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>>GIVEN SENSITIVITY TO FEAR,
INDEED WORK DONE IN THIS PLACE
AND OTHERS HAS SHOWN THAT
INDIVIDUALS WHEN SHOWN PICTURES
OF PEOPLE WITH SORT OF TOUGH AND
SORT OF SCARY FACES THAT WOULD
BE APPARENT TO OTHERS ARE NOT
SEEN AS SCARE TOW AN INDIVIDUAL
WITH WILLIAMS SYNDROME.
THEY WOULD LIKE TO MEET
EVERYBODY AND INTERACT WITH
EVERYONE, AND SO THAT, THAT SORT
OF SENSITIVITY AND FEAR
INFLUENCES THEIR WILLINGNESS TO
INTERACT.
IN ADDITION, THOUGH, THEY ALSO
HAVE KNOWA AVERSION TO
SITUATIONS IN WHICH THEY FEEL
OTHERS ARE IN DISTRESS SO WE
OFTEN HEAR FAMILIES TALKING
ABOUT HOW THEIR FAMILY MEMBER
WITH WILLIAMS SYNDROME HAS A
REALLY HARD TIME HEARING BABIES
CRY OR SEEING SOMEBODY GET HURT.
AND THAT IDEA OF WANTING TO SORT
OF PROTECT PEOPLE FROM PAIN AND
FEELING DISTRESS WHEN OTHERS IN
DISTRESS IS AN IMPORTANT PART OF
THE PHENOTYPE OF THESE
INDIVIDUALS.
THIS CONSTELLATION OF TRAITS
OFTEN MANIFESTS AS A DESIRE TO
HELP EVEN IN SITUATIONS THAT
MIGHT NOT BE BENEFICIAL TO THEM
SO THERE'S 1 IN PARTICULAR STUDY
IN WHICH INDIVIDUALS WERE AT A
CAMP FOR PEOPLE WITH WILLIAMS
SYNDROME AND THEY SPENT THE DAY
LEARNING ABOUT STRANGER DANGER
AND HOW THEY SHOULDN'T GO WITH
PEOPLE THAT THEY DON'T KNOW AND
AFTER THAT THEY WERE RELEASED TO
DO THINGS OUTSIDE AND THEY HAD
INVESTIGATORS COME AND ACT LIKE
THEY WERE CARRYING A SET OF
BOOKS AND OH MY GOODNESS THIS
WAS HEAVY COULD YOU COME AND
HELP WITH ME DISP THE MAJORITY
OF INDIVIDUALS ARE MORE THAN
HAPPY TO HELP THAT INDIVIDUAL
AND WALKED RIGHT AWAY WITH THEM
TO GO TAKE THE BOOKS TO WHERE
THE PERSON NEEDED WHICH
OBVIOUSLY IS VERY HELPFUL BUT
CAN PUT A PERSON IN A TOUGH
SITUATION IF THE PERSON WITH THE
ASK IS NOT AS GOOD AS WE MIETD
HOPE.
SO CURRENT TREATMENTS FOR
WILLIAMS SYNDROME ARE LIMITED,
BY THE TIME MOST PEOPLE ARE
DIAGNOSED WITH WILLIAMS
SYNDROME, THEY PRODUCED ALL OF
THE ELASTIN THEY WILL EVER MAKE
IN THEIR LIFETIME.
AND SO TREATMENTS ARE USUALLY
BASED ON SORT OF DEALING WITH
THE CONSEQUENCES OF ELASTIN
INSUFFICIENCY AND ARE INVOLVED
IN PRESERVING BLOOD FLOW TO
RELEVANT TISSUES.
THERE ARE SOME SURGERIES THAT
CAN BE USED TO TREAT CERTAIN
VASCULAR PHENOTYPES BUT THEY'RE
NOT ALWAYS SUCCESSFUL AND
UNFORTUNATELY, WE DO LOSE
CHILDREN SECONDAR TOW THEIR
VASCULAR DISEASE.
CURRENTLY THERE ARE NO
THERAPEUTICS THAT ARE AVAILABLE
TO INCREASED ELASTIN EXPRESSION
OR DEPOSITION TO TURN THAT GENE
BACK ON AND UNFORTUNATELY WE
HAVE AN INABILITY TO PRO DICT OR
PREVENT SUDDEN DEATH IN MANY
SITUATIONS BECAUSE WE'RE NOT
COMPLETELY SURE OF THE
MECHANISMS THAT DRIVE THAT IN
THIS POPULATION.
LIKEWISE WHEN WE THINK ABOUT
THERAPEUTICS FOR THE
NEURODEVELOPMENTAL DIFFERENCES
IN PEOPLE WITH WILLIAMS
SYNDROME, IT BECOMES EVEN MORE
COMPLEX BECAUSE THERE ARE
MULTIPLE GENES INVOLVED AND SO
UNDERSTANDING THOSE SOMETIMES
SINNER GESTIC, SOMETIMES
COMPETING MECHANISMS, OF
MULTIPLE GENES ININVOLVED IN THE
NEURAL DEVELOPMENTAL DIFFERENCES
AND COMPLICATED.
AS A RESULT MOST OF THE
TREATMENTS ARE AIMED AT
PALLIATION OF SYMPTOMS RATHER
THAN TRYING TO HIT AT THE
MOLECULAR MECHANISM.
AS A RESULT, IN ORDER TO DEVELOP
MORE EFFECTIVE TREATMENTS, IT'S
IMPORTANT THAT MORE RESEARCH IS
DONE TO UNDERSTAND WILLIAMS
SYNDROME.
HERE AT THE NIH, WE ARE LUCKY TO
HAVE SEVERAL INVESTIGATORS WHO
ARE INVOLVED IN THE STUDY OF
WILLIAMS SYNDROME.
MY GROUP STUDIES CARDIOVASCULAR
DISEASE AND THERE ARE OTHER
GROUPS HERE THAT STUDY OTHER
ASPECTS OF WILLIAMS SYNDROME
HELP AND INDEED WE ACTUALLY
COLLABORATE WITH MANY OF THE
GROUPS HERE AND MANY OF THE
CLINICIANS THAT AID US IN OUR
INVESTIGATIONS AS WELL.
ULTIMATELY THE GOAL OF ALL OF
OUR SEARCH TO DEVELOP MECHANISM
BASED TREATMENTS, WHICH TARGET
GENE PRODUCTS.
SO SOME OF THE WORK THAT WE HAVE
DONE AND I AM NOT GOING TO GET
INTO ALL OF THIS, BUT IT
INVOLVED IN UNDERSTANDING WHAT'S
GOING ON IN WILLIAMS SYNDROME
AND WHY THEY HAVE THE PHENOTYPES
THAT THEY DO AND SO
UNDERSTANDING WHICH GENES ARE
INVOLVED IS IMPORTANT FOR THAT,
SO WE'VE DONE SOME WORK
ADVANCING GENO TYPE PHENOTYPE
RELATIONSHIPS.
WE ARE ALSO INVOLVED IN
UNDERSTANDING THE IMPACT OF
VASCULAR DISEASE ON END ORGAN
FUNCTION AS WELL AS
UNDERSTANDING THE MECHANISM AND
DEPTHS OF THESE INDIVIDUALS AND
WE'VE DONE THAT THROUGH A
VARIETY OF STUDIES.
IN GENERAL, THOUGH, MOST OF OUR
STUDIES AT THIS POINT ARE SORT
OF NATURAL HISTORY TYPE STUDIES
IN WHICH DATA ARE COLLECTED FROM
PEOPLE AND THEIR FAMILIES WITH
THE HOPE OF BENEFITING THOSE IN
THE FUTURE.
SOME OF THE STUDIES THAT WE DO,
POSE BURDENS TO THE FAMILY,
CERTAINLY IN TERMS OF THEIR
TIME, TIME AWAY FROM SCHOOL,
TIME AWAY FROM HOME, TO COME TO
THE NIH, AND MAY EXPOSE THEM TO
IN THIS CASE, MINIMAL AND I'LL
GET BACK TO THAT RISKS.
IN GENERAL, OUR STUDIES BEING
NATURAL HISTORY DON'T
NECESSARILY OFFER THE POTENTIAL
FOR CLINICAL BENEFIT BEYOND
UNDERSTANDING THEIR OWN DISEASE
STATE.
HOWEVER I WOULD SAY THAT FOR
MANY PEOPLE WHO COME TO OUR
STUDIES, THAT LADDER FINDING
ESPECIALLY IN RARE DISEASE IS
REALLY IMPORTANT BECAUSE THEY
CAN'T GET THAT INFORMATION
ELSEWHERE, SO THAT REALLY IS A
BENEFIT FOR THEM.
BUT I WANTED TO GO BACK AND SORT
OF GO THROUGH THE ROLE OF
CONSENT IN THAT SITUATION AND
SORT OF HOW WE THINK ABOUT
CONSENT MORE GLOBALLY.
SO IN THE U.S., THEY HAVE
POLICIES IN GENERAL DO NOT PLACE
AN UPPER LIMIT ON THE RISKS
PERMITTED FOR THOSE WHO CONSENT.
SO IN THEORY IF YOU UNDERSTAND
IT, YOU COULD CONSENT TO IT.
THORS SAID MOST INVESTIGATORS
AND MOST IRB REVIEWERS OF
PROTOCOLS ARE RELUCTANT TO
APPROVE REALLY HIGH RISK
STUDIES, EVEN IN PEOPLE WHO
CONSENT.
NOW FOR PEOPLE WHO ARE UNABLE TO
CONSENT, MOST REGULATIONS LIMIT
THAT RESEARCH TO MINIMAL RISK AS
WE TALKED ABOUT BEFORE OR A
MINOR INCREASE OVER MINIMAL
RISK.
AT THE NIH, THERE ARE
POSSIBILITIES WHERE IF THE
PARTICULAR STUDY WAS NEEDED THAT
PROTOCOL CAN GO THROUGH A
SPECIAL TYPE OF REVIEW THAT
WOULD ALLOW SLIGHTLY HIGHER RISK
RESEARCH TO GO ON BUT IT NEEDS
TO BE CONSISTENT WITH
PARTICIPANTS WISHES.
SO FOR OUR STUDIES, OUR CONSENT
PROCESSES, TYPICALLY LOOK LIKE
THIS, SO MOST OF OUR PATIENTS IF
THEY'RE ADULTS COME TO US AND
HAVE ALREADY OBTAINED A LEGAL
AUTHORIZED REPRESENTATIVE OR
LAR, MEANING THAT IT IS ALREADY
BEEN DETERMINED THAT THEY LACK
THE ABILITY TO CONSENT FOR THEIR
EVEN MEDICAL CARE, CLINICAL CARE
AND RESEARCH CARE THERE AND
SOMEONE IS ASSIGNED TO HELP THEM
WITH MEDICAL DECISION MAKING.
THAT PERSON IS TYPICALLY A
PARENT, CAN BE AN ADULT SIBLING.
OBVIOUSLY FOR CHILDREN WHO
CONSENT TO OUR PROTOCOL THEIR
PATIENTS ARE CONSENTERS.
IN THE CASE, HOWEVER, WHERE A
PERSON DOESN'T FIT EITHER OF
THOSE, WE HAVE A SUBSET OF
INDIVIDUALS WHO DON'T HAVE AN
LAR AND IN THAT CASE, BECAUSE OF
THE KNOWN COGNITIVE IMPAIRMENT
ASSOCIATED WITH WILLIAMS
SYNDROME, THE TEAM NEEDS TO SIT
DOWN WITH THE INDIVIDUAL AND
DETERMINE IF THIS INDIVIDUAL IS
ABLE TO CONSENT.
AND WE USUALLY DO THAT WITH AN
GRIEW IN WHICH WE TALK TO THE
PERSON ABOUT THE STUDY, TRY TO
GAUGE THEIR UNDERSTANDING OF
WHAT WE WILL BE GOING ON IN THE
STUDY AND UNDERSTAND WHAT
DIFFERS FOR THEM BETWEEN
PARTICIPATING IN RESEARCH AND
PARTICIPATING IN SORT OF THE
CLINICAL CARE THAT THEY WOULD
GET AT HOME.
IN MANY CASES IT'S RELATIVELY
CLEAR THROUGH THAT DISCUSSION
WHERE THE ANSWERS FALL.
FOR EXAMPLE, IN SOME CASES WE'VE
ASKED PEOPLE ABOUT, SORT OF WHAT
THE DIFFERENCE BETWEEN RESEARCH
AND CLINICAL CARE IS AND WE HAD
SOMEONE TELL US AT 1 POINT THAT
RESEARCH WAS DONE IN A BIG RED
BUILDING LIKE HERE AT THE NIH
WHEREAS CARE FROM THEIR DOCTOR
HAPPENS IN A WHITE BUILDING
CLOSER TO THEIR HOME.
SO THEY COULD DEFERENTIATE THAT
2 THINGS WERE DIFFERENT BUT NOT
TRULY SORT OF THE MEANING AND
WHY THAT WAS SORT OF IMPORTANT
TO DECISION MAKING.
THERE ARE OTHER CASES THOUGH,
THAT ARE A BIT MORE OF A GRAY
AREA, AND IN THOSE CASES WE WILL
OFTEN GET THE ETHICS TEAM
INVOLVED TO HAVE SORT OF AN
UNBIASED GROUP TO HELP WITH
THOSE ASSESSMENTS.
OF NOTE IT'S IMPORTANT TO NOTE
THAT ALMOST ALL OF THE
INDIVIDUALS THAT WE TALKED TO
WHEN WE TALK TO THEM ABOUT WHY
THEY WANTED TO PARTICIPATE IN
RESEARCH, SITE AND DESIRE TO
HELP OTHERS WITH WILLIAMS
SYNDROME AS 1 OF THEIR REASONS
FOR PARTICIPATION.
AND SO GIVEN ESPECIALLY IN THE
GRAY AREA OF GIVING CONSENT,
GIVEN THE FEATURES OF WILLIAMS
SYNDROME WHICH INCLUDE RELATIVE
STREMGHTS AND ORAL
COMMUNICATIONS SOMETIMES THAT
SUPERSEDE THEIR TRUE
UNDERSTANDING OF THE EVENT, HIGH
EMPATHY AND DISTRESS IN TERMS OF
THINKING ABOUT OTHER PEOPLE THAT
HAVE BEEN HURT IN OTHER
SITUATIONS COMBINED WITH THEIR
HIGH LEVELS OF ALTRUISM, SEEN IN
OUR PEOPLE WITH WILLIAMS
SYNDROME AS WELL AS THEIR
CAREGIVERS, A BIOETHICS
CONSULTATION CAN BE CALLED, TO
DISCUSS THE ETHICS OF
PARTICIPATION.
THESE CONSULTS GO INTO THE WHOLE
FROM THE GAMUT OF UNDERSTANDING
THE NORMS AND POLICIES AND THE
REGULATIONS THAT APPLY TO
RESEARCH IN ALL INDIVIDUALS BUT
IN THIS CASE, PARTICULARLY FOR
THOSE WITH WILLIAMS SYNDROME.
IN OUR DISCUSSION OF SEVERAL
PATIENTS, 1 OF THE THINGS THAT
CAME UP RAISED THE QUESTION OF
HOW ALTRUISM IN WILLIAMS
SYNDROME AND IN OTHER--AND IN
OTHER CONDITIONS SHOULD BE
REGARDED AS IT RELATES TO
PARTICIPATION AND RESEARCH.
SO IN THIS CASE, OUR APPROACH IN
MOST CASES IS DETERMINED BEFORE
WE SEE THE PATIENT AND THAT MOST
OF THE FOLKS HAVE ALREADY AN
ASSIGNED LAR, OR WE HAVE
ASSIGNED A PROXY.
IN THAT CASE, LEGAL STATUTE DOES
NOT REQUIRE THAT THE DESIGNEE OR
THE CONSENTER SEEK APPROVAL
NECESSARILY FROM THE INDIVIDUAL
WITH COGNITIVE IMPAIRMENT,
HOWEVER, WE DO FIND THAT MOST OF
THE CONSENTERS ON OUR STUDY AND
THE ADULT PARTICIPANTS HAVE
REALLY GOOD COMMUNICATION AND
ARE WELL ALIGNED IN TERMS OF
THEIR DEFINITION OF WHAT SORT OF
ACCEPTABLE RISK IS.
HOWEVER, BECAUSE THOSE THINGS
ARE IMPERFECT, SOME OF THE
THINGS THAT WE PUT IN PLACE FOR
OUR STUDIES WHICH ARE NATURAL
HISTORY ARE THE UTILIZATION
WHERE ALL OF THE STUDY, PART OF
OUR PROTOCOLS ARE OPTIONAL.
AND IN THAT WAY, WE CAN USE AN
ONGOING SYSTEM OF CONTINUOUS
VERBAL ASCENT AS AN INDIVIDUAL
ENTERS EACH ACTIVITY WITHIN A
PROTOCOL TO DECIDE IF THIS IS
SOMETHING THAT THEY DON'T WANT
TO GO THROUGH.
SO SOMETIMES THE IDEA OF AN MRI
AT THE BEGINNING WHEN YOU'RE
THINKING ABOUT HELPING PEOPLE
SOUNDS GREAT.
BUT WHEN FACED WITH THE ACTUAL
MRI MACHINE, THAT THAT NO LONGER
FEELS THE SAME WAY AND THAT
ALLOWS US TO HAVE A CONTINUING
AND ONGOING CONVERSATION WITH
THE INDIVIDUALS INVOLVED ABOUT
SORT OF PARTICIPATION IN
INDIVIDUAL ASPECTS OF THE STUDY.
SO THIS ALLOWS US TO SORT OF
WORK BETWEEN THOSE SITUATIONS
WHERE CAREGIVER AND THE
INDIVIDUAL MAY FEEL DIFFERENTLY
ABOUT PARTS OF PARTICIPATION
FROM THAT PERSPECTIVE, IT
DOESN'T NECESSARILY HELP US IN
SITUATIONS WHERE AN INDIVIDUAL
WITH WILLIAMS SYNDROME REALLY
WANTED TO PARTICIPATE BUT WAS
UNABLE TO BECAUSE THEIR
CAREGIVER WAS UNINTERESTED.
UNFORTUNATELY THOSE PEOPLE
PROBABLY NEVER CONTACT US,
BECAUSE IN MOST CASES, THE
CONTACT IS MADE BY THE FAMILY
MEMBER RATHER THAN THE
INDIVIDUAL WITH WILLIAMS
SYNDROME AND SO THOSE DECISIONS
ARE OFTEN MADE BEFORE THEY WOULD
SORT OF ENTER INTO OUR CARE.
REGARDLESS, WE DO HAVE A SET OF
PEOPLE WHO ARE VERY INTERESTED
IN PARTICIPATING AND SOMETIMES
OFFER OR ENDORSE A WILLINGNESS
TO DO MORE THAN WHAT IS ON OUR
CURRENT MINIMAL RISK PROTOCOLS.
SO THE QUESTION IS COULD WE
CONSIDER HIGHER RISK FOR PEOPLE
WHO ARE TRULY HIGHER ALTRUISTIC.
IN GENERAL, WHEN YOU LOOK AT THE
LITERATURE WITH RARE DISEASE,
IT'S WELL DESCRIBED THAT MANY
INDIVIDUALS DISPLAY HIGH
ALTRUISM.
MANY OF THESE INDIVIDUALS AND
THEIR FAMILIES HAVE COME THROUGH
A LONG DIAGNOSTIC ODORS ESESY
WHERE IT'S TAKEN THEM YEARS TO
GET TO THEIR DIAGNOSIS.
ONCE THE DIAGNOSIS IS MADE, THEY
OFTEN FIND THEMSELVES IN
COMMUNITIES WHERE THE KNOWLEDGE
OF THEIR CONDITION IS RELATIVELY
SMALL AND THEY CAN HAVE DELAY IN
TERMS OF DIAGNOSIS AND
IMPLEMENTATION OF THE
APPROPRIATE THERAPIES FOR THEM.
THEY ALSO PERCEIVE A RELATIVELY
DEE CREASED LIMIT AND INTEREST
FOR FOCUS ON THERAPIES FOR RARE
DISEASES RELATIVE TO MORE COMMON
1S.
AND ALL OF THOSE THINGS SORT OF
COME TOGETHER FOR THIS SORT OF
DESCRIPTION OF FAMILIES SAYING
WE'VE GOTTEN HERE, IT'S BEEN A
ROUGH GO, WE REALLY LIKE TO MAKE
THIS BETTER FOR THE NEXT PERSON.
AND IN SEEING THAT SORT OF
APPROACH TO TAKING CARE OF THE
NEXT PEOPLE!
EVEN OUTSIDE OF RARE DISEASE,
AND EVEN IN PEOPLE WHO DON'T
HAVE A DISEASE THEMSELVES AT
ALL, THERE ARE SITUATIONS IN
WHICH PEOPLE USING ALTRUISM WANT
TO PARTICIPATE IN RESEARCH THAT
REALLY DOESN'T HAVE ANY
POTENTIAL BENEFIT TO THEM BUT
MAY TOUCH PEOPLE THAT THEY CARE
ABOUT OR DISEASE PHENOTYPES THAT
THEY CARE ABOUT.
SOME OF THOSE HAVE COME UP IN
TERMS OF HIV CHALLENGE STUDIES
OR IN PEOPLE WHO ARE INTERESTED
IN PURSUING KIDNEY BIOPSIES EVEN
THOUGH THEY'RE HEALTHY
VOLUNTEERS BECAUSE THEY'RE
INTERESTED IN BETTER TREATMENTS
FOR THAT CONDITION.
OBVIOUSLY THE POTENTIAL BENEFITS
TO SORT OF LEANING INTO ALTRUISM
IS THAT WE MAY BE ABLE TO GET
MORE PEOPLE INVOLVED IN RESEARCH
AND WITH MORE PEOPLE INVOLVED IN
RESEARCH, MAKE FASTER PROGRESS
IN SORT OF UNDERSTANDING THINGS
WHICH COULD ULTIMATELY SAVE
LIVES AND ALLOW MOTIVATED
INDIVIDUALS TO CONTRIBUTE
VALUABLE RESEARCH.
OBVIOUSLY THE POTENTIAL RISKS IN
THIS SITUATION ARE THE
POSSIBILITIES OF COERCION OR
EXPLOITATION IF USED
INAPPROPRIATELY.
AND SO OUR QUESTIONS HERE FOR
THE DISCUSS ANT ARE RELATED TO
HOW WE SHOULD APPROACH ALTRUISM
IN ALL INDIVIDUALS, NOT SORT OF
LIMITED TO WILLIAMS SYNDROME.
IT IS ACCEPTABLE TO APPEAL TO
ALTRUISM IN RESEARCH AS WE
TALKED ABOUT AT THE FRONT?
IS IT POSSIBLE TO EXPLOIT PEOPLE
BASED ON ALTRUISM?
DOES THE PRESENCE OF ALTRUISM
ALLOW US TO SORT OF PUSH THE
RISKINESS OF RESEARCH FOR THOSE
WHO ARE WILLING TO DO SO?
AND DOES IT MATTER IF THE
ALTRUISM IS ASSOCIATED WITH
THEIR MEDICAL CONDITION, EITHER
BECAUSE IT IS RARE OR BECAUSE IN
THIS CASE, THE GENETICS OF THE
CONDITION MIGHT MAKE THEM MORE
LIKELY TO ACT IN AN ALTRUE ISTIC
WAY, ALSO DOES THE ACCEPTABLE OF
APPEALS TO ALTRUISM CHANGE
DEPENDING ON THE ABILITY OF THAT
INDIVIDUAL TO CONSENT FOR
THEMSELVES.
SO AS WE SAID, THIS IS SORT OF A
MOUTHFUL IN TERMS OF LOTS OF
QUESTIONS THAT WE PUT OUT THERE,
SO, I'M GOING TO STOP AT THIS
POINT AND TO GIVE OUR DISCUSS
ANT A GOOD AMOUNT OF TIME TO
SHARE SOME ANSWERS WITH US.
SO, THANK YOU.
>>THANK YOU BETH FOR A
WONDERFULLY INSIGHTFUL
PRESENTATION AND FOR SHARE BEING
VERY INTERESTING LITERATURE ON
THIS AND I'VE LEARNED A GREAT
DEAL FROM IT, CAN YOU HEAR ME
WELL AND SEE MY SLIDES?
>>LOOKS AND SOUNDS GOOD, ALEX.
>>VERY GOOD.
SO I HAVE NO CONFLICTS OF
INTEREST WITH RESPECT TO THE
PRESENTATION AND MY LEARNING
OBJECTIVE OR OUR LEARNING
OBJECTIVE IS SIMPLY TO THINK
ABOUT SOME POSSIBLE WAYS OF
ANSWERING THE KEY QUESTIONS THAT
BETH JUST RAISED ABOUT THE
ETHICS OF ALTRUISM IN THE
CONTEXT OF CLINICAL TRIALS AND
ESPECIALLY IN THE CONTEXT OF
INDIVIDUALS WITH MILD TO
MODERATE INTELLECTUAL DISABILITY
AND THE PATTERN OF ALTRUISTIC
BEHAVIOR THAT BETH HAS EXPLAINED
ARE ASSOCIATED WITH WILLIAMS
SYNDROME.
SO WHAT I WOULD LIKE TO DO IS I
WILL END BY GIVING SOME QUICK
ANSWERS TO BETH'S QUESTIONS BUT
I WANT WORK TOWARDS THAT IN
SEVERAL STEPS, THE FIRST STEP IS
TO CONSIDER HOW WE SHOULD THINK
OF THE WAYS IN WHICH ALTRUISTIC
MOTIVATION AND PERHAPS MORE
BROADLY NONSELF-MOTIVATED
MOTIVATION CAN CONTRIBUTE TO
POTENTIAL RESEARCH SUBJECT'S
WELL BEING.
NOW I THINK IT'S VERY WELL
ACCEPTED THAT IN ALMOST
EVERYONE'S LIFE, THERE ARE
ALTRUISTIC TIES OF LOVE AND
FRIENDSHIP TO OTHERS, WE MAKE
OUR WELL BEING DEPEND ON THE
WELL BEING OF OUR INTIMATES IN A
VARIETY OF WAYS.
SO FOR EXAMPLE, I'M THE FATHER
OF TWIN BOYS, THEY'RE VERY YOUNG
BUT THEY'RE BOND IS EXTREMELY
STRONG AND IF 1 IS HURT, THAT
GREATLY DISTRESSS THE OTHER AND
FOR EXAMPLE, IF THERE WAS EVER A
NEED TO SAVE 1 THROUGH A MEDICAL
INTERVENTION THAT WOULD CAUSE
SOME PAIN OR DISTRESS TO THE
OTHER, I'M SURE THAT I WOULD
VERY LIKELY REGARD IT AS
BENEFITING EVEN THE 1 WHO WOULD
BE UNDERGOING THE PAINFUL
PROCEDURE FOR THE SAKE OF HIS
BROTHER MERELY BECAUSE HIS
BROTHER'S WELL BEING IS SUCH A
BIG PART OF WHAT MAKES HIS LIFE
GO WELL.
BUT I'M ASSUMING IN THIS CONTEXT
THAT THIS FORM OF DEPENDENCE ON
OUR INTIMATE'S WELL BEING IS NOT
NORMALLY AN ISSUE IN THE CHOICE
OF BECOMING A RESEARCH SUBJECT
BECAUSE THOSE WHO MIGHT BE
BENEFITED ARE TYPICALLY
STRANGERS, PERHAPS PEOPLE WITH A
SIMILAR CONDITION THAT 1 HAS, SO
1 MIGHT FEEL THE SENSE OF
SOLDART--DARTHITY WITH ALL THOSE
OTHERS BUT IT'S NOT THIS TYPE OF
DEPENDENCE.
SO REALLY WHAT WE'RE AFTER IS
THINKING ABOUT PEOPLE WHO HAVE
MORE GENERALIZED ALTRUISM OR
THINKING ABOUT ADVANCEMENT OF
KNOWLEDGE AND THEY MAY WANT TO
BE HELPFUL TO OTHERS IN GENERAL.
THEY WANT TO CONTRIBUTE TO
IMPROVING THE LIVES OF OTHERS
WITH SPECIFIC DISEASES,
SOMETIMES THOSE OF FAMILY
MEMBERS OR THOSE THAT THEY
THEMSELVES EXPERIENCE.
OR, SIMPLY ADVANCE KNOWLEDGE OR
SOME COMBINATION OF SUCH
MOTIVES.
SO THAT'S THE TYPE OF ALTRUISTIC
AND MOTIVATIONS WE SHOULD FOCUS
ON.
NOW HOW DOES HAVING SUCH A
MOTIVATION CONTRIBUTE, HELP
DETERMINE A PERSON'S WELL BEING.
WELL, TAKE A PERSON WHO HAS A
STEADY, AND RELATIVELY
CONSIDERED GENERAL ALTRUISTIC OR
OTHER INTERESTED AIMS, THAT'S TO
SAY, THEY, OVER A LONG PERIOD OF
TIME, AND IN A VARIETY OF
CONTEXT EXPRESS A COMMITMENT TO
SAY IMPROVING THE LIVES OF
PEOPLE WITH WILLIAMS SYNDROME OR
IMPROVING OUR UNDERSTANDING OF
THE CONDITION AND LET'S IMAGINE
THAT THESE STUDYING RELATIVELY
CONSIDERED ALTRUISTIC AIMS ARE
BASED REALLY ON THEIR
ATTACHMENTS AND THEIR VALUES,
THE THINGS THAT YOU CAN SEE
INFUSE THEIR DAILY LIFE AND THE
WAY THEY TALK ABOUT WHAT THEY
WANT TO ACHIEVE IN LIFE.
AND MORE OVER, IT'S NOT JUST
TALK THAT THESE AIMS STEADILY
GUIDE THEIR BEHAVIOR IN A
VARIETY OF CONTEXT.
SO THIS COULD JUST BE EXPRESSING
A REALLY HELPFULNESS TOWARDS
PEOPLE AROUND YOU, THE TYPE OF
HELPFULNESS THAT BETH CITED IN
THE DISCUSSION OF PEOPLE WITH
WILLIAMS SYNDROME AND WHAT'S
IMPORTANT IS IT'S NOT JUST DUE
TO A SPECIFIC CONTEXT BUT IT'S
KIND OF A STEADY DISPOSITION TO
WANT TO HELP OTHERS THAT ALSO
GUIDES PEOPLE'S BEHAVIOR.
NOW IN SUCH CONTEXT THE PERSON
WHO HAS THIS DESIRES OR AIMS
THEIR SUCCESS OF ACHIEVING THESE
AIMS SHOULD IMPROVE, THEIR
SUCCESS WOULD COUNT AS WELL
BEING, KIND OF AS A GBL TRUTH
FOR WELL BEING IS A PERSON'S
SUCCESS THAT THEY'RE STEADILY
HELD AND PURSUED VALUABLE AIMS
CONTRIBUTES TO THE WELL BEING,
THIS POINT IS MADE IN AN ARTICLE
ON ALTRUISM IN CLINICAL
RESEARCH, BUT IT'S ALSO, I THINK
A VERY GENERAL FRAME THAT FITS
LOTS OF DIFFERENT CONCEPTIONS OF
WELL BEING.
IT FITS WHAT'S KNOWN AS
PREFERENCE BASED CONCEPTIONS OF
WELL BEING, BECAUSE THOSE THAT
SAY MERELY BECAUSE I HAVE A
STEADY OR CONSIDERED PREVENTIVE
FERENCE FOR SOMETHING, GETTING
THAT THING CONTRIBUTES TO MY
WELL BEING, BUT IT ALSO FITS
MUCH MORE WHAT'S OFTEN CALLED
OBJECTIVE LISTS OR GOING BACK TO
ARISTOTLE WHO THOUGHT IT'S
FITTING FOR A RATIONAL BEING, TO
PURSUE VALUABLE ENDS AND THEN TO
HAVE THE DEGREE OF SUCCESS AT
THE PURSUIT OF THESE ENDS TO
DETERMINE IN PART AT LEAST THEIR
WELL BEING.
AND I THINK VERY IMPORTANTLY,
THIS CLAIM ABOUT WELL BEING IS
TRUE EVEN FOR THOSE WITH MILD TO
MODERATE INTELLECTUAL
DISABILITY, IT'S ALSO TRUE FOR
YOUNG CHILDREN, I THINK, IT'S
VERY CLEAR TO ME, MY BOYS ARE
NEARLY 3 BUT NOT YET 3, THAT
THEY ALREADY HAVE THE CAPACITY
TO VALUE CERTAIN OTHERS AND
THEIR RELATIONSHIPS, DEVELOP
FRIENDSHIPS, CLOSE TACHMENTS AND
ALSO NOT TO TAKE STEPS TO IN
SMALL WAYS IMPROVE THE LIVES OF
OTHERS, THEY HAVE SUCH A STUDY
DISPOSITION, MORE OVER NOT EVEN
A 3 YEAR-OLD YET CAN HAVE SUCH A
DISPOSITION AND HAVE SUCH VALUES
WHICH I THINK THE SUCCESS OF
THESE THEIR AIMS IN THIS REGARD
CAN CONTRIBUTE TO THE GOODNESS
OF THEIR LIFE, IT'S CLEAR THAT
THOSE WITH MILD TO MODERATE
INTELLECTUAL DISABILITY CAN ALSO
HAVE THEIR WELL BEING IMPROVED
IN THIS WAY AND THERE'S ALSO
VERY INTERESTING WORK BY
JAWORSKA, ON PEOPLE WITH
ADVANCED DEMENTIA IN WHICH HE
EMPHASIZES THERE SUCCESS AT
THEIR AIMS INCLUDING OTHER
ORIENTED AIMS, OR LOTS OF
INTERESTED AIMS, IS QUITE
PERSWAIZIVELY CAN BE PARENT OF
THE GOOD LIFE FOR THEM.
SO WHAT IS--WHAT FOLLOWS I THINK
IS THAT IN ASSESSING THE IMPACT
OF PARTICIPATION IN THE STUDY ON
ALTRUISTIC PARTICIPANTS WELL
BEING, WE SHOULD CONSIDER NOT
MERELY THE HEALTH RELATED WELL
BEING IMPACTS SUCH AS THE HEALTH
RISKS OR BENEFITS STUFF, I COME
FROM BEING INVOLVED IN THE
RESEARCH.
MORE BENEFITS THAT MAY COME FROM
KNOWING MORE ABOUT THEIR
CONDITION OR THEIR PERSONAL
SITUATION, BUT ALSO, THE
SUCCESS, THE DEGREE OF SUCCESS
OR SUCCESS THAT PARTICIPATING IN
THIS STUDY WILL HAVE, FOR THEIR
AIMS.
SO LET ME MAKE THIS VIVID BY
VARYING A CASE THAT APPEARS IN A
PAPER BY DANA HOWARD AND DAVE
WENDLER AND IT'S A FICTIONAL
CASE, IT'S CALLED THEIR SAMANTHA
CASE.
THE CASE OF A 22 YEAR-OLD WITH
WILLIAMS SYNDROME WHO'S NOT
FULLY COMPETENT TO MAKE
DECISIONS TO ENROLL IN MEDICAL
RESEARCH HERSELF LIKE THAT IS
THE CASE OF MOST POTENTIAL
PARTICIPANTS.
SHE'S INVITED TO PARTICIPATE IN
A STUDY, WHICH USING FMRI,
RESEARCHERS PROPOSE TO ASSESS
WHETHER THERE ARE NEUROLOGICAL
DIFFERENCES BETWEEN HOW PEOPLE
WITH WILLIAMS SYNDROME RESPOND
TO THREATENING FACIAL
EXPRESSIONS AND THREATENING OR
OTHERWISE DISTRESSING SCENES.
LET'S IMAGINE, I'M ADDING THIS
TO THE CASE AS PRESENTED IN
HOWARD WENDLER, LET'S IMAGINE
THIS WILL CAUSE HER TEMPORARY
MODERATE TO MILD ANXIETY AND
THIS PARTICIPATION IN THIS STUDY
WILL HAVE NO HEALTH BENEFIT TO
HER.
SO 1 THING I LEARNED FROM BETH'S
PAPERS ON THE TOPIC IS THAT
GENERALIZED ANXIETY IS VERY
COMMON AMONG PEOPLE WITH
WILLIAMS SYNDROME SO THEY DON'T
ALWAYS HAVE THAT BUT THEY'RE
ALSO QUITE ANXIOUS.
IMAGINE THAT PARTICIPATING IN
THIS STUDY WILL IMPACT THIS
ANXIETY IN SOMEWHAT NEGATIVE WAY
BECAUSE ESPECIALLY THE
THREATENING SCENES OR SCENES OF
HARMS TO OTHERS THAT WILL BE
PRESENTED WITH WILL BE
DISTRUSTED.
NOW, SUPPOSE, THAT THE TRUSTEE,
THE PERSON WHO HAS TO OFFER THE
CONSENT FOR ENROLLMENT IN THE
STUDY KNOWS SAMANTHA, SOMEONE
WITH A STEADY DISPOSITION TO
HELP RECOLLECTS AND CURIOSITY
ABOUT HER CONDITION, NOT MERELY
FOR HER OWN SAKE BUT FOR THE
SAKE OF EVERYONE WITH WILLIAMS
SYNDROME.
I THINK IT FOLLOWS FROM WHAT
I'VE SAID BEFORE THAT IF THE
RESEARCH HAS A REASONABLY
EXPECTATION OF GENERATING
KNOWLEDGE THAT WILL EVENTUALLY
CONTRIBUTE TO IMPROVING THE
LIVES OF THOSE WITH WILLIAMS
SYNDROME, AND IF THE DOWN SIDES
INVOLVED ARE MODERATE AS WE'RE
IMAGINING, I THINK THEY ARE,
THEN THIS MAY PROVIDE A BASIS TO
CUT PARTICIPATING IN RESEARCH AS
WELL AS PROMOTING SAMANTHA'S
WELL BEING.
WE SHOULDN'T FOCUS NARROWLY ON
WHATEVER STRESS OR LOSS OF TIME
SHE MAY FACE BUT ALSO BY THE WAY
IN WHICH THIS STUDY MAY
CONTRIBUTE TO HER ACHIEVING HER
AIMS AND REALIZING HER VALUES AT
LEAST IN THE MODEST WAY IN
WORLD.
THAT WOULD BE GOOD FOR HER.
NOW I WANT TO MOVE BEYOND THIS
POTENTIAL WAY IN WHICH IN
ALTRUISTIC INDIVIDUALS
CONTRIBUTING TO THE GOOD OF ALL
THOSE OR THE ADVANCEMENT OF
SCIENCE, MAY BE GOOD FOR THEM.
BECAUSE I THINK OUR ABILITY TO
ADVANCE OUR VALUABLE LONG
SELF-INTERESTED GOALS IS NOT
MERELY GOOD FOR US IN THE NARROW
SENSE OF CONTRIBUTING TO OUR
WELL BEING, IT'S ALSO IMPORTANT
BECAUSE EACH OF US IS OWED AN
OPPORTUNITY TO PURSUE OUR
ALTRUISTIC OR OTHER
NONSELF-INTERESTED GOALS SIMPLY
BECAUSE WE'RE AGENTS WHO HAVE
THIS VALUABLE WAY OF PURSUING
OUR AIMS IN THE WORLD AND A LIFE
IN WHICH WE ONLY HAVE THE
OPPORTUNITY TO PURSUE OUR OWN
WELL BEING, IS IN A SENSE QUITE
A LIMITED LINE AND WE PURSUING
THESE GOALS NOT TO PROMOTE OUR
OWN WELL BEING, BUT WE CAN
PROMOTE OUR WELL BEING FOR
REASONS I MENTIONED BUT AND WHEN
WE WISH FOR SUCCESS WE DON'T DO
FOR FOR OUR OWN SAKE, AND SO I
THINK 1 IMPORTANT BY MARCUS ON
WHAT WE OWE OTHER PEOPLE BROADLY
SPEAKING WHAT THE CURRENCY OF
JUSTICE IS, IS THAT WE OWE
PEOPLE NOT MERELY OPPORTUNITIES
TO PURSUE THEIR WELL BEING BUT
ALSO OPPORTUNITIES TO PURSUE
NONSELF-INTERESTED GOALS, BEYOND
FOR REASONS BEYOND THE MERE FACT
THAT IN SUCH PURSUIT, WE CAN
PROMOTE OUR OWN WELL BEING.
AND I THINK THIS TYPE OF
OPPORTUNITY, THIS TYPE OF
OPPORTUNITY FOR WHAT SEN CALLS
IS LIMITED OPPORTUNITIES TO
PURSUE SUCH GAINS EFFECTIVELY.
THOSE CAN BE INDIVIDUALS WHO IN
A VARIETY OF WAYS HAVE LIMITED
OPPORTUNITIES OR ARE
MARGINALIZED AND READING BETH'S
WORK ON PEOPLE WITH WILLIAMS
SYNDROME, THIS IS DEFINITELY
TRUE OF THEM.
SO WHAT DOES THIS MEAN FOR
SAMANTHA'S CASE, IT IMPLIES THAT
THOSE PARTICIPATE NOTHING THE
STUDY IS NOT TO HER EXPECTED
BENEFIT EVEN IF WE INCLUDE THE
WAYS IN WHICH WE INCLUDE SUCCESS
THAT HER ALTRUISTIC AIMS MIGHT
CONTRIBUTE TOKER WELL BEING, IT
MIGHT NOT BE EXPECTED TO HER
BENEFIT, IT STILL MAY BE
VALUABLE TO HER BECAUSE IT
FURTHERS HER NONSELF-INTERESTED
GOALS AND I THINK TRUSTEES AND
STUDY DESIGNERS SHOULD CONSIDER
THIS.
THIS VALUABLE OPPORTUNITY TO
PURSUE OUR NONSELF-INTERESTED
GOALS, VALUABLE BEYOND THE WAYS
IN WHICH IT CONTRIBUTES TO OUR
WELL BEING.
SO THAT'S 2 REASONS SO FAR TO
THINK THAT A STUDY DISPOSITION
TO BE ALTRUISTIC IS RELEVANT TO
OUR UNDERSTANDING OF WHAT IS IN
THE INTERESTS, THE WELL BEING
INTERESTS AND BROADER INTERESTS
OF POTENTIAL RESEARCH SUBJECTS
AND I THINK TRUSTEES SHOULD ALSO
CONSIDER THIS.
THE QUESTION AROSE, ABOUT WHAT
ABOUT EXPLOITING THIS ALTRUISM,
I DON'T HAVE A FULL ANSWER TO
THIS, BUT IN THINKING ABOUT THE
CASES THERE COULD BE 2 THINGS
ESPECIALGLY TO LOOK OUT FOR WHAT
I'VE SAID SO FAR, I FOCUSED ON
STUDY AND AS BEST AS THEY CAN BE
CONSIDERED DISPOSITIONS THAT
EXPRESS VALUES THAT A PERSON SO
TO SPEAK INFUSE A PERSON'S LIFE
AND ACTION AS A WHOLE.
THAT DOES NOT ONLY APPLY TO THAT
THE SATISFACTION OF FLEETING
APPARENTLY ALTRUISTIC
PREFERENCES THAT COME FROM
GIVING IN TO SOCIAL PLEASURE OR
A DESIRE TO PLEASE A STRANGER R
PERSON OF AUTHORITY SHOULDN'T
COUNT TOWARD'S A PERSON'S WELL
BEING.
SO FAR, THESE MAY BE INDEPENDENT
OF COMPLEX AND MAN
EPIGENETICCULATABLE PREFERENCES
WHICH DO NOT EXPRESS SO TO SPEAK
STEADILY HELD VALUES BUT MAY
MERELY BE THE CONSEQUENCE OF THE
PARTICULAR CONTEXT EITHER BY
DESIGN OR SIMPLY BY ACCIDENT.
I THINK WE SHOULD NOT THINK OF
THE SATISFACTION OF THESE MORE
FLEETING OR INDEPENDENT DESIRES
AS CONTRIBUTING TO A PERSON'S
WELL BEING.
AND FURTHER THOUGHT I HAD WHICH
IS THAT RESEARCHERS NATURALLY
WILL BE OPTIMISTIC ABOUT THE
VALUE OF THE RESEARCH.
AND I THINK FOR EACH OF US, IT'S
INCUMBENT ON US IF WE DESIGN THE
STUDY, TO TONE DOWN OUR NATURAL
ALTRUISM AND PRESENT AS BEST AS
POSSIBLE A REALISTIC AND
ACCURATE PICTURE TO THE
POTENTIAL RESEARCH SUBJECT AND
THEIR TRUSTEE OF THE POSSIBLE
BENEFITS TO OTHERS OF THEIR
PARTICIPATION AND LET'S FACE IT,
IN MOST CASES THE EXPECTED
BENEFIT BROUGHT ABOUT BY ANY 1
PARTICIPANT, PARTICIPATING, WILL
TYPICALLY BE SMALL AND HARD TO
DETERMINE, SO EVEN THOUGH WE CAN
CONFIDENTLY MAKE GENERAL CLAIMS
THAT FOR EXAMPLE, OF THE TYPE
THAT BETH MADE IF WE CAN DO MORE
RESEARCH WITH MORE SUBJECTS AND
EVEN SOME RESEARCH WHICH MIGHT
INVOLVED SOMEWHAT HIGHER RISK
BUT FOR PARTICIPANTS WE CAN
EXPECT THAT WITH THE ADVANCEMENT
OF KNOWLEDGE, WE CAN DO MORE
GOOD FOR PEOPLE, WE HAVE TO BE
CAREFUL NOT TO LET THAT TYPE OF
GENERAL CLAIM HAVE TOO MUCH
WEIGHT IN OUR PRESENTATION OF
WHAT WE EXPECT THE CONTRIBUTION
WILL BE OF THIS 1 PARTICIPANT
JOINING IN BECAUSE THAT OF
COURSE IS WHAT'S CRUCIAL TO
DETERMINING HOW MUCH THEY ARE
ABLE TO ADVANCE AIMS THAT THEY
CARE ABOUT.
SO I WOULD SAY THERE MAY BE MORE
WAYS TO EXPLOIT SOMEONE'S
ALTRUISM, BUT HERE ARE 2 WHICH
COME TO MIND ESPECIALLY IN THIS
CONTEXT.
THE RELIANCE BY RESEARCHERS ON
FLEETING OR CONTEXT PREFERENCES
RATHER THAN ON STEADY ALTRUISTIC
DISPOSITIONS OR ARE
MISREPRESENTATION OF THE
BENEFITS, RELYING ON THOSE TO
GET PEOPLE TO EITHER CONSENT ON
BEHALF OF THE PERSON, THE
TRUSTEE, OR GET ASCENT OF THE
RESEARCH SUBJECT, I THINK WOULD
BE EXPLOITED.
NOW WHAT ABOUT, I'VE TALKED
ABOUT WELL BEING, AGENCY GOALS
AND EXPECTATION, BUT THERE'S A
FULL RELEVANCE HERE WHICH IS THE
SUBJECT'S WILL AND THEIR
UNDERSTANDING.
SUPPOSE THAT FOR THE SAKE OF THE
ARGUMENT ON BALANCE GIVEN HER
LONG STANDING VALIUMS AND AIMS,
IT WOULD BE IN SAMANTHA'S BROAD
WELL BEING AND AGENCY INTEREST
TO WILLINGLY PARTICIPATE IN THE
STUDY WE'RE IMAGINING FOR
ALTRUISTIC REASONS, NOW CONSIDER
A CASE AS FOLLOWS.
SAMANTHA OFFERS HER ASCENT BUT
IT'S MISCONCEIVED WHEN ASKED WHY
SHE WISHES TO PARTICIPATE, SHE
ANSWERS SHE BELIEVES IT WILL
HELP HER ANXIETY WHEN SHE'S
ADVICED NOT TO EXPECT ANY SUCH
BENEFIT, SHE RESPONDS SHE WANTS
HER ANXIETY TO GO AWAY AND HOPES
THIS WILL HELP.
NOW WHAT SHE WE MAKE OF SUCH
MISCONCEIVED DESCENT?
I THINK EVEN WITH SUCH
MISCONCEIVED ASCENT, A TRUSTEE
SEEING HER OVERALL PATTERN OF
COMMITMENTS AND THE THING SHE
TRIES TO ACHIEVE IN HER LIFE AND
SAYS SHE TRIES TO ACHIEVE WHICH
IS XASM HELPING OTHERS AND
FURTHERING KNOWLEDGE ABOUT
WILLIAMS SYNDROME, WE CAN STILL
SEE HER PARTICIPATION AS
ADVANCING HER--SOME ASPECTS OF
HER WELL BEING AND HER AGENCY
INTEREST.
NONETHELESS, THE--THE DEGREE TO
WHICH IT DOES SO, IS SOMEWHAT
ATTENUATE BY THE FACT THAT THE
REASON FOR WHICH SHE ASCENTS IS
MISCONCEIVED AND IN FACT NOT IN
LINE WITH THESE AIMS.
SO I THINK, IT WOULD BE SO TO
SPEAK, EVEN BETTER FROM THE
PERSPECTIVE OF HER WELL BEING
AND AGENCY INTERESTS IF SHE WERE
ABLE TO ACT IN THIS INSTANCE TO
ASCENT ON THE BASIS OF HER LONG
STANDING AND KNOWLEDGE BASED
AIMS, WHAT FOLLOWS THEN IS NOT
THAT WE CANNOT TAKE SUCH RISK
CONCEIVED DESCENT AS A REASON TO
PROMOTE HER TO ENGAGE IN THE
STUDY, BUT RATHER THAT IT WOULD
BE EVEN BETTER IF IN THIS
CIRCUMSTANCE THE DIALOGUE WOULD
CONTINUE WHILE TRYING TO FOCUS
ON THE WAYS IN WHICH THIS STUDY,
THESE OTHER AIMS AND KNOWLEDGE
OF INTEREST OF THINGS.
SO I WOULD SAY IT'S IMPORTANT
FOR RESEARCHERS AND TRUSTEES TO
TRY TO GET HER TO SEE, THESE
ALTRUISTIC NONSELF-INTERESTED
REASONS EVEN IF THEY CANNOT
CLEAR UP THE MISCONCEPTION.
NOW CONSIDER ANOTHER CASE, A
VARIANT.
I'M GOING TO CALL IT SAMANTHA'S
REFUSAL.
WHEN SHE'S ADVICE VISED NOT TO
EXPECT ANY THERAPEUTIC BENEFIT
AND INDEED IT WILL CAUSE
INCREASE IN HER ANXIETY, SHE
RESPONDS SHE DOES NOT WISH TO
PARTICIPATE AT ALL.
NOW IN LINE WITH THAT THAT
PROPOSES WE HAVE SEVERAL REASONS
NOT TO ENROLL HER BECAUSE EVEN
IF IT'S TRUE THAT WHILE HER
PARTICIPATION WOULD SERVE HER
AND BROADER AGENCY INTEREST,
UNWILLING PARTICIPATION MIGHT
WELL NOT DO SO BOTH OF BECAUSE
WILLING PARTICIPATION WOULD
INVOLVE A LIKELY INCREASE IN
ANXIETY BECAUSE WE'RE AWLTZ MORE
ANXIOUS WHEN WE'RE FORCED TO DO
SOMETHING WE REALLY DON'T WANT
TO DO.
BUT MORE OVER EVEN FROM THE
PERSPECTIVE OF HER VALUABLE
AGENCY WHICH WE'VE BEEN FOCUSING
ON, IT WOULD CLEARLY NOT BE HER
AGENCY THAT CONTRIBUTED TO HER
ACHIEVING HER GOALS.
THE FACT THAT PARTICIPATING
WOULD CONTRIBUTE TO HER GOALS
REMAINS, BUT, HER PARTICIPATION
IF IT'S WITHOUT HER ASCENT OR
AGAINST HER WISHES WOULD REALLY
NOT MAKE THIS HER SUCCESS OR HER
CONTRIBUTION BECAUSE IT WOULD
DISTANCE HER FROM THE WAY IN
WHICH SHE CONTRIBUTES.
SHE MAY MAKE MERE CAUSAL
CONTRIBUTIONS BUT IT'S NOT IN
ANY SENSE GUIDED BY HER.
MORE OVER INDEPENDENTLY THE
DEGREE TO WHICH PARTICIPATION
WOULD OR WOULD NOT CONTRIBUTE TO
HER LONG STANDING AIMS THERE'S
SIMPLY A MATTER OF RESPECTING A
PERSON'S WILL QUITE APART FROM
WHAT SERVES THE INTERESTS.
SO I THINK, DAVE WENDLER AND
DANA HOWARD MAKE A VERY POWERFUL
ARGUMENT THAT ALSO INDICATES
PEOPLE WITH MILD TO MODERATE AND
EVEN SEVERE INTELLECTUAL
DISABILITY, THERE ARE STILL
STRONG REASONS TO RESPECT
PEOPLE'S WILL, AND NOT ENTIRELY
REDUCIBLE TO RESPECTING THEIR
AUTONOMY IN A SENSE OF WHOLE
RATIONAL AGENCY.
SO I THINK WE HAVE HERE SOME
REASONS THAT SUPPORT A
REQUIREMENT TO SEEK ASCENT IN
ADDITION SUCH A REQUIREMENT IS
SUPPORTED BY WORRIES ABOUT
TRUSTEES OR RESEARCHERS
MISUNDERSTANDING AND A CHECK ON
EXPLOITATION, SO I THINK WE HAVE
MANY, MANY REASONS TO CARE ABOUT
GETTING ASCENT AND IN TTION
ABSENCE WE SHOULD NOT ENROLL A
PARTICIPANT.
SO HERE THEN ARE MY ANSWERS TO
THE QUESTIONS THAT WERE PROPOSED
BY BETH AND DAVE, IS IT
ACCEPTABLE TO APPEAL TO ALTRUISM
IN RESEARCH PARTICIPANTS?
MY ANSWER IS YES, INSOFAR AS IT
CONFORMS TO THEIR STEADY VALUES
AND AIMS.
DOES IT DEPEND ON THE CONSENT
AND A ASCENT, I THINK IT CAN
CONTRIBUTE TO ALTRUISM EVEN WHEN
THEY CANNOT CONSENT.
A TRUSTEE'S CONSENT AND THE
PERSON IN QUESTIONS ASCENT CAN
SUFFICE, BUT ASCENT FOR THE
RIGHT REASONS, LET'S SAY THE
ALTRUISTIC OR NONSELF-INTERESTED
REASONS THAT CONTRIBUTE TO
MAKING IT SERVE THE PERSON'S
WELL BEING OR AGENCY GOALS,
MAKES THE GREATEST CONTRIBUTION
TO WELL BEING AND SUCCESS OF
NONSELF-INTERESTED GOALS.
SO WE SHOULD TRY TO GET ASCENT
FOR THE RIGHT REASONS.
BUT NONETHELESS, I THINK AGAIN
ABOUT SAMANTHA'S MISCONCEIVED
ASCENT, EVEN CONSENT THAT IS
PARTLY BASED ON THE
MISCONCEPTION THAT IS IMPORTANT
AND IT DOESN'T--THE FACT THAT
THERE IS SUCH A MISCONCEPTION
DOESN'T ENTIRELY HAVE TO STAND
IN THE WAY OF THINKING THAT
PARTICIPATION CAN CONTRIBUTE TO
THEIR WELL BEING AND
NONSELF-INTERESTED AGENCY'S
SUCCESS.
DESCENT REASONS WE HAVE MANY
REASONS TO RESPECT.
IS RESEARCH ACCEPTABLE AND MORE
ALTRUISTIC IN INDIVIDUALS, YES
TO SOME EXTENT.
ARE THEY FOCUSING ON CASES WHERE
ALTRUISTIC INTERESTS OF A PERSON
MAY HELP TIP THE BALANCE AT
LEAST, THEY WILL MAKE MORE
THINGS PERMISSIBLE THAN WOULD BE
PERMISSIBLE IF WE FOCUSED ON
NARROW HEALTH RELATED WELL
BEING.
DOES IT MATTER WHETHER A
PERSON'S ALTRUISM IS ASSOCIATED
WITH A MEDICAL CONDITION OR NOT,
I PROPOSE THAT WHAT MATTERS IS
THAT ALTRUISM IS A STEADY PART
OF THEIR VALUES AND AIMS AND NOT
A PRODUCT OF FLEETING DESIRES OR
SOCIAL PRESSURE.
SO, IF A PERSON WITH WILLIAMS
SYNDROME HAS SUCH A STEADY
ALTRUISTIC DISPOSITION, THEN
THAT IS PERFECTLY ADEQUATE, I
THINK FOR ESTABLISHING THAT
THEIR ALTRUISM CAN BE A BASIS,
NOT THE ONLY BASIS ON WHICH TO
THINK THAT PARTICIPATION MAY BE
IN THEIR INTERESTS BROADLY
CONCEIVED.
HOWEVER, IF A MEDICAL CONDITION
MAKES US MORE VULNERABLE TO
SIMPLY HAVING FLEETING DESIRES
FOR EXAMPLE, TO PLEASE AN
EXPERIMENTER OR TO GIVE INTO
SOCIAL PRESSURE THEN THERE WOULD
BE A PROBLEM.
FINALLY IS IT POSSIBLE TO
EXPLOIT PARTICIPANTS ALTRUISM,
MY ANSWER IS YES, BY
MISREPRESENTING THE BENEFITS
EITHER TO THE TRUSTEES OR TO THE
PARTICIPANTS, ESPECIALLY
MISREPRESENTING THE BENEFITS TO
OTHERS, RIGHT?
AND BY RELYING ON SUCH FLEETING
OR HIGHLY CONTEXT DEPENDENT
MOTIVES SO THOSE ARE THINGS WE
SHOULD TRY TO,A VOID.
THANK YOU.
>>THANKS ALEX THAT WAS GREAT.
I WANT TO UNDERSCORE SOMETHING
YOU SAID WHICH SEEMS TO BE RIGHT
AND INTERESTING WHICH IS THAT
WHEN WE THINK ABOUT PEOPLE WHO
HAVE MILD TO MODERATE COGNITIVE
IMPAIRMENT OR WE THINK ABOUT 5
YEAR-OLDS OR YOUR 3 YEAR-OLD
TWINS, THEN I THINK AT LEAST IN
THE RESEARCH SETTING WE TEND TO
FOCUS ON THOSE CONDITIONS AS
VULNERABILITIES AND WE WANT TO
PROTECT PEOPLE AND MINIMIZE THE
RISKS THEY FACE, OBVIOUSLY ALL
OF THAT'S IMPORTANT BUT I WANT
TO UNDERSCORE THE POINT YOU MADE
SO YOU HAD MORE THOUGHTS ON IT
WHICH IS THAT 1 THING THAT'S
INTERESTING ABOUT THE RESEARCH
CONTEXT IS IT'S ALSO AN UNUSUAL
CONTEXT OR EVEN SAY A 3 YEAR-OLD
OR A 5 YEAR-OLD CAN MAKE
EXTREMELY IMPORTANT
CONTRIBUTIONS, IT'S REALLY HARD
AND THERE'S VERY FEW WAYS IN
WHICH 3 YEAR-OLDS AND/OR 5
YEAR-OLDS CAN DO THINGS THAT ARE
PARTICULARLY VALUABLE AND BEING
IN A RESEARCH STUDY IS REALLY 1
OF THEM.
SO IT'S A CREDIT OF HOW WE GET
THE BALANCE OF LETTING PEOPLE
ENCOURAGE THAT WHILE PROTECTING
THEM.
I JUST WANTED KRA THOUGHTS ON
THAT.
IT'S A REALLY INTERESTING POINT.
>>THANK YOU.
YES, I AGREE AND I ALSO WANT TO
EMPHASIZE THE POINT THAT IF
WE'RE TOO CAUTIOUS, IN
PERMITTING PEOPLE TO PARTICIPATE
ON THE BASIS OF ALTRUISM,
ESPECIALLY PEOPLE WITH
INTELLECTUAL DISABILITIES OR
YOUNG CHILDREN, THEN WE'RE ALSO
DEPRIVING THEM OF SOMETHING OF
VALUE, NOT MERELY IN TERMS OF
WELL BEING, BUT WHAT THEY CALL
THE AGENCY CAPABILITIES.
AND SO, IT'S NOT JUST FOR THE
SAKE OF OTHERS THAT WE MIGHT
WANT TO PERMIT THEM TO
PARTICIPATE, BUT ALSO TO SOME
EXTENT FOR THEIR OWN SAKE.
>>GREAT, GREAT.
SO DO YOU THINK THERE'S A
DIFFERENCE ALEX BETWEEN TAKE 2
CASES, 1 CASE IS WHERE AN
INDIVIDUAL HAS AN ALTRUISTIC
MOTIVATION TO DO SOMETHING, I
WANT TO HELP MY BROTHER DO X OR
Y OR I WANT TO HELP OTHER PEOPLE
DO SOMETHING, WHERE IT'S AN
INDEPENDENT GOAL THAT THE
INDIVIDUAL'S COME UP WITH.
SO THAT'S 1 KIND OF CASE WHERE
YOU MIGHT FACILITATE THEIR
ALTRUISM DO YOU THINK THAT'S
FUNDAMENTAL DIFFERENT FROM
RESEARCH IN A CASE WHERE WE COME
TO THEM AND SAY HERE'S A WAY YOU
CAN CONTRIBUTE AND HELP OTHERS
AND IT MAY NOT EVEN BE SOMETHING
THEY'VE THOUGHT OF TOO MUCH
BEFORE REALIZED AS AN
OPPORTUNITY AND I WAS WONDERING
IF THAT DIFFERENCE MAKES A
NORMATIVE DIFFERENCE IN THE WAY
WE,A PROACH THESE CASES?
>>I THINK YOU HAVE TO BE
CAREFUL WHEN YOU COME, WHEN YOU
APPROACH TO PEOPLE THAT YOU
DON'T--ESPECIALLY IF THEY'RE
VULNERABLE IN A VARIETY OF WAYS
THAT YOU DON'T PREY ON THEIR
SUGGEST OOBILITY OR THEIR MERE
DESIRE TO PLEASE.
BUT IF YOU'RE GENUINELY OFFERING
THEM AN OPPORTUNITY TO DO
SOMETHING TO CONTRIBUTE TO
SOMETHING THAT THEY ALREADY CARE
ABOUT IF I HAD NOT YET ALREADY
SEEN THIS PARTICULAR CONTRIBUTE
TO MAKE THE CONTRIBUTION THAT
THEY WERE VALUED, I THINK IT'S
TOTALLY FINE.
>>GREAT.
ONE MORE QUESTION JUST MAYBE IF
YOU WANT TO COMMENT MORE, WE'RE
HAVING A VERY LIVELY DEBATE IN
THE QUESTIONS I WAS GETTING ON
WHETHER OR NOT THE RESPECT FOR
INDIVIDUAL'S ALTRUISM AND THEIR
AGENCY, WHETHER OR NOT THE FACT
THAT SOMEBODY IS ALTRUISTIC AS A
RESULT OF A MEDICAL CONDITION OR
IT'S A SYNDROME OR SYMPTOM OF A
MEDICAL CONDITION, DOES IT
MATTER?
AT THE END YOU WERE SAYING WHAT
REALLY MATTER SYSTEM WHETHER
IT'S SORT OF A STEADY VALUE OF
THE PERSON INDEPENDENT OF HOW
THEY CAME ABOUT HAVING THAT
VALUE.
JUST WANTED TO SEE WHAT YOU
THOUGHT OF THAT?
>>YEAH, THAT'S INDEED WHAT I
THINK, IT MAY SOUND
CONTROVERSIAL BUT THE MERE FACT
THAT IT'S A CONSEQUENCE OF A
MEDICAL CONDITION OR SYNDROME IS
NEITHER HERE NOR THERE FOR ME.
WHAT MATTERS IS THAT IT'S A
STEADY PART OF THEIR CHARACTER
AND OUTLOOK AND WHAT THEY WANT
TO ACHIEVE IN LIFE.
>>GREAT, GREAT.
SO DO YOU THINK WE SHOULD--I
DON'T KNOW, IF IN IS PUTTING YOU
ON THE SPOT A BIT, YOU DON'T
HAVE FULL EXPERIENCE WITH THIS
AS MUCH, BUT AS I MENTIONED AT
THE TOP MY EXPERIENCE AT LEAST
WITH RESEARCH CONSENT FORMS,
RESEARCH CONSENT DISCUSSIONS IS
THERE'S VERY LITTLE DISCUSSED
AND MAYBE BETH HAS THOUGHTS ON
THIS, ON THE EXTENT TO WHICH
PARTICIPATING CAN BE PART OF OUR
PROJECT TO HELP OTHER PEOPLE AND
AS YOU'RE SAYING AT THE END,
OBVIOUSLY WE DON'T WANT TO
EXAGGERATE THAT WE NEED TO BE
ACCURATE AND FACTUAL ABOUT IT
BUT THERE SHOULD BE MORE OF JUST
MAKING THAT EXPLICIT TO PEOPLE
IF THIS IS A VALUABLE REASON YOU
MIGHT NOT CARE ABOUT IT BUT YOU
MIGHT AND IT'S A WAY OF HELPING
OTHER PEOPLE.
>>ARE YOU ASKING ME OR BETH?
>>I WAS ASKING YOU.
>>OH, SO YES, I DO THINK SO, SO
LONG AS IT'S DONE WITH CARE IN A
NONMANIPULATIVE WAY AND ALSO
PLENTY OF EXPERIENCE IN
DESIGNING THE INFORMATION GIVEN
TO PEOPLE TO TRY TO NOT
MANIPULATE THEM ON OTHER GROUNDS
FOR EXAMPLE TO TRY TO GET RID OF
THE THERAPEUTIC MISCONCEPTION, I
THINK SIMILARLY, GREAT CARE HAS
TO BE TAKEN TO NOT JUST GENERATE
WHAT PSYCHOLOGISTS CALL SOCIAL
DESIRABILITY, BUT WEB C
ONNECTED--WE HAVE TO SEE IF
IT'S POTENTIALLY EMPOWERING
PEOPLE, ESPECIALLY PEOPLE WHO
HAVE LESS OPPORTUNITY THAN THE
AVERAGE PERSON TO MAKE THESE
TYPES OF CONTRIBUTIONS TO A
NONSELF-INTERESTED GOALS AND IF
THEY HAVE THESE PREFERENCES,
THEN I THINK IT'S VERY IMPORTANT
THAT WE SEE THIS AS A POTENTIAL
OPPORTUNITY FOR THEM, TO ACQUIRE
A TYPE OF AGENCY THAT MANY OF US
TAKE FOR GRANTED AND THAT THEY
MAY HAVE MORE LIMITED
OPPORTUNITIES FOR.
GREAT.
WELL, I WANT TO THANK EVERYBODY.
ONE FINAL NOTE IS THERE WAS SOME
DISCUSSION WE HAD IN THE SLIDES
WITH BETH OF NIH POLICIES AND
FEDERAL REGULATIONS ON RESEARCH
RISKS PARTICULARLY WITH
INDIVIDUAL WHO IS CAN'T CONSENT.
ANYBODY WHO HAS QUESTIONS ABOUT
THOSE, OBVIOUSLY WE COULDN'T GET
INTO THOSE THAL SESSION, SOME
PEOPLE HAD QUESTIONS, I WILL
ANSWER THOSE BUT IF ANYBODY ELSE
HAS QUESTIONS FEEL FREE TO
E-MAIL ME AND I WILL BE HAPPY TO
CHAT ABOUT THEM AND FINALLY I
WANT TO ECHO AT LEAST 3 OF THE
QUESTIONS WERE JUST STATEMENTS
THAT THIS WAS A REALLY GREAT AND
VERY INTERESTING DISCUSSION.
SO I WANT TO VERY MUCH THANK
BETH AND ALEX FOR THEIR
PARTICIPATION IN THIS.
WE REALLY APPRECIATE IT.
>>THANK YOU VERY MUCH.
>>AND I--I APOLOGIZE I LOST
TRACK OF TIME A BIT, I WANTED TO
HEAR MORE FROM PARTICIPANTS.
SO MY APOLOGIES FOR GOING ON A
BIT.
>>THIS WAS GREAT.
THANKS EVERYBODY AND HOPEFULLY
WE WILL SEE YOU THE FIRST
WEDNESDAY IN OCTOBER, HAVE A
GOOD SUMMER AND TIME UNTIL THEN.
BYE-BYE, EVERYBODY.
>>THANK YOU.