>>WELCOME
-- IN PERSON AND VIRTUAL
ATTENDEES AND JOINING US FOR THE
WORKSHOP.
I'M SASKIA HENDRIKS AND FACULTY
MEMBER IN THE DEPARTMENT OF
BIOETHICS AT NIH.
AS MANY MAY KNOW THE NEUROETHICS
WORKING GROUP IS NOT A FORMAL
ADVISORY GROUP.
IT'S A WORKING GROUP OF OUR
ADVISORY COUNCIL SO THE NIH
INSTITUTES AND CENTERS THAT
PARTICIPATE IN THE BRAIN
INITIATIVE AND WAS ESTABLISHED
BECAUSE OF THE NEED FOR ETHICS
CONSIDERATION SUPPORTED THROUGH
THE BRAIN INITIATIVE.
THE NEW DOCKETS AND DELIBERATE
ON ETHICAL QUESTIONS THAT COME
UP IN BRAIN RESEARCH AND SERVE
AS THE FOUNDATION FOR TODAY.
A FEW HOUSEKEEPING THINGS BEFORE
WE GET STARTED.
AS A REMINDER, THIS WORKSHOP IS
BEING VIDEOCAST LIVE IN A PUBLIC
DOMAIN AND RECORDING ARCHIVED
LATER IN THE NIH AND BRAIN
WEBSITE.
DURING THE PRESENTATIONS WE ASK
VIRTUAL ATTENDEES MUTE YOUR LINE
AND TURN OF OUR VIDEO WHEN NOT
SPEAKING.
THIS IS HELPFUL FOR THE
VIDEOCAST.
WE ASK OUR SPEAKER TO KEEP TRACK
OF THEIR OWN TIME SO WE HAVE
ENOUGH TIME FOR DISCUSSIONS.
DURING THE DISCUSSIONS, TO ASK
QUESTIONS, THE IN COMPLIANCE IN
PERSON AND IF THERE'S TECHNOLOGY
PROBLEMS CONTACT DEREK SMITH.
WE'LL INCLUDE HIS CONTACT
INFORMATION IN THE CHAT.
I KNOW EVERYONE IS VERY BUSY AND
WE APPRECIATE YOUR TIME AND
INPUT TODAY.
NONE OF THIS WOULD HAVE BEEN
POSSIBLE WITHOUT THE FABULOUS
TEAM WE HAVE AT NIH AND I
ESPECIALLY WANT TO THANK OUR
LOGISTICS TEAM AND LAST BUT NOT
LEAST OUR BRAIN DEPUTY DIRECTOR
AND DR. NGAI FOR THEIR SUPPORT
OF NEUROETHICS.
I'M TURNING IT OVER TO LEAD US
INTO TODAY.
THANK YOU FOR JOINING.
>>THANK YOU, SASKIA AND THANK
YOU EVERYBODY FOR JOINING IN TO
DAY TWO OF THE WORKSHOP.
WE WANT TO GIVE A RECAP AND
FRAMING FOR DAY TWO.
I'LL DO A RECAP FOR THOSE NEW
AND JOINING US TODAY AND THEN
I'LL HAND IT OVER TO MY CO-CHAIR
CHRISTINE WHO WILL TALK ABOUT
FRAMING OR OUR CONVERSATIONS FOR
DAY TWO.
THE DESCRIBE AND HOPE OF THE
WORKSHOP IS TO HAVE A BETTER
FACTUAL AND EVIDENCE-BASED
GROUNDING FOR THE RISK AND
UNIQUE RISK THAT MAY RISE FROM
SHARING OF BRAIN DATA TO HAVE
APPROPRIATE DEFINITION OF BRAIN
DATA FOR PURPOSES OF SHARING AND
TWO, BE ABLE TO THINK WHAT
CONCRETE RECOMMENDATIONS WE CAN
DEVELOP OR WHAT AND BENEFITS
ARISE FROM DATA SHARING.
WE HAVE TECHNOLOGIES PART OF THE
PURVIEW OF THE CONVERSATION.
PANELISTS GAVE US INTO FMRI,
DEEP BRAIN STIMULATION AND BRAIN
INTERFACE.
THE KINDS OF DATA COLLECTED IN
EACH OF THOSE MODALITIES AND THE
KINDS OF INFERENCES THAT CAN BE
DRAWN.
THE PURPOSE WAS TO HAVE A COMMON
SET OF LANGUAGE AN WHAT ARE THE
KINDS OF INFERENCE COULD BE
DRAWN THAT COULD BE USED FOR
POTENTIALLY MISUSED AGAINST
INDIVIDUALS FOR PURPOSES OF
UNDERSTANDING WHAT
RECOMMENDATIONS WOULD ARISE FROM
THE SHARING OF IT.
WE'LL THEN TURN TO LOOKING AT
INFERENCES EMERGING FROM
TECHNOLOGY AND ALSO RECOGNIZING
THERE'S MULTI-MODALITY OF
SENSORS BEING DEVELOPED AND
DEPLOYED AND TOGETHER PROVIDE
INFERENCES THAT MAY GO BEYOND
WHAT IS BOTH CURRENTLY POSSIBLE
AND GIVE A MORE ACCURATE OR
PRECISE PICTURE OF WHAT A PERSON
MAY BE FEELING OR THINKING OR
INTENDING WITH RESPECT TO
ACTIONS AND MOVEMENT.
ALL THIS WITH THE UNDERSTANDING
THAT WHAT WE'RE GETTING AT WHEN
WE GET TO BRAIN DATA OR WHAT MAY
BE INFERRED FROM BRAIN DATA MAY
BE DIFFERENT IN KIND THAN OTHER
KINDS OF HEALTH DATA CAPTURED IN
THE PAST.
NOT DIFFERENT IN KINDS FROM OUR
KINDS OF DATA GIVEN MANY KINDS
OF DATA FROM DIGITAL TRACES TO
THE KINDS OF INFERENCES BEING
DRAWN ABOUT INDIVIDUALS, THE
PSYCHO GENIC PROFILES BASED ON
PEOPLE'S ONLINE ACTIVITIES
DESIGN TO BETTER UNDERSTAND
PEOPLE'S BRAINS AND MENTAL
EXPERIENCES BUT USING SENSORS,
METRICS, FMRI AND IMPLANT
TECHNOLOGY MAY GET TO GET TO THE
PSYCHO GENIC PROFILES FROM
INDIVIDUALS AT WHAT THEY'RE
THINKING AND FEELING AND
UNEXPRESSED EMOTIONS AN THOUGHTS
KEPT DEEPLY INWARD BUT COULD BE
REVEALED BY THIS TECHNOLOGY.
WE THEN TURN TO LOOKING AT THE
FIRST PANEL DIVING INTO
POTENTIAL RISK THAT MAY ARISE IN
PARTICULAR AT RISK TO
COMMUNITIES AND ABOUT THE
INCLUSIVITY OR LACK OF
INCLUSIVITY AND THE LACK OF
BRAIN DATA FOR THE EXCLUSION AND
IMPACT IT HAS ON INDIVIDUALS WHO
ARE NOT INVITED TO PARTICIPATE
OR FACE HURDLES IN PARTICIPATION
OF RESEARCH.
THE IMPLICATIONS IT MAY HAVE FOR
THE VALIDITY OF THE BIAS OF DATA
AND THE RISK OF THE APPLICATIONS
WITHOUT THE FULL SPECTRUM AND
LOOKING AT INDIGENOUS
COMMUNITIES AND WHAT COMES FROM
THE COLLECTION OF SENSITIVE DATA
AND CONCERNS OF THE ONGOING USE
OF THAT DATA AND POTENTIAL
QUESTIONS ABOUT THE ABILITY TO
REPATRIATE THAT DATA AND THE
RECOGNITION EACH CREATES
STAKEHOLDERS THAT NEED TO BE AT
THE TABLE IN THINKING ABOUT
RECOMMENDATIONS THEY MAY DEVELOP
OR ARISE AS A RESULT.
THAT'S WHERE WE LEFT THINGS
YESTERDAY.
I'LL HAND IT OVER TO CHRISTINE
TO TALK HOW WE BUILD TOWARDS
THAT AND OUR FRAMING FOR
CONVERSATIONS TODAY.
>>I WANT TO THANK SASKIA
HERSELF.
MY JOB IS TO FRAME WHAT WE'LL DO
TODAY AND BUILDING ON WHAT WAS
SUMMARIZED WE HAVE NOW LEARNED
ABOUT A NUMBER OF RISKS AND
INFERENCES OR INFERENCES THAT
CAN BE MADE FROM DATA COLLECTED
IN BRAIN RESEARCH.
SOME OF WHICH PRESENT RISKS TO
INDIVIDUALS AND TO GROUNZ.
-- GROUPS.
OUR TASK IS TO GO FROM THAT SORT
OF UNDERSTANDING TO FIGURING OUT
WHETHER OR NOT THE RISKS SHOULD
BE TREATED DIFFERENTLY WHETHER
THEY'RE DIFFERENT ENOUGH IN
PROBABILITY OR MAGNITUDE WE
SHOULD TREAT THEM DIFFERENTLY
AND IF SO, HOW TO TREAT THEM
DIFFERENTLY.
THAT'S REALLY THE TASK FOR
TODAY.
BEFORE WE GET TO THAT, WE'RE
GOING DIVE A LITTLE BIT MORE
DEEPLY INTO SOME INDIVIDUAL RISK
AND SO THE FIRST PANEL WE HAVE
THIS MORNING IS GOING TO HELP US
CONTINUE TO TALK ABOUT THE RISKS
TO INDIVIDUALS WHO ARE
PARTICIPANTS IN RESEARCH.
WE TALKED ABOUT THAT QUITE A BIT
YESTERDAY BUT THIS WILL BUILD
WHAT WE LEARNED AND DISCUSSED
YESTERDAY.
THEN WE'RE GOING TO HAVE ANOTHER
PANEL WHICH IS GOING TO BE
ACTUAL PARTICIPANTS THEMSELVES
AND DATA THAT'S COLLECTED FROM
PARTICIPANTS TO TRY TO
UNDERSTAND THE PERSPECTIVE THAT
THEY BRING TO THE TABLE IN
UNDERSTANDING WHAT THE RISKS ARE
AND WHAT WE DO ABOUT THE RISKS
AND HOW DO WE DEAL WITH THEM.
LATER WE'LL BREAK INTO SMALL
GROUPS AND TRY IN THE SMALL
GROUPS TO DECIDE TWO THINGS
BASICALLY, IS THERE A SORT OF
CLASSIFICATION OR SPECTRUM OF
RISK WE WANT TO SORT OF START
WITH AND IF THERE IS, OR EVEN IF
THERE ISN'T, WHAT ARE THE KINDS
OF SAFEGUARDS WE SHOULD BE
TALKING ABOUT TO PROTECT
INDIVIDUAL AND COMMUNITIES FROM
THE RISKS WE'VE BEEN TALKING
ABOUT THE LAST FEW DAYS.
THAT'S THE GOAL OF TODAY.
I'M HOPING BY END OF TODAY WE'LL
HAVE GREAT IDEAS FOR WHERE TO
PROCEED.
>>THANK YOU.
SO WITH THAT LET ME INTRODUCE
OUR FIRST PANEL FOR TODAY.
SASKIA SAID THE PANEL WILL BE
FOCUSSED ON INDIVIDUAL RISKS.
WE'RE FORTUNATE TO BE JOINED BY
TWO EXCELLENT SPEAKERS.
THE FIRST WILL FOCUS ON THE RISK
OF RE-IDENTIFICATION AS
DISCUSSED YESTERDAY IDENTIFYING
INDIVIDUALS FACILITATES AND MAY
BE NECESSARY FOR SEVERAL OF THE
INDIVIDUAL RISK WE MIGHT CARE
ABOUT.
JOIN ME IN WELCOMING DR. RUSSELL
POLDRACK FROM THE UNIVERSITY OF
HARVARD AND RESEARCH FOCUSES ON
UNDERSTANDING HOW THE BRAIN
GIVES RISE TO ADAPTIVE HUMAN
BEHAVIORS USING A COMBINATION OF
COGNITIVE PSYCHOLOGY AND
COMPUTATIONAL TECHNIQUES.
HIS LAB ALSO DEVELOPED TOOLS AND
INFRASTRUCTURE TO MAKE
NEUROSCIENCE MORE TRANSPARENT
AND REPRODUCIBLE.
WE LOOK FORWARD TO YOUR TALK.
>>THANKS VERY MUCH.
IS ARE YOU SEEING MY SLIDES.
>>WE ARE BUT IT'S NOT WORKING
WELL IN FULL LOCATION.
>>I DON'T KNOW WHAT THAT MEANS.
>>IT'S TOO BIG.
>>DO YOU HAVE THE GOOGLE
SLIDES?
>>WE HAVE THE PDF DECK
>>IT'S CHANGED SINCE THEN.
>>LAUNCH FULL SCREEN AND WE CAN
SEE THE CENTER OF THE DECK.
>>THANKS.
SORRY I MISSED YESTERDAY AND
HOPEFULLY WHAT I'M SAYING ISN'T
GOING TO RETREAD TOO MUCH BUT
FOCUS IN ON THE RISK OF
RE-IDENTIFICATION IN NEURO
RESEARCH AND WE RUN A PROJECT
CALLED OPEN NEURO ONE OF THE
DATA INITIATIVE DATA ARCHIVES
FOCUSSED ON SHARING A BROAD
RANGE OF DATA MOSTLY HUMAN NEURO
IMAGING DATA IN AN OPEN WAY WITH
NO RESTRICTIONS ON ACCESS.
OBVIOUSLY THE QUESTIONS TO BE
RAISED IN THIS MEETING ARE
RELEVANT TO US IN THINKING HOW
WE GO FORWARD WITH THE SHARING
OF DATA.
I WANT TO MENTION THE WORK I'LL
TALK ABOUT TODAY IS DRIVEN BY
ANNIE SCHAUB AND IN
COLLABORATION WITH THE COMPUTER
SCIENCE DEPARTMENT AT STANFORD.
WHEN I THINK OF RISK
RE-IDENTIFICATION FROM THE
STANDPOINT OF SOMETHING LIKE
EXPECTED UTILITY THEORY WHEN WE
THINK OF THE VALUE OF
RE-IDENTIFICATION WE HAVE TO
THINK ABOUT THE PROBABILITY AND
MAGNITUDE OF OUTCOME.
THAT SHOULD DRIVE OUR DECISION.
I'LL FOCUS ON THE LIKELIHOOD AND
MAGNITUDE OF POTENTIAL HARM DUE
TO RE-IDENTIFICATION AND HOW WE
DEAL WITH THAT.
AS YOU MAY HAVE ALREADY
DISCUSSED, IF WE'RE THINKING HOW
DO YOU TAKE A BRAIN IMAGING DATA
SET AND RE-IDENTIFY THE
INDIVIDUAL THE DATA HAS BEEN
STRIPPED OF THE USUAL IDENT
IDENTIFIERS AND OWN THE
STRUCTURAL MRI YOU SEE IS THE
STRUCTURE IN THE FACE THAT WOULD
ALLOW ONE TO RENDER A 3-D IMAGE
OF THE HEAD AND FACE.
FUNCTIONAL MRI ON ITS OWN
DOESN'T CONTAIN MUCH FACIAL
STRUCTURE AT ALL BUT STRUCTURAL
MRI DEFINITELY DOES.
HERE'S A RENDERING OF MY FACE
FROM MY OWN MRI DATA AND YOU'LL
NOTICE IT'S NOT GREAT.
IN THIS CASE MY NOSE IS SORT OF
CUT OFF AND WE ONLY DO GOWN TO
MY BOTTOM LIP AND HIGHLIGHTS THE
LIMITS OF FACE RECONSTRUCTION
FOR USUAL BRAIN IMAGING DATA AND
MANY RESEARCH STUDIES DON'T
OBTAIN AN IMAGE OF A FACE AND TO
HIGHLIGHT THE FACT THERE'S
LIMITS ON THE AVAILABILITY OF
THE STRUCTURE THAT ONE MIGHT
NEED.
NONETHELESS, WE REMOVE THIS FROM
THE STRUCTURAL IMAGES AND ON THE
LEFT IS FACIAL RECONSTRUCTION
FROM INPUT MRI.
IN THIS PARTICULAR DATA SET THIS
IS USING A TYPE OF DATA VERY
GOOD AT RECONSTRUCTING DATA
STRUCTURE YOU CAN GET A
REALISTIC IMAGE OF A FACE AND
THERE'S TOOLS, MY LAB DEVELOPED
ONE THAT BASICALLY ERODE PART OF
THE FACIAL STRUCTURE SO AS TO
TRY TO DEFEAT ABILITY TO
RECONSTRUCT THE FACE.
NONETHELESS, THE TECHNIQUES ARE
NOT FULLY EFFECTIVE AT
COMPLETELY DEFEATING THE
POTENTIAL FOR RE-IDENTIFICATION.
THEY LOOKED AT WHAT HAPPENED IF
YOU TAKE DATA DEFACED AND
RECONSTRUCTED OR BUILT A TOOL
CALLED MRI DEFACE THAT BASICALLY
IMPUTES AND REFACES THE IMAGE
AND TAKES AN AVERAGE AND FILLS
IN THIS AREA AND SUBMITS THOSE
USING DEEP LEARNING AND WITH
WITH NON-ZERO ACCURACY YOU CAN
MATCH THE RECONSTRUCTION WITH
THE FACIAL PHOTO WHEN IT HASN'T
BEEN DEFACED.
WHEN IT HAS, YOU CAN GET ABOVE
ZERO ACCURACY AND THAT'S
PROBABLY RELYING ON INFORMATION
ABOUT THE BROW, THE EYES, MAYBE
THE SHAPE OF THE HEAD.
THERE'S STILL A DECENT AMOUNT OF
INFORMATION REMAINING THERE.
TO DO RESEARCH YOU NEED MRI
IMAGES AND FACIAL PHOTOS AND WE
DON'T USUALLY TAKE FACIAL
PHOTOS.
THEY TOOK THE DATA AND SET UP
157 PEOPLE WITH MRI AND FACIAL
PHOTOS AND THAT RAISED THE
QUESTION HOW IT WAS SCALED TO
REAL WORLD PROBLEMS.
RE-IDENTIFICATION IS A
MULTI-CLASS CLASSIFICATION
PROBLEM WE WANT TO LOOK AT WHERE
EACH INDIVIDUAL IS A CLASS.
THE ACCURACY IS TIED TO THE
NUMBER OF CLASSES AND KNOWN AT
LEAST FOR LINEAR CLASSIFIERS IS
KNOWN TO DECLINE AS A POWER
FUNCTION OF THE NUMBER OF
CLASSES.
IT'S NOT CLEAR WHETHER THE
INDIVIDUALS WHO WORK ON THIS WHO
I TALKED TO AREN'T CLEAR HOW IT
WILL SCALE AND TRYING TO GAIN
LEATHER DATA SETS TO TEST WITH
ARTIFICIAL NEURAL NETWORKS THE
SIZE OF THE REAL WORLD
POPULATIONS FOR SHARED DATA SETS
IS LARGER THAN THE 157
INDIVIDUALS IN THE SCHWARTS ET
AL. AND YOU WANT TO KNOW THE
POPULATION OF LIKELY INDIVIDUAL
WHO'S COULD HAVE PARTICIPATED IF
IT'S HEALTHY YOUNG ADULTS A SOME
COULD BE IN THE POPULATION.
WE PUT TOGETHER A SIMULATION TO
LOOK AT GIVEN THE REPORTED
ACCURACIES IN THE SMALL STUDY BY
SCHWARTZ ET AL. HOW WOULD IT
SCALE TO BE REALISTIC.
WE TOOK UP TO 500,000 AND THE
GUESSTIMATE WAS IF YOU GO TO A
CITY WITH A MILLION PEOPLE YOU
MIGHT HAVE 500,000.
THAT MAY SCALE WITH THE SIZE OF
THE LOCATION.
IN THIS SIMULATION IF YOU TAKE
THE HIGHER SIGNAL SIMULATION
WHERE YOU REFACED THE IMAGES
ACCURACY DROPS FROM 38.2% TO
BELOW 1% ACCURACY AT A
POPULATION SIZE OF 500,000 AND
WITH THE LOWER SIGNAL NOISE
SIMULATION IT GOES FROM 10.8% TO
.04%.
THESE ARE LOGGED COORDINATES ON
BOTH AXES.
IT DECREASES LINEAR IN SPACE.
SO THERE'S A LOT OF CONCERN
AMONG PEOPLE SHARING DATA ABOUT
THE POTENTIAL USE OF A.I. USE
RECOGNITION SYSTEM TO
RE-IDENTIFIED PEOPLE BASED ON
RECONSTRUCTION OF AN MRI IMAGE.
WE'VE DONE DE FACING BUT IT'S
CLEAR IT DOESN'T ELIMINATE THE
POTENTIAL FOR RE-IDENTIFICATION.
AT PRESENT WE DON'T KNOW THE
LIKELIHOOD OF RE-IDENTIFICATION
FOR LARGE COMMUNITY SAMPLES
GIVEN THE LACK OF LARGE DATA
SETS THAT CONTAIN FACE PHOTOS
AND MRI IMAGES.
WE'RE WORKING NOW TO BUILD SUCH
A DATA SET.
IN DISCUSSIONS WITH OUR PRIVACY
OFFICE AND OTHERS THE DECISION
HAS BEEN MADE AT PRESENT THE
LIKELIHOOD OF IDENTIFICATION IS
LOW ENOUGH TO STILL CONSIDER THE
DATA TO BE NON-IDENTIFIABLE
ACCORDING TO THE READILY
ASCERTAINABLE STANDARD IN THE
COMMON RULE.
LET'S TALK ABOUT THE POTENTIAL
HARMS.
MOST THE DATA SETS IN THE OPEN
NEURO DATABASE COME FROM
COGNITIVE TASK AND A LITTLE
METADATA.
THEY MAY HAVE METADATA ON
GENDER, AGE, MAYBE COGNITIVE
TEST SCORES.
THAT LEADS US TO THINK THE
POTENTIAL HARM -- IF THE DATA
WAS RE-IDENTIFIED THE POTENTIAL
HAS
HARM SO THE INDIVIDUAL IS FAIRLY
LOW.
THE HARM REQUIRES AN ATTACKER
COULD POSE EYE RISK TO THE
PERSON.
DISEASE RISK AND COGNITIVE
ABILITY.
MOST THE CLAIMS IN THE
LITERATURE REGARDING DECODING
FUTURE DISEASE RISK AND
COGNITIVE ABILITY ARE
SIGNIFICANTLY INFLATED BY
PROBLEMATIC RESEARCH PRACTICES
MY COLLEAGUES AND I HAVE BEEN
TALKING ABOUT THE LAST DECADE OR
SO.
I THINK THE GREATEST POTENTIAL
HARM IS THE EMOTIONAL HARM THAT
COULD ARISE IF SOMEONE COULD
IDENTIFY AND TRY TO BLACK MAIL
THEM BASED ON MRI DECODING.
SAYING WE REIDENTIFIED YOUR DATA
FROM A DATABASE AND WE'VE USED
IT TO SHOW YOU HAVE A HIGH
LIKELIHOOD OF GETTING
ALZHEIMER'S DISEASE AND WE'LL
TELL YOUR INSURER UNLESS YOU PAY
US AND SEND BITCOIN TO THIS
ADDRESS.
THE TARGETS OF A BLACK MAIL
ATTEMPT WON'T KNOW THAT.
THAT'S SOMETHING TO BE WORRIED
ABOUT.
EVEN IF IT'S NOT A REALISTIC
DANGER OF TRUE DECODING THE HYPE
COULD BE THAT HAVING SEEN A
STORY ON "60 MINUTES" EVERYTHING
CAN BE DECODED FROM THE SMALL
AMOUNT OF BRAIN DATA.
IF THERE'S OTHER DATA THAT COULD
BE USED, PSYCHIATRIC DISEASE,
DIAGNOSES, DRUG USE, THINGS LIKE
THAT, THERE'S GREATER HARM
EMPLOYMENT OR DISCRIMINATION.
WHAT DO YOU DO ABOUT THIS?
THE COMMON IMPULSE IS TO CLAMP
DOWN ON DATA SHARING.
WE'VE LONG BEEN PROPONENTS OF
SHARING DATA TO PROTECT PEOPLE
BUT WE TAKE SERIOUSLY BOTH THE
REQUIREMENT FROM THE BELMONT
PRINCIPLES TO PROTECT SUBJECTS
AND MAXIMIZE THEIR
PARTICIPATION.
WE NEED TO ADDRESS THE
REGULATORY MEANS TO PROTECT THE
RESEARCH PARTICIPANTS FROM THE
MISUSE OF NEUROSCIENCE DETE.
THANKS VERY MUCH.
>>LIKE YESTERDAY WE'LL HAVE
TIME FOR A COUPLE QUICK Q&A
QUESTIONS I SEE TWO IN THE ROOM.
DR. YOUNG, PLEASE GO AHEAD.
>>HOW DO YOU THINK ABOUT
WHETHER DEFACING CAN AFFECT DOWN
STREAM ANALYSIS LIKE BETWEEN EEG
DATA OR VOLUMETRIC ANALYSIS AND
MAY BE NECESSARY BEFORE DEFACE
DATA SETS TO MAKE SURE IT
DOESN'T UNDERMINE THE QUALITY OF
THE DATA WHILE RERESPECTING THE
IMPERATIVE TO SHARE THE DATA AND
MAKE IT OPEN IN A WAY THAT
PROTECT THE PRIVACY OF
PARTICIPANTS?
>>GREAT QUESTION.
AN EARLIER ANALYSIS SUGGESTS
THERE MAY BE RELATIVELY SMALL
EFFECTS ON THINGS LIKE DOWN
STREAM ANALYSIS AND CORTICAL
THICKNESS ESTIMATION.
THE LATEST PAPER DOESN'T REALLY
SHOW SIGNIFICANT IMPACTS ON THE
DOWN STREAM PROCESSES.
THE JURY'S STILL OUT BUT THERE'S
NOT BIG EFFECTS.
THE ONE PLACE WHERE DEFACING CAN
HAVE EFFECT IS ON THE GENERATION
OF HEAD MODELS FOR EEG AND
PEOPLE IN THAT FIELD HAVE BEEN
THINKING ABOUT THIS A LOT AND
MAY END UP NEEDING TO SHARE DATA
IN A MORE CONTROLLED WAY OR
SHARE HEAD MODELS PREGENERATED.
THEY'LL BE BADLY IMPACTED BY
REMOVAL OF FACIAL STRUCTURE.
>>THANK YOU.
IT'S USEFUL TO HAVE EVIDENCE
BASED GROUNDING OF THE MAGNITUDE
AND RISK AND CONSIDERING IT.
I WONDER IF YOU LOOKED AT OTHER
WAYS BESIDES FACE ANALYSIS
IDENTIFICATION OF THE DATA.
IF THERE'S BEHAVIORAL DATA THAT
ENABLES THE POTENTIAL FOR
RE-IDENTIFICATION OR THE
CONNECTOME OR NEURAL SIGNATURES
MAY ENABLE FROM THE FUNCTIONAL
ACTIVITY OF BRAIN ACTIVITY
ITSELF TO BE USED AS A WAY OF
AUTHENTICATING AND POTENTIAL
IDENTIFICATION AS WELL.
HAVE YOU LOOKED AT OTHER
MODALITIES OF REIDENTIFICATION
OF THE DATA AND RISK FROM A DATA
NOT MAGNITUDE PERSPECTIVE?
>>WE HAVE NOT.
THERE'S NONE IMAGING REGARDING
DEMOGRAPHICS AND THINGS LIKE
THAT ESPECIALLY FOR DATA SETS
THAT COME FROM RELATIVELY SMALL
AREAS FOR RECRUITMENT.
THAT CERTAINLY BECOMES A
CONCERN.
WHY THE HUMAN CONNECTOME PROJECT
DOESN'T SHARE THE DATA BECAUSE
IT CAME FROM A GEOGRAPHIC AREA
AND COMPOSED FROM LARGE
FAMILIES.
FOR THE DATA THAT ARE SHARED IN
OPEN NEURO IN GENERAL YOU KNOW
THERE'S RELATIVELY LITTLE OF
THAT SIDE OF TYPE INFORMATION.
SOME ARE BUT IT'S MINIMAL BUT
THAT STUFF IS LESS OF A CONCERN.
THE ISSUE OF RE-IDENTIFICATION
NOT RELATED TO FACE
RECONSTRUCTION IS INTERESTING.
ONE THING TO POINT OUT IS THIS
IS IS FUNDAMENTALLY DIFFERENT
FROM SAY GENETIC DATA OR
FINGERPRINT AT PRESENT AND I
DON'T HE SEE IT HAPPENING FOR A
LONG TIME IT'S IMPOSSIBLE TO GET
A LATENT SURREPTITIOUS BRAIN
IMAGE.
THE ONLY WAY TO GET BRAIN
IMAGING DATA FROM PEOPLE IS
IMAGING THEM.
SAY SOMEBODY HAS A CONNECT HOME
OF AN INDIVIDUAL THE ONLY WAY TO
REIDENTIFY THAT INDIVIDUAL IS BY
HAVING ANOTHER CONNECTOME FOR
THAT INDIVIDUAL AND THE ONLY
TIME CONNECTOMES ARE REALLY
GENERATED ARE IN RESEARCH
STUDIES AND SEEMS UNLIKELY
THAT'S AN EFFECTER WE NEED TO
WORRY A LOT ABOUT IF YOU HAVE A
STRUCTURAL IMAGE OF A PERSON YOU
CAN MATCH THAT TO ANOTHER
STRUCTURAL IMAGE.
IT REQUIRES US TO ALREADY HAVE
AN MRI IMAGE OF THE PERSON AND
SOMETHING FOR EXAMPLE SOMEBODY
WHO ALREADY HAS A BUNCH OF
IMAGING DATA AND WANTS TO MATCH
UP COULD DO THAT AND THAT'S
WHERE WE HAVE TO THINK OF THE
MAGNITUDE OF WHAT THEY CAN LEARN
FROM IT.
>>HI, RUSS.
ROBERT BERRY FROM NGH.
I HAVE A QUESTION ABOUT
DEFACING.
IF YOU WERE TO SHARE DEFACED
IMAGES WITH COLLEAGUES AND MAYBE
SOME PIXELS ARE SCRAMBLE AND
SOMEONE COULD POTENTIALLY
RE-IDENTIFY AND THE FIRST THING
IS TO PUT THEM THROUGH A SKULL
STRIPPING ALGORITHM WHICH
REMOVES EVERYTHING EXCEPT FOR
THE BRAIN IF IT'S NOT TOO
AGGRESSIVE.
MY QUESTION IS WHY EVEN DO
DEFACING AT ALL?
WHY DON'T WE JUST DO SKULL
STRIPPING AN REMOVE EVERYTHING
AND ONLY SHARE THE BRAIN.
THAT SEEMS TO SKIP THE PROBLEM
ENTIRELY.
WE THINK OF THAT AS A NUCLEAR
OPTION BECAUSE SOME REGISTRATION
METHODS USE THE SKULL
INFORMATION AND SO WE'VE BEEN
RETICENT TO DO THAT BUT I THINK
YOU'RE RIGHT, IF WE HAD TO MOVE
TO A WORLD WHERE WE WERE
SIGNIFICANTLY WORRIED -- WHERE
WE THOUGHT THE REMAINING FACIAL
STRUCTURE AFTER DE FACING WAS
STILL PROBLEMATIC WOULD BE OUR
NEXT OPTION TO SHARE DE SKULLED
DATA AND SOME WORK FLOWS WILL NO
LONGER WORK WITH THOSE DATA.
>>THANK YOU VERY MUCH.
I THINK WE HAVE TO MOVE ON TO
OUR NEXT SPEAKER BUT WILL HAVE
TIME FOR MORE Q&A AND GENERAL
DISCUSSION.
OUR NEXT SPEAKER IS DR. SARA
BERGER IN RESPONSIBLE AND
INCLUSIVE TECHNOLOGY AT IBM.
SHE RECEIVED HER Ph.D. FROM
NORTHWESTERN UNIVERSITY
SPECIALIZES IN SYSTEMS AND
COGNITIVE NEUROSCIENCE WITH A
SUBSPECIALTY IN MEDICAL
HUMANITIES AND BIOETHICS.
AS PART OF IBMs RESPONSIBLE AND
INCLUSIVE TECHNOLOGY RESEARCH
TEAM, DR. BERGER DESIGNS
MULTI-MODAL FRAMEWORKS TO BE
MORE PROACTIVELY RESPONSIBLE IN
THEIR PROJECTS AND PROJECTS
ACROSS TECHNOLOGIES AND
APPLICATIONS INCLUDING BUT NOT
LIMITED TO A.I. AND MACHINE
LEARNING AND LOOKS AT
POTENTIALLY HARMFUL NARRATIVES
AND PRACTICE AND RELATIONAL,
PARTICIPATORY AND COMMUNITY-GRIF
DRIVEN ETHICS.
WELCOME.
>>CAN YOU SEE MY SLIDES?
THANK YOU FOR THE KIND
INTRODUCTION AND THANKS FOR
HAVING ME.
I'M PLANNING ON BUILDING UPON
SOME OF THE EXCELLENT POINTS
MADE BY MANY OF THE SPEAKERS
YESTERDAY BUT I ALSO HOPEFULLY
WILL COMPLICATE OR CHALLENGE
IDEAS AROUND INDIVIDUAL DATA AND
SHARING IN THE PROCESS.
BEFORE I BEGIN I WILL SAY THE
VIEWS IN MISS TALK ARE MY OWN.
THEY DON'T REPRESENT THOSE OF
THE COMPANY I WORK FOR.
I WANT TO BEGIN WITH
POSITIONALITY STATEMENT.
I KNOW IT'S NOT COMMON IN BIO
MEDICAL RESEARCH BUT MY WAY OF
CHALLENGING PRACTICE IS
SUBJECTIVE AND WANT TO
ACKNOWLEDGE MY QUESTIONS, MY
METHODS, MY INTERPRETATIONS
THEY'RE ALWAYS INFLUENCED BY MY
LIVED EXPERIENCES MINE OR THAT
OF MY FAMILY WITH CHRONIC PAIN
AND TRAINING IN NEUROSCIENCE
BIOETHICS AND GENDER STUDIES AND
BY INTERACTIONS WITH HUNDREDS OF
PATIENTS AND WITH THE BRILLIANT
PEOPLE I HAVE THE PRIVILEGE OF
CALLING COLLEAGUES.
FOR THOSE WHO DON'T KNOW ME, A
QUICK BIT ABOUT MY RESEARCH,
I'VE SPENT OVER 13 YEARS
INVESTIGATING HOW TO QUANTIFY,
PREDICT, TRACK, TREAT ACUTE AND
CHRONIC PAIN USING MANY KINDS OF
DATA.
SO STRUCTURAL AND FUNCTIONAL
FMRI, SELF-REPORTS, SMARTPHONE
ASSESSMENTS, WEARABLE SENSORS
AND TECHNIQUES.
THIS RESEARCH HAS AT TIMES
EXPOSED MOW TO A VARIETY OF
ETHICAL ISSUES AT THE
INTERSECTION OF A.I. AND DRIVEN
ME AND MY TEAM TO TRY TO DEVELOP
VARIOUS RESOURCES FOR
RESEARCHERS TO REFLECT AND
REFLEX ON THE BROADER
IMPLICATIONS OF THEIR WORK.
IN PREPARING NOR PANEL, WE'RE
GIVING METHODS TO ORIENT AND
GUIDE THE DISCUSSION.
ONE WAS THIS ONE WHICH IS WHAT
ARE POSSIBLE HARMS TO
INDIVIDUALS FROM DATA SHARING.
BASED ON THIS QUESTION WITHOUT
SEEING ANYBODY ELSE'S SLIDES, I
FIGURED PEOPLE WOULD EXPECT ME
TO TALK ABOUT THE RISKS IN A
PARTICULAR KIND OF WAY.
SO ONE RISK TO INDIVIDUALS WOULD
BE BROUGHT UP IS THIS ISSUE OF
RE-IDENTIFICATION AND WE TALKED
AT LENGTH ABOUT THIS AND
DR. POLDRACK THIS TOO AND I
IMAGINE SOMEONE EXPECTS ME TO
SAY THIS KIND OF DATA LIKE MRI
ARE LESS RISKIER.
MAYBE NAME DOWN STREAM LEGAL OR
SECURITY IMPLICATIONS AND TALK
ABOUT THEIR LIKELIHOOD OR
CONCERNS AND MAYBE PROVIDE
TECHNOLOGY MITIGATION
SUGGESTIONS.
I'M NOT GOING TO DO THAT TODAY.
INSTEAD I'M GOING TO TAKE A
DIFFERENT APPROACH I'LL TALK
ABOUT INDIVIDUALS, NEURODATA AND
DATA SHARING AND THE QUESTION IN
SOME OF OUR DISCUSSIONS
YESTERDAY IT APPEARS THAT
INDIVIDUALS CAN BE NEATLY
SEPARATED FROM GROUPS AND NEURO
DATA CAN STAND ALONE AND THE ACT
OF DATA SHARING CAN BE DISTILLED
FROM THE LARGER PROCESSES AND I
WANT TO COME BACK TO THREE
THINGS.
THE FIRST IS THAT INDIVIDUALS
ARE ALWAYS SIMULTANEOUSLY
SITUATED WITH VARIOUS
COMMUNITIES AND ASSIGNED GROUPS.
WHEN YOU FILL OUT FORMS YOU MAY
SHARE SOMETHING ABOUT
COMMUNITIES WITH WHICH YOU
IDENTIFY OR SOCIAL GROUPS YOU
DON'T, GENDER, RACE INCOME
BRACKETS.
THEY'RE ALL USED TO FORM GROUPS
OF INDIVIDUALS.
PARTICIPANTS CAN BE ASSIGNED TO
PATIENT VERSUS CONTROL GROUPS,
ACTIVE ARMS VERSUS PLACEBO ARMS
AND ANALYTICS ARE OFTEN USED TO
CLASSIFY PEOPLE TO FIND
SUBCOHORTS TO COMPARE WITH
REFERENCE DATA SETS.
SO INDIVIDUALS IN THESE CONTEXTS
ARE ALWAYS IN CONSTANT
RELATIONSHIP TO PEOPLE AND
VARIOUS GROUPS AND COMMUNITIES
THROUGHOUT THE RESEARCH.
SECOND, YESTERDAY IT WAS BROUGHT
UP NEURODATA DOESN'T OCCUR IN
ISOLATION AND I'LL RETURN TO
THAT BUT I WANT TO GO A STEP
FURTHER SAYING IT DOESN'T EXIST
ON ITS OWN.
WE DON'T HAVE A BUNCH OF DATA
FLOATING IN OUR HEADS WAITING TO
BE COUNTED OR PRESSURED OR
ABSTRACTED
HE INSTEAD THE PROCESS OF
TURNING PHYSIOLOGY INTO BEHAVIOR
IS A CREATIVE ACT.
DATA ARE THEMSELVES CREATED AND
SITUATED WITHIN VARIOUS
POLITICAL AND HISTORICAL,
SOCIAL, ECONOMIC PROCESSES THAT
DICTATE WHAT IS VALUABLE TO BE
CREATED IN THE FIRST PLACE.
BECAUSE OF THIS IT'S DIFFICULT
TO TALK ABOUT DATA SHARING AS
SOME SORT OF DIGITAL SPACE OR A
MOMENT IN TIME WITHOUT THEREFORE
TALKING ABOUT DATA COLLECTION
AND DATA USE.
I'LL START AT THE LATTER POINT
FIRST.
I HEAR TALKING ABOUT THIS TO A
REPOSITORY OR ANOTHER SERVER AND
THIS IS PART OF IT.
AN IMPORTANT PART.
THE QUALITY OF THE DATA AND
AMOUNT COMES FROM THE COLLECTION
OF THE DATA AND LIKEWISE DATA IS
TRANSFORMED AND THUS DATA
SHARING IS TIED TO DATA CREATION
AND USE FROM THE GET GO.
I THINK THIS ALSO INCLUDES THE
ACTION IN PARALLEL WHEN DATA IS
ANALYZED, CLONED OR AGGREGATED
AND IT CAN COME TOGETHER FULL
CIRCLE.
WHEN I THINK OF DETE SHARING I'M
VIEWING THE ENTIRE DATA PROCESS
AS A SOCIO TECHNOLOGY STUCK OF
SHARING OPPOSED TO A SITE OF
SHARING.
THIS IN PARTICULAR IS IMPORTANT
BECAUSE IT OPENS UP THE REALM
BEING OF POSSIBILITY TO PREVENT
HARM AND MAY ALSO HELP US EXPAND
OUR NOTIONS OF HARM TO PEOPLE AS
WELL.
IF WE BEGIN OUR DATA COLLECTION
I THINK WE CAN START TO SEE THE
WAYS IN WHICH SHARING IS SO MUCH
BROADER.
INFORMED CONSENT IS WHEN
PARTICIPANTS AGREE TO SHARE
THEIR THOUGHTS, BODIES, TIME
WITH US AND WE TURN THIS INTO
DATA FOR THE PURPOSES OF
RESEARCH.
SAY SOMEONE CAN SENSE THEY PASS
ALL SAFETY CHECKS AND
ELIGIBILITY, CRITERIA,
EVERYTHING CHECKS OUT AND THEY
ENTER THE SCANNER AND GET COMFY,
RESEARCHERS GO TO THE CONTROL
ROOM TO START SCANNING.
WHAT HAPPENS WHEN THE RESEARCHER
STARTS AT THE SCANNER AND YOU
LET IT TAKE THE FIRST IMAGES
OVER A FEW SECONDS AND SEE
SOMETHING LIKE THIS?
MASSIVE ARTIFACTS,
DISCOLORATION, WHAT DO YOU DO?
FOR ME THIS WAS NOT IN UNCOMMON
OCCURRENCE.
I'VE SEEN STROKES, ACTIVE BRAIN
WAVES, EVIDENCE OF PAST
SURGERIES AND EVEN BULLET
SHRAPNEL.
WE HAVE A SYSTEM IN PLACE TO DO
THIS.
WE WERE PREPARED IN OUR TRAINING
BUT CAN YOU TAKE A MOTION TO
IMAGINE WHAT THAT'S LIKE FOR A
PARTICIPANT WHO WAS TOTALLY FINE
AND WAS IN A SCANNER FOR HOURS
AND TO BE ESCORTED OUT TO A ROOM
TO MEET SOMEONE THEY HAVEN'T MET
BEFORE TO EXPLAIN WHAT WE MAY BE
SEEING IN THEIR HEADS.
ONE OF THE RISKS IN HAVING
PARTICIPANTS AGREE TO SHARE
THEIR DETE IS THERE'S THE RISK
OF BEING EXPOSED TO INFORMATION
UNKNOWN OR UNEXPECTED OR
DISCLOSING INFORMATION THAT THEY
DIDN'T NECESSARILY WANT OTHERS
TO KNOW.
THERE ARE MANY CONSEQUENCE TO
THIS I'M SURE I'M NOT NAMING ALL
OF THEM HERE.
IT COULD BE RE-STRESSING OR
CAUSE DISTRUST IF PEOPLE DIDN'T
UNDERSTAND THIS COULD HAPPEN OR
DOESN'T WANT TO BE NOTIFIED.
IT COULD BE WITHIN MOMENTS MUCH
OUT OF THE SCANNER OR SOMETIMES
DELAYED.
SOMETIMES WE DON'T LOOK AT DATA
FOR MONTHS AND IT'S PERSON TO BE
ABLE TO REIDENTIFY SOMEONE
QUICKLY.
AND YOU CAN SEE IF THERE'S A
MAJOR HEALTH ISSUE, IT'S LIKELY
GOING TO IMPACT THEIR FAMILIES
AND LOVED ONES OR IN CULTURES
COMMUNITIES TOO.
DATA IS GENERATED IN PART BY
PARTICIPANTS DOING SOMETHING,
COMPLETING TASKS, LETTING YOUR
MIND WANDER IN RESTING STATE.
LISTENING TO PODCASTS FOR HOURS.
THE PREVIOUS WORK REPRESENTS THE
THINGS THE RESEARCH TEAMS WOULD
ASK THEM TO DO.
MAYBE GOING IN THE MRI SCANNER
FOR HOURS UP TO THREE YEARS.
THEY MAY HAVE QUESTIONNAIRES ON
COMPUTERS, PHONES, INTERVIEWS,
PROVIDE VOICE RESPONSES
WEARABLES, SENSORS UNDER THEIR
MATTRESSES.
I'M SURE I'M MISSING SOME.
I'M SURE YOU CAN ALL APPRECIATE
HOW MUCH WORK THIS IS.
ANOTHER RISK I SEE IS POTENTIAL
EXPLOITATION.
I FEEL LIKE IT'S GETTING WORSE
WITH THE MOVE TOWARDS BIG DATA.
ON THE ONE HAND PARTICIPANT
BURDEN IS A REAL CONCERN AND I
KNOW MANY WERE TOLD TO AVOID
COERCION BUT I WORRY ABOUT THE
LIMITED BUDGET PEOPLE HAVE TO
PAY PARTICIPANTS FOR THEIR WORK
AND IT'S WORK THEY DO FOR
RESEARCH FOR THE TIME THEY SPEND
TRAVELLING TO OR MISSING THEIR
WORK OR GETTING CHILDCARE AND
FOR THE RESOURCES NEEDED TO
COMPLETE THE TASKS BECAUSE YOU
CAN'T ASSUME EVERYONE HAS A
SMARTPHONE, DATA PLAN OR
INTERNET OR THERAPEUTIC
MISCONCEPTION THAT MAIN RELIEF
MAY NOT HAPPEN AND THE
CONTRIBUTION TO WHAT I'M CALLING
THE GIG ECONOMY AND IN THE CASE
OF DIRECT TO CONSUMER WE'RE
STARTING TO SEE TASKS AND UPLOAD
DATA FOR PAYMENT AND THAT
REMINDS ME OF AMAZON'S
MECHANICAL TUR.
WHAT ARE CONSEQUENCES?
YOU CAN HAVE BURNOUT THAT CAN
IMPACT DATA REPRESENTATIVENESS
AND QUALITY AND CAN IMPACT
RESEARCHERS.
OTHER USE OF THE DATA.
IT'S ALL CONNECTED.
YOU HAVE CONTINUATION OF
INEQUITABLE RESEARCH BENEFITS
THEY GET GRANT FUNDING AND
OPPORTUNITIES TO TALK AT PANELS
AND PARTICIPANTS WHAT DO THEY
GET?
THIS DEALS WITH LABOR AND
CLINICAL SUPPORT STAFF AND I
WONDER DO THESE GO TO UNFAIR
LABOR PRACTICES.
MOVING ON TO TRANSFER AND
STORAGE.
NEUROSCIENCE IS ISN'T USUALLY
SHARED IN ISOLATION AND YOU
CAN'T REALLY DO TOO MUCH WITH A
FEW SLICES OF THE BRAIN.
WHEN WE SHARE NEURO DATA WE
SHARE TONS OF OTHER INFORMATION
TO PROVIDE CONTEXT AND MAKE THE
DATA USABLE WE MAY HAVE TIME
SERIES AND METADATA AND LIKELY
SHARE OUR SCANNING PARAMETERS
AND STIMULI AND MAYBE IMAGE MAPS
OR DATA THAT CO-OCCURRED WITH
THE NEURO DATA SHARED WITH THE
VISIT OR PART OF A LARGER STUDY
AND MAY SHARE CLEAN VERSIONS OR
DOWN VERSIONS OF THE DATA AND
MAYBE THINGS WE ANALYZED AND MAY
PROVIDE OPEN SOURCE CODE OR
PAPERS WITH RESULTS.
MAYBE WE DON'T INCLUDE DATA FROM
PEOPLE WHO DIDN'T PASS ALL
ELIGIBILITY CRITERIA OR COMPLETE
THE FULL STUDY OR WHO IS BRAIN
WAS LABELLED AS AN OUTLIER DUE
TO NOISE THAT WAS SEEN.
IT BRINGS UP RISK NOT
NECESSARILY AROUND NEURO DATA
WITH THE TRANSFER OR IN A
REPOSITORY.
YOU HAVE NOT JUST MORE
INFORMATION BUT DIFFERENT KINDS
OF INFORMATION AND THAT WILL
MAKE YOU MORE LIKELY TO R
RE-IDENTIFY SOMEBODY AND I WORRY
ABOUT UNCONSENTS DATA FOR
INDIVIDUALS OR COMMUNITIES.
FMRI ARE NOT SUPER SCALABLE AND
EEG IS PRONE TO MOVING ARTIFACTS
BUT WHEN YOU PAIR THIS WITH
OTHER KINDS OF DATA EASILY
COLLECTED LIKE VOICE, SMARTPHONE
OR ACCELEROMETERS CAN BE USED
FOR THAT WERE CONSENTED TO AND
FIND SO-CALLED PATTERNS IN
GROUPS OF INDIVIDUALS.
MOVING ON TO DATA USE, SAY I'M A
RESEARCHER AND DISCOVERED A PAIN
BIO MARKER FOR FUTURE RESPONSE
TO TREATMENT AND MAYBE THAT
HELPS PHYSICIANS TRIAGE
TREATMENT BETTER AND SAY
PATIENTS CONSENTED AND SAY I
UPLOAD THIS TO OPEN REPOSITORY.
SAY SOMEONE COMES ALONG ANOTHER
RESEARCHER AND THEY WANT TO
REPRODUCE THIS BIOMARKER AND
THIS IS A BENEFIT OF DATA
SHARING FOR ROBUSTNESS OR
VALIDITY OF A PREVIOUS FINDING.
WHAT IF THEY ADVOCATE FOR A
PRE-EXISTING CONDITION THAT MAY
BE USED TO DENY PATIENT'S
INSURANCE?
OR APPLY THIS TO A WORKMAN'S
COMPENSATION USE CASE TO DENY
SOMEONE FOR COMPENSATION OF ON
THE JOB INJURIES?
IT COULD IMPACT HEALTH AND
LIVELIHOOD AND COULD BE ANTI
THETICAL TO WHAT THE PATIENT
SIGNED UP FOR.
SAY I UPLOAD THE DATA SET AND
MORE DATA WITH IT AND ANOTHER
RESEARCHER UPLOADS A DIFFERENT
DATA SET FOR ANOTHER BIOMARKER
BUT HAS ENOUGH DATA WITH IT AND
MAYBE THE SCANNING PARAMETERS
ARE SIMILAR.
THEY BOTH PUT THIS ON THE
REPOSITORY AND SAY ANOTHER
RESEARCH GROUP WAS ABLE TO
AGGREGATE THE DATA AND ABLE TO
FIND EVIDENCE FOR A LINK BETWEEN
THE TWO CONDITIONS.
THIS COULD BE A GOOD THING.
ONE OF THE REASONS WE SHARED
DATA IS TO HELP GENERATION THIS
TO HELP OTHERS AND ALSO OPENS
THE DOOR TO CREATING INFERENCES
THEY MAY NOT HAVE CONSENTED TO
OR WANTED BY THEM.
THE RISK OF SHARING DATA IN THIS
WAY THERE'S A RISK OF UNWANTED,
UNCONSENTED USE OF DATA AND
IMPLICATIONS FOR HARM BECAUSE
IT'S POSSIBLE IN THE LONG TERM
THIS DATA COULD BE USED AGAINST
PEOPLE WHO VOLUNTEER TO HELP
FOLKS.
AND DATA SHARING CAN CAUSE DATA
AGGREGATION LEADING TO
STIGMATISM AND MANY OPEN
REPOSITORIES IT'S EASY AND
SOMETIMES ENCOURAGED TO USE DATA
OUT OF CONTEXT.
FOR EXAMPLE, TAKING A DATA SET
THAT WAS MEANT TO COMPARE
COGNITIVE REWARD DIFFERENCES
BETWEEN PATIENTS AND USE IT TO
COMPARE COGNITIVE REWARD
DIFFERENCES BETWEEN MEN AND
WOMEN OR PEOPLE OF DIFFERENT
AGES.
AND I KNOW WE'RE ALMOST OUT OF
TIME SO FOR THE SAKE OF TIME
GOING TO RUN THIS QUICKLY TO GET
TO THE DISCUSSION.
THERE'S IN WAYS TO IMPROVE
CONSENT FORMS AND METHODS AND
PROCESSES AND RESEARCHERS CAN
RECEIVE ADDITIONAL TRAINING AND
CAN HELP PARTICIPANTS UNDERSTAND
THE NUANCES OF DATA AS WELL WE
COULD CONTINUE TO EMPLOY STATE
OF THE ART TECHNOLOGY TO SECURE
DATA AND UPHOLD EXISTING
STANDARDS FOR DEIDENTIFICATION
AND MAY WANT TO CREATE NEW
STANDARDS IN THE PROCESS AND
THOUGH THIS WAS MENTIONED
YESTERDAY I WANT TO ECHO IT
HERE, WE CAN BE MORE TRANSPARENT
ABOUT DATA STORAGE WITH
PARTICIPANTS AND IN TERMS OF
USE, I WOULD RECOMMEND DOING A
FORMAL REQUEST OR APPROVAL
PROCESS WHICH MAY INCLUDE
SPECIFIC TERMS OF USE, DATA
LICENSES, DURATION, MAYBE
ENFORCING PREREGISTRATION TO
PREVENT FISHING EXPEDITIONS AND
THERE NEEDS TO BE WAYS OF
TRACKING AND AUDITING THE USE OF
DATA AND CONSEQUENCES TO SOL
VIOLATING THE TERMS AND I THINK
THERE NEEDS TO BE OPEN FEEDBACK
MECHANISMS FOR RESEARCHERS,
PARTICIPANTS OR ANYONE FOR THAT
MATTER TO BE ABLE TO REPORT
CONCERNS WHEN IT COMES SOME DATA
AND I HAVE OPEN QUESTIONS OR
CONCERNS TO CLOSE WITH.
PEOPLE WHO HEARD ME TALK BEFORE
KNOW I THINK SPINAL CORD SIGNALS
WE KNOW THEY'RE ALSO USED TO
QUIN FER PERCEPTIONS IN SOME
CASES THE ACTION MAY BE EASIER
TO COLLECT AND MAY RESULT IN
SIMILAR INDIVIDUAL AND OTHER
HARMS AND OTHER DATA FOR
ADDITIONAL INFORMATION OR TO
CREATE PROXIES OR COIL OF NEURO
DATA OR USE TO INFER THINGS
ABOUT PEOPLE.
ARE WE TRYING TO PROTECT DATA OR
PEOPLE?
AND IS IT THE DATA HARMFUL AND
RISKY OR HOW ARE THE DATA ARE
CREATE AND USED BY PEOPLE THAT
CREATES THE RISK FOR HARM?
THE FRAMING OF THE QUESTIONS
DETERMINES THE ANSWERS THAT ARE
POSSIBLE.
THANK YOU FOR LISTENING.
>>THANK YOU, DR. BERGER DO WE
HAVE QUESTIONS INSIDE THE ROOM?
>>THANK YOU, THAT WAS A
WONDERFUL PRESENTATION.
MY QUESTION IS ON THE LAST POINT
WHICH I WHOLEHEARTEDLY AGREE
WITH IN THINKING ABOUT BRAIN
DATA AND SO MANY TECHNOLOGIES
AND DATA INFERENCES ABOUT BRAINS
AND MENTAL EXPERIENCES.
GIVEN THAT AS YOU PUT UP THAT
SECOND TO LAST SLIDE HOW TO
THINK ABOUT THE DIFFERENT
ASPECTS OF PROTECTION FROM
COLLECTION, TRANSFER AND
STORAGE, WHAT CHANGES IN HOW YOU
THINK ABOUT THE SPECTRUM OF
PROTECTIONS YOU SUGGESTED MEAN
IT SHOULD BE INCLUSIVE ACROSS
THE DATA.
IT'S DIFFERENT IN THE COLLECTION
PROCESS IF YOU'RE TALKING ABOUT
A RESEARCH STUDY OR CONSUMER
APPLICATION YOU'RE TALKING ABOUT
SOCIAL MEDIA, DIGITAL TRACES,
EVERY DAY ACTIVITIES USED TO
CREATE PROFILES TO MAKE
INFERENCES OF EXPERIENCES.
WHERE'S FIT INTO THE PREVIOUS
SLIDE AS YOU THINK ABOUT THE
PROTECTIONS WE SHOULD PUT INTO
PLACE.
>>I WISH I HAD AN ANSWER FOR
THIS AND WE WOULDN'T HAVE TO
HAVE THIS TALK TODAY.
I THINK THAT'S WHY I FOCUS NOT
NECESSARILY ON THE KIND OF DATA
BUT AGAIN WHAT IT'S USED FOR AND
HOW IT'S COLLECTED.
THEN YOU HAVE DIFFERENT WAYS OF
THINKING ABOUT RISK THAT ISN'T
NECESSARILY FORMED ON SOCIAL
MEDIA DATA SO IT'S NOT AS RISKY
OR NEURO DATA OR WHATEVER IT IS.
I THINK FOR ME THESE THINGS ARE
SO CONTEXTUALLY DEPENDENT NOT
SAYING WE CAN'T HAVE RULES BUT A
LOT OF TIMES WE HAVE TO BE ABLE
TO TALK TO THE COMMUNITIES THE
SOCIAL GROUPS TO UNDERSTAND WHAT
THEY'RE COMFORTABLE WITH WHEN IT
COMES TO SHARING THESE TYPES OF
THINGS.
A LOT OF TIMES EVEN WITH SOCIAL
MEDIA DATA WA YOU'RE STARTING TO
SEE IS THEY'RE ALSO STARTING TO
BE AGGREGATED WITH NEURO DATA.
YOU MIGHT HAVE A BRAIN SCAN, YOU
MAY HAVE A COUPLE FEATURES, H
HYPOCAMPAL VOLUME AND CORRELATE
IT TO THEIR POSTS OVER THE LAST
YEAR AND SAY SOMETHING ABOUT
THEM.
HOW DO WE START THINKING ABOUT
THE WAYS WE'RE PUTTING DATA
TOGETHER AND USING THEM OPPOSED
TO THE DATA THEMSELVES?
I KNOW IT'S KIND OF A NON-ANSWER
BUT I KEEP COMING BACK TO THE
FRAMING OF THE QUESTION BEYOND
ANYTHING ELSE.
>>AFTER THE TIME YOU SPENT IN
ACADEMIA AND INDUSTRY AND FOR A
LOT OF US AROUND THE TABLE NOT
SURE WHAT'S GOING ON IN THE
INDUSTRY DO YOU HAVE A SENSE
WHERE THE BIGGEST RISKS ARE AND
WE'RE NOT AWARE OF?
>>I DON'T KNOW HOW MUCH I CAN
ANSWER THAT QUESTION GIVEN MY
POSITION.
THERE'S INTERSECTIONS AND I CAN
TALK ABOUT THE NOTION OF BIG
DATA.
NEUROSCIENCE ESPECIALLY IF MRI
STUDIES ARE NOTORIOUSLY UNDER
SAMPLED AND PEOPLE MAKE WILD
CLAIMS OVER A SAMPLE OF 5 OR 10
PEOPLE.
THE DEGREES OF FREEDOM IN THEIR
STATISTICAL ANALYSIS DO NOT
SUPPORT THE SAMPLE SIZE THEY
HAVE.
WE DO NEED MORE DATA WE NEED TO
LEVERAGE THIS AND ANALYTICS.
THE MORE DATA YOU HAVE THE MORE
COMPLEX THE DATA AND ALGORITHMS
USED TO ANALYZE THIS DATA.
IT GETS HARDER AND HARDER TO BE
TRANSPARENT AND TO FIX THINGS
AND FIX THINGS AT SCALE.
FOR ME GENERALLY SPEAKING I'M
WORRIED ABOUT TRANSPARENCY AND
SCALABILITY OF HARMS NOT JUST
BENEFITS AND WHILE WE'RE
FOCUSSED ON A LOT OF THE THINGS
THAT GET ATTENTION IN THE MEDIA
LIKE CHAT GPT THEY'RE ALSO
CONNECTED TO THINGS WE'RE
WORKING ON.
WILL ALEX PRESENTED AWESOME WORK
WITH GPT AND WE HAVE
INTERSECTION OF LARGE LANGUAGE
MODELS AND NEURO DATA.
WE NEED TO THINK OF THIS IN
COMBINATION WITH EACH OTHER.
I'M SORRY I CAN'T BE MORE
SPECIFIC BUT I HOPE IT WAS
HELPFUL.
>>LET ME OPEN UP THE PANEL AND
WE HAVE TWO OR THREE QUESTIONS
IN THE ROOM.
>>WONDERFUL TALK.
YOU GAVE SOME SOLUTIONS AND THE
IDEAS YOU HAD IN TERMS OF DATA
COLLECTION AND STORAGE AND
TRANSFER ARE THINGS WE TALKED
ABOUT BUT WHAT WE TALKED LESS
ABOUT IS PUTTING CONTROLS ON USE
YOU MENTIONED TWO I CAN
REMEMBER.
UP WITH WAS A MORE FORMAL
REQUEST AND APPROVAL PROCESS AND
THE OTHER WAS INCENTIVE FOR
TRACKING AND MONITORING USE OF
DATA.
DO YOU THINK THEY WOULD WORK,
NUMBER ONE AND DO YOU THINK
THERE'S A POLITICAL WILL TO DO
THAT BECAUSE EMPHASIS ON MORE
OPEN DATA.
>>I DON'T UNDERSTAND WHY
OPENNESS MEANS YOU CAN'T HAVE
FORMAL REQUESTS AND APPROVAL
PROCESSES.
YOU CAN SHARE THIS OPENLY BUT
PEOPLE SHOULD BE OPEN ABOUT WHAT
THEY'RE DOING WITH IT.
WHAT DO WE MEAN BY OPEN AND DATA
REQUEST AND APPROVAL PROCESSES
DON'T ALWAYS MEAN RESTRICTIONS.
IT'S ABOUT A SYSTEM IN PLACE
THAT ALLOWS PEOPLE TO UNDERSTAND
WHAT'S HAPPENING WITH THEIR
DATA.
NOW, GETTING TO THE POLITICAL
POINT AND EVEN THE TRAINING
POINT, THIS IS SOMETHING I
STRUGGLE WITH EVERY DAY AS MY
DAY TO DAY JOB TRYING TO WORK
WITH FELLOW RESEARCHERS.
WE'RE USED TO HAVING FREEDOMS
AND EVEN WITH CONSENT FORMS AND
WE HAVE BOILER PLATE CONSENT
FORMS THAT LIKE YOUR DATA MAY BE
USED FOR THIS OR THIS AND IT'S
NOT SPECIFIC.
THERE'S WAYS WE'VE GROWN
ACCUSTOMED TO DOING FISHING
EXPEDITION AND I THINK THERE CAN
BE A COMPROMISE HERE MANY MAY
FIND IT BURDENSOME OR UNWANTED.
THERE'S TRADE-OFFS WITH
ANYTHING.
>>DO YOU THINK IT WILL WORK?
>>I DON'T KNOW.
I HOPE IT DOES.
FOR THIS TO WORK WE HAVE TO
CHANGE INCENTIVES.
WE HAVE TO INCENTIVIZE THEM TO
DO THIS IN THIS WAY REPORTING
HAS TO CHANGE AND PEOPLE MAY
LIMIT ACCESS TO FULL DATA SETS.
ON ONE HAND THEY'RE TRYING TO
PREVENT IDENTIFICATION OR
STIGMATIZATION AND YOU MAY HAVE
AND NOT ALL RESEARCHERS ARE PART
OF THE LARGER PROCESS.
THERE ARE WAYS TO IMPROVE THIS
TOWARDS SOMETHING THAT IS
BETTER.
>>BEFORE WE MOVE ON TO THE NEXT
QUESTION I WANTED TO GIVE AN
OPPORTUNITY FOR OUR RESEARCH
PARTICIPANT REPRESENTS, NATHAN
COPELAND AND OTHERS TO SEE IF
THERE'S QUESTIONS OR COMMENTS AT
THIS POINT IN THE DISCUSSION.
>>I DO NOT.
I'M THANKFULLY FOLLOWING YOU
BECAUSE THE THING I VIB MY
PRESENTATION.
GOOD TO SEE OTHER PEOPLE THINK
THE SAME WAY.
>>GREAT, THANK YOU.
>>EN JOYED THE TALK THIS
MORNING.
THAT WAS FUN.
BOTH SHARED SKEPTICISM ABOUT
THINGS AND WE'VE SEEN BACKLATCH
-- BACKLASH AND ARE THERE
ASPECT US THINK ARE MOST WORRY
LIKE THE HYPE BE MORE THAN THE
REALITY.
ARE THERE THINGS IN YOU THINK
ARE MOST CONCERNING HERE COULD
BE DERIVED?
I'M NOT SURE BECAUSE WITHOUT THE
ANALYSIS THAT GIVE US CONFIDENCE
IN THE NUMBERS.
FOR EXAMPLE, PREREGISTERED
ANALYSES OF DATA SETS AND
VALIDATION SAMPLES AND THE SORT
OF STUFF AND NEED FAITH IN THE
NUMBERS.
I DON'T KNOW.
IF I HAD TO GUESS I WOULD THINK
FOR EXAMPLE ALZHEIMER'S RISK
BASED ON STRUCTURAL IMAGING DATA
MIGHT BE ONE OF THE EASIER
THINGS TO GET BUT WHETHER IT'S
GOING TO BE PREDICTION WITH
CONFIDENCE INTERVALS THIS BIG OR
THIS BIG WE KNOW RIGHT NOW.
I LIKED WHAT YOU SAID BECAUSE
ABOUT HYPING ALMOST MORE
DANGEROUS.
TOO, TO YOUR POINT ALEX ABOUT
WHAT IS SOMETHING FEASIBLY --
WHAT CAN BE FEASIBLY INFERENCED.
EVEN IF IT CAN'T BE THE DOESN'T
STOP PEOPLE FROM DOING SO AND I
THINK OF PAIN BIOMARKERS.
IT'S BEEN A WHILE SINCE I LOOKED
AT THE LITERATURE BUT AT SOME
POINT IF SOMEONE WAS IN ACUTE
THERMAL PAIN, FOR EXAMPLE, THEY
WERE GETTING BURNED OR IF
SOMEONE WAS EXPERIENCED ACUTE
PRESSURE PAIN THAT'S NOT THE
SAME AS CHRONIC PAIN BIOMARKERS
AND THERE'S A BUNCH OF DEBATE AS
TO WHETHER OR NOT THESE ARE
ACCURATE OR HOW ROBUST THEY ARE
AND STUCH OR THAT YOU CAN EVEN
MEASURE CHRONIC PAIN IN THE
FIRST PLACE.
PEOPLE ARE NOT JUST TALKING THEM
BUT THEY WANT TO USE THEM THEY
WANT TO USE THEM IN PROGRAMS.
EVEN IF THE INFERENCES AND
TECHNOLOGY AREN'T THERE YET IT'S
NOT NECESSARILY STOPPING PEOPLE
FROM USING THEM IN THAT WAY.
THAT'S KIND OF MY MAJOR CONCERN
MORE SO THAN HOW ACCURATE THEY
ARE.
>>THANK YOU BOTH FOR YOUR
PRESENTATIONS THIS MORNING.
THEY WERE ENLIGHTENING.
I HAVE A QUESTION FOR SARA.
TALK ABOUT IMPROVING INFORMED
CONSENT AND DO YOU HAVE OTHER
INSIGHTS FOR DATA USAGE?
>>PEOPLE TALK ABOUT GRANULAR
CONTROLS AND HAVING PLACES WHERE
PEOPLE CAN OPT IN AND OPT OUT TO
SHARING THEIR RESEARCH FOR
DIFFERENT PURPOSES OR FOR
DIFFERENT REPOSITORIES.
SOMEONE YESTERDAY TALKED ABOUT
HAVING DYNAMIC CONSENT AND I
ADMIT THAT IS HARD TO CURRENTLY
DO AT LEAST IN THE U.S.
AT THE VERY LEAST HAVING PEOPLE
TO EASILY CHANGE THEIR MINDS
ABOUT THEY'RE DATA AND HAVING IT
FEASIBLE.
WHEN I WAS IN GRAD SCHOOL IT WAS
AN ARDUOUS PROCESS.
SOMEONE WOULD HAVE TO GO BACK TO
THEIR CONSENT FORM, FIGURE OUT
WHO TO CONTACT EVEN SEND AN
E-MAIL, WAIT FOR THEIR RESPONSE.
IT'S NOT FEASIBLE.
I THINK THERE'S MORE WE CAN DO
TO MAKE SURE THERE'S AT LEAST
SOME DYNAMICS OR SOME ABILITY TO
CHANGE SOMEBODY'S MIND AND MORE
RIGOROUS METHODS OR
REQUIREMENTS.
I THINK PEOPLE GIVE THEM THE
CONSENT FORM READ AND WALKING
THROUGH THAT WITH THEM PROVIDES
A MOMENT TO RESPOND TO QUESTIONS
AND I THINK IT SHOULD BE A
STANDARD.
I DON'T THINK WE SHOULD HAVE
BOILER PLATE MULTI-STUDY CONSENT
FORMS.
I THINK THEY SHOULD BE SPECIFIC
TO RESEARCH THAT IS BEING DONE
AND I THINK THERE'S MORE THAT WE
CAN DO THERE MAKING EXPLICIT AS
WELL AS WHERE THE DATA IS GOING,
WHAT OPEN REPOSITORIES MIGHT IT
GO TO.
THIS TYPE OF THING.
>>THE DATA IS COLLECTED IN
RESPONSE TO A STUDY.
AT SOME POINT IT WON'T BE FUNDED
AND IT'S LIKELY WILL BE IN THE
REPOSITORY.
IS THERE WAY WE SHOULD DEAL WITH
THAT TYPE OF ISSUE?
>>I'M NOT SURE BUT I WONDER
LIKE IN THE E.U. THE RIGHT TO BE
FORGOTTEN.
I DON'T KNOW IF THERE'S A WAY WE
CAN SET UP SYSTEMS THAT MIGHT
HELP TO DO SOMETHING WITH
RESEARCH STUDIES BUT AS I SAY
THAT I ADMIT YOU MAY HAVE DATA
THAT GETS DESTROYED AFTER A
CERTAIN AMOUNT OF TIME AND THE
INFERENCES MOVE ON AMONGST THE
DATA BEYOND THE DATA.
EVEN THAT IT'S HARD TO TAKE AWAY
AN INFERENCE.
IT'S EASIER TO TAKE AWAY A DATA
SET.
>>THANK YOU.
I WAS STRUCK BY UNCONSENTED
INFERENCES.
IF WE TAKE A STARTING POINT IN
SMALL TRIALS WHERE INTENDED
COMMUNICATION IS DECODED, THE
NEURAL DATA ARE PARTICIPANTS'
DATA FIRST AND CAN'T HAVE TO
SHARE ALL OF THEM TO
PARTICIPATE.
HOW SHOULD WE THINK OF TRAIN
RESEARCHERS TO DISENTANGLE
CONSENT FROM THE TRIAL TO THE
CONSISTENT TO NEURAL DATA WITH
MORE OPEN ACCESSIBLE DATA
SHARING AND HOW CAN WE AS
RESEARCHERS BE LEARNING FROM
EACH OTHER HOW DIFFERENT GROUPS
ARE APPROACHING CONSENT AND ARE
THERE OPPORTUNITIES TO SHARE
CONSENT FOR NEURAL DATA SHARING?
>>I WOULD LOVE FOR US TO TALK
ABOUT IT IN A BREAKOUT ROOM IF
THAT'S PART OF WHAT WE'RE GOING
TO DO TODAY BECAUSE EVEN THE
QUESTION IS PORN.
I THINK MORE THAN ME SHOULD BE
ANSWERING THE QUESTION.
>>JOHN NGAI FOR THIS AND THANK
YOU FOR THE PRESENTATION.
IT'S IMPORTANT WITH INFORMED
CONSENT HOW CAN IT BE TRULY
INFORMED TO THE EXTENT IT IS
FUTURE?
IS IT EVER POSSIBLE TO MAKE IT
FUTURE-PROOF GIVEN WHAT WE ARE
SEEING IN MINING THE DATA AND
IT'S A FUNCTION OF PROBABILITY
AND IMPACT.
HOW DO WE FIND THE RIGHT
BALANCE?
YOU CAN NEVER FUTURE PROOF WITH
INFORMED CONSENT AND HOW CAN WE
FIND THE RIGHT BALANCE AND
ADJUST AS WE GO ALONG?
WE DON'T KNOW WHAT'S GOING TO
HAPPEN IN THE FUTURE.
THERE'S A GROUP SOME OF MY FOLKS
HAVE BEEN INVOLVED WITH CALLED
THE OPEN BRAIN CONSENT.
IT'S SUGGESTED CONSENT LANGUAGE
FOR DATA MEANT TO BE SHARED IN
THEM IN OPEN NEURO AND THE DATA
WILL BE SHARED BROADLY AND NO
RESTRICTION ON WHAT PEOPLE CAN
DO AND WHAT QUESTIONS THEY CAN
ASK.
WE'LL DO OUR BEST TO DE-IDENTIFY
THEM AND PREVENT IT BUT WE CAN'T
GUARANTEE IT WILL HAPPEN.
WE TRY TO TAKE THE TACK OF
MAKING CLEAR THAT THESE DATA
WILL BE SHARED BROADLY, COULD BE
USED BROADLY AND YOU CAN SIGN
THE CONSENT FORM OR NOT
DEPENDING ON HOW YOU FEEL ABOUT
THAT.
FOR ME BELIEVING SCIENTIFIC
RESEARCH REQUIRES WE HAVE
RELATIVELY TRANSPARENT ACCESS TO
DATA.
I WORRY THIS IDEA OF FORMAL
APPROVAL PROCESS, YOU MIGHT
IMAGINE IT WORKING WELL.
YOU MIGHT ALSO IMAGINE IT
BECOMING LIKE THE DATA AVAILABLE
PON REASONABLE REQUEST SORT OF
THING PEOPLE MAKE FUN OF BECAUSE
IT MEANS YOU CAN'T HAVE MY DATA.
ONE IS TO MAXIMIZE THE POTENTIAL
IMPACT OF THE DATA.
ANY FRICTION WILL IMPACT THE
UTILITY OF THE DATA.
I STILL THINK THAT WE CERTAINLY
NEED TO MAKE SURE PEOPLE ARE
BEING CONSENTED IN WAYS THAT
ADDRESS THE QUESTIONS SARA
BROUGHT UP BECAUSE IT'S A PRO
FORMA PROCESS.
AND SOMETHING WE THINK WILL
MAXIMIZE SCIENTIFIC UTILITY.
IF YOU TALK TO AND MANY ARE
FRUSTRATED MAKING DATA SHARING A
NIGHTMARE FOR RESEARCHERS.
TIES IMPAIRING OUR ABILITY TO
KNOW WHETHER WE CAN TRUST THE
RESEARCH AND REUSE IT.
THIS IS A COMPLICATED THING.
THERE ARE TRADE-OFFS AND ON THE
ONE HAND IF YOU RESTRICT A LOT
YOU COULD BE HONORING
INDIVIDUAL'S REQUESTS AND MAKE
SURE EVERYTHING IS TO WHAT THEY
CONSENTED FOR AND TRADE-OFF
POTENTIALLY IN SOME CASES
SCIENTIFIC PROGRESS.
IN OTHER CASES YOU MIGHT HAVE
WANT TO MAXIMIZE SECURITY WHICH
MAY MEAN YOU HAVE TO DECREASE
HOW YOU THINK ABOUT PRIVACY
BECAUSE YOU MIGHT NEED TO HAVE
AXIS TO SOMEBODY'S INFORMATION
AND AS WE DEVELOP THESE THINGS
WE AS RESEARCHERS DOCUMENT THE
TRADE-OFF.
WE CAN DOCUMENT WHY WE DID THIS
AND WHAT WERE THE TRADE-OFFS WE
ACKNOWLEDGED WE MADE IN THE
PROCESS AS PART OF THE
TRANSPARENCY IN DOING RESEARCH.
I KNOW AGAIN THIS IS HARD BUT I
APPRECIATE PUSHING BACK AGAINST
SOME OF MY RECOMMENDATIONS BUT I
WONDER IF THIS DISCUSSION IS
EXACTLY WHAT NEEDS TO BE
DOCUMENTED WITHIN THE SYSTEMS SO
PEOPLE UNDERSTAND HOW DO WE
CREATE THE RULES AND SYSTEMS IN
THE FIRST PLACE.
>>YEAH, I LIKE THAT.
>>ONE QUICK THING I THOUGHT OF,
I'VE BEEN ON.
BRAIN BEFORE AND THINKING OF
WHAT TO DO WITH DATA I UPLOADED
OR COLLEAGUES UPLOAD BEFORE AND
STRUCK TOO BY WANTING TO KNOW
WHAT THEY CONSENTED AND MAY BE
COMMON TO HAVE A DESCRIPTION OF
THE TASK BUT WHAT DO
PARTICIPANTS SEE AND I DON'T
KNOW IF THAT'S ANOTHER WAY TO
STOP AND PAUSE AND DO I WANT TO
DO THIS.
DOES IT CONFLICT WITH THE
INTENTION OF THE STUDY OR NOT
AND ANOTHER THING I'M THROWING
OUT THERE.
>>IT SEEMS LIKE IN ORDER TO
MAKE TRADEOFFS AND INFORM OUR
PARTICIPANTS IT WOULD BE HELPFUL
TO CLARIFY THE MAGNITUDE OF THE
RISKS.
AND WITH RESEARCH IN
RE-IDENTIFICATION DATA WHAT
WOULD HELP INFORM THE TRADE-OFFS
AND INFORMED CONSENT DOCUMENTS?
>>I WOULD LIKE TO KNOW HOW
PARTICIPANTS FEEL ABOUT THESE
ISSUES.
THERE'S NOT ONE OPINION PEOPLE
HAVE AND WILL RELATE TO THE
COMMUNITIES THEY'RE PART OF.
WHAT DO PEOPLE THINK ABOUT THIS?
MY COLLEAGUE MICHELLE MELON DID
WORK ON THIS IN CLINICAL TRIALS
THAT SUGGESTED TO ME PEOPLE ARE
MORE INTERESTED AND OPEN TO THE
SHARING OF CLINICAL TRIAL DATA
THAN ONE MIGHT HAVE THOUGHT.
I'D LIKE TO SEE BETTER RESEARCH
ON HOW PEOPLE FEEL AND WHAT ARE
THE VARIABLES THAT AFFECT THEIR
SHARING OF THE DATA.
>>I WOULD LIKE TO SEE WHAT
HAPPENS TO THE DATA.
IF THERE'S A WAY TO SEE WHO USES
THIS AND THE DIFFERENT THINGS
THAT CAP HAPPEN TO DATA SET
AFTER IT'S SHARED TO PEOPLE EVEN
IF PEOPLE THINK IT'S OKAY.
THEY'RE OPEN TO SHARING DATA
GOING BACK TO SOMEBODY WHO SAID
WAS IT INFORMED?
DO PEOPLE KNOW WHAT THEY'RE DATA
COULD BE USED FOR AND WHAT IT IS
USED FOR AFTER IT IS SHARED.
>>PAZ A -- AS A PARTICIPANT I
DON'T MIND SHARING MY DATA BUT I
DO WANT TO KNOW WHERE MY DATA IS
GOING AFTERWARDS.
I'VE SEEN OUR COMMUNITIES
HELPING BUILD NEW DRUGS AND
THERAPIES AND PRODUCTS THAT THEN
CAN'T AFFORD OR GET DENIED THE
TREATMENT THEY HELPED BUILD.
LOOKING AT THE COMMUNITIES
GIVING THE DATA AND MAKING SURE
THERE'S A BENEFIT COMING BACK TO
THEM BESIDES MAYBE IT WILL HELP
YOUR SYMPTOMS ESPECIALLY WHEN WE
SEE THE PROCESSES BEING MADE IN
ALL OF THIS AND KNOWING WE
DIDN'T CONSENT TO ALL OF THIS.
>>THERE'S A WONDERFUL BRIDGE TO
CLOSE THIS PANEL AND NEXT PANEL
WILL BE ABOUT RESEARCH
PARTICIPANTS PERSPECTIVE AND
WE'LL HAVE A SHORT BREAK AND
RECONVENE AT 11:45 EASTERN
STANDARD TIME.
THANK YOU FOR THE EXCELLENT
DISCUSSION.
>>WE'RE GOING TO GET
START AND WE'LL HEAR
PERSPECTIVES ON SHARING HUMAN
BRAIN DATA AND HEAR FROM WHO
PERSPECTIVES WHO HAVE BEEN
WEIGHING IN OVER AND RESEARCH
FOR PARTICIPANT USE ON DATA
SHARING.
THE FIRST SPEAKER IS MR. NATHAN
COPELAND.
HIS JOURNEY WAS SPARK BY A 2004
CAR INCIDENT WHICH RESULTED HIM
LIVING WITH QUADRAPLAGIA AND HIS
BRAIN HAS TWO ELECTRODES AND HE
CAN CONTROL A ROBOTIC ARM AND
RECEIVE SENSORY FEEDBACK A
GROUNDBREAKING ACHIEVEMENT AND
THE HIGHLIGHT OF HIS JOURNEY
INCLUDES A HANDSHAKE WITH THE
U.S. PRESIDENT, ACHIEVING HIS
DREAM OF VISITING JAPAN AND
MAKING VALUABLE CONTRIBUTIONS TO
COMPANIES, PUBLICATION AND
THROUGH HIS EXPERIENCES AND
INSIGHTS.
IN ADDITION HE'S HARNESSED HIS
DEVICE TO DRAW AND PLAY VIDEO
GAMES.
HIS JOURNEY REPRESENTS
RESILIENCE AND EMBODIES THE
POTENTIAL AND PROGRESS IN BCI
RESEARCH.
MR. COPELAND.
HELLO, EVERYBODY.
THANK YOU FOR HAVING ME.
LIKE MENTIONED MY NAME IS NATHAN
COPELAND.
IN 2004 I WAS IN A CAR ACCIDENT
AND IN 2014 I GAME A PARTICIPANT
IN RESEARCH THROUGH THE
UNIVERSITY AND I HAVE FOUR UTAH
RAYS TWO SENSORY AND FOUR MOTOR
AND FIRST HUMAN TO ONE IN THE
CORTEX AND HOLD THE RECORD FOR
LONGEST CHRONIC IMPLANT.
SO WHAT I THINK DATA IN MY BRAIN
IT'S THESE SQUIGGLES AND HISS.
AND THERE'S 256 DATA REPORTED BY
IMPLANT.
USING THE RECORDINGS IN THE
MOTOR CORTEX I WAS ABLE TO GET
REALLY GOOD CONTROL A ROBOTIC
ARM AND USED THREE OR FOUR
DIFFERENT ARMS TO NOW.
SO I GUESS THIS IS SOMETHING
THAT SOMEONE COULD FIGURE OUT
FROM MY DATA WHAT I WAS THINKING
WHEN I WAS MOVING IN DIRECTION
AT THAT MOMENT.
THAT'S ANOTHER THING THAT REALLY
DOESN'T GENERALIZE SUPER WELL
OVER LONG PERIOD OF TIME BECAUSE
A DECODER HAS TO GET TRAINED
EVERY DAY AND EVEN BACK TO BACK
DAYS A DECODER MAY WORK A LITTLE
AND MAY WORK NONE AND I ALWAYS
SAID BRAINS ARE WEIRD BUT ALSO
COMPUTERS ARE KIND OF DUMB AT AT
WHAT BRAINS ARE INTENDING TO DO
SOMETIMES.
FROM MY POINT OF VIEW THERE'S
NOT MUCH I'D BE WORRIED ABOUT
WITH SOMEONE GETTING HOLD OF
THAT KIND OF DATA IN ANY WAY.
ON THE SENSORY SIDE EACH IS
CAPABLE OF MICROSTIMULATION.
A BURST OF ELECTRIC INTO MY
BRAIN WILL ELICIT A SENSATION
THAT FEELS LIKE IT'S COMING FROM
MY OWN HAND THIS DIAGRAM SHOWS
THE ARRAY ON THE RIGHT SIDE AND
THE CORRESPONDING PLACE I RECORD
SENSATION ON THE LEFT SIDE AND
THERE'S HUNDREDS OF TIMES WHERE
I SAID WHAT THAT FEELS LIKE THAT
CAN RANGE FROM PRESSURE, TINGLE,
TAPPING, WARMTH AND THE
SENSATIONS ARE ALL
ELECTRODEPENDENT AND CAN CHANGE
BASED ON THE STIMULATION
PARAMETERS AND FREQUENCY AND
THAT KIND OF THING CAN ALTER HOW
I PERCEIVE THE SENSATIONS WHICH
IS ALSO NOT SOMETHING I WOULD BE
WORRIED ABOUT SHARING.
>>LET ME KNOW WHEN AND WHERE
YOU FEEL IT.
AFTER I'VE DONE ALL THE MOTOR
TASKS, I'VE DONE SENSORY TASKS
WHERE WE MAPPED THE SENSATIONS.
THE CONFIGURED THE SENSORS ON
THE ROBOTIC ARM TO AN ELECTRODE
THAT WAS ALREADY FIGURED OUT TO
FEEL LIKE THE CORRESPONDING
FINGER.
THAT WAS THE FIRST TIME THEY
TRIED THAT TASK WITH A BLINDFOLD
AND IT WORKED WELL.
THIS IS BASICALLY A COMBINATION
OF ALL THE OTHER TASKS DATA WISE
ALSO A LOT OF THESE ARE GOING TO
BE SUPER SIMPLE BECAUSE I'M NOT
A RESEARCHER AND I GO WITH THE
FLOW SO I'M NOT WORRIED ABOUT
MANY STUFF ON MY OWN AND
COMBINING MOTOR CONTROL AND
SENSORY CONTROL YOU END UP WITH
BI-DIRECTIONAL CONTROL.
THIS WOULD BE MY BRAIN SENDING
SIGNALS TO THE ROBOT AND ROBOT
SENDING SIGNALS BACK TO MY BRAIN
AND YOU END UP BEING ABLE TO DO
TASKS LIKE THIS THIS IS A
COMPARISON WITH AND WITHOUT
SENSORY FEEDBACK.
WITH SENSORY FEEDBACK I WAS A
GOOD BIT FASTER AND WITH THE
EXTRA FEEDBACK BEYOND MY VISION
I WAS ABLE TO TELL WHEN THE
ROBOTIC ARM WAS MAKING GOOD
CONTACT WITH THE OBJECT AND
WOULD PICK IT UP AND MOVE IT AND
WITHOUT FEEDBACK SOMETIMES I
WOULD THINK IT'S IN THERE GOOD
AND GO TO LIFT IT AND IT WOULD
FALL OUT AND THAT SORT OF THING.
HERE'S SOME OF THE COOLEST
THINGS I'VE BEEN ABLE TO DO
2016, HANDSHAKE AND FIST BUMP
WITH OBAMA.
THAT WAS THE COOLEST THING I
EVER DID BECAUSE OF THE STUDY
AND THAT LEADS US TO THE NEXT
SLIDE.
I WENT TO JAPAN TO DO A COUPLE
PRESENTATIONS AT A CONFERENCE
AND A FEW UNIVERSITIES.
MY BIO MENTIONED LIKING TO DRAW
AND PLAY GAMES.
I HAVE ARTWORK AT A VCR ART
EXHIBIT AT THE AMERICAN
ASSOCIATION FOR THE ADVANCEMENT
OF SCIENCE MUSEUM IN WASHINGTON,
D.C.
IT'S THERE THROUGH NOVEMBER.
I'VE SOLD SOME ART AS NFTs.
I PLAN TO EVENTUALLY PUT
TOGETHER A WEBSITE AND MAYBE
SELL SOME PRINTS AND STUFF.
STAR WAYS DAY IS MY IMPLANT
ANNIVERSARY SO WE DO DUMB STUFF.
THESE ARE OTHER THINGS I'VE
CONTROLLED WITH MY BCI AND
EXOSKELE
EXOSKELETON GLOVE AND THIS IS
ROUGHLY WHAT THE SYSTEM AT THE
LAB LOOKS LIKE.
AND A FEW YEARS AGO I WAS GIVEN
THIS PORTABLE SYSTEM TO USE AT
HOME.
I CAN USE IT BY MYSELF THERE'S A
NEWER VERSION THAT'S MORE
POWERFUL I CAN USE AND DIDN'T
LET ME CONTROL ROBOTIC ARMS OR
STIMULATION BUT CAN DO ALL THE
CUR
CURSER BASED THINGS I LIKE DOING
AND THIS IS WHAT I DO AND WRITE
E-MAILS BUT THEORETICALLY THE
EASIEST WAY COULD BE TO TAP YOUR
COMPUTER BUT IF SOMEONE SHARING
BRAIN DATA CONTAINS THINGS LIKE
WHAT PROGRAM I WAS RUNNING THE
POSITION ON THE SCREEN AND THE
CURSER WAS AND THAT SORT OF
THING AND IS THE ONE THING I
THOUGHT ABOUT HERE'S MORE
DRAWINGS LIKE THE HEDGEHOG AND I
HAVE A YOUTUBE CHANNEL CALLED
BCI CAN DO BETTER.
WIRE CONNECTIONS AND BCI AND THE
EQUIPMENT AND NEEDING PEOPLE TO
HELP YOU RUN IT AND PEOPLE TO
SET IT UP FOR ME AND THEN RUN IT
FROM THERE AND DECODER
RETRAINING AND THIS COULD KEEP
SHARING THE DATA NOT HAVING MUCH
USE BEYOND WHAT IT WAS INTENDED
FOR AND ONLY AT THAT EXACT
MOMENT IN TIME WHEN I WAS DOING
IT.
I THINK THAT'S ALL FOR SLIDES IF
THAT MAKES SENSE.
AND LOOK AT THE DECODERS AND
FIGURE OUT A WAY TO USE THE
DECODER AND WORK AND NOT
INTEREST TO TRAIN IT ALL THE --
HAVE TO TRAIN IT ALL THE TIME.
THINGS LIKE MY POSTURE AT THE
TIME AND THERE'S A VARIETY OF
THINGS I THOUGHT TO GET STUFF
WORKED THIS IS MY FAVORITE ROBOT
ARM AND NOW IT'S BACK IN THE LAB
AND HOPEFULLY I CAN USE IT
AGAIN.
IT'S MY FAVORITE BECAUSE IT'S
ACTUALLY NOT ANATOMICAL WHICH
LETS IT MOVE WITHIN THE WORK
SPACE A LOT FREER.
ASK ME SOME QUESTIONS BECAUSE
I'M NOT WELL VERSED IN DOING THE
WHOLE ETHICS THING YET.
>>THANK YOU SO MUCH
MR. COPELAND FOR TELLING US
ABOUT YOUR JOURNEY AND SHARING
HIGHLIGHTS.
WE HAVE TIME FOR QUESTIONS.
THANKING TIME TO SHARE YOUR
INSIGHT.
IT'S INCREDIBLE TO THINK ABOUT
THE RISKSES AND BENEFITS OF
SHARING AND PERCEIVED RISK FROM
A PERSON HAVING BRAIN DATA
RECORDED.
YOU DESCRIBE THE CLASPING COULD
BE DECODED OVERTIME.
THINKING IN A WORLD WHERE THAT
COULD BE DECODED AND WE TALKED
ABOUT THE POSSIBILITIES OF
INCIDENTAL FINDINGS, MAYBE
THERE'S A DISEASE PROCESS OR
SOMETHING DIFFERENT ABOUT YOUR
BRAIN ACTIVITY OR IMAGINE
SLOWING OF ABILITIES TO GRASP OR
MOVE THINGS QUICKLY OR
INFERENCES THAT CAN BE MADE FROM
THE DATA.
THINKING OF THE ENABLING ASPECTS
OF THE TECHNOLOGY FOR YOU AND
ALSO FOR YOU INDIVIDUALLY HOW
YOU WOULD WANT THAT DATA USED OR
WITH WHOM YOU WOULD WANT IT
SHARED WITH THE RESEARCHERS.
DO YOU HAVE PREFERENCES, DESIRES
WITH WHOM YOU WOULD SHARE OR HOW
BROADLY THOSE KINDS OF
INFORMATION MAY BE USED, MEANING
IF THERE WERE ADDITIONAL
INFERENCES THAT COULD BE GLEANED
FROM YOUR DATA HOW DO YOU THINK
ABOUT THAT IN WHO YOU WANT TO
SHARE IT WITH AND WHAT OTHER
PEOPLE MAY HAVE ACCESS TO THAT
DATA, ETCETERA.
>>I'LL START WITH ONE THING I
KIND OF SKIPPED OVER IN MY STORY
OF MY EIGHT YEAR JOURNEY, MY
MOTIVATION TO START THIS WAS
KNOWING HOW SMALL THE INCLUSION
CRITERIA WAS YOU HAVE TO BE IN
THE RIGHT AREA WHERE THEY'RE
DOING THE RESEARCH AND SOMEHOW
KNOW ABOUT THE RESEARCH BEING
DONE AT THAT POINT OR IT LED ME
TO A HOSPITAL SYSTEM AND
RESEARCH AND THE FIRST THING
THEY ASKED ME ONE OF THE FIRST
THINGS WAS IF I WANTED TO BE PUT
ON A RESEARCH REGISTRY.
SO IN THE FUTURE I WOULD -- MY
INFORMATION WOULD POP UP TO ANY
RESEARCHER LOOKING FOR THE
CONDITIONS I WOULD QUALIFY FOR.
I DID A SCREENING FOR THE SAME
BCI STUDY WITH THE SAME GROUP A
FEW YEARS BEFORE I ACTUALLY
JOINED BUT THAT WAS A PART OF
STUDY THAT DIDN'T INCLUDE THE
SENSORY CORTEX STIMULATION.
I DIDN'T QUALIFY BECAUSE I HAVE
RISK EXTENSION BUT NOT FLEXION
AND EXTENSION WAS LIST EDED AS
SIGNIFICANT HAND FUNCTION WHICH
DISQUALIFIED ME.
FAST FORWARD I GET ASKED AGAIN,
I WAS DOING AN FMRI, MEG STUDY
WITH PEOPLE FROM THE SAME LAB
AND THAT THE POINT IT
IMMEDIATELY PUT ME INTO HOW I
KNOW PEOPLE CAN SO HOW CAIN NOT?
I WANTED TO BE ABLE TO HELP PUSH
THE SCIENCE FORWARD BECAUSE
THERE'S THIS DESPAIR PERIOD
AFTER CATASTROPHIC INJURIES OR
EVEN ONES THAT TAKE THEIR TIME
TO GET WORSE LIKE ALS AND STUFF.
ARE TOLD YOU CAN'T DO THE THINGS
YOU LOVED ANYMORE AND KIND OF
HAVE THIS PERIOD OF DESPAIR AND
SOME PEOPLE FIND THINGS TO TAKE
THEM OUT OF IT AND SOME DON'T.
I WANTED TO PUSH THINGS FORWARD
TO WHERE INSTEAD OF BEING TOLD
YOU CAN'T DO THESE THINGS YOU
SAY YOU GET TOLD YOU CAN'T DO
THESE THINGS THE WAY YOU DID BUT
I HEAR SOME TECHNOLOGIES THAT
CAN HELP YOU DO THEM ANYWAY.
MY MOTIVATION HAS ALWAYS BEEN TO
PUSH THE SCIENCE FORWARD.
WITH THAT AS MY MAIN MOTIVATION
I'M FINE WITH ALL MY DATA BEING
SHARED WITH ANYONE THOUGH THOUGH
IT'S NEURONS BEING RECORDED IN A
SMALL AREA OF MY BRAIN.
AND MBCIs ARE DIFFERENT BECAUSE
OVER TIME THERE'S A SIGNAL
QUALITY DEGRADATION NO ONE KNOWS
WHERE IT WILL CAP OFF AT.
MY PERSONALLY I'M STILL FINE IF
SOMEONE THINKS THEY HAVE A USE
FOR SOME OF MY DATA THOUGH SOME
MAY NOT BE SUPER USEFUL JUST
KNOWING WHEN A PART OF MY BRAIN
WAS STIMULATED AT A CERTAIN
PARAMETERS I FELT A SPECIFIC
SENSATION THAT'S BEEN DOCUMENTED
AND THAT CAN BE COMPARED TO
OTHER PEOPLE SIMILAR SITUATIONS,
SIMILAR STIMULATIONS AND
EVENTUALLY DOWN THE LINE THEY
CAN ELICIT SENSATIONS THAT FEEL
MORE NATURAL OR IT TAKES LESS
TIME
>>THAT'S INCREDIBLY HELPFUL.
THANK YOU.
IF THERE'S A MOMENT TO FOLLOW-UP
ON THAT -- REAL QUICK, JUST,
THAT DESIRE TO SHARE YOU
DESCRIBE IT AS DRIVING PART OF
YOUR DECISION TO BE PART OF THE
RESEARCH STUDY.
IS IT ADEQUATE FOR YOU ONCE TO
GIVE THAT BLANKET CONSENT OF THE
SHARING OF THE DATA WOULD YOU
WANT TO BE ASKED AGAIN AND AGAIN
AS RESEARCH STUDIES CAME IN OR A
BLANKET, YES, I WANT TO BE
INFORMED NO MATTER WHAT CAN BE
DISCOVERED OVER TIME?
>>I HAVE TWO ANSWERS FOR THAT.
FOR ME PERSONALLY ONCE IS
ENOUGH.
I ALSO THINK IT WOULD BE
INTERESTING TO KNOW WHO ELSE GOT
IT OR WHAT THEY WERE DOING WITH
IT OR IF SOMETHING CAME ABOUT
FROM IT.
FOR WHAT IT IS NOW FOR ME, ONCE
IS ENOUGH.
IF IT'S A DIFFERENT STUDY AND
THINGS ARE SLIGHTLY DIFFERENT
WHICH IS THE CASE FOR ALMOST
EVERYONE, IT MIGHT BE MORE
APPROPRIATE FOR THEM TO SAY I
WANT TO BE ASKED EVERY TIME.
THEY WANT THIS KIND OF DATA OR
THIS VERY SPECIFIC ONE OR
BROADER NOTIFICATIONS BUT DON'T
NECESSARILY HAVE TO RESPOND IN
ANY WAY IF THAT MAKES SENSE.
>>IT DOES AND THANK YOU VERY
MUCH.
>>THANK YOU AGAIN MR. COPELAND.
OUR SECOND SPEAKER IS CHRISTINE
VON RAESFELD.
SHE IS FOUNDER AND CEO OF PEOPLE
WITH EMPATHY.
A PILLAR OF PATIENT ADVOCACY AND
ALLIESHIP IN RARE AND CHRONIC
DISEASE COMMUNITY AND THROUGH
HER LIVED EXPERIENCE SHE'S
BECOME A CHAMPION FOR PATIENT
VOICES AND DIVERSITY IN CLINICAL
RESEARCH AND MS. VON RAESFELD
BROUGHT HER PERSPECTIVE AND
EXPERTISE AS A FEATURED SPEAK
FOR NUMEROUS TOPICS FROM DATA
AND DIGITAL RIGHTS AND
RECRUITMENT FROM THE PATIENT
PERSPECTIVE.
SHE SERVED AS AN E-PATIENT
SCHOLAR WITH NIH "ALL OF US"
RESEARCH AND TECHNOLOGY EXPERT
PANELIST FOR CENTER FOR MEDICAID
AND MEDICARE SERVICE.
AND SHE HAS OTHER ROLES.
>>CAN YOU HEAR ME NOT ONLY ON
BEHALF OF MY OWN NONPROFIT BUT
ALSO WITH ONE OF THE OTHER
NONPROFITS THAT I WORK WITH AND
YOU'LL SEE A THE LIGHT
COLLECTIVE.
WE'RE EXPERIENCED PATIENTS
BUILDING TECH AND DIGITAL RIGHTS
FOR OTHER PATIENT COMMUNITIES TO
REPRESENT THE COLLECTIVE RIGHTS
AND INTEREST AND VOICES OF
PATIENT COMMUNITIES IN HEALTH
TECH.
RIGHT HERE YOU'LL SEE A PICTURE
OF US AT DEF CON IT'S A HACKER
CONVENTION.
TWO YEARS BEFORE I HAD GOTTEN AN
IMPLANTABLE CARDIAC DEVICE PUT
IN.
WHEN I WENT TO THE CONFERENCE I
WAS BANNED FROM THE BIO HACKING
BECAUSE THERE WAS A THREAT
AGAINST MY BLUE TOOTH ENABLED
DEVICE.
THAT WAS ONE OF THE FIRST
EXPERIENCES OR MANY EXPERIENCES
WHEN IT COMES TO MY SECURITY AND
TECHNOLOGY.
YOU'LL SEE WHERE IT STARTED FOR
ME.
I GREW UP IN THE SILICON VALLEY
AND WHEN THEY SAY YOUR ZIP CODE
DETERMINES YOUR CARE, IT DOES.
IF I HAD GROWN UP IN ANY OTHER
AREA I WOULD NOT BE HERE
SPEAKING TO YOU TODAY.
I PARTICIPATED INSEVER STUDY AND
RESEARCH OPPORTUNITY I COULD
GET.
BY THE WAY, I'M 48 YEARS OLD AND
STILL UNDIAGNOSED BUT HAVE OVER
30 CONDITIONS IN MY CHARTS AND
OVER 40 PHYSICIANS I WORK WITH
TO KEEP MY CARE GOING.
TWO STORIES I PARTICIPATED IN
WHERE THE INFORMATION COULD HAVE
HELPED ME AND I PARTICIPATE TO
SHARE THIS AND I FIND I DON'T
GET A LOT OF THIS INFORMATION
BACK FOR ME OR MY CARE TEAM.
ONE STUDY STARTED IN 2017 WHAT
YOU ALL KNOW NOW AS 23 AND ME.
BACK THEN IT WAS A LUPUS STUDY
AND AS A COMMUNITY WE WERE ASKED
TO FILL OUT SURVEYS AND HELP
THEM WITH THEIR RESEARCH AND
WHAT WE WOULD GET BACK WAS RAW
DATA.
SO WE ALL DID IT.
I GOT BACK A FORM OF MY RAW DATA
OR A DISK AND BROUGHT IT TO MY
DOCTORS AND THEY LOOKED AT ONEs
AND ZEROs AND TOLD ME TO KEEP IT
BECAUSE LATER DOWN THE LINE IT
WOULD COME IN HANDY.
I MET A WOMAN WHO WAS ABLE TO
INTERPRET IT AND HER RESPONSE
WAS SHOCKED.
SHE SAID WHAT DID THEY DO AFTER
THEY SAW THE RESULTS, I SAID
WHAT DO YOU MEAN, WHAT DID THEY
DO?
SHE SAID YOU HAVE DENSITY
MUTATIONS IN YOUR MITOCHONDRIAL
I'VE NEVER SEEN BEFORE AND
DELETIONS AND ADDITIONS AND I'M
SURPRISED AND SHOCKED NO ONE
TOLD YOU THIS.
SO RECENTLY I'M IN A
LONGITUDINAL COVID STUDY WHERE I
WAS DIAGNOSED WITH COVID.
MY P.I. CALLED ME I WAS
CURRENTLY IN THE HOSPITAL AT THE
TIME AND TOLD MY PHYSICIANS I
HAD TESTED POSITIVE AND THEY RAN
THEIR OWN TEST I HAD SURGERY
SCHEDULED FOR TWO DAYS LATER
THEN CANCELED BECAUSE THE
INFORMATION FROM MY STUDY WAS
NOT ABLE TO BE SHARED WITH MY
PROVIDERS.
SO THOSE ARE TWO EXAMPLES,
MYSELF WHERE I'VE HAD
INFORMATION THAT COULD HAVE BEEN
HELPFUL BUT REALLY WASN'T.
SO HERE'S MY -- AND BY THE WAY,
THAT'S DAMAGE FROM MY BRAIN AND
I'M HALF ASIAN AND I METABOLIZE
SOME COMPOUNDS DIFFERENTLY
CAUSING MORE DAMAGE THAN MAYBE
THEY SHOULD HAVE.
I WAS A REPRESENT FOR PATIENTS
LIKE ME WAY BACK WHEN WHICH GOT
ME INVOLVED WITH MY DIGITAL TWIN
AND WHAT COULD WE DO WITH
TECHNOLOGY.
I SHOWED UP ON THE DARK WEB
RECENTLY AND I'VE HAD PEOPLE
HACK MY PROFILES AND STEAL MY
PICTURES AND PRETEND TO BE ME.
THEN THE LAST PICTURE RIGHT
THERE OF THE FLOWERS IS TARGETED
AT MARKETING.
MY ADS THAT SHOW UP ON FACEBOOK
BECAUSE OF THINGS I SEARCH ARE
FLOWERS FOR FUNERALS.
WHAT DO YOU THINK THAT DOES TO
THE MENTAL HEALTH OF A PATIENT.
HERE WE TALK ABOUT CONTENT AND
IT'S BROKEN.
I LIKE TO TELL PEOPLE CONSENT IS
A COVER YOUR ASS FORM OF
RESISTANCE.
IT'S A PATIENT GOING THROUGH
TRAUMA VERSUS TEAMS OF LAWYERS
AND CONTRACTS AND DIGITAL DARK
PATTERNS WE'LL GO INTO IN A
MINUTE AND YOU CAN ADD BACK ROOM
DEALS ON THE SECONDARY USE OF
OUR DATA AND TECH FORM PLATFORMS
WHO ARE ALSO TAKING ADVANTAGE OF
THAT DATA.
SO WHAT WE DON'T CONSENT TO IS
SIGNING AWAY OUR HUMAN RIGHTS
BUT IN ORDER TO GET OUR CARE, WE
HAVE TO CONSENT TO THESE THINGS.
SO REALLY TAKING A LOOK AT THAT
CONSENT PROCESS AND WHAT IT
MEANS BUT THIS IS WHAT IT IS
WHEN WE CONSENT TO A TREATMENT.
WHEN I GOT THIS BLUE TOOTH
ENABLED PACEMAKER PUT IN WE PUT
IT IN WITHIN FIVE DAYS BECAUSE
WE HAD DATA THAT I NEEDED IT BUT
WITHIN THE FIVE DAYS THERE WAS
NO WARNING.
MY CONSENT WAS YOU NEED THIS OR
YOU'LL DIE AND SIGNED AWAY NOT
KNOWING THERE WAS A RISK WITH A
BLUE TOOTH ENABLED DEVICE AND
THINGS WE NEED TO THINK ABOUT
WHEN WE LOOK AT THESE.
ANDREA IS THE FOUNDER OF THE
LIGHT COLLECTIVE AND SECURITY
RESEARCHER WHO DISCOVERED A FLAW
IN FACEBOOK'S ALGORITHM THAT
EXPOSED USER'S PRIVATE
INFORMATION TO UNAUTHORIZED
THIRD PARTIES AND IDENTIFIED A
VULNERABILITY IN THE DATA
ENCRYPTION ACCESS ALLOWING MER
TO ACCESS DATA WITHOUT DETECTION
AND PROMPTED FACEBOOK TO SWIFTLY
ADDRESS AND PATCH THE FLAW,
REINFORCING THEIR COMMITMENT TO
USER PRIVACY AND SECURITY BUT
NOT OUR HEALTH INFORMATION.
YOU'LL SEE LATELY I DON'T KNOW
IF YOU SAW YESTERDAY BUT THE FTC
FILED SUIT BLOCKING THE
ACQUISITION OF THE MEDIA WE'RE
SEEING EIGHT OF IN THIS SPACE
FROM THE WORK WE'RE DOING HERE.
SO FACEBOOK AND OTHER SOCIAL
MEDIA PLATFORMS MAY COLLECT
OTHER TYPES OF DATA INCLUDING
DEMOGRAPHIC INFORMATION AND
INTEREST, BEHAVIORS AND
INTERACTIONS AND OFTEN EMPLOY
SOPHISTICATED ALGORITHMS TO
ANALYZE THE DATA AND HAVE
PERSONALIZED CON BUT THE
INFORMATION MAY NOT DIRECTLY
COME FROM HOSPITALS.
IT CAN STILL CONTRIBUTE TO
BUILDING DETAILED PROFILES OF
USERS WHICH COULD INDIRECTLY
REVEAL HEALTH RELATED
PREFERENCES.
AND YOU'LL SEE AND I THINK I'M
SURE SOME KNOW HHS ISSUED THAT
ALL HOSPITALS HAVE TO WATCH THE
PIXEL TRACKING.
AS WE GO ON YOU CAN SEE SOCIAL
MEDIA BEING USED IN OTHER WAYS.
THERE WAS A REVELATION A WHILE
BACK THAT EMERGED WHEN IT WAS
DISCOVERED A SUICIDE CHAT LINE
NON-PROFIT HAD UNETHICALLY
UTILIZED THE DATA FOR A
FOR-PROFIT DRIVEN PURPOSE.
THEY WERE TAKING THE INFORMATION
FROM THE CHAT BOX AT THE TEXT
LINE AND USING THEM TO TRY TO
BUILD A WAY OF COMMUNICATING FOR
OUTSIDE OF HEALTH CARE WHICH WAS
EXTREMELY CONCERNING TO THOSE
WHO WERE USING THAT CHATBOT AND
I'M SURE WOULD BE TO YOU AS
WELL.
THE NON-PROFIT BETRAYED THE
PRINCIPLES THEY WERE FOUNDED ON.
THIS PROMPTED A DEMAND FOR
STRICTER REGULATIONS TO
SAFEGUARD THE PRIVACY AND WELL
BEING OF THOSE SEEKING MENTAL
HEALTH SUPPORT.
SO HERE IS WE'RE SHOWING WOMEN
AND MINORITIES ARE OFTEN HACKED
MORE THAN OTHERS AND IF YOU LOOK
AT THE STATISTICS DOWN AT THE
BOTTOM I WON'T READ THEM ALL TO
YOU BUT IT SAYS USERS THAT HAVE
A HIGHER LEVEL OF EDUCATION FEEL
MORE SECURE.
WHILE WE THINK WE'RE PREPARED WE
REALLY AREN'T.
SO CLINICIANS NOW ARE DEVELOPING
PREDICTIVE ALGORITHMS AND SO AS
WE LOOK AT THAT AND LOOK AT
DIGITAL DARK PATTERNS, WHICH WE
JUST DISCUSSED, AND THOSE IN
CASE YOU DON'T KNOW ARE
DECEPTIVE OR MANIPULATIVE DESIGN
TECHNIQUES THAT ARE USER
INTERFACES USED TO TRICK OR
MISLEAD PATIENTS OR PEOPLE BY
CLICKING ON THE LINKS OR USING
THE APPS.
REALLY COLLECTING INFORMATION.
SOME EXAMPLES OF DIGITAL DARK
PATTERNS INCLUDE
[AUDIO DIGITIZING]
CONTRACTS AROUND THEN FORWARD
AND NOT BEING ABLE TO GET OUT OF
THOSE CONTRACTS.
I JUST LOST MY TIMER.
HOW MUCH DO I HAVE LEFT?
I'LL SPEED THROUGH THE REST OF
THIS.
THESE DARK PATTERNS EXPLOIT
COGNITIVE BIAS THAT MAY NOT
ALIGN WITH TRUE INTENTIONS OR
INTERESTS.
THEY'RE UNETHICAL AND ERODE USER
TRUST AS THEY PRIORITIZE THE
GOALS OF BUSINESS OVER THE NEEDS
AND RIGHTS.
REGULATORY BODIES AND CONSUMER
ADVOCACY GROUPS ARE INCREASINGLY
FOCUSSED ON IDENTIFYING AND
DISCOURAGING THE USE OF DARK
PATTERNS.
IT'S IMPORTANT TO LOOK AT
PSYCHIATRIC DATA AND NOW ADD
REPRODUCTIVE HEALTH DATA TO THE
MIX.
IMAGINE A WOMAN WITH POSTPARTUM
DEPRESSION AND RESEARCHERS MUST
BE THOUGHTFUL OF THE STATES IN
WHICH THEY CONDUCT CERTAIN
RESEARCH
>>ANY QUESTIONS FOR CHRISTINE?
TO CLOSE OUT MY LAST THOUGHTS I
SEE THIS GOING TO MORE OF A
MARKETPLACE WHERE AS A PATIENT I
HAVE AGENCY OVER MY DATA AND I
CAN TAKE MY DATA AND INVEST IT.
I DON'T WANT TO GO THROUGH A
MILLION CONSENTS ALL THE TIME
BUT I WANT IT OUT TO RESEARCH
BUT WANT IT AS EASY AS POSSIBLE
FOR ME BUT I DON'T WANT ONE
BLANKET CONSENT THAT HAS ME SIGN
OFF EVERYTHING.
I DO WANT TO KNOW WHERE ANY DATA
IS GOING, WHAT'S IT BEING USED
FOR AND HOW ARE PEOPLE
PROFITING.
I'M NOT AGAINST PROFITS AS A
PATIENT AT ALL.
I THINK WE NEED PROFITS IN ORDER
TO STIR INNOVATION BUT HOW DO WE
DO THIS IN A FAIR WAY WITH
PEOPLE GENERATING THE DATA AND
NOT GETTING ANYTHING BACK FROM
IT?
NONE THEY CAN BENEFIT FROM AND
WE WANT TO OPEN UP MY DATA TO
INTERNATIONAL RESEARCHERS AND
WHEN WE DON'T HAVE IT TO FIX MY
OWN PROBLEM WHAT I ASK IS IF WE
HAVE ALL THESE PEOPLE
CONTRIBUTING EVERYTHING THEY
HAVE FOR YOU I'VE BEEN FORCED TO
LIVE IN CERTAIN FINANCIAL
GUIDELINES THE LAST 20 YEARS TO
GET THE CARE I NEED BUT I ALSO
FEEL THE INFORMATION I PRODUCE
AND THE WORK I DO REVIEWING
PANELS AND THE MONEY THAT'S MADE
WHILE WE'RE FORCED TO LIVE IN
POVERTY.
I THINK ONE THING WE HAVE TO
CONSIDER IS AGENCY OVER THE DATA
AND WHAT ARE THESE PEOPLE GIVING
BACK ESPECIALLY AS WE'RE MOVING
INTO MORE DIGITAL
[NO AUDIO]
>>I THINK WE WANT RESEARCHERS
TO FEEDBACK INFORMATION THAT'S
AVAILABLE TO YOU AND YOUR
PROVIDERS.
THAT YOU SAID YOU DON'T WANT TO
BE ASKED EVERY TIME BUT WOULD A
TRUSTED BROKER MODEL LIKE A
PERSON YOU TRUST TO MAKE THOSE
DECISIONS FOR YOU?
OKAY.
I DO.
IT SHOULD BE AN AGENT AND THE
OWNERSHIP SHOULD GO BACK TO THE
PATIENT GROUPS AND THE PROFIT
SHOULD GO BACK TO THE PATIENT
GROUPS.
I THINK IF WE WERE TO REORGANIZE
THE GROUPS IN A DIFFERENT WAY TO
MAKE THEM MORE EFFECTIVE TO CUT
SOME OF THE COSTS WE HAVE FOR
RECRUITING AND RETENTION AND
BUILD THAT TRUST WITH THOSE
GROUPS I THINK WE'D BE MORE
EFFECTIVE AND GETTING OUT THE
MESSAGES WE NEED TO GET OUT TO
THOSE COMMUNITIES.
>>I THINK WE'LL MOVE ON TO THE
NEXT SPEAKER AND HAVE YOU PART
OF THE DISCUSSION.
THANK YOU SO MUCH.
>>THE LAST SPEAKER ON THE PANEL
IS MY FRIEND, AMY McGUIRE THE
LEON JAWORSKI PROFESSOR OF
BIOMEDICAL ETHICS AND DIRECTOR
FOR AT BAYLOR COLLEGE OF
MEDICINE AND RECEIVED HER JD
FROM UNIVERSITY OF HOUSTON AND
Ph.D. FROM UNIVERSITY OF TEXAS
MEDICAL SCHOOL AT GALVESTON.
DR. McGWIRE RESEARCHES ETHICAL
AND POLICY ISSUES RELATED TO
EMERGING TECHNOLOGIES AND
INNOVATIVE THERAPEUTICS WITH A
PARTICULAR FOCUS ON GENETICS AND
GENOMICS, NEURAL PSYCHOLOGY AND
CLINICAL INTEGRATION OF
NEUROLOGICAL DEVICE.
WE WELCOME AMY TO SHARE DATA
SHE'S GOT ON THE TOPIC.
THANK YOU, AMY.
>>THANK YOU, CHRISTINE.
>>THIS HAS BEEN GREAT AND
MISSED SOME OF YESTERDAY BUT I
HEARD THE DISCUSSION AND IT'S
BEEN FANTASTIC.
I'M PRIVILEGED TO BE ON THIS
PARTICULAR PANEL WITH
INDIVIDUALS WHO HAVE REAL
EXPERIENCE BECAUSE I THINK THOSE
ARE THE FOLKS WHO SHOULD BE
INFORMING THIS DISCUSSION THE
MOST.
IT'S WITH HUMILITY I DO THIS
PRESENTATION.
I'M PRESENTING EMPIRICAL DATA
AROUND THE ISSUE OF DATA SHARING
AND SHARING SOME THOUGHTS THAT
HA
HAVES BEEN INFORMED BY PATIENTS
MOST AFFECTED BY THIS.
I'LL SHARE DATA FROM A NEURO
ETHICS STUDY ONGOING CALLED
BRAIN SHARE.
WE'RE VERY MUCH IN THE MIDDLE OF
COLLECTING DATA FOR BRAIN SHARE.
I HAVE PRELIMINARY DATA TO SHARE
AND WILL BE HAPPY TO WORK WITH
THIS GROUP TO COLLECT ADDITIONAL
DATA THAT MAY NECESSARY TO
INFORM THE DELIBERATIONS AND
REPORT BACK WHAT WE LEARNED
GOING FORWARD.
I WANT TO START WITH MY
CONCLUSION.
I KNOW IT'S BEEN A LONG TWO
DAYS.
I'LL BRENT SOME DATA AND GIVE
FINAL THOUGHTS.
THE FIRST QUESTION I REALLY
WANTED TO TRY TO ADDRESS IS
SHOULD WE BE SHARING BRAIN DATA
AT ALL?
AND I THINK THIS HAS COME UP
MANY TIMES OVER THE LAST COUPLE
DAYS BUT IT REALLY IS WHEN YOU
DECIDE ABOUT DATA SHARING IT'S A
TRADE-OFF.
IT'S A TRADE-OFF BETWEEN THE
POTENTIAL RISKS AND BENEFITS
BECAUSE THERE ARE A LOT OF
BENEFITS AND SOME POTENTIAL
RISKS.
AND HOW PEOPLE MAKE THAT
TRADE-OFF IS GOING TO DIFFER
INDIVIDUALLY SO SOME PEOPLE WILL
FEEL VERY DIFFERENTLY ABOUT
THEIR PRIVACY THAN OTHERS AND
MAY FEEL DIFFERENTLY GIVEN THE
CIRCUMSTANCES THEY'RE IN.
WE'VE HEARD FROM SOME
INDIVIDUALS ALREADY ON THE PANEL
WHO ARE PATIENTS AND MOTIVATED
TO ADVANCE SCIENCE AND THAT MAY
OUTWEIGH PRIVACY CONCERNS THEY
HAVE OR SOME PRIVACY CONCERNS
THEY HAVE.
AND DEPENDS ON WHO IS ASKING.
A LOT OF THIS IS ABOUT THE
TRUSTWORTHINESS OF THE
INDIVIDUALS WHO ARE ASKING FOR
THE DATA TO BE COLLECTED, STORED
AND SHARED.
I WANT TO MAKE THE ARGUMENT IN
MANY CASES OR IN SOME CASES YOU
THINK IT'S UNETHICAL OR AT LEAST
DISRESPECTFUL TO NOT SHARE DATA.
THAT'S WHAT INDIVIDUAL RESEARCH
PARTICIPANTS WANT.
THEY WANT THEIR DATA TO BE USED
TO ADVANCE THE SCIENCE AS
QUICKLY AS POSSIBLE.
I THINK IT'S MORE PROBLEMATIC TO
EXPOSE DATA AND NOT MAKE FULL
USE OF THE SHARED DATA.
I THINK WE'VE SEEN THAT TOO
OFTEN IN MANY FIELD.
A LOT OF MY DATA SHARING WORK
HAS BEEN DONE IN THE AREA OF
GENETICS AND GENOMICS AND OTHER
TYPES OF DATA AS WELL.
WE'VE SEEN DATABASES THAT GET
GENERATE AND BUILT AND THE DATA
DON'T GET USED FOR A VARIETY OF
REASONS.
THAT CAN BE PROBLEMATIC FROM AN
ETHICAL PERSPECTIVE.
IF WE START WITH THE PREMISE WE
OUGHT TO BE SHARING DATA
CONSISTENT WITH THOSE WHOSE DATA
WE'RE SHARING THE NEXT REAL
QUESTION IS HOW DO WE ETHICALLY
SHARE THE DATA?
I CAN'T STRESS ENOUGH IT'S
REALLY IMPORTANT TO PUT THE
RIGHT RULES IN PLACE THAT
ADDRESS SPECIFIC CONCERNS BEING
RAISED IN THE WORKSHOP.
WE NEED TO TALK ABOUT THE DATA
IN REPOSITORIES BEING ACCESSED
BY OTHER RESEARCHERS AND BEING
USED FOR RESEARCH PURPOSES.
I THINK WE DO THAT FAIRLY WELL
AND THERE'S TRUST BUT WITH THAT
TRUST COMES THE OBLIGATION TO BE
TRUSTWORTHY.
IN ORDER TO BE TRUSTWORTHY I
THINK WE NEED STRONGER RULES AND
GUIDELINES AROUND THE DATA USE
AND CONFIDENTIALITY.
WE NEED STRONGER DATA USE
AGREEMENTS THAT SPECIFY WHAT IS
ALLOWED AND NOT WITH REGARD TO
REI
RE-IDENTIFICATION AND MAKING
INFERENCES AND STRONGER
ACCOUNTABILITY.
WHAT HAPPENS IF SOMEONE VIOLATES
THE RULES WHETHER ETHICS RULES
OR POLICIES IN PLACE.
WE HAVE THIS MORE STRONGLY IN
CLINICAL MEDICINE BUT I DON'T
THINK IT'S QUITE AS STRONG IN
RESEARCH ETHICS.
AND THIRD PARTIES IS A MAJOR
RISK AND THAT'S ABOUT DATA
SECURITY AND HOW DO WE PREVENT
THIRD PARTIES FROM COMING IN AND
STEALING DATA AND HOLDING IT FOR
RANSOM OR DOING BAD THINGS WITH
THAT.
WE DON'T HAVE STRONG ENOUGH
PENALTIES FOR UNAUTHORIZED
ACCESS AND USE.
WE STARTED TO DEVELOP PENALTIES
FOR UNAUTHORIZED ACCESS FOR
CERTAIN HEALTH DATA HELD BY
CERTAIN ENTITIES.
IT'S NOT COMPREHENSIVE ENOUGH
BUT HAVE DONE LITTLE WITH REGARD
TO STRONG PENALTIES AT A
SOCIETAL LEVEL FOR UNAUTHORIZED
USE OF DATA INCLUDING BRAIN DATA
AND CAN DO MORE THERE.
AND I THINK IT'S DIFFICULT AND
REQUIRES MORE DISCUSSION, ONE IS
ACCESS TO RESEARCH DATA BY OTHER
GOVERNMENTAL AGENCIES LIKE
NATIONAL SECURITY, LAW
ENFORCEMENT.
WE CAN HAVE A WHOLE DISCUSSION.
THAT GETS COMPLICATED AND S
CERTIFICATES OF CONFIDENTIALITY
HELP BUT WHEN PUSH COMES TO
SHOVE IT MAY NOT HELP THAT MUCH
AND DATA GENERATED OUTSIDE THE
RESEARCH ENTERPRISE AND DIRECT
TO CONSUMER DATA THAT MAY HAVE
DIFFERENT RULES WE NEED TO THINK
MORE CAREFULLY ABOUT THAT AS
WELL.
I WANT TO HIGHLIGHT STUDIES
RELATED TO DATA SHARING AND KEY
FINDINGS THAT HAVE COME OUT OF
THOSE STUDIES.
ONE OF THE FIRST STUDIES STARTED
IN 2007 WHEN WE STARTED TO
BROADLY SHARE GENOMIC DATA AND
HIP WAS STARTING TO DEVELOP ITS
SYSTEM OF DB GAP AND DID A
RANDOMIZED CONTROL TRIAL OF
DIFFERENT CONSENT OPTIONS FOR
DATA SHARING.
WE ENROLLED INDIVIDUALS WHO WERE
PARTICIPATING IN GENOMIC STUDIES
WHERE THEIR DATA WAS GOING TO BE
SHARED.
THEY WERE WILLING TO SHARE OTHER
RESEARCH DATA BUT FELT CONSENT
SHOULD BE REQUIRED.
AT THE TIME IT WAS DEBATED AND
FELT IT SHOULD BE REQUIRED BUT
INTERESTINGLY PEOPLE FELT IT WAS
NECESSARY AS AN INDICATION OR
ACT OF RESPECT AND NOT SO MUCH
BECAUSE THEY WERE CONCERNED
ABOUT MAKING AN AUTONOMOUS
CHOICE.
THEY WERE ALL CHOOSING TO SHARE
THEIR DATA BECAUSE THEY WERE
HIGHLY MOTIVATED.
THEY WERE PATIENT WERE SICK AND
WANTED THE RESEARCH TO MOVE AS
QUICKLY AS POSSIBLE.
WHEN THEY WERE GIVEN THE
TRADE-OFF BETWEEN SHARING THEIR
DATA TO ADVANCE VERSUS
PROTECTING THEIR PRIVACY BY
SHARING DATA RESTRICTIVELY THEY
TENDED TO CHOOSE TO SHARE DATA
AS BROADLY AS POSSIBLE BECAUSE
THEIR DESIRE ON RESEARCH
OUTWEIGHED THE PRIVACY.
IF YOU ASK HOW BROADLY THE DATA
OUGHT TO BE SHARED THERE WAS A
GENERAL PREFERENCE FOR
RESTRICTIVE ACCESS.
PEOPLE WERE WILLING TO SHARE
THEIR DATA MORE OPENLY AND OPEN
ACCESS DATABASES IF IT WAS THE
ONLY CHOOSE GIVEN.
WE LOOKED AT DATA SHARING
CHALLENGES AND THE FIRST WAS
WHERE WE DID A MODIFIED PROCESS
ENGAGING MULTIDISCIPLINARY
STAKEHOLDERS INCLUDING PATIENT
REPRESENTS AND LOOKING AT THE
BIGGEST CHALLENGES TO THE
SEQUENCING TECHNOLOGIES.
NOT SPECIFICALLY ABOUT DATA
SHARING.
DATA SHARING WAS RANKED AS THE
MOST IMPORTANT POLICY CHALLENGE
THAT THE DELPHI PANEL NEEDED TO
BE ADDRESSED AND REIMBURSEMENT
AND OTHER ISSUES.
THEY RANKED DATA SHARING AS THE
LEAST FEASIBLE TO ADDRESS AND
HARDEST POLICY TO GET OUR HANDS
AROUND.
WE FOLLOWED UP WITH A STUDY
CALLED BUILDING THE MEDICAL
INFORMATION COMMONS AND HERE WE
LOOKED AT WHAT WOULD IT TAKE TO
SHARE IN A RESPONSIBLE AND
ETHICAL WAY.
THE TWO IMPORTANT FINDINGS WERE
DATA SHARING SHOULD BE DONE IN A
WAY THAT'S PARTICIPANTS CENTRIC
INCLUDING ENGAGING PATIENT
ADVOCATES IN THE PROCESS MAYBE
IN WAYS CHRISTINE SPOKE ABOUT
WITH REGARD TO GIVING THEM
AGENCY OVER INDIVIDUAL
DECISIONS, INTERESTING TRUSTED
INTERMEDIARIES AND
TRUSTWORTHINESS BECAME A KEY
POINT.
THIS NECESSITATED SERIOUS
ATTENTION TO BE PAID TO ISSUES
OF PRIVACY AS WELL AS SECURITY
TRANSPARENCY AND ACCOUNTABILITY
WHICH WERE THINGS I TALKED IN MY
FIRST SLIDE.
FINALLY, WE'RE FINISHING A
PROJECT WHERE WE'RE LOOKING AT
DATA SHARING WITH REGARD TO GENE
VARIANT DATA AND ANOTHER POLICY
AND LOOKING AT CHALLENGES
RELATED TO SHARING THESE TYPES
OF CHALLENGES AND CREATING THE
RIGHT INCENTIVES AND VALUES TO
ENCOURAGE RESEARCHERS TO SHARE
THEIR DATA, PROVIDING THE
APPROPRIATE LEVELS OF PRIVACY
AND SECURITY MAKING SURE WARE
BEING EQUITABLE AND THE DATA ARE
SUFFICIENTLY GOOD QUALITY
THEY'RE USEFUL TO THE RESEARCH
COMMUNITY.
TURNING TO BRAIN DATA
SPECIFICALLY, WE RECENTLY
FINISHED A GRANT THAT WAS
LOOKING SPECIFICALLY AT ETHICS
ISSUES RELATED TO DEEP BRAIN
STIMULATION OR ADAPTIVE DEEP
BRAIN STIMULATION AND LOOKING AT
A VARIETY OF ISSUES.
THIS IS ONE OF THE NEUROETHICS
GRANTS.
WE ASKED ABOUT DATA SHARING AND
SPOECH TO RESEARCHERS THROUGH
THE BRAIN INITIATIVE AND
INTERVIEWED 23 RESEARCHERS AND
WHEN WE ASKED ABOUT DATA SHARING
WE FOUND GREAT SUPPORT FOR DATA
SHARING AND COMMITMENT TO
SHARING DATA FROM THE DBS TRIALS
YET THERE WAS A LOT OF
HETEROGENEITY IN THE SHARING
PRACTICES.
NOT EVERYBODY WAS SHARING IN THE
SAME PLACES OR THE SAME WAY OR
THE SAME TYPES OF DATA AND THERE
WERE SEVERAL CONCERNS OR
BARRIERS WITH SHARING HUMAN
NEUROLOGICAL DATA AND ISSUES
WITH CONFIDENTIALITY AND
USABILITY, IS IT WORTH SHARING
THE DATA IS IT REALLY USABLE BY
OTHERS AND ISSUES OF OWNERSHIP
AND CONTROL AND RESOURCES AND
HOW MUCH TIME AND HUMAN RIVERSES
AND SHARING IT IN A WAY THAT
MAKES IT USABLE AND BENEFICIAL
AND WE SPOKE TO RESEARCH
PARTICIPANTS AND INTERVIEWED
PARTICIPANTS THAT HAD MENTAL
HEALTH AND MOVEMENT DISORDERS
AND A VARIETY OF THOSE AND WE
ASKED THEM IN OUR INVIEWS ABOUT
DETE SHARING AND THE WAY WE
FRAME THE QUESTION TENDED TO BE
SOMETHING SIMILAR TO THIS.
IT SAYS ADAPTIVE DEEP BRAIN ERS
MAY SHARE RESEARCH WITH OTHER
SCIENTISTS AND BEFORE SHARING
REMOVING NAME AND ADDRESS AND
HOW DO YOU FEEL ABOUT THAT?
WE SAW SUPPORT FOR RESEARCH
PARTICIPANTS.
ONE PERSON SAID THAN THAT'S
FINE.
YOU WOND WORRY IF YOU WERE
WORRIED ABOUT SHARING YOUR DATA
AND SOMEONE ELSE SAID I'M FOR
THAT BECAUSE I'M BIG INTO
HELPING OTHER AND IF IT BENEFITS
OTHERS AND ME, YES, I'M FINE
WITH THAT.
OTHERS SAID I DON'T BELIEVE
THOSE IN THE INSTITUTIONS
INVOLVED WOULD DO ANYTHING
NEFARIOUS WITH THE DATA.
NOTHING ELSE CONCERNS ME ABOUT
THEM STORING THE DATA OR
ANYTHING LIKE THAT.
SOMEBODY SAYS AS LONG AS IT'S
WITHIN THE SCIENTIFIC COMMUNITY
AND SECURITY, WHY NOT SHARE
INFORMATION AS LONG AS IT'S
CONFIDENTIAL I DON'T WANT MY
NAME SPREAD AROUND OR PERSONAL
INFORMATION.
THEY'RE SEEING THIS AS
CONFIDENTIAL OR EASILY
IDENTIFIABLE AND SEEING IT AS
SECURE BECAUSE IT'S WITHIN A
TRUSTED AND TRUSTWORTHY GROUP OF
RESEARCHERS.
I WANT TO TALK ABOUT THE BRAIN
SHARE STUDY AND IDENTIFY
CHALLENGES AND CONCERNS SPECIFIC
TO SHARING BRAIN DATA.
WE HAVE THREE AIMS.
THE FIRST IS TO EXAMPLE THE
POLICY AND PRACTICE AND IDENTIFY
CHALLENGES SHARING DATA WITHIN
BRAIN AND SECOND TO ASSESS
PARTICIPANTS ATTITUDES AND
PREFERENCES AND CONCERNS ABOUT
SHARING BRAIN DATA AND THIRD IS
DOING A MOTFIDE TO GENERATE
PRACTICE OPTION TO ADDRESS THE
HIGH PRIORITY CHALLENGES.
LET ME START WITH WHAT WE'VE
DONE WITH OUR DIVERSE
STAKEHOLDER GROUP.
THIS INVOLVED OUR AIM ONE
INTERVIEWS AND MODIFIED POLICY
DELPHI.
THE GROUPS OF INDIVIDUALS
ENGAGING.
WE'VE DONE 54 INDIVIDUAL
INTERVIEWS AND 31 INDIVIDUALS
PART OF OUR DELPHI PANEL AND
THEY CONSISTENT OF
INVESTIGATORS, PATIENT
ADVOCATES, DATA STEWARDS AND LAW
AND POLICY SCHOLARS.
WE'VE IDENTIFIED CHALLENGES TO
SHARING HUMAN BRAIN DATA AND WE
FINED THEM AND RANK THEM
ACCORDING TO HOW IMPORTANT THEY
ARE TO ADDRESS FROM A POLICY
PERSPECTIVE AND IT IS COSTLY TO
SHARE DATA.
THERE'S A LACK OF DATA STANDARDS
WITH REGARD TO MAKING SURE ALL
THE DATA BEING SHARED IS USABLE
AND SHARED IN THE SAME WAY AND
FORMAT TO BE USED EASILY.
THERE ARE LIMITED INCENTIVES FOR
SHARING DATA.
WE HEARD IT FEELS LIKE IT'S A
RULE SO YOU HAVE TO DO OUT BUT
WHAT'S THE INCENTIVE AND WHAT AM
I GETTING OUT OF IT WHY WOULD I
WANT TO DO THIS?
AND LIMITS WITH REGARD TO WHAT
PEOPLE CONSENT TO IN TERMS OF
YOUR ABILITY TO SHARE THE DATA.
WE ALSO ASKED OPINION QUESTIONS
OR PERSPECTIVE QUESTIONS ABOUT
DATA SHARING.
PUTTING A COUPLE UP HERE
RELEVANT AND IMPORTANT.
A THIRD YOU CAN SEE IN THE BLUE
A THIRD OF THE DELPHI PANELISTS
FELT IT WAS UNCLEAR IF THE
BENEFITS OF SHARING HUMAN BRAIN
DATA OUTWEIGH THE COSTS.
IT'S COSTLY AND NOT SURE IF THE
BENEFITS OUTWEIGH IT.
HALF THE PANELISTS FELT THEY
DISAGREED WITH THE STATEMENT
MEANING THE BENEFITS OUTWEIGHED
THE COST AND IF NIH SHOULD
PRIORITIZE FUNDING FOR CERTAIN
TYPES OF DATA IN THE HUMAN NEURO
SCIENCES OVER OTHER TYPES.
DECIDE WHICH DATA ARE MOST
IMPORTANT TO SHARE AND
PRIORITIZE THOSE IF WE'RE GOING
TO MAKE AN INVESTMENT.
OVER HALF SAID THERE SHOULD BE
PRIORITIZATION AND THE TYPES OF
DATA THEY THOUGHT SHOULD BE
PRIORITIZED HAD THE MOST REUSE
POTENTIAL AND THE DATA MOST
COMMONLY COLLECTED OR EASIEST TO
COMBINE AND STANDARDS CURRENTLY
AVAILABLE FOR THE DATA TYPES AND
OTHERS FELT, NO, WE SHOULD BE
SHARING AND PRIORITIZING THE
MOST DIFFICULT DATA TO
COLLECTION WHERE YOU HAVE TO DO
INFACIVE BRAIN SURGERY AND WE
SHOULD BE SHARING BECAUSE IT'S
SO HARD TO GENERATE THOSE DATA
MOST USEFUL AND OTHERS SAID WE
SHOULD FOCUS ON DATA CONFIDENTLY
DE-IDENTIFIED AND IF NIH SHOULD
PRIORITIZE DATA SHARING
INCLUDING REPLICATION AND REUSE
FOR BRAIN INITIATIVE EVEN IF IT
MEANS LESS FUNDING WILL BE
AVAILABLE FOR RESEARCH THAT
GENERATES NEW DATA AND YOU CAN
SEE HERE THE MAJORITY OF
INDIVIDUALS, 74% FELT WE SHOULD
PRIORITIZE FROM A FUNDING
PERSPECTIVE, DATA AND REUSE EVEN
IF IT MEANS LESS MONEY FOR
GENERATING NEW DATA.
YOU WANT TO TALK TO THE
INTERVIEWS WITH RESEARCH
PARTICIPANTS IN BRAIN INITIATIVE
STUDIES.
WE STARTED BY INTERVIEWING
INDIVIDUALS IN UHE STUDIES AND
HAVE INTERVIEWED EIGHT
INTERVIEWS, THEY'RE PRELIMINARY
AND WE'RE USING IT TO DEVELOP A
SURVEY WE WILL ADMINISTER WITH A
MUCH LARGER NUMBER OF
PARTICIPANTS.
THESE INDIVIDUALS HAVE A VARIETY
OF CONDITIONS ACROSS THE BRAIN
INITIATIVE, BLINDNESS, LOSS OF
LOWER LIMB FUNCTION, OCD AND
DEPRESSION, PARKINSON'S DISEASE
AND TREATMENT-RESISTANT
DEPRESSION.
THE PARTICIPANTS HAVE
INTRACTABLE DISEASES AND THEY'RE
CONTENTING ALREADY TO INVASIVE
TREATMENTS AND HIGHLIGHT
MOTIVATED TO ADVANCE RESEARCH.
THEY FEEL STRONGLY ABOUT MAKING
THEIR DATA AS USEFUL AS POSSIBLE
AND PEOPLE NOT IN THE
CIRCUMSTANCES MAY FEEL
DIFFERENTLY ABOUT HAVING THEIR
DATA SHARED.
PEOPLE SAID THINGS LIKE IF IT'S
GOING TO A GOOD CAUSE AND PEOPLE
ARE GETTING HEALTHIER AND BETTER
I'M ALL FOR IT EVEN IF IT WASN'T
ANONYMOUS BECAUSE IF THE EFFORT
OF FURTHERING SCIENTIFIC STUDY
OF THE BRAIN IT'S IMPORTANT TO
SHARE DATA.
FINALLY A PERSON SAID I EXPECT
DATA SHARING TO OCCUR.
THE RESEARCH ACTIVITIES GO ON
ALL OVER AND IT SEEMS LIKE A
WASTE OF EFFORT IF THEY
DUPLICATED OR WORKING IN THE
DARK.
THEY SAW THAT AS ESSENTIAL TO
THIS TYPE OF RESEARCH.
THOUGH THERE WAS GENERAL SUPPORT
SOME HAD CONCERNS AND I CALL
THEM COMMON CONCERNS BECAUSE
THEY'RE CONCERNS I THINK HAVE
BEEN BROUGHT UP IN MANY AREAS OF
RESEARCH RELATED TO DATA
SHARING.
SOMEBODY SAID IF THIS PERSON
WENT THROUGH ALL THIS SUFFERING
AND THAT INFORMATION GOES TO
SOMEBODY AND THEY MAKE A HUGE
PROFIT IT'S UNETHICAL FOR THAT
TO HAPPEN.
CHRISTINE BROUGHT THIS UP.
SOME PATIENTS ARE STRUGGLING AND
WANT BENEFIT IN SHARING OR WANT
SOMEBODY ELSE NOT TO BE MAKING A
LOT OF MONEY TO BE USED FOR THE
COMMON GOOD.
THERE WERE CONCERNS ABOUT
POTENTIAL DISCRIMINATION AND
USED INAPPROPRIATELY TO DENY
INSURANCE AND CONCERNS ABOUT
AUTONOMOUS CHOICE.
ONE PERSON SAID YOU SHOULDN'T BE
FORCED TO SHARE YOUR DATA TO
HAVE THE SURGERY.
IF YOU WANT THE SURGERY, YOU
SHOULD HAVE AN ADDITIONAL OPTION
WHETHER YOU WANT TO SHARE IT OR
NOT.
WE ASKED WHETHER THERE SHOULD BE
LIMITATIONS ON USE AND TIES INTO
YESTERDAY WITH REGARD TO
INFERENCES MADE AND SHOULD
RESEARCHERS BE PROHIBITED FROM
USING DATA TO BETTER UNDERSTAND
A PERSON'S THOUGHTS AND
INTENTIONS WHETHER THEY'RE
TELLING THE TRUTH AND MOST WERE
OKAY WITH THE DATA BE USED IN
ANY OF THESE WAYS.
SOMEBODY SAID I KNOW MY DATA WAS
USED FOR MY THOUGHTS AND
INTENTIONS.
THIS WAS SOMEBODY WHO I THINK
HAD DEPRESSION AND SAYING
THEY'RE ALREADY LOOKING AT THIS
AND TRYING TO FIGURE OUT IF I'M
IN A DEPRESSIVE STATE AND I HAVE
TRUST IN THE INSTITUTIONS
INVOLVED.
SOMEBODY ELSE SAID PSYCHOLOGISTS
ARE ALREADY TRYING TO UNDERSTAND
THE HUMAN MIND AND THOUGHTS AND
WHY A PERSON FEELS THE WAY A
PERSON FEELS.
THEY'VE BEEN DOING THAT SINCE
THE BEGINNING OF PSYCHIATRY, AS
LONG AS THEY DON'T ABUSE THEIR
POWER AND SOMEBODY SAID I THINK
THERE'S CONCERN IT'D BE USED FOR
WHAT IT WAS INTENDED FOR SO AS
LONG AS YOU AGREE AND SIGNED OFF
THEY'RE FINE BUT WANT TO MAKE
SURE IT'S NOT USED BEYOND THE
INITIAL INTENT OF THE CONSENT.
WE ASKED THEM WHETHER THEY FELT
BRAIN DATA WAS DIFFERENT FROM
OTHER TYPES OF INFORMATION AND
HOW THEY FELT IN SHARING IT
COMPARED TO OTHER TYPES OF
INFORMATION.
I WAS EXPECTING PARTICIPANTS TO
SAY YEAH, YOUR BRAIN DATA IS SO
MUCH MORE SENSITIVE, IT TELLS
YOU WHO YOU ARE, IT'S THE
ESSENCE OF YOU AND WE HEARD THE
OPPOSITE.
WE ASKED THEM ABOUT HOW DO YOU
FEEL ABOUT SHARING BRAIN DATA
VERSUS OTHER INFORMATION
SUBSTANCE USE HISTORY, LIST OF
MEDICATIONS, SEXUAL HISTORY, AND
FOR SOME REASONS THE OTHER
PIECES OF THE PUZZLE SEEM MORE
PERSONAL AND BROUGHT IN MORE
EMOTION.
WHEN YOU ARE TALKING ABOUT
SUBSTANCE USE AND SEXUAL HISTORY
OR OTHER HISTORY THAT FELT MORE
SENSITIVE AND PERSONAL THAN
BRAIN DATA.
WHEN WE ASKED ABOUT INTERNET
SEARCH HISTORY AND POLITICAL
AFFILIATION, SEXUAL ORIENTATION,
THEY SAID IF SOMEONE'S GOING TO
LOOK AT ALL MY INFORMATION AND
WEBSITE DATA AND EVERYTHING I'D
SAY THAT'S NONE OF YOUR DAMN
BUSINESS BUT WERE FINE WITH THEM
LOOKING AT THEIR BRAIN DATA.
I THINK THAT'S QUITE INTERESTING
AND IMPORTANT TO KEEP IN MIND.
WE'RE CONTINUING TO DO
INTERVIEWS WITH RESEARCH
PARTICIPANTS AND WILL BE USING
THAT TO INFORM A SURVEY WITH
SCALING EXERPT IN IT THAT WILL
TRY TO ASSESS THE PRACTICES MOST
IMPORTANT TO PARTICIPANTS WHEN
THEY THINK HOW THEIR BRAIN DATA
IS USED.
IF YOU'RE CONDUCTING A STUDY
BECAUSE YOU'RE COLLECTING AND
SHARING BRAIN DATA WE'D LIKE TO
HEAR FROM YOU BECAUSE WE'D LIKE
AS MANY RESPONDENTS AS POSSIBLE.
I'LL END WITH FINAL THOUGHTS.
IT THE WHOLE DISCUSSION IS MUCH
MORE ABOUT TRUST AND
TRUSTWORTHINESS AND RESPECT FOR
RESEARCH PARTICIPANTS AND ABOUT
AUTONOMY AND I CAUTION AGAINST
PUTTING TOO MUCH WEIGHT ON
CONSENT AND CAN'T BEAR THE
WEIGHT OF RESPECTING
PARTICIPANTS AND RESPECTING
THEIR PRIVACY AND BASED ON OUR
CONVERSATION EARLIER JUST
BECAUSE WE CAN RE-IDENTIFY FOR
MAKE INFERENCES DOESN'T MEAN WE
SHOULD BE DOING THAT AND WE
SHOULD PUT RULES IN PLACE TO
PREVENT THE BEHAVIORS AND
FOCUSES MORE ON PUNISHING BAD
ACTORS THAN RESTRICTING DATA
ACCESS AND LIMITING OUR ABILITY
TO DATA SHARE AND I'LL
ACKNOWLEDGE OUR FUNDERS AND
COLLABORATORS AND OPEN IT FOR
QUESTIONS.
>>ONE QUESTION FOR AMY AND THEN
OPEN IT UP TO THE PANEL.
>>IN LIGHT OF THE EMPIRICAL
INSIGHTS AROUND CONSENT, HOW
MIGHT WE THINK OF CONCEPT FOR
DATA SHARING AS SUCCINCT THE FOR
DATA SHARING AND SHOULD THEY BE
INTERTWINED OR SHOULD WE BE SOME
PURPOSES ARE TO CREATE A
COMMUNITY RESOURCE.
THE PURPOSE OF THE STUDY IS TO
CREATE THE PANGINE PROJECT THE
PURPOSE IS TO CREATE A COMMUNITY
RESOURCE THAT REQUIRES DATA
SHARING.
IF THAT'S THE PRIMARY PURPOSE OF
THE STUDY THEN DATA SHARING
SHOULD BE A CONDITION OF
PARTICIPATION.
IF DATA SHARING IS AN ADDED
BENEFIT THERE SHOULD BE SEPARATE
CONSENT PROCESSES POTENTIALLY IF
THERE'S CLINICAL BENEFIT FOR THE
PATIENT FOR THE RESEARCH.
IF AS THE A RESEARCH STUDY THAT
INVOLVES POTENTIAL THERAPEUTIC
INTERVENTION THEN I THINK WE
NEED TO BE CAREFUL ABOUT TYING
DATA SHARING TO THAT.
>>WE HAVE A NUMBER OF
QUESTIONS.
WELL PRIORITIZE OUR MEMBERS.
JIM AND SYD.
>>THANK YOU TO THE EXCELLENT
SPEAKERS.
I AGREE WITH THE LAST COMMENT
ABOUT CONSENT NOT CARRYING ALL
THE WAY BUT IT'S STILL PART OF
THE PROTECTIONS WE MIGHT APPLY
WHEN WE THINK OF DATA SHARING.
I'M WONDERING IN TERMS OF THERE
ARE SOME DATA TO SUGGEST HOW
MUCH WE SAY WHAT WE SAY ON WHAT
COULD BE DONE WITH DATA AS PART
OF CONSENT MAY INFLUENCE WHETHER
PEOPLE ARE MORE OR LESS INCLINED
TO SHARE DATA.
DO WE GIVE EXAMPLES IN THE TYPES
OF WAYS IT COULD BE MISUSED OR
NOT?
HOW SPECIFIC ARE WE ABOUT THE
ACTORS THAT CAN ACCESS DATA IF
IT'S OPENLY SHARED?
TO WHICH EXTENT ARE THEY
INFORMED ABOUT THE INSTANTS THAT
CAN BE INFORMED AND HOW COULD WE
DO A BETTER JOB OF INFORMED
CONSENT?
>>I'M CURIOUS IF NATHAN OR
CHRISTINE HAD THOUGHTS ON AS
SOMEBODY WHO PARTICIPATED IN
THESE HOW WELL YOU'RE INFORMED?
>>I DON'T RECALL ANYTHING
DIRECTLY ABOUT THAT BEING IN
THERE.
>>THE PARTICIPANTS TENDED TO
REMEMBER A DISCUSSION ABOUT DATA
SHARING.
THEY KIND OF REMEMBERED TALKING
ABOUT IT.
IT'S HARD WITHOUT OVER
EXAGGERATING THE POTENTIAL
CONCERNS AND EVERYBODY'S
DIFFERENT.
SOME HAVE WILD THOUGHTS ABOUT
WHAT CAN BE DONE WITH DATA AND
IT'S GOING TO BE USED FOR THIS,
THAT AND THE OTHER AND ARE GOING
THROUGH THE EXTREME OF BAD
THINGS CAN HAPPEN AND SOME LOOK
LIKE WAVES TO ME.
THEY CAN'T DO ANYTHING WITH
THAT.
THERE'S A BALANCE THAT NEEDS TO
BE STRUCK BETWEEN HOW YOU
EDUCATE PEOPLE AND THE RISKS
TODAY WILL BE DIFFERENT FROM
RISKS IN 10 YEARS.
WE HAVE LITTLE INSIGHT AND WHAT
PEOPLE CONSENT TO IS
UNCERTAINTY.
I ALWAYS THOUGHT OF THE CONSENT
PROCESS AS SAYING WE DON'T KNOW
WHAT CAN HAPPEN AND TRY TO
PROTECT IT AS MUCH AS POSSIBLE
BUT CONSENTING TO A DEGREE OF
UNCERTAINTY WITH REGARD TO YOUR
DATA SECURITY AND ARE YOU OKAY
WITH THAT AND I THINK PEOPLE CAN
CONSENT TO THAT IF THEY KNOW
WHAT'S THEY'RE CONSENTING TO.
>>IT DEPENDS ON THE STUDY AND I
MAY HAVE GOTTEN MORE INSTRUCTION
THAN FOR SOMETHING THAT'S A
GENETIC STUDY AND DEPENDS ON THE
P.I. IN CHARGE OF THE STUDY AND
FOR THE MOST PART I DO NOT GET
AS MUCH AS INFORMATION AS I
THINK I SHOULD WITH THE CERTAIN
RIS
RISKS AS WE PUT IMPLANTABLE
DEVICES I WOULD THINK BLUETOOTH
WAS A NEW TECHNOLOGY AND I
REALIZED I PROBABLY WASN'T AS
EXCITED ABOUT IT.
WE NEED EDUCATION AROUND
RESEARCH AND STUDIES.
I DON'T THINK PEOPLE LOOK AT
RESEARCH THEY'RE DOING AND WE
DON'T BELIEVE IT'S COLLECTIVE
DATA TO GET US ANYWHERE AND IN
ORDER TO GET TO PRECISION
MEDICINE WE NEED LARGE AMOUNTS
OF DATA.
THAT EDUCATION PROCESS IN
COMMUNITIES AND GROUPS AND
BEFORE PEOPLE GET SICK I THINK
WE LOSE A LOT OF PEOPLE TO
COMORBIDITIES WHEN THEY ALREADY
TRIED OTHER TREATMENTS WHEN THEY
COULD HAVE HAD AN OPTION TO GO
STRAIGHT TO A TRIAL FIT -- IF
IT WAS OFFERED AS A CARE OPTION
SO THERE'S SOME THINGS THERE.
>>I HAVE TWO QUESTIONS AND I
WANT TO THANK YOU ALL FOR YOUR
PARTICIPATION IN THIS PARTICULAR
SESSION.
ANY FIRST QUESTION GOES TO AMY.
YOU'VE TALKED ABOUT PENALTIES
FOR INAPPROPRIATE USE OF DATA.
WHAT DO YOU HAVE IN MIND?
WE MAY BE ABLE TO DEVELOP
RESEARCH ABOUT IT BUT WHEN DATA
IS USED BY PEOPLE OUTSIDE
ACADEMIC RESEARCHERS, WHAT
PENALTIES CAN YOU ENVISION THAT
MAY BE EFFECTIVE?
>>IT'S A GOOD QUESTION.
SO I THINK THE HARDEST PROBLEM
ARE LIKE THE TRUE HACKERS GOING
IN AND STEALING MEDICAL SYSTEM
DATA AND HOLDING IT FOR RANSOM
AND THOSE PEOPLE YOU DON'T KNOW
WHO THEY ARE OR FIND THEM AND
THAT'S PROBABLY THE BIGGEST
CHALLENGE.
THERE ARE COUNTRIES THAT HAVE
EVEN CRIMINAL LAW PENALTIES FOR
UNAUTHORIZED DATA USE.
SOME STATES HAVE LOOKED WITH
REGARD TO GENETIC DATA DATA
OWNERSHIP LAWS THAT HAVE MORE
STRINGENT PENALTIES.
I HAVEN'T THOUGHT ENOUGH IT AND
WHAT IS THE RIGHT APPROACH AND
PENALTIES.
I THINK IT'S A DIFFERENCE
BETWEEN YOU NEED TO THINK
DIFFERENTLY ABOUT RESEARCHERS
WHO HAVE GOOD INTENTIONS BUT
JUST DON'T FOLLOW THE RULES
VERSUS REALLY BAD ACTORS TRYING
TO USE DATA IN WAYS HARMING
INDIVIDUALS.
IT SHOULDN'T BE AND IF IT OCCURS
THERE SHOULD BE STRONG
PENALTIES.
YOU KNOW, IT'S A GOOD QUESTION I
DON'T FEEL FUELRY QUALIFIED TO
ANSWER IT BUT RIGHT NOW IT
DOESN'T SEEM LIKE THERE'S A LOT
OF TEETH BEHIND MANY OF OUR
POLICIES.
THERE ISN'T SOME OF THEM
PARTICULARLY AROUND HIPPA HAS
STRONG CIVIL PENALTIES
ASSOCIATED BUT THERE DOESN'T
SEEM A LOT OF TEETH BEHIND SOME
OF OUR POLICIES.
>>THANK YOU.
>>A SECOND QUESTION IS I GUESS
THERE'S AN INDIVIDUAL CONSENT
BUT WE TALKED ABOUT COMMUNITY
AFFECTS.
>>WE NEED TO BRING THESE
COMMUNITIES INTO DISCUSSION OF
INFORMED CONSENT.
EACH DISCUSSION WILL BE
DIFFERENT IN HOW THEY LOOK AT
THE DATA AND PROTECT THEIR OWN
COMMUNITIES.
IN THAT RESPECT WE NEED TO
INVOLVE THE COMMUNITY AND
PROCESSES AND NEED TO GET THEM
MORE INVOLVED IN THE DATA
SHARING AND EDUCATION FOR THEIR
COMMUNITIES ASH THAT.
-- AROUND THAT.
CERTAIN NONPROFITS COULD BE USED
AS AGENTS FOR THOSE CERTAIN
CONDITIONS TO LOOK AT THE DATA
AND I THINK IF WE LOOK AT IT
THAT WAY WE HAVE TO NARROW
THINGS DOWN.
RIGHT NOW WE HAVE A LOT OF
PEOPLE WIN DIFFERENT MISSED
DIAGN
DIAGNOSES.
HOW DO WE CLEAR OUT THE DATA TO
MAKE SURE PEOPLE ARE IN THE
RIGHT COMMUNITIES?
I HAVE DIAGNOSES FOR 40
DIFFERENT CONDITIONS RIGHT NOW
WHICH I WOULD POTENTIALLY NOT
PARTICIPATE IN A DRUG TRIAL BUT
COULD PARTICIPATE IN QUALITY OF
LIFE STUDIES OR ANY OTHER TYPE
OF RESEARCH IN THOSE
COMMUNITIES.
THERE'S A LOT THERE THAT NEEDS
TO BE TAUGHT AND HOW THEY LOOK
AT DATA AS A COLLECTIVE INSTEAD
OF INDIVIDUAL DATA AND I THINK
THOSE LESSONS HAVE TO BE TAUGHT
WITHIN EACH OF THOSE
COMMUNITIES.
FINDING A COMMUNITY AS YOU FIND
STAKEHOLDERS IN THE WRITING OF
THE RESEARCH AND WHEN PEOPLE BUY
A HOUSE THEY HAVE DIFFERENT
SPACES CONSENTING TO THIS AND
DON'T WANT THIS SO WE NEED TO
THINK ABOUT THE CONSENT IN THAT
WAY OF INSTEAD OF -- YOU'RE
DYING RIGHT NOW, SIGN THIS,
HAVING SECTIONS WHERE YOU HAVE
OPTIONS AND YOU DON'T FEEL
FORCED INTO TAKING THIS
TREATMENT BECAUSE THAT'S THE
ONLY OPTION.
>>THANK YOU.
>>THERE WAS DISCUSSION ABOUT
POTENTIAL HARM POTENTIALLY BEING
OVER HYPED.
>>THERE'S BEEN CONFLICT OF
INTEREST AND PERCEIVED CONFLICT
OF INTEREST IS ALSO RELATED TO
TRUST.
EVEN IF DEIDENTIFICATION OR
RE-IDENTIFICATION IS DIFFICULT
AND THERE'S ISSUES ASSOCIATED,
HOW CONCERNED SHOULD WE BE WITH
THE ISSUE IN TRUST AND SCIENCE
IS FOREFRONT THESE DAYS HOW DO
WE DEAL WITH THAT?
>>CAN I SAY FIRST I THINK IT'S
THE BIGGEST LIE WE SAY WE CAN
DEIDENTIFIED AND NOT RE-IDENTIFY
AND WE GET TO SEQUENCING, YOU'LL
BE ABLE TO ABLE TO IDENTIFY
EVERY ONE OF US.
WE NEED A DISCUSSION AROUND DATA
AND DE-IDENTIFYING AND MAKE SURE
PEOPLE TRULY UNDERSTAND THE
RISKS MEAN WHEN WE SIT DOWN WITH
THEM.
>>WE HAVE TIME FOR ONE LAST
QUESTION AND SYD HE'S BEEN
WAITING PATIENTLY ONLINE.
PLEASE.
>>THANK YOU.
SO AS WE HEARD YESTERDAY FROM
JOSLIN AND CRYSTAL, DIFFERENT
COMMUNITIES HAVE DIFFERENT
ASSESSMENTS OR SENSITIVITIES TO
THE RISKS OF DATA SHARING.
WE ALSO SAW FROM JOSLIN
RICKARD'S PRESENTATION A LOT OF
PEOPLE ARE VERY MUCH UNDER
REPRESENTED IN THE DATA THAT
GETS SHARED.
95% WHITE IN THE U.K. BRAIN DATA
BANK AND 76% IN THE UNITED
STATES.
MOSTLY IT'S A QUESTION FOR AMY
WHICH IS THAT GIVEN THE UNDER
REPRESENTATION OF A LOT OF THESE
COMMUNITIES OF POPULATIONS
WITHIN OUR DATA SET AND WITHIN
THE RESEARCH THAT'S BEING DONE,
CAN YOU TELL US MAYBE ABOUT THE
DEMOGRAPHICS OF THE PEOPLE WHO
PARTICIPATED IN YOUR STUDIES?
WE HEARD DIFFERENT PERSPECTIVES
JUST TODAY BETWEEN CHRISTINE AND
NATHAN HOW THEY FEEL ABOUT THEIR
DATA BEING SHARED.
I'M CURIOUS ON HOW TO
INCORPORATE THE DIFFERENCE VIEW
POINTS AND SENSITIVITIES UP
SHARING BRAIN DATA.
>>I'LL SAY THROUGH THE BRAIN
INITIATIVE THEY'RE NOT VERY
DIVERSE OR REPRESENTATIVE.
MOSTLY WHAT YOU'D EXPECT FROM
EYE NON-DIVERSE SAMPLE.
WHEN WE DID THE INITIAL STUDY
WITH REGARD TO THE DATA SHARING
FOR GENETIC STUDIES, THAT WAS
MUCH MORE DIVERSE BECAUSE IT WAS
A DIVERSE CITY AND LIKE 350
PARTICIPANTS AND WE HAD A LARGE
HISTORIC POPULATION AND MUCH
MORE REPRESENTATIVE DIFFERS
I.
I HAVE TO PULL UP THE
DEMOGRAPHIC TABLES FOR OUR
INTERVIEWS BUT GENERALLY LACK OF
DIVERSITY WHICH REFLECT THE LACK
OF DIVERSITY AND THOSE GETTING
THE PROCEDURES DONE.
>>ONE POSSIBLE THING TO THINK
ABOUT HERE IS WE NEED TO EXPAND
OUR DISCUSSIONS AND SURVEYS
BEYOND POPULATIONS WHO IS BRAIN
DATA IS BEING ACQUIRED BECAUSE
OF THE LACK OF DIVERSITY AND
POTENTIALLY THE LACK OF DIVERSE
VIEW POINTS AMONG THAT
PARTICULAR POPULATION AT THIS
TIME.
>>WE HAVE FOUND PEOPLE'S
HYPOTHETICAL PREFERENCES AND
WHAT THEY WOULD THINK THEY WOULD
HYPOTHETICALLY CHOOSE IS
DIFFERENT THAN IN THE SITUATION.
WE NEED TO UNDERSTAND DIVERSE
PERSPECTIVES AND NEED TO ENROLL
MORE PARTICIPANTS BECAUSE WE
ENCOUNTER THAT PROBLEM WHEN WE
START TO DO MORE HYPOTHETICAL
SURVEY WORK.
>>PLEASE, EVERYBODY HELP ME
THIS MANY OUR PANELISTS FOR THE
PANEL.
WE'LL TAKE A BREAK AND HAVE
LUNCH AND COME BACK READY TO
WORK IN THE BREAKOUT SESSIONS.
WE'LL RECONVENE AT 2:15 AND
WE'LL BE GOING INTO BREAKOUT
ROOMS WITH SOME GUIDANCE AT THE
START TO PLEASE COME BACK ON
TIME.
THANK YOU.
>>THE LAST PART WE HAD FOR
TODAY WAS TO HEAR SOME OF THE
KEY THEMES FROM EACH OF THE ROOM
DISCUSSIONS.
SO YOU WANT TO GO FIRST?
>>UM, IT WAS A RICH DISCUSSION.
WE INVITED EVERYBODY ABOUT
TECHNOLOGICAL POSSIBILITIES THAT
COULD EXIST TODAY AND MIGHT ALSO
BE SOMETHING THAT WOULD DEVELOP
IN THE FUTURE.
RESEARCH POSSIBILITY AND TALKED
ABOUT THINGS LIKE KEEPING DATA
AND THINKING AROUND QUESTIONS
WHETHER THERE ARE PRESETS THAT
COULD BE PUT INABILITY IN AROUND
LOCATION WHEN DATA IS BEING
SHARED OR ISN'T OR HAVING A SET
OF DEFAULTS THAT WOULD BE
TIME-BASED RATHER THAN
CONTENT-BASED OR EMBEDDING A
SYSTEM AND INTERFACE SOMETHING
WHEN YOU DECIDE WITH WHOM AND
WEN AND END TO END ENCRYPTION
TAGGING DATA TO TRACK HOW IT'S
USED AND ALLOWING FOR DYNAMIC
DECISION MAKING OF SHARING
RATHER THAN MOMENT BY MOMENT
BASIS TO DO SO.
HAVING GREATER USER LEVEL ACCESS
AND CONTROL OVER AND USER LEVEL
ACCESS TO USE DATA ONE SELF OR
PATIENT GROUPS.
THE POSSIBILITY OF DIFFERENT
TYPES OF DATA AND TRUSTED
INTERMEDIARIES.
HAVING SOME CLOUD-BASED SYSTEM
AND USING THAT AS A WAY TO TRACE
EACH ACCESS TO THE DATA FOR
IDENTIFIABLE OF USE AND LEVEL
PERMISSIONS IF IT'S CLOUD-BASED
IT'S EASIER THAN IF IT'S
DOWNLOADABLE.
I THINK THAT COVERS EVERYTHING.
DID I MISS ANYTHING IN THE
GROUP?
ALL RIGHT.
LET THAT BE A MODEL TO YOU OF
EFFICIENT READ OUT.
>>OKAY WE WERE LOOKING
SPECIFICALLY AT DIVERSITY AND
INCLUSIVITY.
AND A RECURRING THEME WAS THE
LACK OF DIVERSITY WITHIN
SCIENTIFIC COMMUNITIES AND
WITHIN P.I.s WHICH CAME UP IN A
COUPLE CONTEXTS IN TERMS OF
ENGAGING WITH DIVERSE
COMMUNITIES AND GAIN THE TRUST
OF DIVERSE COMMUNITIES.
WE SPOKE A LOT ABOUT RECRUITING
WAYS WE MIGHT APPROACH
RECRUITING MORE DIVERSE
PARTICIPANTS FOR BRAIN RESEARCH
REASONABLE LESSONS WAS THE
INACCESSIBLE LANGUAGE OF
NEUROSCIENCE EXACERBATED BY
LANGUAGE BARRIERS OF TRANSLATING
THAT SCIENCE TO NON-ENGLISH
SPEAKERS AND THE NEED TO REACH
COMMUNITIES WHERE THEY ARE AND
ENGAGE IN BROADER OUTREACH WHICH
SHOULD INCLUDE NOT TALKING AT
DIVERSE COMMUNITIES BUT
EMPLOYING PEOPLE AND NOT JUST
EXPLOITING COMMUNITY MEMBERS TO
DO OUR WORK FOR US AND DIVERSE
IF I OUR OWN WORKFORCE AND
EMPLOY PEOPLE WITHIN THE
COMMUNITIES WE WOULD LIKE TO
ENGAGE WITH.
ONE P.I. DISCUSSED THE REAL
VALUE OF A CHAMPION OR ADVOCATE
POSITIONED TO DO THE COMMUNITY
OUTREACH WHICH INCREASED
RECRUITING MORE BROADLY.
IT HAS THE EFFECT OF CREATING A
PRESENCE RATHER THAN GOING IN
AND LEAVING AND A NEED FOR
INFRASTRUCTURE AND COMMUNITY FOR
COMMUNITY-BASED PARTICIPATORY
RESEARCH AND FUNDING FOR HOW TO
ENGAGE DIVERSE COMMUNITIES AND
BRING RESEARCH AND GET COMMUNITY
AND POPULATION PERSPECTIVES ON
DATA SHARING AND BUILD IN
COMMUNITY ADVISORY BOARDS AND
HAS TO ARE NOT BRAND NEW IDEAS
AND ONE POINT THAT CAME UP IS WE
MAY FIND BY INCREASE IING INCREY
IN OUR POPULATIONS MAY BE
INTENTIONED WITH DATA SHARING
REQUIREMENTS AND SOME
COMMUNITIES WILL BE MORE
CONCERNED AND MORE RESISTANT TO
DATA SHARING AND WE SHOULD
RESPECT THEIR VIEW POINTS ON
THAT.
WE TALKED WITH THE INFLUENCE OF
DATA SHARING AND COUNTERING THE
HYPE THROUGH MORE
INTERDISCIPLINARY RESEARCH AND
HOW TO EDUCATE ON THE RESEARCH
RATHER THAN THE SPECULATIVE HYPE
WE ALL HEAR ABOUT A LOT.
COMMUNICATING THE IMPORTANCE OF
DIVERSITY IN RESEARCH AND FOR
THEM AND NOT JUST FOR SCIENCE
AND NOT THE PARTICULAR PROJECT
THEY'RE BEING APPROVED ABOUT.
WE HAD ONE FINAL SUGGESTION ON
EXPANDING DYNAMIC CONSENT FOR
ONGOING DIALOGUE AND ENGAGEMENT
WITH RESEARCH PARTICIPANTS AND
NOT JUST AN OPPORTUNITY TO GET
CONSENT ONCE MORE.
>>WE'RE GOING TO DISCUSS THE
SECTION AND THE ITERATION OF
WHAT WE DISCUSSED.
CONSENT IS AN ONGOING PROCESS
NOT A ONE AND DONE.
IN TERMS OF THINKING ABOUT
CONSENT THE PERSON UNDERSTANDS
AND BRING IN COMMUNITY ADVOCATE
S HELP IN WRITING MATERIALS AND
WITH RESPECT TO DATA SHARING AND
MAKE SURE PEOPLE UNDERSTAND WHAT
IS MEANT BY DATA SHARING.
THERE'S DISCUSSION ABOUT ONCE
YOU CONSENT TO DATA USED IN
DIFFERENT SETTINGS AND THE
CONSENT FORM GOES WITH THE DATA.
THE PERSON USING THE DATA KNOWS
WHAT IT WAS INTENDED FOR.
THAT WOULD BE USEFUL FOR THE
DATA AND THEN DISCUSSION ABOUT
PARTICIPATING IN STUDIES.
INFORMED OF PROGRESS OF THE
STUDY AND THAT TRANSPARENCY I
THINK WOULD HELP TO TRUST THEN
PARTIAL CONSENT AND WITH THIS OR
THAT ENTITY AND HOW THAT COULD
BE USEFUL FOR THE PEOPLE ASKED
PARTICIPATE.
ONE ASPECT MAY BE CONSENTING FOR
RESEARCH THAT IS IS SPONSORED BY
HIP -- SO LIMITED BY THAT AND
THIS PARTIAL CONSENT MAY BE ABLE
TO DEAL WITH ASPECTS OF THAT.
I THINK THOSE WERE THE MAIN
POINTS.
THE OTHER THING IS WHEN YOU ASK
FOR CONSENT YOU ASK FOR CONSENT
FOR THE PATIENT OR SUBJECT TO
PARTICIPATE IN THE STUDY AND
PROTECTIONS AND ASKING FOR
CONSENT FOR THE DATA TO BE USED
IN THE PROCESS OF ONGOING
SCIENTIFIC RESEARCH.
THERE'S MULTIPLE COMPONENTS IT'S
NOT JUST ABOUT PATIENT
PROTECTION BUT ABOUT DATA
GENERATION AND KEEPING THOSE
THINGS IN MIND IN HOW CONSENT IS
DONE AND BENEFITS ALL APARTY TO
THE IDEA AND SHOULD BE PAID
ATTENTION TO.
>>THANK YOU.
AND LAST BUT NOT LEAST WE HAD A
ROOM ON CYBER SECURITY AND DATA
MANAGEMENT AND USE AND I SHOW
MONICA OH, JESSICA SAYS SHE DOES
NOT HAVE A MIKE.
>>THE PUT A WORD DOCUMENT IN
THE CHAT.
>>THESE ARE TO THE NOTES.
SO WE WENT THROUGH VARIOUS
CATEGORIES OF CYBER SECURITY AND
ALL THE ISSUES WE'VE BEEN
TALKING ABOUT RELATED TO
INFRASTRUCTURE AND HOW WE DESIGN
AND CONTROL POLICIES FOR THE
INFORMATIC SYSTEMS.
I MENTIONED THE DATA ARCHIVE
THAT ARE DATA TYPE SPECIFIC AND
SOME SPECIFIC TO PRECLINICAL
ANIMAL DATA AND MODALITIES AND
SOME RESEARCHERS CAN ACCESS THEM
AND DON'T HAVE TO DOWNLOAD DATA
SETS AND PROCEDURES IN PLACE
WHERE YOU WOULD HAVE PROTECTION
MEASURE THAT COULD BE VERY
IMPORTANT TO SLOW COMPLICATION
OF DATA AWAY FROM CONTROLLED
SYSTEMS IT WILL BE IMPORTANT HOW
WE DESIGN THE INFRASTRUCTURE AND
POLICIES AS FAR AS THE COMPUTE
ENGINES THAT ARE ATTACHED TO THE
DATA STORING AND SHARING
MECHANISMS AND WE TALKED ABOUT
DE-IDENTIFICATION METHODS AND MR
DATA AND TIED THAT TO THE
DISCUSSIONS FROM THE LAST DAY
AND A HALF IN THE WORKSHOP AND
THE CONTINUUM OF DEFACING.
THERE'S DIFFERENT ALGORITHMS
THAT LEAD TO DIFFERENT LEVELS OF
INFORMATION LOSS AND THERE'S
IMPORTANT TRADE-OFFS IN TERMS OF
SCIENTIFIC VALUE AND THE
REGISTRATION IDEA YOU NEED DATA
FOR REGISTRATION AND CERTAIN
OTHER DIMENSIONS OF DATA WITH
SCIENTIFIC VALUE AND IF YOU
THINK OF THE FUTURE AND
DIFFERENT CAPABILITIES.
WE CAN ANTICIPATE SOME BUT NOT
ALL SO WE HAVE AN
UNKNOWN-UNKNOWN SITUATION WHERE
THERE'S LATENT DATA OR
INFORMATION WITHIN THE DATA SETS
AND RE-IDENTIFIABLE VALUE OF
SECONDARY OR FURTHER DOWN STREAM
ANALYSES OR DATA USE AND RE-USE
SCENARIOS.
AND DISCUSSION OF METADATA AND
HOW THAT LEADS TO INFORMED
CONSENT AND STUDY DESIGN.
HOW IS THAT DATA INTERLINKED.
IF WE HAVE ALL SORTS OF DATA
MODULES IN THE CLOUD THEY'RE ALL
HYPER LINKED ESSENTIALLY AND
THINK OF UTILIZING DATA
PROTECTION IF YOU CAN'T LINK
SOME INDIVIDUAL PATIENT OR
SUBJECT DATA IN ONE MODALITY TO
ANOTHER THEN YOU'RE BREAKING THE
AGGREGATION RISK AND HAS
TRADEOFFS WITH THE SCIENTIFIC
VALUE AND WE DISCUSSED THE
SECURITY THAT WE CARE ABOUT
THERE'S THE TRUST WITH SYSTEMS
AND THINK YOU DON'T HAVE TO ASK
PERMISSION TO ACCESS DATA BUT
THEN THERE ARE FORMAL PROCESSES
IN PLACE AND HOW THE BLOCK CHAIN
IS DESIGN INTRINSICALLY ENFORCES
ACCESS PATTERNS AND ON THE OTHER
SIDE YOU HAVE A GATE KEEPER OR
PERMISSION-BASED SYSTEM WHERE
YOU HAVE TO ASK A PARTICULAR
CENTRALIZED ORGANIZATION OR
CONTROL ACCESS POLICY OR PROCESS
FOR PERMISSION OR PERHAPS GO
THROUGH REVIEW AND MAYBE THAT'S
MORE BURDEN BUT ALSO MORE
PROTECTIVE.
WE HAD DISCUSSIONS HOW THAT
RELATES TO DIFFERENT MODALITIES
AND LOOKING AT DIFFERENT WAYS
THOSE MODALITIES CAN BE MISUSED
BY PEOPLE WHETHER AS THE
RESEARCHERS OR OTHER ACTORS AND
WHAT THEIR MOTIVATIONS MIGHT BE
AND ALSO THE ADVANCE OF SCIENCE
REALIZE ON THE CONVERGENCE AND
BRING TOGETHER CONVERGENT
APPROACHES ON THE SAME DATA
SETS.
THAT'S WHERE WE WRAPPED UP.
>>THANK YOU.
WITH THAT I'LL SEND IT TO YOU
THE GROUP CONDENSED.
>>WE TALK ABOUT HOW TO PROTECT
AGAINST DIFFERENT TYPES OF USES
THAT WE MIGHT PREFER NOT TO WANT
AND WE'LL FOLLOW-UP ON THAT
OFFLINE TO SEE WHAT WE CAN DO TO
WORK ON THE TOPIC AND WE THERE
COULD ALSO BEING POTENTIAL GROUP
HARMS NOT FROM INTENTIONAL USES
OF DATA FROM NON-BIOMEDICAL
ACTORS BUT ALSO FROM BIOMEDICAL
ACTORS WHO MAYBE ARE
MISUNDERSTANDING THE DATA IN
IMPORTANT WAYS THAT LEADS THEM
TO METHODOLOGIES NOT EXACTLY
ACCURATE AND LEADS THEM TO MAKE
INACCURATE CONCLUSIONS ABOUT
DATA SETS SINCE THEY WERE NOT
INVOLVED IN THE COLLECTION OF
THE DATA AND LIMITED ABILITY TO
SEE WHAT THEY MIGHT USE THE DATA
FOR.
THAT'S ONE OF THE OTHER TYPES OF
POTENTIAL MISUSES IF YOU WANT TO
CALL IT THAT WAY OR POTENTIAL
HARMFUL USES OUR INVESTIGATORS
HIGHLIGHTED AS POTENTIALLY BEING
OF CONCERN.
THANK YOU.
>>ARE THERE REFLECTIONS FROM
THE LAST DAY AND A HALF OR
INSIGHTS.
FIRST I WANT TO THANK EVERYBODY
BECAUSE IT WAS A FULL AND
ENGAGING TWO DAYS.
GREAT SPEAKERS AND GREAT PANELS
AND LOTS OF GOOD INTERACTION AND
DISCUSSION WITH EVERYBODY BOTH
IN THE ROOM AND ONLINE AND I
THINK DESPITE ONE OR TWO
TECHNOLOGY GLITCHES THE HYBRID
FORMAT ACTUALLY WORKED.
WE'RE GRATEFUL FOR THAT.
I I THINK WHERE HE GO BACK TO
WHERE WE STARTED WHAT DATA WE
CAN COLLECT FROM BRAIN AND THE
INFERENCE MADE AND RISK POSED TO
PEOPLE AND WHAT WE CAN DO ABOUT
THAT AND SOME HOPE -- WELL, HOPE
IS NOT THE RIGHT WORD, SOME IDEA
WE CAN COME UP WITH A SPECTRUM
OF KINDS OF RISKS ACROSS
DIFFERENT TYPES OF DATA.
AND WE STILL MIGHT BE ABLE TO DO
THAT BUT WE DIDN'T ACTUALLY GET
THAT DONE DURING THESE TWO DAYS.
HOWEVER, WE DID HAVE A LOT OF
DISCUSSION ABOUT WHAT CAN WE DO
ABOUT THE POTENTIAL RISKS.
HOPEFULLY THE BREAKOUT SESSIONS
WERE VERY HELPFUL BUT ONE OF THE
THINGS WE HAD TO THINK ABOUT IS
EACH OF THE RECOMMENDATIONS THAT
WAS MADE ARE VERY USEFUL FOR
RESEARCH IN GENERAL AND PROBABLY
FOR BRAIN RESEARCH IN PARTICULAR
AS WELL.
HOW THAT APPLY TO THE SPECIFIC
ISSUES OF DATA SHARING I THINK
WE STILL NEED SOME CONVERSATION
ABOUT AND SOME EFFORT TO PUT
TOWARDS BUT I THINK OVER ALL
IT'S A VERY SUCCESSFUL WORKSHOP
AND I REALLY APPRECIATE
EVERYBODY'S PARTICIPATION AND I
KNOW WE THANKED EVERYBODY THIS
MORNING BUT WE'RE THANKING AGAIN
THE STAFF, ESPECIALLY SASKIA AND
NINA WHO PUT EVERYTHING TOGETHER
AND SCRAMBLED AROUND IN THE LAST
TWO HOURS AS WELL TO GET OUR
GROUPS RIGHT, SO THANK YOU.
AND OVER TO NITA.
>>IT'S ALWAYS BETTER TO NOT GO
LAST BECAUSE IT'S HARD TO FOLLOW
CHRISTINE ON THAT BUT MANY
THANKS TO ALL OF YOU FOR
PARTICIPATING IN THE
CONVERSATION.
I WANT TO TELL YOU WHERE WE'RE
GOING WITH THIS IT'S NOT HAVE A
GREAT CONVERSATION AND THEN WHAT
BUT THE GOAL IS TO HAVE AND THEN
WHAT.
THE NEXT MEETING OF THE
NEUROETHICS WORKING GROUP WILL
BUILD ON THESE INSIGHTS AND TRY
TO TAKE THEM AND DO AS CHRISTINE
WAS DESCRIBING WHICH IS TAKE THE
INSIGHTS AND TO LOOK AT TO WHAT
EXTENT ARE THE RECOMMENDATIONS
OR THE IDEAS THAT HAVE COME OUT
OF THIS.
SOMETHING THAT INFORMS DATA
MANAGEMENT, HUMAN SUBJECTS
RESEARCH, RESEARCH DESIGN, TECH
DESIGN MORE GENERALLY ACROSS THE
BOARD WHICH CAN BE REALLY
INFORMATIVE TO ALL KINDS OF
DIFFERENT EFFORTS AT NIH TO WHAT
EXTENT AND WHAT CAN WE PULL OUT
THAT'S UNIQUE TO BRING AND ALSO
BE IT'S NOT NECESSARILY UNIQUE
TO BRING BUT BRING -- BUT BRAIN
WILL BRING THIS TO DATA STORAGE
AND HUMAN RESEARCH PROTECTION
AND I THINK THAT'S WHAT THE GOAL
OF THE NEXT STEPS IS TO TAKE
THESE IMPORTANT INSIGHTS TO
INFORM WHAT NEWG WILL WORK AT
THE NEXT MEETING TO HOPEFULLY
COME UP WITH USEFUL INSIGHTS
THAT CAN BE SHARED WITH RESEARCH
FOR BRAIN AND ACROSS THE
COMMUNITIES ABOUT BEST PRACTICES
AND AGAIN TRYING TO DISTINGUISH
WHETHER BRAIN IS DIFFERENT OR
JUST A THOUGHT LEADER IN HOW TO
DO THIS WELL IN WAYS THAT
RESPECT INDIVIDUALS AND RESPECT
THE SENSITIVITY OF THE DATA AND
DATA COLLECTION OF PARTICIPATION
BY INDIVIDUALS.
SO THANKS TO ALL OF YOU.
THIS IS INSIGHT THAT WILL
CONTINUE AND BUILT UPON AND WILL
NOT END HERE.
I'LL HAND IT OVER TO JOHN FOR
FINAL, FINAL LAST WORDS.
>>THANKS, CHRISTINA AND NITA
FOR OVERSEEING THIS AND TO THE
REST OF THE TEAM FOR ALL YOU DID
IN OUR GREAT LOGISTICS
CONTRACTORS AS WELL.
JUST ECHOING WHAT WAS SAID HERE,
THIS IS THE BEGINNING OF AN
IMPORTANT CONVERSATION.
THERE WILL BE MORE.
WE WILL FOLLOW-UP AT THE
UPCOMING NEWG MEETING AT THE END
OF AUGUST AND WE'LL CONTINUE THE
CONVERSATION TO SEE HOW BRAIN
CAN CONTINUE TO BE HOPEFULLY
THOUGHT LEADERS IN THE SPACE AND
LEAD THE WAY TO A BETTER PLACE
SO WE CAN ACTUALLY NOT ONLY MORE
EFFECTIVELY IMPLEMENT THE DATA
BUT MORE RESPONSIBLY DO SO AS
WELL AND WE'LL NEVER BE FUTURE
PROOF BUT HOPEFULLY WE CAN
ASSIST THE FIELD IN BEING FUTURE
READY AND WE'LL HAVE GREAT
CONVERSATIONS AND LEARN GREAT
LESSONS ALONG THE WAY AND THANK
YOU ALL FOR PARTICIPATING
WHETHER HERE IN PERSON OR
ONLINE.
IT'S BEEN A GREAT TWO DAYS OF
THOUGHT AND A LOT TO REFLECT ON
AND MOVE ON THANKS AGAIN AND
HAVE A GREAT REST OF THE DAY.