE OF TITLES, RIGHT? SO
THEY WERE ABLE TO GET IN THE
GAME THAT WAS -- THAT HAD AN
OPEN SOURCE CODE TO WHERE THEY
COULD WRITE CODE THAT I WOULD BE
ABLE TO USE IN MY THOUGHTS. SO I
LITERALLY BLAME VIDEO GAME LIKE
CALL OF DUTY FIRST PERSON
SHOOTER, JUST BY COMPLETELY
CONTROLLING THAT WITH MY
THOUGHTS. AND THOSE GAMES ARE
PRETTY INTENSE, THEY ARE VERY
INTRICATE WITH THE GRAPHICS AND
MOVEMENT AND CONTROL, IF ANYONE
HERE HAS EVER PLAYED THOSE
GAMES. SO THE FACT THAT I'M ABLE
TO IMAGINE I'M HOLDING A
PLAYSTATION CONTROLLER IN MY
HAND AND THEN THE COMPUTER IS
ABLE TO DIFFERENTIATE WHICH
NEURAL PATHWAYS ARE BEING USED,
IN MY THOUGHTS OR IN MY BRAIN TO
ALLOW ME TO MAKE THAT -- USE
THOSE CONTROLS. HERE IS ANOTHER
THING. I DON'T KNOW IF I'M
ALLOWED TO SAY THIS, BUT A
PARTICULAR MOTOR COMPANY, CAR
COMPANY, APPROACHED THE PROJECT
AND THEY ARE INTERESTED IN
HAVING ME DRIVE A VEHICLE,
GETTING MY THOUGHTS THEY WERE
ABLE THE SEE HOW WELL MY CONTROL
WAS IN THE GAMING ENVIRONMENT SO
THEY DEVELOPED A SIMULATOR AND
SENT IT DOWN TO THE LAB AND I
WAS ABLE TO CONTROL THE CAR,
CONTROL THE VEHICLE AND
SIMULATOR AS WELL. DURING OUR
FIRST STAGES THREE YEARS IS NOT
A LOT OF TIME, BUT IN THAT THREE
YEARS WE HAVE ACCOMPLISHED A
LOT. I SAID WE OFTEN BECAUSE
THEY REALLY DO MAKE ME FEEL LIKE
I AM PART OF THAT TEAM. THAT IS
EVERYTHING TO ME.
>> GREAT. THANK YOU. I SEE
WINSTON AND THEN SAMIR.
>> PERSONALLY I WANT TO SAY
HAVING THIS PERSPECTIVE OF
RESEARCH PARTICIPATION HERE IS
REALLY WONDERFUL AND GREAT TO
HEAR, JUST DIRECT EXPERIENCE. I
WANTED TO GO BACK, I WAS
THINKING ABOUT THE RELATIONSHIP
BETWEEN ASHLEY AND SARA'S
DISCUSSIONS. IN OUR WORK WE HAVE
A DISTINCT THAT MIGHT BE HELPFUL
BECAUSE IT SEEMS LIKE THERE'S
CERTAIN CONSIDERATIONS APPLIED
TO THE STUDIES ASHLEY WAS
DISCUSSING THAT DON'T APPLY TO
SOME OF THE STUDIES SARA IS
DISCUSSING VICE VERSA. IN SOME
OF OUR WORK WE DISTINGUISH
BETWEEN OPPORTUNITIES STUDIES
WHERE SOMEBODY IS RECEIVING
NEUROSURGERY FOR CLINICAL
INDICATION, THEN THERE IS AN
OPPORTUNITY TO USE MORE BASIC
NEUROSCIENCE IN THE COURSE OF
PROCEDURE OR USING DEVICE
IMPLANTED FOR CLINICAL
INDICATION, FOR ESTABLISHED
CLINICAL INDICATION AND
DISTINGUISHING THOSE FROM
STUDIES WHICH THE NEUROSURGERY
IS OPTIONAL FROM A CLINICAL
POINT OF VIEW AND IT IS DONE FOR
THE SAKE OF DOING WHAT IS IN
MANY CASES LONG TERM RESEARCH
STUDY. SO I'M OFFERING THIS
DISTINCT WE WORKED ON, I'M
WONDERING WHO MIGHT BE USEFUL
HERE BECAUSE CONCERNS ASHLEY
RAISED H NEAR PAPER IN THE GROUP
PAPER ABOUT PRESERVING THE
INTEGRITY OF CLINICAL SPACE OR
PARTICULAR CONCERNS ABOUT
VOLUNTARINESS ARE ESPECIALLY
HUGE WHEN PATIENT PRESENTING FOR
INDICATED NEUROSURGICAL
PROCEDURE AND SOMEBODY IS
OFFERING TO IN ADDITION CONDUCT
BASIC NEUROSCIENTIFIC RESEARCH
AS A COURSE. AND THOSE KINDS OF
CONSIDERATIONS COME UP A LITTLE
BIT DIFFERENTLY LIKE SARA WAS
DISCUSSING IN CASE OF PATIENT
WHO MADE THE DECISION TO SIGN UP
ENTIRELY VOLUNTARY WAY FOR BRAIN
SURGERY, THEIR FAMILY WAS A
LITTLE SKEPTICAL ABOUT.
PRECISELY BECAUSE IT WASN'T A
CLINICALLY INDICATED SURGERY.
SIMILARLY SOME OF THE CONCERNS
RELATED TO COMPENSATION OR
ACCESS TO DEVICE AFTER TRIAL
THOSE DON'T COME UP IN THE SAME
WAY FOR THESE KINDS OF BASIC
SCIENCE OPPORTUNITY STUDIES
WHERE IT IS NOT NECESSARILY
SOMETHING PEOPLE ARE USING.
JUST A POINT THAT OCCURRED IN
TERMS OF PLACES WHERE
CONSIDERINGS ARE A LITTLE BIT
DIFFERENT AND DON'T HAVE TO USE
MY DISTINCT WE CAN COME UP WITH
A DIFFERENCE WORD, BUT THESE
DIFFERENT RESEARCH SETTINGS THAT
SOME WAYS RAISE THE DIFFERENT
KINDS OF CONCERNS.
>> HELP. , WINSTON. ONE
QUESTION BEFORE I TURN TO SAMIR.
IS THERE EVER COMPENSATION IN
INTRACRANIAL -- THE ONES THAT
ARE DONE IN THE MIDDLE OF A
CLINICAL SITUATION?
>> I THINK THERE ARE ONES THAT
SHARE SOME FEATURES OF BOTH. A
LOT OF ONES THAT ARE DONE MANY
THE CLINICAL SETTING ARE VERY
SHORT TERM SO IT IS JUST IN --
WHEN SOMEBODY IS IN THE
OPERATING ROOM OR EPILEPSY
MONITORING UNIT ASHLEY MENTIONED
VERY INTERESTING STUDIES THAT
ARE BEING DONE WITH THE
NEUROPIECE DEVICE WHERE PEOPLE
ARE IMPLANTED WITH CLINICALLY
INDICATED DEVICE FOR EPILEPSY
BUT BECAUSE THIS DEVICE IS THERE
BECOMES AN OPPORTUNITY FOR
LONGER TERM STUDIES. SO IT HAS
SOME OF THE FEATURES THAT SARA
WAS TALKING ABOUT IN TERMS OF
THE DEVICES IMPLANTED FOR
CLINICAL INDICATION BUT SOMEBODY
MIGHT BE COMING AT LAB MULTIPLE
TIMES A WEEK, IN LONG TERM
BASIS. SO IT DOES HAVE THAT
LONGER TERM COMPONENT COMPONENT. I DON'T
KNOW THE DETAILS OF THAT STUDY,
BUT THAT WOULD BE AN EXAMPLE OF
AGAIN DEVICE IMPLANTED FOR
CLINICAL INDICATION THAT
PROVIDES OPPORTUNITY TO ASK
RESEARCH QUESTIONS THAT ARE IN
MANY CASES COMPLETELY
INDEPENDENT OF THE CLINICAL
REASON IMPLANTING DEVICE.
>> SORRY I WANT TO JUMP IN, I
REALLY LIKE THE OPPORTUNITY AND
BUNS THAT ARE ADDITIONAL, AND
WONDER IF WE CAN THINK THE SAME
FOR VISITS. IF YOU ARE HERE IN
THE MONITORING UNIT WE ARE HERE
FOR CLINICAL INDICATION AND
STAYING THAT PERIOD OF TIME FOR
CLINICAL REASONS WHEREAS RNS OR
DEVICE, PLACE FOR CLINICAL
INDICATION MAYBE COMING BACK FOR
RESEARCH VISITS THAT ARE EXTRA
SO MAYBE WE SHOULD ALSO THAT
DISTINCT NOT JUST TO THE IMPLANT
OR THE DEVICE BUT ALSO TO THE
VISITS THEMSELVES.
>> GREAT DISTINCTION.
>> FOLKS RESPONDED TO THE LAST
ONE, THE QUESTIONING HAD -- I
THINK IT IS UNCOMMON FOR
RESEARCH THAT HAPPENS IN THE OR
DURING DBI OR TO BE COMPENSATED
OUR IRB DOESN'T DO THAT. I THINK
IT IS UNCOMMON BUT THE DISTINCT
WHERE SPECIFICALLY FOR RESEARCH
THAT ARE NOT PART OF CLINICAL
CARE THOSE OFTEN ARE, SO I USE
THE EMU FOR TRIAL, DOING
PATIENTS WITH DEPRESSION, THEY
ARE ONLY THERE FOR THE TRIAL
THEY GET PAID FOR VISIT AND EMU
STATES, LONGER THEY GET PAID
MORE. SO THAT DISTINCT WORKS
WELL FOR THAT. MY QUESTION OR
I'M NOT QUESTION BUT I GUESS
COMMENT IS FROM A COUPLE TRENDS
AGO ON THIS ISSUE OF
RECOGNITIONRECOGNITION. THAT MENTIONED AND
WE CAN CHAT ABOUT. THANK YOU FOR
YOUR PARTICIPATION. SOMEONE NOT
INVOLVED IN THAT RESEARCH AT ALL
AND I KNOW AND RESPECT THE WORK
AND I THINK IT IS WONDERFUL THAT
YOU AND FOLKS LIKE YOU ARE
INTERESTED PARTICIPATING SO THAT
WE CAN ALL LEARN. AS AN
INTERESTED BYSTANDER I THANK
YOU.
>> ISSUE OF RECOGNITION IS
IMPORTANT ONE AND CUTS BOTH
WAYS. AS YOU SAID AS WE DICES
CUD-- THEOTHER SIDE IS WE HAVE TO BE
CAREFUL WITH HOW WE PORTRAY IT
TO POTENTIAL PARTICIPANTS. SO I
WONDER HOW IF WE TAKE IT BACK TO
THE POINT OF TALKING TO A
POTENTIAL CANDIDATE FOR BCI
STUDY OR INPATIENT EPILEPSY
STUDY, WE HAVE TO BE CAREFUL
ABOUT WHAT WE TALK A BIT ABOUT
AS BENEFITS OF PARTICIPATING IN
THE STUDY. HOW DOES ONE TALK
ABOUT RECOGNITION WITHOUT
HIGHLIGHTING OR UNDERSCORING TOO
MUCH TO MAKE IT SOUND LIKE A
BENEFIT THAT COULD BE AGAIN SORT
OF GIVEN MORE WAY OR BEING USED
IN A WAY TO INFLUENCE BEYOND
WHAT IS APPROPRIATE.
COMPENSATION IS ONE THING,
RECOGNITION IN GENERAL IN TERMS
OF SO AND SO PARTICIPATED IN
THIS STUDY. I THINK TOO MUCH AND
IT COULD BE INAPPROPRIATE, TOO
LITTLE AND PARTICIPANT FEELS
USED. AS WE HEARD BOTH WAYS.
IT IS CHALLENGE BECAUSE EVERYONE
HAS EVERY INDIVIDUAL PERSON HAS
DIFFERENT LINE WHERE THAT
TRANSITION MIGHT OCCUR. AND I
THINK THAT IS WHAT MAKES IT
CHALLENGING. I WONDER IF ONE
SOLUTION IS TO FOR ANY
INDIVIDUAL WHO IS BEING
CONSIDERED FOR ENROLLMENT IN
THESE STUDIES TO TRY TO BROADEN
THEIR OWN UNDERSTANDING OF THIS
WORLD OUT THERE, ALL THE PEOPLE
ON THE ZOOM BOXES, ALL THE
PARTICIPANTS WHO HAVE BEEN IN
THESE STUDIES TO LET THEM KNOW
THEY ARE PART OF THIS ECOSYSTEM,
OF CLINICIANS AND SCIENTIST,
PARTICIPANTS, AND LET THEM KNOW
THERE'S DIFFERENT PERSPECTIVES
THAT EACH OF THESE PEOPLE HAVE
INDIVIDUALLY. T IT GETS BACK TO
QUESTION OF THIS VIDEO, HOW
SPECIFIC OR GENERAL CAN IT BE.
WE DISCUSS THIS IN THE ROH
MEETINGS AND THE IDEA BEEN TO
CREATE A FEW RADIOS, ONE FOR
PEOPLE THAT PARTICIPATE IN BCI
LIKE THINGS WHERE SURGERY IS
JUST FOR RESEARCH AND HAVING MET
MULTIPLE BUSINESS VERSUS ANOTHER
ONE WHERE SURGERIES IN CLINICAL
AND YOU SEE IN EMU AND
PARTICIPATE IN THESE STUDIES.
BUT FOR THEM TO BE ABLE TO
UNDERSTAND THAT THEY ARE NOT THE
ONLY PERSON AND WILL SAY THIS
HAS BEEN GOING ON AND HOW LONG
BUT THEM TO KNOW THEY ARE NOT
THE ONLY ONE, ALL OF THIS HAS
GONE ON BEFORE AND CONTINUE
AFTER, -- SORRY. PAUSE. FOR
THE AUDIO. BUT TO LET THEM KNOW
THEY ARE PART OF THIS CONTINUUM
THAT HAS PRODUCED THIS -- THESE
RESULTS BEFORE AND WILL CONTINUE
PRODUCING RESULTS IN THE FUTURE.
MAYBE THAT COULD DO IT IN SOME
GENITAL APPROPRIATE WAY THEY
KNOW PART OF THE FAMILY THIS
ECOSYSTEM OF PARTICIPANTS, TO
GIVE THEM THE OPPORTUNITY TO
DECLINE IF THEY WOULD LIKE TO
BUT IF THEY PARTICIPATE THANE
THEY ARE PART OF A BIGGER
PROJECT. AND THAT MAYBE A WAY
TO PROVIDE THEM WITH THE BROAD
UNDERSTANDING THAT -- BUT STILL
APPROPRIATE IN TERMS OF NOT
BEING UNDULY INFLUENTIAL.
>> GREAT. THANK YOU. I SEE FIVE
HANDS UP. ASHLEY FIRST.
>> I WANTED TO RESPOND TO SOME
OF THE THINGS THAT SAMEER WAS
SAYING. I WANT TO -- MAYBE THIS
WILL COMPLICATE THINGS MORE BUT
PHILOSOPHERS LIKE TO DO THIS. IN
A DIFFERENT PROJECT THAN I'M
PART OF WE HAVE BEEN TALKING
WITH ORGAN DONORS AND GRAPPLING
WITH THIS CHALLENGE OF HOW TO
ENHANCE INFORMED CONSENT FOR
PEOPLE WHO WANT TO DONATED
ORGANS AND THINKING HOW THAT
EXPERIENCE IS TRANSFORMATIVE, A
LOT OF PEOPLE SAY THEY DON'T
REALLY KNOW WHAT IT WOULD BE
LIKE TO GIVE A EVERYBODY TO
SOMEONE ELSE AND SAVE HAIR LIFE
SO WHAT THEY HAVE DONE IS MADE A
REPOSITORY OF STORIES THEY HAVE
COLLECTED FROM POTENTIAL DONORS
RECIPIENTS, PEOPLE WHO HAVE DONE
IT. AND OFFERED IT AS A KIND OF
PROPOSE IT AS A RESOURCE FOR
PATIENTS BUT NOT PUT FORWARD OR
PLUCKED ANY PARTICULAR
NARRATIVES TO OFFER WITH ANY
PARTICULAR VALENCE. THAT HAS ITS
OWN SET OF CHALLENGES SO RAISES
HOST OF OTHER CONCERNS. YOU WILL
GET THE STORIES THAT PEOPLE WANT
TO SHARE. I THINK SOME OF THE
STUFF WE ARE TALKING ABOUT TODAY
GRAPPLING WITH THESE QUESTIONS.
SO HOW DO WE -- IT NOT ONLY
MATTER WHAT IS IS IN THOSE
STORIES BUT WHO IS PUTTING
FORWARD AND WHAT REASON SO YOU
CAN PUT FORWARD THE SAME SET OF
EXPERIENCES BUT THERE WOULD BE A
DIFFERENT INTENTION BEHIND
OFFERING THOSE STORIES AND I
THINK THE APPROPRIATE USE IN A
WAY THAT RESPONDS TO PATIENT
RECOGNIZES THE PARTICIPANTS AS
PEOPLE WITH INTEREST AND STAKE
AND DESIRE TO PARTICIPATE BUT
ALSO CAREFUL ABOUT WHETHER THAT
IS BEING USED IN BAYS THAT ARE
RAISING QUESTIONS ABOUT
INFLUENCE AS SAMEER SUGGESTED SO
I WANTED TO THROW MORE
COMPLICATION OUT THERE.
>> NICE TO HEAR ABOUT THE
REPOSITORY. HANK.
>> LAWYERS LIKE ADDING
COMPLICATIONS TOO. I'M NOT SURE
IF THIS IS REALLY ADDING
COMPLICATION BUT IT OCCURRED TO
ME TO WONDER LISTENING TO THIS,
HOW BROAD OR NARROW OF SCOPE OF
KINDS OF TRIALS ARE WE TALKING
ABOUT? THE FIRST PRESENTATION
WAS INTRACORTICAL WORK. BUT
THERE IS A HUGE DIFFERENCE
BETWEEN BCI RESEARCH AND SAY
PUTTING AN ECOG ON A PATIENT IN
THE HOSPITAL WAITING FOR
EPILEPTIC SEIZURE, MAYBE ONE
TIME IN THEIR LIFE EXPERIENCE,
SARA TALKED ABOUT WHAT WAS YOUR
TITLE? LONG TERM HIGHLY
INTERACTIVE STUDIES WHICH I
THINK MAYBE CAPTURE SOME OF THIS
BETTER BUT THERE WILL BE LOTS OF
VARIATIONS AND EVERYTHING BCI IS
A LONG TERM HIGHLY INTERACTIVE
STUDY, MAYBE CARRYING AROUND A
CELL PHONE AND DOING SOMETHING
ONCE OR TWICE A DAY ON THE CELL
PHONE IS A LONG TERM HIGHLY
INTERACTIVE STUDY. AND OF COURSE
THERE IS A WHOLE ISSUE THAT DOES
THIS HOW TO WHAT EXTENT THIS
EXTENDS BEYOND NEUROSCIENCE AND
NEUROSTUDIESSTUDIES. SO CURIOUS THE
PEOPLE HAVE THOUGHTS WHAT THE
CONTOUR, WHAT THE SHAPE OR SCOPE
OF KINDS OF STUDIES THAT THIS
GIVES US, THAT ARE ENCOMPASSED
IN THE LESS SONS THAT WE HAVE
BEEN TALKING ABOUT SO FAR.
>> YOU WANT TO CALL ON SOMEBODY
SPECIFICALLY TO ANSWER THAT? OR
JUST WANT GENERAL DISCUSSION?
>> I JUST PUT THAT OUT THERE.
KRISTINA, IF YOU WANTED TO
ANSWER THAT, THAT'S OKAY WITH
ME.
>> I ACTUALLY THINK WHAT WINSTON
OFFERED A WHILE AGO IS A NICE
WAY TO DICHOTOMIES, SOME ARE
OPPORTUNISTIC AND SOME ARE
OPTIONAL. IT IS NOT THE ONLY
DISTINCTION BUT A USEFUL
DISTINCTION, DR. ZAGHLOUL ADDED
TO THAT.
>> HI, DO I GET TO GO NEXT? I
THINK IT IS REALLY INTERESTING
QUESTION FROM HANK. WHEN WINSTON
WAS OFFERING THE DISTINCTION, I
THOUSAND WE HAVE THAT -- IN THE
TWO PRESENTATIONS, VERY
DIFFERENT KINDS OF THINGS. AS
PEOPLE SAID THERE'S SO MANY
THINGS IN THE MIDDLE, GROUP IS
WORKING WITH -- HERE AT UDUB ON
INTRACORTICAL DBS FOR POST
STROKE STUDY. THAT IS A RESEARCH
STUDY THAT DOESN'T REQUIRE A
NEUROSURGERY FOR THE PERSON
WOULDN'T NEED IT FOR NORMAL
REHAB POST STROKE BUT AIM IS
THERAPEUTIC IN THE WAY SPONSOR
BCI STUDIES TALK ABOUT, IT IS A
QUALITY OF LIFE ENHANCER AIM BUT
NOT THERAPEUTIC IN THE SAME
SENSE THAT WE TYPICALLY THINK OF
IT. I DO THINK AS WE EXPAND
THESE STUDY, IN DIFFERENT
DIRECTIONS, I DON'T KNOW THAT
THAT BROAD DISTINCTION IS GOING
TO CAPTURE. THINGS FULLY. BUT I
LIKE IT AS A LITTLE HANDLE TO
HOLD ON TO LEAST FOR RIGHT NOW.
I DO THINK THE INTEROPERATIVE
ONES ARE QUITE DIFFERENT.
ASHLEY'S POINTS WHICH WE HAVEN'T
TALKED ABOUT YET, ABOUT
POSSIBILITY OF REFUSAL WHEN YOU
ARE IN AN INCREDIBLY VULNERABLE
POSITION AWAKE MAYBE WITH YOUR
HEAD IN THE STEREO TACTIC FRAME.
HOW CAPABLE ARE YOU IN THAT
STATE OF REALLY UNDERSTANDING, I
WORKED WITH ANNA WEXLER ON A
STUDY OF PEOPLE DOING
INTEROPERATIVE BASIC
NEUROSCIENCE STUDIES AN PEOPLE
THAT SHE TALKED TO DIDN'T FULLY
UNDERSTAND LIKE THEIR MEMORY OF
WHAT WAS HAPPENING IN THAT TIME
FRAME WAS NOT VERY CLEAR. SO I
THINK THERE ARE INTERESTING
QUESTIONS THERE THAT ARE VERY
DIFFERENT. LAST THING I WANT TO
SAY, THIS IS SOMETHING KAREN HAS
SAID IN MANY OCCASIONS. I WANT
TO ECHO IT, ONE OF THE KEY
THINGS ABOUT RECOGNITION IS
ENSURING THAT THE PERSON WHO IS
A PARTICIPANT ALWAYS FEELS LIKE
THEY ARE TREATED AS A SUBJECT AN
AGENT, NOT THE OBJECTIVE STUDY
WHO IS JUST PASSIVELY
CONTRIBUTING SOME NEURAL DATA.
ESPECIALLY FOR THE LONG TERM
INTERACTIVE ONES SO THEY ARE
RECOGNIZED AS A HIGHLY IMPORTANT
CONTRIBUTING TEAM MEMBER. I
THINK IT IS AN OPEN QUESTION,
EXACTLY HOW WE DO THAT TO GO
BACK TO SAMEER'S POINT, WITHOUT
SOMEHOW OVEREMPHASIZING THAT
BENEFIT TO LURE PEOPLE INTO THE
STUDY.
>> SORRY, KEEP GOING.
>> I WAS JUST GOING TO SNEAK IN
AND SAY I COMPLETELY AGREE AND I
WOULD ALSO SAY THIS QUESTION OF
RECOGNITION IS NOT A MOOT POINT
EVEN IN THE INTEROPERATIVE STUDY
SO SOME OF THE THINGS WE HEARD
PATIENTS SAY LONG TERM HIGHLY
INTERACTIVE STUDY CARING ABOUT
RESEARCH INTEREST AND
PARTICIPATION HOW CAN WE RESPOND
TO INTEREST AND TREAT THOSE
PARTICIPANTS AS PEOPLE AS AGENTS
AS WELL. EVEN THOUGH WHEN
PARTICIPATING IN THE STUDY,
THERE'S ALL SORTS OF
COMPLICATING FACTORS IN THE OR.
THIS IS A FANTASTIC POINT AS
WELL AND CAN APPLY THOSE
STUDIES.
>> KAREN IN A SECOND BUT ALSO
RESPOND TO WHAT SARA SAID, I
THINK THERE ARE SO MANY -- THERE
IS A DISTINCT THAT CAN START US
AND THEN WE GO DOWN THE ROAD AND
THERE'S OTHER DISTINCTIONS ALONG
THE WAY. YOU MADE THAT POINT
BEAUTIFULLY THAT YOU CAN'T JUST
SAY OPPORTUNISTIC VERSUS
OPTIONAL BECAUSE THERE'S SO MANY
OTHER CONSIDERATIONS. ONE THING
THAT IS INTERESTING IS WHAT ARE
THE DINTSES THAT MATTER FOR THE
ETHICAL CONSIDERATIONS WE NEED
TO THINK ABOUT SO WE HAVE TALKED
ABOUT COMPENSATION AND
RECOGNITION BOTH OF YOU SPOKE
ABOUT IN YOUR PRESENTATIONS AND
WE HAVEN'T SPOKEN ABOUT IT YET
MUCH ON THIS PANEL, THIS WHOLE
QUESTION OF WHAT IS CONSENT, AS
STEVE MENTIONED EARLIER, NOT
JUST CONSENT BUT DISCUSSION ALL
THE WAY THROUGH. AND BEING PART
OF THAT DISCUSSION ALL THE WAY
LIEU SO THOSE ARE OTHER THINGS
TO GET BACK TO. KAREN.
>> I REALLY APPRECIATED
PERSPECTIVE BROUGHT UP SEVERAL
TIMES AND I'M GRATEFUL TO JAMES
FOR BEING HERE. IT MADE ME
WONDER SOMETHING SIMILAR TO WHAT
EVA PUT IN THE CHAT WHERE SHE
ASKS FOR SUPPORT GROUPS OR
RESEARCH PARTICIPANTS AND
CAREGIVERS AND I WAS WONDERING
IF JM -- MAYBE SARA AN ASHLEY
COULD MENTION, IF THERE WERE
ALREADY EXISTING COMMUNITIES OF
PARTICIPANT RESEARCHERS IN THE
BCI SPACE, IF THERE AREN'T ANY
IS WILL A DESIRE TO HAVE ONE?
AND MAYBE THAT COULD HELP US
WITH OUR ONGOING PROCEDURES FOR
-- ONGOING PROCEDURES FOR
CONSENT. SEE IF YOU CAN STILL
HEAR ME.
>> WE CAN.
>> SO -- I'M SORRY, GO AHEAD
JAMES.
>> UNFORTUNATELY THERE AREN'T
ANY SUPPORT GROUPS FOR PEOPLE
WHO ARE PARTICIPATING IN
STUDIES. I THINK PARTLY TO DO
WITH -- THEY MAY BE INVOLVED IN
DIFFERENT ASPECT OF THE STUDY. I
KNOW FOR PARTICIPANTS UNDER DR.
ANDERSON, AT CAL TECH THERE ARE
DIFFERENT ASPECTS OF THIS STUDY,
FOR EXAMPLE IMPLANTS ARE IN
DIFFERENT AREAS OF THE BRAIN.
FOR EACH INDIVIDUAL PARTICIPANT.
BUT IN TERMS OF A COMMUNITY
TYPESET UP WHERE WE CAN COMMON
KATE WITH EACH OTHER, I BELIEVE
THAT EXISTS.
>> OKAY. GO AHEAD SARA.
>> JAMES, DO YOU THINK IT WOULD
BE HELPFUL OR VALUABLE AND I
THINK IN RESPONSE TO KAREN, I
WOULD THINK ABOUT THIS STUDY WE
DID NOW A WHILE BACK WITH PEOPLE
USING AN EXPERIMENTAL DBS, FOR
TREATMENT RESISTANT DEPRESSION
AND/OR OCD. THAT GROUP OF PEOPLE
WE DID A FOCUS GROUP RATHER THAN
INDIVIDUAL INTERVIEWS. THEY
WERE EXCHANGING CONTACT
INFORMATION AFTERWARD THINKING
SOMEBODY ELSE WHO HAS THIS
EXPERIENCE AND CAN TALK TO ME
ABOUT JUST ONE OF THE THINGS WE
FOUND WAS INTERESTING CHANGES IN
RELATIONSHIPS ON THE BASIS OF
KNOWING YOU HAD THIS DEVICE THAT
COULD ALTER SOMETHING ABOUT YOUR
MOOD OR BEHAVIOR ESPECIALLY WITH
THE PATIENT CONTROLLER WHETHER
YOU COULD BE SHIFTED IN RESPONSE
TO THINGS THAT OTHER FAMILY
MEMBERS WERE SAYING SO IT WAS
REALLY IMPORTANT FOR THAT GROUP
TO SEEMINGLY THROUGH THIS
EXPERIENCE OF FOCUS GROUP HAVE
ACCESS TO OTHER PEOPLE. I DON'T
KNOW. CURIOUS FROM JAMES, DO YOU
THINK IT WOULD BE INTERESTING,
HELPFUL, ONE FOR YOU WHO IS IN
THE STUDY AND THINKING ABOUT
PROSPECTIVE PEOPLE COMING INTO A
STUDY TO BE ABLE TO JOIN A CHAT
GROUP WITH YOU AND OTHERS WHO
ARE ALREADY IN IT.
>> ABSOLUTELY. IF I WAS ABLE TO
SPEAK WITH PEOPLE WHO ARE
INVOLVED IN THE SAME STUDY, THAT
WOULD BE GREAT. I WOULD LOVE TO
SWAP STORIES AND HEAR SOME OF
THE CHALLENGES THEY EXPERIENCE.
SO AND SOME OF THE SOLUTIONS
THEY MIGHT HAVE. NOT ALL FUTURES
AND ROSES, IT IS QUITE
CHALLENGING. I MEAN, WE HAVE TO
WALK AROUND WITH OUR PHYSICAL
APPEARANCE ALTERED. WE HAVE
THESE ELECTRODES STUCK ON THEIR
-- OUR HEADS. I USE TO NEVER
WEAR HATS BEFORE, NOW I WEAR
HATS BECAUSE IT IS EASIER TO
WHERE WEAR A HAT THAN HAVE THE
STARES WHEN PEOPLE ASK WHAT IS
THAT ON YOUR HEAD. SO YEAH,
THERE IS A DEGREE OF DEPRESSION
THAT IS ASSOCIATED WITH WHAT WE
HAVE TO GO THROUGH. TO HAVE
FOCUS GROUP OR INTERACTION WITH
OTHERS THAT WOULD BE BENEFICIAL.
>> GO AHEAD SARA. YOU WANT TO
RESPOND?
>> MY HAND.
>> I WANTED TO SAY, THINKING
HANK'S QUESTION MAYBE SOME OF --
ONE OF THE THINGS THAT IS
RELEVANT TO HOW INTERACTIVE --
SO ONE OF THE THINGS I WAS
TRAINED TO ADDRESS IN MY SLIDES
IS TIME CONSUMING NATURE OF IT
AND INVASIVENESS IN THIS NON---
NOT FOCUSED ON SURGICAL RISK BUT
ON THE INVASIVENESS IN YOUR LIFE
KIND OF WHICH I THINK MATTERS
THERE IS A WAY IN WHICH THE CELL
PHONE STUDY THAT YOU DESCRIBED
HANK, IT IS MULTIPLE TIMES
DURING THE DAY YOUR PHONE BUZZES
AND YOU HAVE TO DO SOMETHING BUT
IF YOU ARE DONE IN FIVE MINUTES
YOU ARE NOT TAXED MENTALLY AND
PHYSICALLY, YOU DON'T HAVE TO GO
SOMEWHERE TO DO IT, THAT SEEMS
COMPLETELY DIFFERENT FROM -- THE
JOB YOU DO THAT IS VERY TIRING
IN YOUR AS JAMES SAID YOU ARE
TIRED WHEN YOU GO HOME, IT IS
NOT JUST THE TIME IN THE LAB BUT
WHAT FOLLOWS FROM THAT. I THINK
THAT IS ONE RELEVANT FEATURE. I
DON'T HAVE A TAXONOMY PREPARED.
>> I WOULD LIKE TO SHIFT OUR
DISCUSSION A LITTLE BIT, ALL THE
THINGS WE HAVE BEEN TALKING
ABOUT MIGHT BE RELEVANT HERE, I
WANT TO ASK EVERYBODY IF THEY
CAN THINK ABOUT AND OPINE ON
WHAT ETHICAL CHALLENGES HAVE
BEEN IDENTIFIED IN THESE
DISCUSSIONS OR RELATED ONES,
THAT MIGHT BENEFIT FROM
ADDITIONAL RESEARCH, ADDITIONAL
GUIDANCE OR DISCUSSION BY THE
NEUROETHICS WORKING GROUP OR
SOME COMBINATION THEREOF. SO YOU
HAVE TO THINK ABOUT ALL THE
THINGS WE HAVE BEEN TALKING
ABOUT, WHAT DO WE NEED MORE
RESEARCH ON? WHAT DO WE NEED
MORE GUIDANCE ON? WHAT CAN THE
NEWG DO AS A -- FOR ANY OF THESE
ISSUES IN TERMS OF FORWARDING
THE DISCUSSION. ANY IDEAS ON
THAT? I CAN CALL ON EVERYBODY,
OR I CAN LET YOU VOLUNTEER.
SAMEER. GO FOR IT.
>> WONDER WE TALKED ABOUT THIS
ASHLEY IN YOUR -- YOU TALKED
ABOUT THIS, THE DUAL ROLE ISSUE
AND AS SOMEONE STUCK IN DUAL
ROLE I WONDER HOW BEST TO DO
THIS. WE TALKED ABOUT VARIOUS
MODELS, IN EXTREMES ARE THAT ON
THE ONE HAND THE QUESTION
SCIENTIST DOES THE ENTIRE
CONSENT, THAT IS IT. ON THE
OTHER HAND THEY GIVE IT UP
ENTIRELY TO SOMEONE ELSE. AND
THE OTHER PERSON DOES IT. THEN
MAYBE THERE IS VARIOUS HYBRID
MODELS WHERE THE DUAL ROLE
PERSON HAS SOME PARTICIPATION IN
IT. JUST SPEAKING OF MYSELF THAT
IS WHAT WE DO, I WILL
PARTICIPATE IN IT JUST TO A
CERTAIN POINT THEN HAND OFF FOR
SOMEONE ELSE TO PICK UP AND
FINISH. IT IS NOT PERFECT,
DOESN'T WORK EVERY TIME BUT THE
REASON FOR THAT I FEEL LIKE IS
JUST THE DISCUSSION OFTEN
INVOLVE NOT JUST RESEARCH
TOTALLY SEPARATE FROM THE
SURGERY BUT FOR POTENTIAL
PARTICIPANT, THEY ARE ALL
INTERTWINED. IT IS HARD NOT TO
BE THERE WHEN THEY START ASKING
ABOUT -- WHAT IF THIS HAPPENS,
RESEARCH COORDINATORS SO I WOULD
LIKE TO KNOW, I MEAN FROM THE
CANDIDATE ENROLLED PARTICIPATE
PERSPECTIVE, WHICH OF THESE HAY
THINK WOULD BE USEFUL IN TERMS
OF GETTING INFORMATION THEY
NEED, BEING ABLE TO MAKE A
DECISION THAT IS INFORMED,
TOTALLY WITHOUT INFLUENCE FROM
CLINICIANS, SUCH AS MYSELF WHO
THEY TRUST BUT TRUST FOR THE
SURGERY, SEPARATE THING, WHERE
THEY TRUST WHAT WE ARE DOING ON
RESEARCH SIDE OF THINGS. I DON'T
KNOW HOW BEST TO DO IT. A CROSS
SECTION THROUGH WHAT IS
HAPPENING NOW BECAUSE EVERYONE
IS DOING IT DIFFERENTLY, YOU GET
A SNAP SHOT AND IF YOU SORT OF
HAVE IT DETAILED ENOUGH OF HOW
THE PROCESS WAS DONE, IF THERE
IS AN ACCOUNT MAYBE HAVE SOME
SENSE WHAT WORKED WELL AND WHAT
DIDN'T. IN A CROSS SECTIONAL
WAY. MAYBE FROM THAT YOU CAN
HOBBLE TOGETHER TO PITCH THIS
THING TO WORK BEST.
>> SO YOU ARE TALKING RESEARCH,
DOING RESEARCH IN THAT ISSUE
ESPECIALLY FROM THE PERSPECTIVE
OF PARTICIPANTS.
>> RIGHT.
>> GREAT. GREAT IDEA. OTHERS.
ANYBODY ELSE HAVE IDEAS ABOUT
RESEARCH GUIDANCE OR NEWG
UPTAKE? ON ISSUES WE HAVE
DISCUSSED TODAY? JIM.
>> THANKS, CHRISTINE, SOMETHING
I HAVE BEEN STRUCK BY FROM
DISCUSSION TODAY IS THIS IDEA OF
CONSENT FOR STUDIES YOU
PRESUMPTIVELY NOT HAVE
THERAPEUTIC BENEFIT AND IDEA
CONTINUING CONSENT THROUGHOUT
THE STUDY. TRY TO THINK ABOUT
HOW DEVELOP GUIDANCE WITH
RESPECT TO THAT, WHETHER OR NOT
THERE IS A GENERAL TYPE OF
GUIDANCE DONE OR IS IT ALL HAVE
TO BE SPECIFIC TAILORED TO THE
PARTICULAR INDIVIDUAL OR
PARTICULAR STUDY. I THINK THAT
WOULD BENEFIT THE COMMUNITY
PATIENTS AND RESEARCH IN
GENERAL.
>> GREAT. YOU ARE SUGGESTING WE
NEED GUIDANCE AND WE NEED --
THAT MIGHT BE SOMETHING THE NEWG
COULD AT LEAST DISCUSS?
>> EXACTLY. THERE ARE NUMBER OF
THINGS THAT CAN BE DONE TO TRY
TO FLUSH THAT OUT A LITTLE BIT.
>> GREAT. WINSTON.
>>
>> IT WAS NINA THAT DISTRIBUTED
TALKING AND THINKING POINTS. I
AM STRUCK BY THIS ONE ABOUT THE
BRINGING INVESTIGATORS TOGETHER
PUTTING TOGETHER THESE KINDS OF
GUIDELINES AND THINKING A LITTLE
BIT ABOUT WHERE RESPONSIBILITY
LIES FOR ESTABLISHING STANDARDS,
IT IS IMPORTANT THE WAY ASHLEY
SAID THESE ARE PRESENTED FOR
DISCUSSION. OBVIOUSLY WE NEED
INVESTIGATORS TO PARTICIPATE IN
THAT DISCUSSION AND BRING THOSE
EXPERIENCES. BUT I JUST THOUGHT
THE THE WAY NINA POSED THE
QUESTION WAS INTERESTING. I
DON'T HAVE AN IMMEDIATE RESPONSE
TO IT. BUT -- I THINK IT IS
NOTEWORTHY THAT THE NEURON PAPER
IS PRESENTED BY THE COMMUNITY
INVESTIGATORS DOING THE WORK.
WHICH I THINK IS WHAT GIVES IT
THE POWER AND WHAT MAKES IT SO
SIGNIFICANT. BUT AT THE SAME
TIME THERE IS A WHOLE BUNCH OF
OTHER STAKEHOLDERS THAT OUGHT TO
HAVE SOME SAY, IT IS HARD TO
KNOW EXACTLY HOW TO
OPERATIONALIZE THAT SO FORTH. SO
THAT'S SOMETHING THAT YEAH, A
PERSON -- OCCURS TO ME AS
SOMETHING THAT'S WORTH
CONSIDERING FROM OUR
PERSPECTIVE, ALSO UNDERSTANDING
WE ARE ALSO DEEP INSIDE, AS
BEING PART OF FUNDING AGENCY
THAT IS FUNDING THIS WORK. HOW
TO THINK ABOUT SORT OF BROADER
PARTICIPATION, MAYBE PART IS
HAVING STUDY AND PUTTING THESE
THINGS OUT THERE, AND HAVING
MORE OPEN DISCUSSION THAN I
THINK IS AVAILABLE BEFORE.
>> GREAT. THANK YOU, WINSTON.
STEVE.
>> THIS I THINK IS A CHALLENGING
ONE, BUT I THINK IN SARA AND
ASHLEY RAISE THE ISSUE OF
PARTICIPANTS AS BOTH SUBJECTS
AND OBJECTS, THE REASON IT IS
HARD IS BECAUSE EVEN IN ORDINARY
CLINICAL MEDICINE EVERYBODY IS
BOTH. EVEN ORDINARY CLINICAL
MEDICINE IT IS A STANCE THAT IS
OFTEN NOT HANDLED WELL. AND WHEN
YOU ARE MAKING A DIAGNOSIS AND
THINKING OF A PERSON AS A MEMBER
OF A CLASS THAT GETS A CERTAIN
DRUG OR WHEN YOU ARE PUTTING
FINDING THE RIGHT PLACE FOR THE
ELECTRODE IN PERSON'S BRAIN THAT
ARE OBJECTS. THEN YOU WANT TO
SWITCH AND SAY THAT THESE
PARTICIPANTS ARE -- WE WANT
THOSE AGENTS AS BASICALLY
SUBJECT. AND I'M NOT POSITIVE
HOW ONE GOES ABOUT IMPROVING
THAT -- ANYBODY WHO IS A
CLINICIAN HAS SEEN FAILED
ATTEMPTS TO TREAT PEOPLE AS
SUBJECTS WHICH IS JUST
PATRONIZING FOR EXAMPLE.
SOMEWHAT DISTANT EXAMPLE. THE
REASON I THINK ABOUT THIS, WHEN
I WAS NIH DIRECTOR IN THE '90s
A LONG TIME AGO, I -- FOR OUR
CLINICAL TRIALS AND HEALTH
SERVICES PORTFOLIO, I INCLUDED
PATIENTS AND ADVOCATES AND
FAMILIES AND NUMBER ON STUDY
SECTIONS, WITH THE ROLE NOT OF
JUDGING STATISTICS BUT WITH THE
ROLE OF TALKING ABOUT WHAT
MEASURE, WHAT MATTERS TO THEM.
WHAT OUTCOMES THEY CARE ABOUT.
AND THE DEGREE TO WHICH THE
MEMBERS OF THE STUDY SECTION
HATED THAT, WAS EXTRAORDINARY, A
FEW PEOPLE CAME AROUND. IT WAS
THE FIRST THING THAT DISAPPEARED
WHEN I HAD LEFT TO GO BACK TO
ACADEMIA. SO I THINK WE -- I
THINK THAT SARA AND ASHLEY AND
OTHERS HAVE HIT ON A REALLY
IMPORTANT AND NAUGHTY PROBLEM,
HOW WE HAVE BOTH -- BOTH OF
THESE MIND SETS, THEY HATE IT SO
MUCH BECAUSE HARP THE EXPERTS
AND THEY WOULDN'T SAY THIS
OUTLOUD, THEY WERE AFRAID THEY
WOULD BE TOLD WHAT TO DO AND
JUST BECAUSE YOU HAVE THIS LIVED
EXPERIENCE DOESN'T MAKE YOU
EXPERT BUT RULES ARE I THINK
WELL LAID OUT. IN FACT WE
LEARNED A LOT. THEY WERE NOT
MOST PARTICIPANTS WERE RATHER
UNINTERESTED IN THE SYMPTOM
REDUCTION SCALES THAT WE USE FOR
PHASE 3 TRIALS, THEY WERE
INTERESTED IN FUNCTION, WILL I
BE ABLE TO GO BACK-TO-SCHOOL,
WORK, HOW CAN I BE USEFUL IN
SOCIETY. IT'S AN ECHO WHAT WE
HEARD HERE AGAIN I DON'T WANT TO
GO ON TOO LONG IT IS JUST THAT
IF THERE WAS A WAY OF THINKING
ABOUT GUIDELINES WORKSHOPS FOR
INVESTIGATORS, THIS IS ONE OF
THOSE THINGS, IT IS LIKE
GRASPING JELL-O. I CAN'T EVEN
GIVE YOU PERFECT FORMULATION.
BUT IT IS SO IMPORTANT. T SO
IMPORTANT HOW THE PARTICIPANTS
WILL FEEL. AND ENGAUGE.
>> GOOD POINT STEVEN. IN MY OWN
MIND THE DIFFERENCE BETWEEN
WORKING WITH WORKING WITH
SOMEBODY AND LONG TERM
INTERACTIVE STUDY SEEING THEM
ONCE OR COLLECTING THEIR DATA
FROM SECONDARY SOURCE IS VERY
DIFFERENT IN TERMS OF HOW WE
THINK ABOUT THE -- WHO THEY ARE
AND WHAT THE COLLABORATION IS.
>> AND ASHLEY JUST MENTIONED THE
DISTINCT BETWEEN OBJECTIVE
STANCE AND INVOLVED STANCE BUT
WHAT I WOULD SAY IS GOOD
CLINICIANS SWITCH STANCES NOT
WITH CONSCIOUS INTENTION, THEY
PICK UP THE SOCIAL SIGNALS AS
THEY SWITCH MIND SETS AND TWO
ARE PRETTY INCOMPATIBLE I
BELIEVE. I THINK THEY WERE
DISTINCT WHICH IS WHY IT IS SO
CHALLENGING.
>> ALL RIGHT. THANK YOU. HANKS.
>> I THINK IT MIGHT BE FUN TO
TRY TO FIGURE OUT A TAX ON MINI
i-- TAXONOMY OF THE ISSUES AND
THE TAXONOMY TIED TO DIFFERENT
INTERVENTION BUS DIFFERENT KINDS
OF THINGS WHETHER IT IS SUPPORT
SESSIONS, FOR THE RESEARCH
PARTICIPANTS, WHETHER
COMPENSATION, WHETHER IT IS
RECOGNITION WHETHER SOMETHING
ELSE, THAT IS SOMETHING HA COULD
BE DONE BY SOMEBODY AMBITIOUS
ASSOCIATED WITH NEWG THAT COULD
THEN END UP BEING A NEWG
DISCUSSED AND POLISHED PAPER
WITH COMMENTARY FROM
INVESTIGATORS AS WELL.
>> AND DO YOU MEAN AS A RESEARCH
PROJECT OR AS A DISCUSSION?
ITEM?
>> I THINK ULTIMATELY AS A
PUBLICATION. WHETHER IT IS WHAT
DO YOU CALL IT RESEARCH EXACTLY
I'M NOT SURE. YES.
>> OKAY. I WOULD SAY JUST TWO
THINGS THEN TURN TO JOHN FOR FEW
CLOSING REMARKS.
>> STEVE DID YOU HAVE SOMETHING
ELSE TO SAY?
>> NO, NO. I WAS READING THE
EXCELLENT CHAT COMMENTS.
>> A LOT OF GREAT CHAT COMMENTS
FOR THOSE WHO HAVEN'T HAD A
CHANCE TO LOOK AT THEN, PLEASE
DO. I WANT TO FIRST OF ALL THANK
THE PANELISTS, ALL FOUR OF THEM.
DR. GOERING, DR. FEINSINGER, DR.
ZAGHLOUL AND MR. JOHNSON. WE
REALLY APPRECIATED YOUR
PERSPECTIVES AND YOUR -- THE
TIME YOU TOOK TO SHARE YOUR
EXPERTISE WITH US. AND SOME OF
THE GREAT THINGS YOU RAISED FOR
US TO THINK ABOUT. IT DOES SEEM
CLEAR TO ME FROM THIS DISCUSSION
THAT THERE ARE DISTINCTIONS
BETWEEN THESE KINDS OF RESEARCH
THAT ARE RELEVANT TO HOW WE
THINK ABOUT THEM ETHICALLY AND
THAT WE DO NEED TO SORT OF PAY
ATTENTION TO THOSE DISTINCTIONS.
BUT ACROSS ALL OF THE
DISTINCTIONS THERE'S STILL SOME
COMMON FEATURES. THERE ARE
PEOPLE THAT WE ARE WORKING WITH
AND WE NEED TO TREAT THEM
RESPECTFULLY, WE NEED TO THINK
ABOUT HOW WE GIVE THEM
INFORMATION AND HOW THEY CAN OR
CANNOT UNDERSTAND IT AND WHETHER
OR NOT THEY FEEL LIKE THEY CAN
MAKE A CHOICE, WHAT THAT CHOICE
IS. HOW WE RECOGNIZE THEM FOR
THAT. AND HOW WE TALK TO THEM
THROUGHOUT THE ENTIRE STUDY.
THEN THERE WERE OTHER THINGS
THAT PEOPLE BROUGHT UP THAT WE
DIDN'T TALK ABOUT MUCH, TRUST I
THINK ASHLEY BROUGHT UP TRUST
WHICH IS SUCH AN IMPORTANT
ISSUE. SARA BROUGHT UP THE POST
TRIAL ISSUES WHICH ARE RELEVANT
TO SO MANY OTHER KINDS OF
RESEARCH THAT WE DIDN'T TALK
ABOUT TODAY. AS I HEARD YOU SAY
YOU HAD A WORKSHOP WE ARE HAVING
A WORKSHOP, NEWG IS HAVING A
WORKSHOP THIS YEAR ON THAT TOPIC
TOO SO THERE ARE OTHER ISSUES
THAT ARE CIRCULATING IN THE AIR
HERE BUT IT WAS A RICH
DISCUSSION AND I APPRECIATE ALL
THE CONTRIBUTIONS PEOPLE MAKE.
NOW I'M GOING TO TURN IT OVER TO
JOHN AND TAKE IT FROM THERE.
>> THANKS VERY MUCH. I WANT TO
ECHO CHRISTINE'S THANKS TO ALL
THE PANELISTS HERE. AND
EVERYBODY WHO PARTICIPATED IN
THIS ILLUMINATING CONVERSATION.
MR. JOHNSON WE APPRECIATE YOUR
PARTICIPATION IN DR. ANDERSON'S
STUDY YOU HELPED ADVANCE THE
SCIENCE AND WE ARE APPRECIATIVE
OF THAT AND YOUR WILLINGNESS TO
GIVE US YOUR PERSPECTIVES. I
ALSO THINK ASHLEY AND SARA'S
PRESENTATIONS ALSO HIGHLIGHT FOR
ME TWO IMPORTANT THINGS THAT WE
WILL I THINK HELP US IN THE LONG
RUN ADVANCE ALONG SOME OF THESE
ISSUES THAT STEVE MENTION AD
GRASPING AT JELL-O APTLY. ONE IS
EMPIRICAL RESEARCH IMPORTANCE.
WE HAVE TO BE DATA DRIVEN
UNDERSTAND WHAT THE ISSUES ARE,
THE PROBLEMS ARE, BOTTLENECKS
BEFORE WE THINK ABOUT SOLUTIONS.
THE OTHER PIECE EMBODIED BY THE
RESEARCH OPPORTUNITIES HUMANS
CONSORTIUM AND ASHLEY DID
WONDERFUL PAPER THAT YOU FOLKS
PUT TOGETHER, WAS SO CLEARLY
FRAMING WHAT THE ISSUES ARE. BUT
ALSO COMING UP WITH I THINK SOME
VERY REASONABLE -- MORE THAN
REASONABLE ACTIONABLE SOLUTIONS.
AND I THINK HERE REALLY
UNDERSCORES THE POWER OF HAVING
THE INVESTIGATORS WHO ARE DOING
IT. AND ARE AWARE OF THE ISSUES
TO BE COMING UP WITH BEST
PRACTICES. WHETHER THESE BECOME
GUIDELINES OR NOT, I THINK IT IS
ALWAYS BETTER THAT THE FOLKS
DOING THE WORK COME UP, IDENTIFY
PROBLEMS AND PROPOSE SOLUTIONS
RATHER THAN HAVING SOMEBODY
TELLS THEM WHAT THE SOLUTION
SHOULD BE. SO RATHER THAN BEING
PRESCRIPTIVE FROM THE NIH POINT
OF VIEW IT IS BETTER IF WE
ASSIST INVESTIGATORS AND
RESEARCH PARTICIPANTS COME UP
WITH SOLUTIONS THAT WILL WORK
REALLY WELL, PROTECT INTERESTS
OF OUR HUMAN SUBJECTS, HUMAN
PARTICIPANTS, WHILE ALSO
ADVANCING THE SCIENCE. SO THIS
IS GRASPING AT JELL-O, I THIS I
ALSO THE PATH TO GETTING FROM
POINT A TO B WHERE WE HAVE BEST
PRACTICES DEFINED, MAYBE THEY
WILL BECOME GUIDELINES OR NOT,
THAT IS ALSO MURKY BUT I THINK
WITH THIS CORE GROUP OF FOLKS
THAT ARE BEING SUPPORTED NOT
JUST BY BRAIN BUT ALSO OTHERS
SECTORS OF NIH AND OTHER
RESEARCH GOING ON, I THINK YOU
FOLKS KNOW GOOD PRACTICE WHEN
YOU SITE AND ONCE ACCEPTED BY
RESEARCH COMMUNITY THE CLINICAL
COMMUNITY, I THINK IT WILL BE
EASY TO SPREAD THE GOOD WORD
GOOD PRACTICE FROM THERE. SO
ANYTHING THAT BRAIN CAN DO TO
ASSIST CATALYZE THESE
DISCUSSIONS TO SUPPORT THEM
WHETHER IT BE SUPPORTING
CONSORTIA OR WORKSHOPS
ENCOURAGING YOU FOLKS TO SIT
DOWN AND WRITE ANOTHER SET OF
PAPERS, BUT I H I THIS POSITION
PAPERS HAVE VERY -- I THINK THIS
POSITION PAPERS ARE IMPORTANT IN
FRAMING DIRECTING WHERE THE
CONVERSATION NEEDS TO BE. THANK
YOU ALL FOR A GREAT DISCUSSION.
THIS HAS REALLY BEEN
ILLUMINATING AT LEAST FOR ME.
>> NOW IT IS TIME FOR A BREAK.
WELCOME BACK. I'M IN CHARGE OF
MODERATING THE LAST COUPLE OF
SESSIONS OF TODAY'S MEETING. BUT
BEFORE I DO I WANT TO NOTE TWO
PERSONAL THINGS. AS -- I WENT
BACK AND LOOKED THE FIRST
DOCUMENT I CAN FIND IN MY
COMPUTER MEMORY THAT HAS NEWG ON
IT IS FROM MAY OF 2016. IT
REFERS TO A MEETING IN FEBRUARY
OF 2016 AND I VAGUELY REMEMBER
THERE MAY HAVE BEEN EARLIER
TALKS ABOUT FOUNDING OF THE NEWG
BACK IN 2015 BUT BASICALLY WE
HAVE BEEN AROUND FOR SIX YEARS.
PLUS OR MINUS, A LITTLE BIT.
ALL THAT TIME STEVE HYMAN HAS
BEEN A MEMBER OF THE NEWG. JUST
AS STEVE HYMAN HAS BEEN A MEMBER
-- A FORCE IN THE MODERN ERA OF
NEUROETHICS SINCE IT STARTED,
JUST ABOUT 20 YEARS AGO THIS
YEAR, I DATED TO THE MAY 2002
DATA FOUNDATION SPONSORED
CONFERENCE IN SAN FRANCISCO
WHICH STEVE HAD A HUGE ROLE IN.
WITH STEVE OVER THE LAST 20
YEARS ON THESE KINDS OF ISSUES
AND HE'S BEEN REALLY IMPORTANT
FOR THE NEWG. I'M SORRY TO SEE
HIM ROTATE OFF. SECONDLY, KHARA
RAMOS HAS BEEN PART OF THE NEWG
SINCE THE BEGINNING AND PROBABLY
ONE OF THE MOST IMPORTANT PARTS
OF NEWG IN TERMS OF BEING THE
PERSON WHO MADE IT WORK. AND SO
I DON'T KNOW -- I HAVEN'T SEEN
HER ON THE PARTICIPANT LIST, I
DON'T KNOW WHETHER SHE'S LISTING
OR NOT, BUT I HOPE SHE'S FEELING
GOOD PROVIBRATIONS BEING SENT
HER WAY, THIS IS OUR FIRST
MEETING WITHOUT HER, AND DOESN'T
FEEL THE SAME I'M SURE IT WILL
GO -- WE WILL TO GOURD FINE AS
I'M SURE SHE WILL GO FORWARD
FINE IN HER FUTURE ENDEAVORS BUT
AS A PERSONAL LEVEL I WANT TO
NOTE MY GREAT APPRECIATION FOR
ALL THE WORK SHE'S DONE WITH THE
NEUROETHICS WORKING GROUP OF THE
MULTI-COUNCIL WORKING GROUP OF
THE NIH BRAIN SERVICE MARK
INITIATIVE. WHAT HAS THE NEWG
DONE? WHAT ARE WE SUPPOSED TO BE
TALKING ABOUT IN THE REMAINDER
OF TODAY'S MEETING? THAT IS
REALLY WHAT WE SHOULD BE DOING
GOING FORWARD. WHAT WE SHOULD
BE DOING THIS YEAR AND GOING
FORWARD AND A LITTLE BIT OF
BACKGROUND. SO I HOPE TO SAY
VERY LITTLE IN THIS. THIS IS
REALLY TO HEAR FROM PEOPLE ON
THE NEWG AND OTHERS ON THE CALL.
THINGS THAT YOU SHOULD DO, I
WANT TO START OUT BY DOING A
LITTLE REVIEW ABOUT WHAT WE HAVE
DONE. WE PROVIDE INPUT BUT NEVER
QUOTE ADVICE CLOSE QUOTE TO
BRAIN OFTEN THROUGH THESE
MEETINGS VEHICLED GENERALLY
TWICE A YEAR. WE PROVIDE INPUT
ON THE TEAM AND NEUROETHICS PAY
PLAN AND ON NON-NEUROETHICS PLAY
PLAN WHEN APPROPRIATE, WE GIVE
INPUT ON CONCEPTS WITH
ANTICIPATED NEUROETHICS ISSUES,
AND INPUT ON APPLICATIONS FOR
PROGRAM STAFF, CONSULTATION FOR
BRAIN GRANTEES THAT IS ONE THAT
I THINK IS MOST INTERESTING WORK
AND SOMETHING I WOULD LIKE TO
SEE HAPPEN EVEN MORE MORE. WE DO AN
ANNUAL PORTFOLIO ANALYSIS OF
BRAIN INITIATIVES GRANTS AND HOW
HAY MAY HAVE WHERE AND HOW THEY
MAY HAVE THEIR NEUROETHICS
IMPLICATIONS. WE PUBLISHED AT
LEAST FOUR THINGS FOR THE NEWG,
POINTS TO CONSIDER FOR THE FIELD
OR WE HAVE INFORMED PUBLISHED
PIECES, WE CONDUCTED RESEARCH ON
RESEARCH WITH NEURAL TISSUE
ETHICS WITH INVASIVE AND
NON-INVASIVE DEVICES IN HUMANS
AN TWO WORKSHOPS COMING OUT THAT
HAVE HAD TOPICS IDENTIFY FROM
NEWG INPUT WHILE POST TRIAL
RESPONSIBILITIES AND ONLINE DATA
SHARING BOTH PLAN FOR 2022. ALL
THAT IS NICE. ALL THAT IS IN THE
PAST OR SOON BE IN THE PAST. THE
QUESTION NOW IS WHAT IS NEXT? ON
THAT I'M JUST GOING TO OPEN THE
FLOOR TO COMMENTS FROM PEOPLE
ABOUT WHAT THEY THINK WE SHOULD
BE DOING, WE HAVE GOT A SLIDE UP
ABOUT SOME OF THE THINGS WE
MIGHT THINK ABOUT IF WE ARE
TRYING TO DO TAXONOMY FUTURE
NEWG ACTIVITIES, WITHIN THAT
FRAMEWORK OR OUTSIDE THEM WHAT
SHOULD WE BE THINKING ABOUT WHAT
SHOULD WE BE WORRYING ABOUT,
WHAT DO YOU WANT US TO CONSIDER?
THAT IS IS NOT A RHETORICAL
QUESTION. KICKING IT OVER TO
ANYBODY WHO WANTS TO CONTRIBUTE
THROUGH RAISING YOUR YELLOW OR
OTHERWISE COLORED HAND. WINSTON.
>> YOU ARE MUTEDDED WINSTON.
>> TURNED ON THE VIDEO.
SOMETHING I THINK WITH
CONVERSATIONS ABOUT SCIENCE AND
SOCIAL JUSTICE LAST YEAR AND
ALSO RELEVANT TO THE
CONVERSATION WE WERE JUST HAVING
HAS TO DO WITH PUBLIC ENGAGEMENT
AND NEUROSCIENCE AND WHAT THAT
MIGHT MEAN AND LOOK LIKE. SO I
WAS JUST THINKING ABOUT KAREN'S
POST ON THE CHAT HAVING TO DO
WITH HOW TO ENGAGE WITH
DIFFERENT COMMUNE THES THAT ARE
AFFECTED BY NEUROSCIENCE AND I
THINK IT WOULD BE INTERESTING TO
THINK A LITTLE BIT ABOUT WHAT
THAT MIGHT LOOK LIKE AND MODELS
THAT ENGAGEMENT THAT GO BEYOND
COMMUNICATION DISSEMINATION AND
THAT GET INTO SOME OF THESE 30
QUESTIONS STEVE WAS TALKING
ABOUT BEFORE ABOUT HOW TO
INVOLVE, WHAT IS APPROPRIATE TO
INVOLVE IN PUBLIC OR PEOPLE
AFFECTED BY SCIENTIFIC RESEARCH,
INTO AGENDA SETTING AND INTO
THINKING ABOUT THESE ETHICAL
QUESTIONS.
>> ANY PARTICULAR THOUGHTS ABOUT
HOW TO GO ABOUT THAT SET OF
QUESTIONS?
>> IT WAS KIND OF HOPING THAT I
WOULD BE SERVING SOMETHING UP
FOR KAREN TO RESPOND TO BUT I
DIDN'T WANT TO PUT HER ON THE
SPOT, SHE'S PROBABLY THE PERSON
WHO I THINK OF HAS THOUGHT
DEEPLY ABOUT THESE ISSUES. THESE
MODELS ABOUT COMMUNITY ADVISORY
BOARDS OR SOMETHING WE TRYING TO
INCORPORATE TO OUR WORK THOUGH
I'LL SHARE THAT I THINK IT HAS
BEEN TRICKY TO THINK HOW THIS
REALLY FITS IN, AND SOME IS
WITHIN NIH AND MORE BROADLY YOU
HAVE MORE INVESTIGATOR INITIATED
RESEARCH. I THINK EVEN THINKING
ABOUT HOW TO FIT IN COMMUNITY
PARTICIPANT PERSPECTIVES INTO
AGENDA SETTING RESEARCH CAN BE
CHALLENGING IN TERMS OF HOW TO
GENUINELY DO THAT WITHIN THE
INVESTIGATOR INITIATED MODEL
THAT WE HAVE.
>> OKAY. WE'LL LEAVE OPEN
POSSIBILITY OF KAREN'S YELLOW
HAND OR OTHERWISE COLORED HAND
GOING UP BUT NOT SEEING IT RIGHT
NOW.
>> SORRY. I HAD EYE SURGERY SO I
CAN'T REALLY SEE. I THINK ONE OF
THE THINGS THAT ACTUALLY HAD A
LITTLE BIT OF A CHAT WITH
YASMEEN WHO HAS PARTICIPATED IN
ALL OF US WORK AND I THINK ALL
OF US IS BROUGHT UP SEVERAL
TIMES IN THINKING ABOUT HOW TO
-- THAT ARE ENGAGED IN COMMUNITY
OF PARTICIPANTS AND FAMILIES AND
THEIR ADVOCATES, FAMILY
ADVOCATES AND INDIVIDUALS WHO
LIVE, HAVE THESE LIVED
EXPERIENCES TO SHARE. RIGHT NOW
IT SEEMS LIKE WE RELY ENTIRELY
-- NOT ENTIRELY, BUT A LOT ON
OUR NEUROETHICS RESEARCHERS TO
BRING US THESE INSIGHTS FROM THE
PARTICIPANTS, WHICH IS REALLY
GREAT BECAUSE THEY CERTAINLY
OFFER A IMPORTANT FILTER IN
SKILL SET, SYNTHESIZING THAT
INFORMATION. I WONDER AS WE TRY
TO ASSIST IN DEVELOPING GUIDANCE
IF WE MIGHT CREATE SOME STRONGER
MORE SUSTAINABLE IMPACTFUL TYPES
OF GUIDANCE IF WE SYSTEMATICALLY
ENGAGE SYSTEM OF THOSE GROUPS
AND PLUG INTO WHAT ALREADY
KISSES AND CARVE OUT SOMETHING
FOR ALL OF US, I DON'T
UNDERSTAND ALL THE COMPONENTS
BUT PEOPLE AT NIH WHO COULD
HELP. THE OTHER BIGGER QUESTION
BEFORE JOINING PUBLIC ENGAGEMENT
EXERCISE OR EXITING TO THEM
WOULD BE WHETHER BRAIN, I
BROUGHT THIS UP BEFORE IS
INTERESTED IN THE POSSIBILITY OF
HEARING CURRENT NARRATIVES WHAT
THEY ARE ALREADY DOING. THERE
MAYBE TRUE OPENNESS TO THAT,
THERE MAYBE OPENNESS TO PARTS OF
IT VERSUS OTHERS. I DON'T THINK
WE CAN -- WITH AUTHENTICALLY DO
A PUBLIC ENGAGEMENT EXERCISE
THAT IS DEFINED BY -- AS STATE
OF THE ART AS BIDIRECTIONAL
COMMUNICATION AT MINIMUM.
WITHOUT BEING ANSWER TO THAT
FIRST AND I DON'T KNOW IF WE
PLAN TO HAVE THAT CONVERSATION
NOW OR IN THE FUTURE.
>> INTERESTING, KAREN, DO YOU
HAVE AN EXAMPLE OF COUNTER
NARRATIVE THAT YOU THINK MIGHT
BE PARTICULARLY USEFUL?
>> THE RESEARCH MAYBE THE WAY
IT'SING THBEING DONE IS NOT
ACCEPTABLE. MAYBE PARTICIPANTS
DON'T THINK THAT RESEARCH SHOULD
HAPPEN, DON'T THINK A CERTAIN
USE IS ACCEPTABLE, SOMETHING
THAT FEELS IMPRACTICAL TO
SCIENTIST BUT FEELS NECESSARY
FOR PARTICIPANTS.
>> DO YOU HAVE SPECIFIC EXAMPLES
OF SOMETHING THAT MIGHT FALL
INTO THAT CATEGORY. MAYBE SOME
ORGANOID RESEARCH WOULD LEAD TO
COUNTER EXAMPLES, THROUGH SOME
CHIMERA RESEARCH?
>> I GUESS I'M THINKING MORE
SPECIFICALLY ABOUT -- THE CASES
IT SEEMED SENSITIVE IS WITH
HUMAN PARTICIPANTS STUDIES. AND
GETTING PERSPECTIVES ON WAYS IN
WHICH THAT FROM DETAILS WE HAVE
HEARD FROM RESEARCHERS LIKE SARA
AND ASHLEY IF THERE ARE CERTAIN
THINGS WE HEAR WE ARE WILLING TO
UPDATE ADJUST IN OUR PRACTICES
ARE WE WILLING DO HEAR FOR
EXAMPLE, WE TALKED ABOUT VALUE
PROPOSITION AND COMPENSATION AND
ARE WE WILLING TO LISTEN TO AND
INTEGRATE VARIETY OF
PERSPECTIVES AN LIVED
EXPERIENCES THAT DETERMINE
PROPORTION OF RISK OF THOSE
INDIVIDUALS.
>> STEVE.
>> I HAVE TWO THINGS AND BY THE
WAY THEY POINT TO THE FACT THAT
REALLY TIME FOR ME TO MOVE ON
BECAUSE I PERSEVERATE ON SOME OF
THESE THINGS. BUT ONE IS
PREDICTION. THERE ARE NOW
SEVERAL COMPANIES THAT ARE
OFFERING TO USE POLYGENIC SCORES
FOR EDUCATIONAL ATTAINMENT OR
COGNITIVE ABILITY, SO NOT JUST
DISEASE RISK LIKE TYPE TWO
DIABETES BUT COGNITIVE ABILITY
FOR EMBRYO SELECTION, PEOPLE WHO
UNDERGO IVF AND THERE IS A
COMPANY BASED AT STANFORD CALLED
ORCHID THAT WANTS TO EXTEND
THESE APPROACHES WE ALL KNOW
THAT THERE ARE AD ROW VOW KATES
FOR POLYGENIC SCORES FOR
COGNITIVE ABILITY, PERSONALIZED
EDUCATION BUT OLD DAYS CALLED
TRACK AND IT WASN'T A VERY GOOD
THING. AND WHILE THIS IS REALLY
MORE GENETICS WHEEL HOUSE, WE
IMAGINE INTEGRATING DATA TYPES
AND IMAGINE INTEGRATING
POLYGENIC SCORES WITH ADVANCED
NEUROIMAGING TECHNOLOGIES, OR
WHAT WE ARE GOING TO LEARN FROM
SINGLE CELL ATLASES. AND YOU CAN
IMAGINE PRETTY POWERFUL
PREDICTIVE MECHANISMS WHICH
COULD LEAD TO PROBLEMATIC --
THEY -- IT LEADS VERY GOOD
THINGS, RIGHT, WITH RESPECT TO
PREVENTION OF DISEASE BUT THEY
CAN ALSO LEAD TO FORECLOSING
PEOPLE'S OPPORTUNITIES AND
SOCIETY TRAGICALLY OFTEN TIPS
TOWARD THE LATTER. SO I THINK
THIS IDEA OF PREDICTION IS
IMPORTANT. THE OTHER ONE IS
UNDER THE FOR ME THE SUBJECT TO
IT OF WE LIKE TO MEASURE THE
WRONG THINGS VERY, VERY WELL.
BECAUSE THEY ARE EASILY
MEASURED. IN MEDICINE IN
NEUROLOGY AND PSYCHIATRY, IN
NEUROSURGERY WE NOW ARE WHAT WE
CAN MEASURE JUST TAKE METAPHOR
REFLEXES THOSE ARE EASY TO
MEASURE. BUT WE DON'T LIKE TO TO
MEASURE THINGS LIKE -- WHAT IS
AT THE TOP OF THE LIST THAT
CHRISTINE GAVE OUT CAME FROM
BRAIN 2.0 REPORT WHICH ARE
THINGS LIKE PERSON HOOD IDENTITY
AGENCY MORAL AGENCY AND
AUTONOMY. THESE CONCEPTS OFTEN
FEEL FOREIGN TO BRAIN SCIENTISTS
AND CLINICAL INVESTIGATORS BUT
IN FACT MAYBE AS A RESULT WE
DON'T SPEND ENOUGH TIME ON. AND
THEY DO HAVE PRACTICAL
IMPLICATION, THINGS LIKE ADVANCE
DIRECTIVES. OR LEGAL
CULPABILITY UNDER NARROW
CIRCUMSTANCES THAT NEED IT
DESCRIBED TO US BECAUSE SHE'S
STUDIED NEUROSCIENCE AND THE
LAW. OR THE QUESTION OF AUTONOMY
OR WHAT IS NOW APPEARING MORE
AND MORE IN THE NEWSPAPERS
EXPLAINING AWAY WELL PUBLICIZED
NEGATIVE BEHAVIORS OR CRIMES
BASED ON MENTAL ILLNESS, THIS IS
MAKING A COME BACK. I THINK ALL
OF THESE THOUGH THEY TEND TO BE
OUT OF THE WHEEL HOUSE OF
NEUROBIOLOGY ARE GOING TO BE
VERY IMPORTANT -- HAVE VERY
IMPORTANT IMPLICATIONS AGAIN
FROM BOSS BASIC SIDE OF THE
BRAIN BUT ALSO FROM THE KINDS OF
INTERVENTIONS THAT WE HEARD
ABOUT TODAY AND THAT WE HEARD
REFLECTIONS ON FROM ASHLEY AND
SARA. SO THOSE WOULD BE MY
SUGGESTIONS, NOT TO --
ESPECIALLY PREDICTION AND OTHER
GROUPS OF IDEAS SHOULDN'T SLIP
AWAY AND BE IGNORED.
>> I DO WANT TO PUSH BAGGEN THE
IDEA THAT ORCHID IS BASED OUT OF
STANFORD THOUGH --
>> I DID THAT FOR YOU, HANK.
>> I KNOW YOU DID. BUT ACTUALLY
YOU TOUCHED A NERVE YOU MAY NOT
HAVE REALIZED YOU WERE GOING TO
HIT, IT'S FOUNDER WAS ACTUALLY A
-- AS A SOPHOMORE WAS A STUDENT
IN MY LAW AND BIOSCIENCES
SEMINAR WHERE SHE EITHER -- SHE
SEEMED AT THE TIME TO DO WELL
THOUGH IN RETROSPECT I'M NOT
SURE I GAVE HER THE RIGHT GRADE
BUT I DO THINK THE PREDICTION
STUFF IS IMPORTANT AND THOUGH
BRAIN HAS NOT BEEN -- HAS NOT
FOCUSED ON GENETIC ISSUES
SUBSTANTIALLY, THE PREDICTION
INVOLVES ALL SORTS OF THINGS
THAT GO FAR BEYOND GENETICS FROM
STRUCTURAL AND FUNCTIONAL SORTS
OF MEASURES, BIOMARKERS,
MEASURES, ALL SORTS OF THINGS.
>> INTEGRATION ALSO MULTIPLE
DATA TYPES THAT WILL MAKE IT SO
POWERFUL.
>> YEAH. CHRISTINE.
>> SO I WANTED TO PICK UP ON
ACTUALLY BOTH WHAT WINSTON AND
KAREN WERE TALKING ABOUT AND A
LITTLE BIT WHAT STEVE WAS
TALKING ABOUT SO IN TERMS OF THE
PUBLIC ENGAGEMENT AND INVOLVING
PARTICIPANTS, I THINK THERE'S
TWO REALLY IMPORTANT WAYS THE
PUBLIC CAN BE ENGAGED. ONE IS
ENGAGING MEMBERS OF PUBLIC ARE
NOT NECESSARILY PARTICIPANTS IN
STUDIES BUT HAVE VIEWS HOW
RESEARCH OUGHT TO GO AND MIGHT
WANT TO UNDERSTAND WHAT RESEARCH
IS ALL ABOUT. THERE'S SOME
REALLY INTERESTING MODELS OF
DEMOCRATIC DELIBERATION AND
OTHER KINDS OF EXERCISES TO
ENGAGE GENERAL MEMBERS OF THE
PUBLIC IN UNDERSTANDING KINDS OF
SCIENCE AND THE VALUE OF CERTAIN
SCIENCE AND SORT OF PITFALLS OF
CERTAIN SCIENCE, SO HA IS A
REALLY INTERESTING WAY THE GO. I
ALSO THINK IT IS VERY DIFFERENT
THAN THE IDEA OF BRINGING PEOPLE
IN TO THE SYSTEM. ANOTHER MODEL
THAT MIGHT BE WORTH LOOKING AT
OR THINKING ABOUT IS THE HIV
MODEL, WHERE I SORT OF GREW UP
AND THERE ARE IN THAT RESEARCH
ENTERPRISE, THERE ARE VERY
ACTIVE CABS, MEMBERS OF THE
COMMUNITY ON SCIENTIFIC REVIEW
BOARDS, PLANNING BOARDS, ON --
AT EVERY LEVEL SO THEY HELP IN
THE PRIORITY SETTING, IN THE
DESIGN, IN THE EXECUTION OF
RESEARCH, THAT IS A VERY UNIQUE
MODEL THAT IS WORTH AT LEAST
THINKING ABOUT IN THIS CONTEXT.
I THINK KAREN'S VIEW THOUGH IS
WHAT -- KAREN'S CAUTION ABOUT
WHAT ARE WE WILLING TO DO HERE,
DO WE WANT VERY IMPORTANT THING
TO KEEP IN MIND. WITH RESPECT
TO WHAT STEVE SAID ABOUT
PREDICTION, I THINK IT RAISES
ALSO A WHOLE SET OF OTHER
QUESTIONS LIKE USE OF
NEUROSCIENCE OUTSIDE OF THE
CLINIC. YOU SAID EDUCATION AND
OTHER AREAS OF LIFE WHERE SOME
OF THE FINDINGS THAT MIGHT BE
COMING FROM THE STUDIES THAT
BRAIN IS DOING OR THINKING OF
DOING IN THE FUTURE COULD BE
USED BOTH INTEGRATE WITH OTHER
DATA AND NOT, TO MAKE DECISIONS
OUTSIDE OF THE CLINIC. SO THE
QUESTION, HOW MUCH DOES BRAIN
GET INVOLVED WITH THOSE KINDS OF
DECISIONS. AND INTERESTK IDEA
OF O IN THIS WHOLE WORLD OF
PREDICTION, HOW MUCH PUBLIC
ENGAGEMENT MIGHT BE USEFUL THERE
TO SORT OF THINK ABOUT LIMITS ON
THOSE PREDICTIVE ALGORITHMS IF
LIMITS ARE ON THE TABLE. AND ONE
LAST THING. STEVE MENTIONED WE
DON'T DO WELL MEASURING AGENCY
AND AUTONOMY IN THOSE ISSUES. I
AGREE, STEVE, WE DON'T AND I
HAVE IMPRESSED BY SARA'S STUDY
WHERE SHE PART OF WHAT THEY ARE
TRYING TO DO IS UNDERSTAND
AGENCY SO FUND MORGUE RESEARCH
LIKE THAT, THAT CAN HELP US
REALLY DELVE INTO SOME OF THOSE
COMPLICATED CONCEPTS AND
PHENOMENON AND UNDERSTAND THEM
FROM PERSPECTIVE OF PEOPLE WE
ARE WORKING WITH, IS A REALLY
VALUABLE WAY TO GO FORWARD.
>> SO I DO THINK SOME OF WHAT
STEVE BROUGHT UP RAISES A DEEP
QUESTION ABOUT THE NEWG AND THAT
IS ARE WE LOOKING, IT HAS BEEN
CLEAR WE ARE NOT A GENERAL
NEUROETHICS GROUP. WE ARE GIVING
INPUT TO THE BRAIN INITIATIVE.
WE ARE PART OF THE BRAIN
INITIATIVE, ARE WE LIMITED TO
ONLY THINGS THAT THE BRAIN
INITIATIVE DOES. THAT ARE
DIRECTLY AFFECTED OR SOMEWHAT
INDIRECTLY AFFECTED BY THE BRAIN
INITIATIVE. IT IS AN IMPORTANT
QUESTION GOING FORWARD. HOW
CLOSE THE NEWG NEEDS TO BE TIED
TO THE BRAIN INITIATIVE WHICH
HASN'T BEEN DOING A LOT OF THIS
PREDICTIVE WORK THOUGH I SUSPECT
THERE IS SOME OUT THERE. BUT
CERTAINLY THE TOOLS THE BRAIN
INITIATIVE IS WORKING ON COULD
PLAY A ROLE IN SOME OF THAT. I
WOULD SAY STEVE ALSO IT IS NOT
JUST PREDICTIVE BUT EARLY
DIAGNOSTIC. SO THINGS LIKE BLOOD
SERUM BIOMARKERS FOR ALZHEIMER'S
DISEASE ALSO HAVE SUBSTANTIAL
EFFECTS IF THEY BECOME VALIDATE
AND WIDELY AVAILABLE. IT IS
SOMETHING THE NEWG SHOULD BE
TAKING ON OR NOT, THE QUESTION
ABOVE MY PAY GRADE.
>> I'M MORE CONCERNED ABOUT THE
NON-MEDICAL. I THINK WHEN IT WAS
POSSIBLE TO PREDICT HUNTINGTON'S
DISEASE BEGINNING AROUND 1990,
SOME OF THE QUESTIONS LIKE SERUM
-- AN EASIER SERUM TEST FOR
ALZHEIMER RISK STARTED TO GET
RAISED BUT I DO THINK -- I THINK
SOME OF THE IMAGING TECHNOLOGIES
THAT HAVE AT LEAST BEEN
FACILITATED BY BRAIN HAVE BEEN
-- HAVE REASONABLE CORRELATIONS
WITH COGNITIVE ABILITIES AND
PUNITIVELY WITH IQ. I HAVEN'T
READ THAT LETTER CAREFULLY.
AGAIN, EVEN THOUGH BRAIN ISN'T
DOING THE KIND OF POPULATION
GENETICS CERTAINLY THE GENETICS
OF COGNITIVE ABILITY AND
PUNITIVELY OF EDUCATIONAL
ATTAINMENT IF INTEGRATED WITH
SOME OF THAT IMAGING WORK AND
POTENTIALLY SINGLE CELL WORK
WHICH WE WILL GET TO IN BIOLOGY,
I THINK IF NOT THE NEWG THEN
WHO. SOMEBODY SHOULD BE TAKING
THIS UP FROM A VERY
SOPHISTICATED POINT OF VIEW. AND
NOT JUST TRASH ALL OF IT AHEAD
OF TIME BUT TO UNDERSTAND WHAT
ACTUALLY HOW GOOD IS PREDICTION
AND ALSO HOW PROBABILISTIC AND
WHAT ARE -- AND IF YOU APPLY
THAT TO POLICIES OUTSIDE OF
MEDICINE, WHAT -- ARE THERE
BENEFITS? I ALWAYS SEE THE RISKS
BUT YOU KNOW, THERE MAYBE
BENEFITS AS WELL.
>> SO I THINK THE ORDER THE
HANDS WENT UP A LITTLE
DIFFERENTLY THE WAY THEY
DISPLAYED ON MY SCREEN. NITA
NEXT THEN CHRISTINE, JOHN AN
JIM.
>> THANKS, HANK. SO I WANT TO
COMMENT ON KIND OF WHERE I HOPE
WE GO IN THREE DIFFERENT WAYS.
ONE IS TOPICALLY WHICH IS I DO
THINK LOOKING AT AREAS OF
INTERSECTION WITH NEUROETHICS
INCLUDING GENETICS BUT ALSO
ARTIFICIAL INTELLIGENCE, IS AN
AREA REALLY VALUABLE FOR US TO
MOVE INTO, THERE'S SO MANY
ISSUES THAT OVERLAP THAT WE
HAVEN'T REALLY TOUCHED UPON. I
ALSO WOULD LIKE FOR US TO FOCUS
MORE ON MISINFORMATION BOTH AT
EFFECT ON BRAIN BUT ALSO HOW
MISINFORMATION SPREADS,
MISINFORMATION IN AGE OF COVID,
WHAT WE MIGHT BE ABLE TO DO IN
ASSISTING WITH THAT, WHICH
BRINGS ME TO SOME WHAT I HOPE WE
DO, PART I HOPE WE HOLD MORE
WORKSHOPS, THAT WOULD BE
TANGIBLE WORKSHOPS FOR PEOPLE
WHO ARE INVESTIGATORS IN THE
BRAIN AND OTHERS AND THAT
INCLUDE THINGS LIKE SCIENCE
COMMUNICATION WORKSHOPS. I'M
VERY IMPRESSED WITH PROJECT HALO
ENGAGEMENT TRAINING SCIENCETISES
TO DEVELOP TIKTOK VIDEOS TO
SPREAD INFORMATION TO COMBAT
MISINFORMATION AND I WOULD LOVE
FOR US TO SEE, LOVE TO SEE US
ENGAGED IN MORE SKILLS BASED
WORKSHOPS. WHICH INCLUDES
STRATEGIES FOR INTEGRATION OF
ETHICS INTO RESEARCH PROGRAMS.
HOW -- WHAT ARE DIFFERENT MODELS
THAT RESEARCH TEAMS USE, WHAT
REQUEST THAT LOOK LIKE FOR REAL
WORLD INTEGRATION. ALSO THINGS
LIKE HOW TO UNDERTAKE A GOOD
PROCESS DEMOCRATIC DELIBERATION.
WHAT ARE GOOD MODELS FOR
DEMOCRATIC DELIBERATION SO
THINGS THAT ARE THE TEACHING
ROLE IN SOME WAYS, A
BIDIRECTIONAL CONVERSATION IN
OTHER WAYS. THINGS THAT COULD
ALLOW US TO REALLY BE ABLE TO BE
ABLE TO PROVIDE MORE OF A
SERVICE AND PRO SEAL DO YOU
RECALLLY I HOPE THERE'S SOME
THINGS THAT PAST EXPERIENCES WE
START TO SHORE UP LIKE ONE OF
THEM IS I THINK ETHICS
CONSULTATIONS HAVE TAKEN
DIFFERENT FORMS OVER TIME NEWG
IS CONSTITUTED, LOVE FOR US TO
COME UP WITH WHAT IS MEANT BY
ETHICS CONSUL STATION, WHAT IS
THE GOAL, WHAT IS THE PRODUCT
EXPECTED. WHAT DOES THE
PROCEDURE LOOK LIKE AND
FOLLOWING THROUGH ON PRODUCTS IF
WE ARE GOING TO PROVIDE ADVICE
AND COUNCIL, I KNOW WE DON'T
TECHNICALLY, IS THERE A MEMO
WRITE UP, IS THERE GOING TO BE
WHAT WHAT IS T IT THAT
INVESTIGATORS HOPE FOR OR
EXPLAIN. I ALSO WOULD LIKE
PROCEDURALLY FOR US TO BE MORE
ENGAGED WITH OTHER GROUPS THAT
ARE DOING NEUROETHICS. SO IF FOR
EXAMPLE WE DO SKILLS BASED
WORKSHOP, WORKING WITH OTHERS
WHO ARE DOING THE SAME, WORKING
MORE EXPLICITLY WITH IEEE AS
THEY ARE DEVELOPING THEIR
GUIDELINES WORKING MORE
EXCLUSIVELY WITH THE
INTERNATIONAL NEUROETHICS
SOCIETY, WITH OTHER
ORGANIZATIONS THAT ARE
UNDERTAKING THESE SIMILAR IDEAS
TO REACH OUT AND BE PART OF
INNER TRADITIONAL COMMUNITIES
THAT IS OUT THERE. THOSE ARE
SOME OF THE THINGS WE HOPE WE'LL
DO AS NEWG AS WE MOVE FORWARDS.
>> THANK YOU. JOHN.
>> I SEE JIM AND KAREN HAD THEIR
HANDS UP, IF YOU ALLOW ME TO
HAVE THE LAST WORD THAT WOULD BE
FINE.
>> I'LL ALLOW YOU TO HAVE AT
LEAST THE NEXT TO LAST WORD BUT
MAY KEEP THE LAST WORD FOR
MYSELF.
>> THANKS, HANK.
THREE POINTS THAT I WANT TO
COMMENT ON COUPLE HAVE BEEN
MENTIONED BY OTHERS. ONE IS
SEVERAL THINGS DISCUSSED TODAY.
WE ARE PART OF NEUROETHICS
REPORT THAT CAME OUT ABOUT A
YEAR AND A HALF AGO NOW SO THERE
IS SOME BACKGROUND WITH ASPECT
OF THAT, THAT DRIVE ASPECTS OF
THIS. ONE IMPORTANT THING THAT
CAME OUT OF THAT REPORT WAS IDEA
OF CONSCIOUSNESS. AND I DO THINK
ONE CAN THINK ABOUT NEWG BEING
MORE INVOLVED IN DOING WHAT THE
BRAIN ANYWHERETIVE HAS DONE SO
WELL IN THE PAST. ONE REASON THE
SINGLE CELL INITIATIVE AND OTHER
COMPONENTS OF THE WORKING GROUP
EFFORTS HAVE WORKED IS BECAUSE
IT ENGAGED PEOPLE FROM DIFFERENT
DISCLINES AND CHEMISTS ENGINEERS
MOLECULAR BIOLOGISTS. AND I
THINK THE NEWG COULD POTENTIALLY
DO A WORKSHOP OR SPONSOR GROUP
OF SCIENTIST TALK ABOUT
CONSCIOUSNESS FROM BIOLOGICAL
PERSPECTIVE TO ETHICAL
PERSPECTIVE PHILOSOPHICAL
PERSPECTIVE AND TRY TO COME TO
SOME IDEA ABOUT HOW TO APPROACH
THIS IDEA FROM ETHICAL AND
POTENTIALLY SCIENTIFIC
PERSPECTIVE TO HELP MAYBE GIVE
GUIDANCE TO MULTI-COUNCIL
WORKING GROUP SO I THINK THERE
IS ROOM FOR DOING THAT. ONE
OTHER THING THAT'S PROBLEMATIC
IN THIS SORT OF GOES STEVE'S
COMMENTS IN OFFHAND WAY, IS ONE
OF THE ISSUES WITH HUMAN STUDIES
PARTICULARLY IN BRAIN IS POWER.
HOW MANY SUBJECTS PATIENTS USED
TO GENERATE DATA PEOPLE ARE
CLAIMING TO HAVE GENERATE SOD
THIS IS WHERE THE IDEA USING
DIFFERENT TAPES OF DATA SETS
MAYBE VERY IMPORTANT. MAYBE I
CAN DECREASE POWER WITH MULTIPLE
DATA SETS THAT ARE WORKING
TOGETHER TO INFORM POTENTIAL
TYPE OF OUTCOME. SO I DO THINK
THAT SOME DISCUSSION AND WORK
RELATED TO HOW TO THINK ABOUT
HOW TO GET HARD CORE DATA THAT
GUIDES ETHICAL DISCUSSIONS AND
MOVE ETHICAL CONSULTATION
FORWARD WOULD BE USEFUL SO
THERE'S INNER MIXING THAT WOULD
BE IMPORTANT. FINALLY NITA
MENTIONED THIS IDEA OF WORKING
WITH OTHER GROUPS, AND I WANTED
TO AGREE PARTICULARLY WITH
RESPECT TO THE INTERNATIONAL
COMMUNITY, HOW KAREN'S LED AN
EFFORT IN THIS, OR BEEN INVOLVED
IN EFFORT IN THIS FOR THE LAST
FEW YEARS. I DO THINK THAT IF
THE NEWG WERE MAYBE TO HAVE ONE
MEETING A YEAR, NOT OUR STANDARD
-- BUT ADDITIONAL MEETING A
YEAR, PERHAPS WHERE
INTERNATIONAL COMMUNITY AND
INTERNATIONAL BRAIN GROUPS GET
TOGETHER DISCUSS FOR AN
AFTERNOON OR DAY THINGS THEY ARE
WORKING ON TO SEE IF THERE MIGHT
BE POTENTIAL INTERACTIONS OR
COLLABORATION TO COME FROM THAT,
WE CAN CERTAINLY LEARN FROM EACH
OTHER AND I THINK CODIFY THAT
INTO POTENTIAL MEETING AT LEAST
ONCE A YEAR MIGHT BE USEFUL. SO
THOSE ARE THE THINGS I WANT TO
HIGHLIGHT.
>> THANKS, JIM. THE
INTERNATIONAL MEETING IS
INTRIGUING, NOT JUST NATIONAL OR
REGIONALLY ORGANIZED PRODUCTS
REVOLUTIONIZED OR GROUP THINGS
LIKE IEEE OR OECD WHICH ARE
PARTICULAR NATIONAL BRAIN
PROJECTS BUT IT MIGHT BE FUN TO
HOST -- VIRTUALLY HOST, A
MEETING OF LOTS OF DIFFERENT
PARTICIPANTS. SO REPRESENTATIVES
OF LOTS OF DIFFERENT GROUPS.
KAREN.
>> I REALLY LIKED ESPECIALLY
NITA'S AND JIMS COMMENTS, SEEMS
LIKE -- AND I LIKE THE SKILLS
BASED WORKSHOPS, I LIKE THE IDEA
OF BEING INTENTIONAL ABOUT
ETHICS CONSULTATIONS AND ALSO
HOW WE ENGAGE WITH OTHER GROUPS
AND WONDER IF IT MIGHT BE A GOOD
FILE TO DO A SELF-ASSESSMENT NOT
SURE WE HAVE TO SEE HOW WELL WE
DELIVERED ON WHAT WE SAID WE
WOULD DO AND ALSO IF WE HAVE
CHANGE GOALS AND METRICS WE CAN
USE, WE KEEP TALKING ABOUT HOW
EVERYONE ELSE NEEDS TO BE
EMPIRICAL AND MIGHT BE WORTH
DOING A ROUGH SKETCH OF HOW WE
HAVE BEEN DOING. MAYBE HAVE MORE
INFORMED APPROACH HOW TO BE MORE
IMPACTFUL LATER OR AREAS WE HAVE
IMPACTFUL AND IMMEDIATE TO KEEP
GOING. I DON'T KNOW P ANYONE IS
COLLECTING THAT INFORMATION OR
IF SOME OF THAT IS HAPPENING
OFFLINE. ALSO WANT TO REITERATE
WHAT JIM SAID ABOUT CONNECTING
AND NITA TOO WITH THE BROAD
COMMUNITY, A LOT OF THINGS THAT
WERE PROPOSED LIKE SKILLS BASED
WORKSHOPS AND NEUROETHICS
EDUCATION, THERE'S SEVERAL
GROUPS WHO BUILT THAT AND ARE
COLLABORATING TOGETHER LIKE EBRO
AND HPB AND INS RECENTLY SOME
CONNECTIONS TO THAT WITH THE
BOARD THERE. AND ALSO AS FAR AS
ENGAGEMENT PIECES HBP HAS VERY
ELABORATE PROCESS THEY WOULD I'M
SURE BE WILLING TO SHARE. THEN
THERE ARE TWO BROADER LANDSCAPE
QUESTIONS THAT I HAVE WONDERED,
WHETHER WE WANT TO BE PART OF
AND ONE IS LECD, MENTIONED BY
HANK, IT IS IMPLEMENTATION OF
NEURAL RESPONSIBLE
RECOMMENDATION ON RESPONSIBLE
INNOVATION AND NEURAL TECHNOLOGY
WHICH IS A LEGAL INSTRUMENT
DECEMBER 2019 AND NOW ALL MEMBER
COUNTRY ALSO HAVE TO REPORT BACK
BY 2024 HOW THAW IMPLEMENTED
THAT. IT MIGHT BE INTERESTING
FOR US TO BE PART OF THAT
CONVERSATION OR THINKING ABOUT
AREAS OF ALIGNMENT FOR HOW WE
CAN IMPLEMENT WITHIN BRAIN, AND
THEN THE OTHER IS EVEN WITH THE
DATA SHARING PIECE THAT WAS
MENTIONED E BRAINS THIS MORNING
PARTICIPATED IN EXPERT
CONSULTATION ON ITS VISION HOW
THEY PLAN TO DEVELOP STRATEGY
FOR THAT VISION LATER AND MAYBE
THAT'S SOMETHING WE SHOULD ALSO
BE CONSIDERING. BUT I THINK IT
MATTERS FROM PIR SPECKTIVE OF
BRAIN BECAUSE WE AREN'T DECISION
MAKERS IN OUR GROUP HERE, WHAT
WE SHOULD BE DOING AND IF THAT
WOULD BE -- WOULD EVEN ENGAGING
IN THE BROADER COMMUNITY LIKE
THAT BE PART OF A SUCCESS METRIC
FOR US OR IS THAT GOING TO
DIFFUSE OUR EFFORTS TOO MUCH AND
THERE'S A LOT OF SPECIFIC THINGS
TO DO TOO. SO IT WOULD BE GOOD
IF -- DOES HAVE THE SECOND TO
LAST WORD TO ELABORATE.
>> GREAT SEGUE LAST PART IN
PARTICULAR, OVER TO JOHN.
>> APPRECIATE ALL THESE COMMENTS
AND THOUGHTS. MANY -- ACTUALLY
ALL RESONATE DEEPLY WITH ME. IN
THINKING BIG PICTURE ISSUES,
THEY HAVE ALL BEEN MENTIONED TOP
OF MY LIST WAS THE ISSUE OF
AGENCY, WE HAVE BEEN TALKING
ABOUT THAT FOR A WHILE. UNLIKE
OTHER INTERVENTION IN HUMANS
ONCE YOU START MODULATING OR
PLAYING WITH PERSON -- A
PERSON'S BRAIN YOU ARE ACTUALLY
RUNNING REAL RISK NOT JUST
IMAGINARY RISK OF INTERFERING OR
CHANGING THEIR AGENCY AND THEIR
AUTONOMY SO THAT IS A BIG ONE.
WE TALKED ABOUT DATA USE AND
DATA MISUSE WHICH ALSO TOUCHES
ON PRIVACY ISSUES THAT -- I HOPE
WE WILL GET TO WORKSHOP OF OUR
OWN ON THAT AND THESE ARE
WORKSHOPS BUBBLING UP ELSEWHERE.
A BIG ISSUE WE HAVE BEEN
GRAPPLING WITH TOGETHER WITH
REST OF THE WORLD ARE ISSUES OF
EQUITY AND ACCESS AND ENGAGEMENT
AND DOING BETTER JOB ENGAGEMENT
UNDERSTANDING NOT JUST WITH WHOM
TO ENGAGE BUT HOW TO ENGAGE WILL
BE VERY, VERY IMPORTANT. SO I
THINK THE NEWG CAN HELP PLAY --
CONTINUE TO PLAY A ROLE IN
ADDRESSING ISSUES LIKE THAT. ONE
THING I JUST WANT TO BRING THIS
BACK TO AND I WILL COME BACK TO
THE LAST YEAR AS AN EXAMPLE OF
THIS, IS THAT BRAIN IS SMALL.
BRAIN IS TINY IN COMPARISON TO
THE REST OF NIH AND EVEN SMALL
IN COMPARISON TO REST OF
NEUROSCIENCE COMMUNITY FUNDED
RESEARCH BY NIH. BUT WE ARE
DOING THINGS IF NOT AT CUT EDGE
OFTENTIMES THE LEADING EDGE, AS
WE GET INTO MANY ISSUES HERE
TODAY WE DO NEED TO BE CAREFUL
AND BE AHEAD OF THE GAME ON
THIS, IN TERMS OF NEWG REMIT OF
NEWG IS TO ADVISE BRAIN IN THESE
AREAS. AND I WILL BE FIRM ON
THAT. THAT'S NOT TO SAY THAT
BRAIN AND NEWG AND THEREFORE
BRAIN CANNOT HAVE MUCH LARGER
OUTSIDE SIZED IMPACT ON REST OF
THE FIELD. WE ARE SEEING THAT
ALREADY. WE HAVE PLENTY OF
THINGS TO WORRY ABOUT THAT ARE
AT THE LEADING EDGE THAT WE
SHOULD STAY FOCUSED ON THAT WILL
IN FACT HELP GENERAL FIELD OF
NEUROSCIENCE AND HUMAN
NEUROSCIENCE RESEARCH AS WELL AS
BIOMEDICAL RESEARCH IN GENERAL I
WOULD THINK. AND I JUST WANT TO
BRING UP TWO EXAMPLES THAT I
WORK QUITE WELL THAT BENEFITED
ME AS DIRECTOR, THE PROGRAM IN
GENERAL. THAT IS THE EFFORTS
THAT WE UNDERTOOK OVER THE LAST
YEAR, YEAR AND A HALF, AT THE
START OF THE BLACK LIVES MATTER
MOVEMENT, THE FINAL RECOGNITION
THAT WE DO HAVE A PROBLEM WITH
RACISM IN PARTICULAR ANTI-BLACK
RACISM AND HOW NOBODY CAN REALLY
FILAREE LEAVED OF ADDRESSING IT
IN ALL THE WORK THAT WE DO. THIS
COMES DOWN TO THE PEOPLE DOING
THE RESEARCH, DECIDING WHAT THE
STUDY -- WHAT TO STUDY AND
GIVING ACCESS DEMOCRATIZING
ACCESS ACROSS THE BOARD. SO I
THINK WE HAVE TWO VERY IMPORTANT
ADVANCES THAT CAME OUT OF BRAIN
THIS PAST YEAR. ONE OF THOSE WAS
DEMAND FOR HAVING DIVERSE
PERSPECTIVES AND OUR RESEARCH
TEAMS THAT WILL IMPACT THE
RESEARCH YOU DO OVER THE LONG
HAUL. BRAIN IS TINY BUT WE ARE
SEEING UPTAKE ON PLAN FOR
ENHANCING DIVERSE PERSPECTIVES
REQUIREMENT ACROSS THE NIH AND
THAT'S DOVE TAILING WITH THE
FINAL RECOGNITION AND PEOPLE
WALKING THE WALK OF DEALING WITH
THIS IN A PROACTIVE AND
CONSTRUCTIVE WAY. THIS IS AN
AREA THAT FRANKLY WE RECEIVED A
LOT OF GREAT FEEDBACK AND
SUPPORT FROM NEWG AND SWG. THE
OTHER IS SETTING OF LARGE HUMAN
CELL ATLAS PROJECT WHICH WILL BE
LAUNCHING --
WHICH WILL BE LAUNCHING IN THE
NEXT YEAR OR SO, AND WE APPROACH
THE VERY CRITICAL ISSUE OF WHO
ARE WE GOING TO STUDY AND THE
IMPORTANCE OF DIVERSITY IN OUR
HUMAN SUBJECT POPULATION THE
MAKE THESE TOOLS AND RESOURCES
TRULY USEFUL, THIS CAME OUT
DIRECTLY FROM CONVERSATIONS AT
NEWG AND IN PARTICULAR A PAPER
THAT STEVE HYMAN SENT THE NIGHT
BEFORE THE MEETING WHILE HAVING
THIS VERY INTENSE EMAIL EXCHANGE
AND I THINK THIS REALLY WAS A
WATER SHED MOMENT FOR MYSELF AND
I HOPE FOR THE FIELD AND
SOMETHING THAT'S BEING ADOPTED
ACROSS THE DOMAIN, INCLUDING BY
OTHER FUNDERS WHO ARE INTERESTED
IN DEVELOPING COMPREHENSIVE
HUMAN CELL ATLASES. SO I HOPE
THESE KINDS OF APPROACHES
CONTINUE TO HELP INFORM HOW TO
PROCEED IN THESE TRICKY AREAS
WHERE WE MAY NOT ACTUALLY KNOW
WHERE ALL THE PROBLEMS ARE. AND
I THINK THEY WILL HELP US NOT
ONLY SOLVE OUR OWN ISSUES AND
PREVENTING US FROM GETTING IN
TROUBLE BUT SERVE AS EXAMPLE FOR
THE REST OF THE FIELD SO BRAIN
CAN HAVE OUTSIZE IMPACT IF WE
FOCUS ON THINGS IN FRONT OF US
AND AS I THINK WAS IT KAREN
ANITA SAID IF WE FOCUS ON
DEVELOPING SKILLS AND SOLUTIONS
AND THINGS PEOPLE CAN ACT ON WE
CAN HAVE OUTSIZE IMPACT ON THE
FIELD IN GENERAL GENERAL. SO THOSE ARE
MY TWO CENTS AND COMMENTS AND I
WILL PASS IT BACK TO YOU.
>> I DON'T HAVE WAY IN THE MUCH
OF COMMENTS OTHER THAN TO SAY I
THINK THIS IS A GOOD THING IT IS
BEING RECORDED BUT HERE WE ARE
INTO THE FOURTH HOUR OF ZOOM
MEETING NOT SURE HOW MANY GREAT
IDEAS I JUST HEARD HAVE STUCK IN
MY BRAIN BUT HAPPILY RECORD AND
TRAN SCIENCED AN DISCUSSED AS
NEWG TRIES TO FIGURE HOW TO
MAXIMIZE USEFUL IMPACT FOR BRAIN
INITIATIVE NEUROSCIENCE AND TO
BE REALLY GRANDIOSE FOR HUMANITY
AS A WHOLE. SO THANKS TO
EVERYBODY WHO SPOKE UP ABOUT
THEIR THOUGHTS. ABOUT WHAT NEWG
SHOULD BE DOING. WE MOVE INTO
THE LAST SEGMENT OF TODAY'S
MEETING. WHICH IS THE ROUND
TABLE WHERE I INVITE PEOPLE ON
THE NEWG TO TALK ABOUT LET US
KNOW ANYTHING THAT YOU KNOW OF
THAT'S GOING ON THAT MIGHT BE A
GENERAL INTEREST. I ACTUALLY
WILL START WITH A QUESTION. THIS
IS SOMETHING I KNOW ABOUT BUT I
WONDER IF THERE IS ANY SUCH
THING, AFTER I REALIZE WE ARE
COMING UP ON THE 20TH
ANNIVERSARY OF THE DANA MEETING
MAY OF 2002 WHICH I DO THINK WAS
THE BEGINNING OF WHAT I CONSIDER
MODERN NEUROETHICS, DOES ANYBODY
KNOW OF ANYTHING GOING ON TO TRY
TO COMMEMORATE IT AND REMEMBER
IT NEE MOREIALIZE IT IN ANYWAY?
NOT SEE -- MEMORIALIZE IT IN ANY
WAY?
>> NITA HAS HER HAND UP.
>> HI, NITA.
>> SINCE NOBODY KNOWS ANYTHING
ABOUT THAT, PROBABLY TOO LATE TO
ORGANIZE ANYTHING FOR THAT,
MAYBE WE WILL LOOK FOR THE 25TH
ANNIVERSARY. ROUND TABLE
CONTRIBUTIONS. RAISE YOUR HANDS,
NITA.
>> I THINK I HAVE UPDATED FOLKS
ON THIS IN THE PAST BUT I WANTED
TO UPDATE PARTICULARLY SINCE JIM
MENTIONED CONSCIOUSNESS. I'M
SERVING AS THE REPORTER WHICH IS
LIKE THE OUTSIDE EXPERT. FOR THE
UNIFORM LAW COMMISSIONS DRAFTING
EFFORT ON RECONSIDERING THE
UNIFORM DECLARATION OF DEATH ACT
WHICH IN PARTICULAR FOCUSES ON
THE NEUROLOGICAL CRITERIA FOR
DEATH. SEVERAL ARE SERVING ISING
AS OBSERVERS ON THAT PROCESS,
OTHERS HAVE DIRECTED PEOPLE MY
WAY WHO SHOULD BE PARTICIPATING
IN THE PROCESS LIKE FOR EXAMPLE
TRANSPLANT COMMUNITY OR OTHER
FOLKS WHO SHOULD BE AT THE TABLE
FOR THOSE CONSIDERINGS. THOSE
OF YOU WHO DON'T KNOW THE
UNIFORM LAW COMMISSION, IS A
COMMISSION WHERE EVERY STATE HAS
REPRESENTATIVES WHO ARE
COMMISSIONERS WHO ADOPT
DIFFERENT STATUTES THAT SERVE AS
MODEL LEGISLATION FOR STATES FOR
UNIFORMITY OF LAW WOULD BE
USEFUL. AND OBVIOUSLY DEFINITION
OF DEATH THAT IS A USEFUL PLACE
TO HAVE UNIFORMITY OF LAW AND
HOW THE COUNTRY DEFINES BOTH
WHAT HOW DEATH IS DEFINED BUT
ALSO THE CRITERIA FOR
ESTABLISHING DEATH. WE HAD A
YEAR LONG STUDY COMMITTEE WHICH
STUDIED THE ISSUE IT WENT
FORWARD INTO WHAT IS NOW A
DRAFTING COMMITTEE SO WE ARE
WORKING ON REDRAFTING OR
UPDATING THE DRAFTING WITH
RESPECT TO EMERGING NEUROSCIENCE
AND OTHER ISSUES THE EUDA, WE
ARE ABOUT TO START THE PROCESS
OF REVIEWING POSSIBLE DRAFTS SO
I WELCOME ANYONE TO CONTRIBUTE
TO SEND ME NAMES TO PEOPLE WHO
YOU THINK OUGHT TO BE AT THE
TABLE IF THEY ARE NOT ALREADY
BECAUSE THERE ARE POSSIBILITIES
FOR PEOPLE TO SERVE AS OUTSIDE
OBSERVERS WHO ARE EXPERTS THAT
COME TO THE TABLE FOR
CONVERSATION BUT OBVIOUSLY AN
IMPORTANT ISSUE FOR NEUROETHICS
AND QUESTIONS OF CONSCIOUSNESS
AND HOW WE MEASURE CONSCIOUSNESS
TURN OUT TO BE QUITE IMPORTANT
FOR HOW WE ARE THINKING ABOUT
DRAFTING AS WELL.
>> THANK YOU. SAMEER.
>> THANKS. TWO QUICK THINGS. ONE
IS WE TALKED ABOUT ACTUALLY
GROUPS IN PAPER NEURON EARLIER
FOOD, THERE WAS A ARTICLE
SCIENCE PIECE ON THAT WHO MANY
MAY HAVE ALREADY SEEN. ON SOCIAL
MEDIA AND VARIOUS THINGS BUT I
CAN PUT THEM IN CHAT IF PEOPLE
LIKE TO READ IT BUT THERE IS AN
WELL WRITTEN PIECE THAT BRINGS
UP INTERESTING POINTS. AS THEY
RELATE TO TRUST, TRUST ABOUT
SURGICAL PROCEDURE SHOUT
AUTOMATICALLY CARRY OVER TO
TRUST ABOUT RESEARCH. NOT
INTENTIONALLY, THERE'S
INTENTIONAL POINTS ABOUT MICE
BUT UNINTENTIONAL THINGS A BASED
ON WHAT PATIENTS SAID, THAT ARE
THOUGHT PROVOKING. I CAN PUT
THAT IN THERE IN CASE PEOPLE
HAVEN'T SEEN IT. ASSN MEETING,
NEUROSURGERY DEALS WITH THINGS
THEY ARE TALKING ABOUT IN TERMS
OF RESEARCH PIGGY BACKED TO
NEUROSURGERY OPPORTUNITIES,
MEETING IN JUNE, THIS WHOLE
SECTION AT LEAST -- ON
NEUROETHICS SO PEOPLE WHO ARE
INTERESTED IN THAT CAN CERTAINLY
(INAUDIBLE) --
>> IT'S BECOME A FAIRLY COMMON
FEATURE OTTOMITEING BUT THE PICK
UP IS INCREASING STEADILY FOR
ALL THE REASONS THAT YOU
WOULDN'T EXPECT. I WILL PUT A
LINK INTO THE CHAT ON THAT TOO.
>> THANK YOU. SID.
>> HI, EVERYBODY. MY MAIN
ANNOUNCEMENT IS MY BOOK ON
DISORDERS OF CONSCIOUSNESS NOW
YOU CAN'T SEE IT BECAUSE OF MY
WEIRD CAMERA, EXISTS AS A THING
OUTSIDE MY BRAIN NOW. WHICH I'M
VERY HAPPY, THERE YOU GO. YOU
CAN KIND OF SEE IT THERE. IT HAS
A NICE COVER. I'M VERY HAPPY TO
BE DONE WITH THAT. I HOPE WE DO
MORE WORK ON CONSCIOUSNESS
OBVIOUSLY.
>> THE PEN STRUCTURE IN ENGLISH
SO USEFUL, IT IS HARD TO SAY
THAT IT IS FUN -- IT IS GOOD TO
BE WRITING A BOOK BUT IT IS
CERTAINLY EASY TO SAY IT IS GOOD
TO HAVE WRITTEN A BOOK. TO HAVE
PUBLISH AD BOOK.
CONGRATULATIONS.
>> THANK YOU.
>> OTHER COMMENTS. OTHER THINGS
GOING ON PEOPLE SHOULD KNOW
ABOUT?
>> WELL LOOKS LIKE WE HAVE GOT
SOMETHING IN CHAT. FROM WALTER.
NEUROCRITICAL CARE SOCIETY HAS A
CAMPAIGN ON CURING COMA
PREDICTING RECOVERY OR
NON-RECOVERY FROM COMA.
INTERESTING. THAT A NEW HAND OR
OLD HAND NITA? AN OLD HAND. ALL
RIGHT. LET'S CONCEIVABLE WE
MIGHT ACTUALLY GIVE YOU A FEW
MINUTES OF FOUND TIME.
CHRISTINE, JOHN, ANY LAST WORDS?
>> ONLY TO THANK EVERYBODY FOR
THEIR CONTRIBUTIONS AND
ENGAGEMENT AND GREAT DISCUSSION
AND GOOD IDEAS. IT IS NICE TO
SEE Y'ALL ON THE SCREEN, WISH I
COULD SEE YOU IN PERSON SOME
DAY.
>> SOME DAY.
>> DITTO. THANK YOU ALL SO MUCH
FOR GREAT -- FOR US IN
CALIFORNIA MORNING DISCUSSION
LOOKING FORWARD TO DOING MUCH
MORE MOVING AHEAD ON SOME OF
THESE ISSUES AND HOPEFULLY
SOONER RATHER THAN LATER SEEING
EVERYONE IN PERSON AGAIN, NICE
TO DO. ALL RIGHT. ENJOY YOUR
FOUND SIX MINUTES AND WE WILL
SEE YOU SOMETIME. BYE-BYE ALL.