>> GOOD AFTERNOON, THANK YOU FOR
JOINING US FOR TODAY'S OSHRP
SESSION, TITLED CARE: A MODEL
FOR THE INTERNATIONAL
CLASSIFICATION IMRAIGZ OF
CULTURAL HUMILITY INTO HUMAN
SUBJECTS RESEARCH.
WE'RE FORTUNATE TO HAVE AS OUR
GUEST SPEAKER SANA LOU, FROM
CASE WESTERN SCHOOL OF MEDICINE
IN CLEVELAND, OHIO.
DR. LOUE HOLDS SECONDARY DEGREES
IN QUANTITATIVE SCIENCES AS WELL
AS UNIVERSITY SCHOOL OF SOCIAL
WORK.
SHE HAS A LAW DEGREE, Ph.D. IN
EPIDEMIOLOGY, AND A Ph.D. IN
MEDICAL ANTHROPOLOGY, AS WELL AS
SEPARATE MASTERS DEGREES IN
SOCIAL WORK, PUBLIC EDUCATION,
PUBLIC HEALTH, THEOLOGY AND
HISTORY.
DR. LOUE SERVED AS THE INAUGURAL
SCHOOL FOR DEVELOPMENT AND
FACULTY DIVERSITY FROM 2012 TO
2020.
THE GEOGRAF IRK LOCATIONS WHERE
SHE HAS CONDUCTED RESEARCH ARE
QUITE BROAD INCLUDING LAOS,
RUSSIA, ROMANIA,
[INDISCERNIBLE], AND UGANDA.
SHE AS ENGAGED IN AUDUNIONS
ISSUES ON ETHICAL RESEARCH,
PROFESSIONAL DEVELOPMENT AND
DIVERSITY IN CANADA, CHILE,
COLUMBIA, [INDISCERNIBLE],
MEXICO, ROMANIA, RUSSIA, SPAIN,
SWITZERLAND, KATIKASTAN, AND
VIETNAM.
FOR MORE THAN 20 YEARS DR. LOU E
HAS MENTORS GRADUATE STUDENTS
POST DOCTORAL FELLOWS AND
FACULTY.
HER RESEARCH IN BOTH DOMESTIC
AND INTERNATIONAL CONTEXT HAS
FOCUSED ON HIV RISK AND
PREVENTION, SEVERE MENTAL
ILLNESS, FAMILY VIOLENCE AND
RESEARCH ETHICS.
HER CURRENT RESEARCH ADDRESSES
THE INTERPLAY BETWEEN RELIGIOUS,
SOCIETY, BIOETHICS AND THE
INTEGRATION OF HUMILITY IN
CLINICAL CARE AND RESEARCH
SETTINGS AND PAST AND CURRENT
FORMULESS OF NUGENICS.
HE HAS AUTHORED MORE THAN 30
WORKS AND CO-AUTHORED MORE THAN
130 PEER REVIEWED ARTICLES.
TODAY'S PRESENTATION WILL BE
ARCHIVED IN THE PAST EVENTS
SECTION OF THE NIH VIDEOCAST
SITE, A LINK TO THE VIDEOCAST AS
WELL AS THE SLIDES FROM THE
SESSION WILL ALSO BE POSTED ON
THE OHSRP WEBSITE APPROXIMATELY
1-2 WEEKS AFTER THE SESSION.
IN THE PRESENTATIONA AFCHIVE
SECTION, AND TRAINING PAGE,
THROUGHOUT THE SESSION, WE
ENCOURAGE RUERS TO SUBMIT
QUESTIONS BY CLICKING ON THE BOX
BELOW THE VIDEO TIELTSED LIVE
FEEDBACK LINK AND DR. LOUE AND
HAPPY TO RESPOND TO THOSE
QUESTIONS IN REALTIME.
WE ALSO WILL HAVE A Q&A AT THE
END BUT DO GO AHEAD AND FEEL
FREE TO POST YOUR QUESTIONS
DURING THE PRESENTATION.
SO THANK YOU FOR YOINING US
DR. LOUE, PLEASE GO AHEAD AND
GET US STARTED.
>> THANK YOU SO MUCH AND IT'S
WONDERFUL TO BE HERE WITH
EVERYONE AND THANK YOU FOR THE
INVITATION.
THIS IS QUITE AN HONOR.
I'M HOPING THAT MY SCREENS
ADVANCE AS THEY ARE SUPPOSED TO,
IF THEY DON'T, PLEASE LET ME
KNOW AND I WILL SEE WHAT I CAN
DO HERE.
>> LOOKS GOOD.
>> GREAT.
THANK YOU.
WHY UOF --JUST A QUICK REMINDERT
CONTENT COPYRIGHT, COPYRIGHT
APPLIES.
YOU HAVE MY BIO, AND I HAVE NO
RELEVANT PROFESSIONAL PERSONAL
OR FINANCIAL RELATIONSHIPS TO
DISCLOSE, SO JUST A RECAP OF OUR
LEARNING
LEARNING OBJECTIVES, THE FIRST
IS TO DISTINGUISH BETWEEN
CULTURAL COMPETENCE AND CULTURAL
HUMILITY SO WE'RE ALL ON THE
SAME PAGE, EXPLAIN HOW CULTURAL
HUMILITY CAN BE INTEGRATED INTO
HUMAN SUBJEKS RESEARCH AND MY
PREFERENCE IS TO REFER TO HUMAN
PARTICIPANT RESEARCH RATHER THAN
HUMAN SUBJECTS AND AS PART OF
THAT I WILL GO THROUGH A COUPLE
OF EXAMPLES THAT ARE SORT OF A
LOOK BACK AT HOW THINGS MIGHT
HAVE BEEN DIFFERENT IN
PARTICULAR RESEARCH STUDIES IF
CULTURAL HUMILITY HAD BEEN
INTEGRATED AND THEN IDENTIFY
STRATEGIES FOR THE INDIVIDUAL TO
DEVELOP CULTURAL HUMILITY AND TO
APPLY CULTURAL HUMILITY IN THE
RESEARCH CONTEXT.
SO THIS IS GOING TO BE OUR
ROADMAP FOR TODAY, WE WILL TART
WITH CULTURAL COMPETENCE,
CULTURAL HUMILITY, TALK A LITTLE
BIT ABOUT CULTURAL HUMILITY IN
THE CLINICAL CONTEXT, LOOK AT
CARE, THAT THE MODEL THAT I'M
PROPOSING AND THE RESEARCH
CONTEXT FOLLOWED BY A FEW
EXAMPLES AND THEN LOOK AT HOW
CULTURAL HUMILITY CAN BE
INTEGRATED INTO THE ETHICS
REVIEW OF PROPOSED PROTOCOLS.
SO IF WE LOOK AT CULTURAL
COMPETENCE AND HOW IT WAS
ORIGINALLY CONCEIVED AND WHAT IT
ATTEMPTS TO DO FOR US, WE'RE
SUPPOSED TO BE ABLE TO DEVELOP A
KNOWLEDGE BASE ABOUT DIFFERENT
GROUPS THAT ARE--AND THIS
KNOWLEDGE IS EXTENSIVELY BASED
ON IDENTIFIABLE OR IDENTIFIED
CHARACTERISTICS OR QUALITIES OF
INDIVIDUALS IN GROUPS.
THE FACT THAT IT TALKS ABOUT
COMPETENCE SUGGESTS THAT IF WE
ACQUIRE CERTAIN BODIES OF
KNOWLEDGE, WE WILL BE ABLE TO
MONITOR OUR OWN EXPLICIT BIASES
AND BEHAVIORS, AND THAT WE WILL
ACHIEVE SOME LEVEL OF MASTERY.
HOWEVER, WHEN WE ACTUALLY LOOK
AT THE UNDERLYING ASSUMPTIONS OF
CULTURAL COMPETENCE PARTICULARLY
IN MULTICULTURAL SOCIETIES, WE
FIND THAT THE GOALS ARE NOT
REALLY ACHIEVED.
FIRST VERY OFTEN CULTURAL
COMPETENCE ASSUMES THAT AN
INABILITY TO WORK CROSS
CULTURALLY OR TO WORK IN A WAY
THAT IS PRODUCTIVE WITH OTHER
INDIVIDUALS IS THE RESULT OF
CULTURAL INCOMPETENCE IS A LACK
OF KNOWLEDGE AND THAT IF WE JUST
PROVIDE INDIVIDUALS WITH
KNOWLEDGE, THAT THEIR ATTITUDES
AND BEHAVIORS WILL SOMEHOW BE
TRANSFORMED.
IT SAYS IF WE ARE SAYING, WELL,
IF WE GIVE THEM SO MUCH
KNOWLEDGE, THEY ARE EMPTY
VESSELS AND ANYTHING THAT THEY
MAY HAVE THOUGHT BEFORE, WILL
JUST SORT OF FALL OUT OF THIS
VESSEL AND WILL BE REPLACED WITH
THIS NEW KNOWLEDGE.
IT ALSO SUGGESTS THAT MASTERY OF
A CULTURE OF ANY CULTURE IS
POSSIBLE AND I WOULD PROPOSE
THAT MASTERY OF ANY CULTURE IS
IMPOSSIBLE BECAUSE CULTURE IS
NOT STATIC, IT CHANGES.
AND WHEN WE TALK ABOUT
UNDERSTANDING A CULTURE BASED ON
CERTAIN CHARACTERISTICS, WE'RE
ASSUMING THAT THOSE
CHARACTERISTICS ARE REALLY
STATIC OVERTIME.
IT ASSUMES THAT MINORITY AND
MAJORITY GROUPS EVOLVE AND
TRANSFORM AT THE SAME RATES OF
SPEED.
IT ALSO LEADS--BUT THE RESEARCH
HAS SHOWN IS THAT IT ACTUALLY
LEADS TO THE REINFORCE AM OF
STEREOTYPES, SO RATHER THAN
DISSIPATING THEM, IT TENDS TO
REINFORCE THEM AND IF CULTURAL
COMPETENCE ALSO ASSUMES THAT THE
LACK OF CONFIDENCE IS REALLY AN
ISSUE ONLY BETWEEN WHITES,
PEOPLE WHO ARE IDENTIFIED AS
WHITE, AND PEOPLE WHO ARE
IDENTIFIED AS NONWHITE OR
SOMEHOW MINORITIZED AND WE KNOW
THIS IS NOT ACCURATE.
ONE OF THE OTHER MAJOR ISSUES,
WITH THE IDEA OF CULTURAL
COMPETENCE IS THAT IT SUGGESTS
THAT WE FOCUS ON 1 SPECIFIC
CHARACTERISTIC AT A TIME, SO, IF
A PERSON WALKS INTO OUR OFFICE
AS A POTENTIAL RESEARCH
PARTICIPANT, WE FOCUS ON THEM AS
A MALE, AS A FEMALE AS A MEMBER
OF A PARTICULAR ETHNIC OR RACIAL
GROUP RIGHT, BUT NOT AS AN
INTEGRATED WHOLE PERSON.
IT ALSO ASSUMES THAT HOW WE
IDENTIFY AN INDIVIDUAL, HOW WE
PERCEIVE THEM IS HOW THEY
SELF-IDENTIFY.
THAT SELF-IDENTIFICATION AND
IESHES DENTIFICATION BY OTHERS
IS CONGRUENT AND WE KNOW THIS IS
NOT ALWAYS THE CASE.
SO IF WE LOOK AT CULTURAL
HUMILITY, WE SEE THAT IT'S
REALLY QUITE DIFFERENT AND THIS
IS A CONCEPT THAT WAS DEVELOPED
INITIALLY BY [INDISCERNIBLE] IN
THE CONTEXT OF MEDICINE EMPLOY
SO THE BASIC AYOU SUSMGZ -
-ASSUMPTION IS THAT IN
EACH AND EVERY INTERACTION THERE
IS SOMETHING WE DON'T
UNDERSTAND.
ONE OF THE EXAMPLES I VERY OFTEN
USE WITH CLINICAL RESEARCHERS
AND CLINICIANS IS YOU KNOW YOU
WALK BO A ROOM, PARTICULARLY
WITH CLINICIANS, AND THE PATIENT
HAS ASKED FOR AN APPOINTMENT FOR
A PARTICULAR ISSUE AND YOU
ASSUME THAT BASED ON THE MEDICAL
RECORD IS WHAT THE PATIENT SAID
THEY NEEDED THAT YOU HAVE ALL OF
THE INFORMATION THAT YOU NEED,
WHEN IN FACT IT'S NOT TRUE,
RIGHT, IF THE CLINICIAN IS GOING
TO PRESCRIBE A CERTAIN
METRICSICATION, DOES THE PATIENT
HAVE INSURANCE, DOES THE PATIENT
HAVE ACCESS TO THE MEDICATION
OUTSIDE OF INSURANCE, DOES THE
PATIENT HAVE A REFRIGERATOR IN
WHICH TO REFRIGEERATE IT, RIGHT?
SO THERE ARE ALL KINDS OF ISSUES
SURROUNDING WHAT SEEMS TO BE A
VERY SIMPLE ASSUMPTION.
IT ASKS THAT WE FOCUS ON OUR
DEVELOPMENT OF OUR CRITICAL
CONSCIOUSNESS TO CHANGE OUR
ATTITUDE AND THIS REQUIRES IN
TURN THAT WE BE WILLING TO
COMMIT TO LIFE LONG REFLECTION
AND SELF-CRITIQUE.
SO WHAT DID I DO WELL IN THIS
INTERACTION?
WHAT DID I NOT DO WELL?
WHAT ASSUMPTIONS DID I MAKE THAT
I SHOULDN'T HAVE MADE THAT
WERE--THAT MAYBE I DIDN'T
REALIZE I WAS MAKING.
IT REQUIRES ACTIVE ENIMAIJMENT
WITH THE OTHER INDIVIDUAL OR
INDIVIDUALS OR COMMUNITIES AND
IT REQUIRES AN EXERCISE OF
HUMILITY AND BY EXERCISING
HUMILITY WE'RE REALLY HELPING TO
CHANGE THE POWER BALANCE BECAUSE
WE'RE RECOGNIZING THAT THE
PEOPLE WITH WHOM WE'RE
INTERACTING THE COMMUNITIES WITH
WHICH WE'RE INTERACTING ARE THE
HOLDERS OF THE KNOWLEDGE THAT WE
WOULD LIKE AND WITHOUT THEIR
PARTICIPATION, WE CAN'T DO OUR
RESEARCH.
SO CULTURAL HUMILITY RECOGNIZES
THAT CULTURE CHANGES OVER TIME,
THAT IT CHANGES AT DIFFERENT
RATES DEPENDING ON WHETHER IT'S
AT THE INDIVIDUAL LEVEL, THE
FAMILY LEVEL, THE GROUP LEVEL,
THE SOCIETAL LEVEL AND THAT A
SUCCESSFUL OUTCOME REQUIRES
REQUIRES INTERACTION AND BALANCE
BETWEEN INDIVIDUALS, GROUPS AND
THE LARGER SOCIETY.
SO IF WE LOOK AT THE KEY
ELEMENTS, CULTURAL HUMILITY
REQUIRES ACTIVE LISTENING AND
THIS IS LISTENING NOT ONLY TO
THE WORDS THAT SOMEONE IS
SAYING, BUT ALSO ATTENDING TO
BODY LANGUAGE TO FACIAL
EXPRESSIONS, BOTH THEIRS AND OUR
OWN.
COLLABORATION WITH THE OTHER
PERSON, WITH THE PERSPECTIVE
PARTICIPANT, WITH PARTICIPANT
REPRESENTATIVES, WITH COMMUNITY
MEMBERS, CONSIDERATION OF THE
PERSPECTIVES THAT ARE BROUGHT TO
THE TABLE BY OTHER INDIVIDUALS.
FLEXIBILITY OF NEGOTIATION.
I VERY OFTEN SAY, YOU KNOW THERE
CAN BE A SPECTRUM OF POSSIBILITY
AND WHAT WE DECIDE ON MAY NOT BE
OPTIMAL BUT IT MAY FALL WITHIN
THE RANGE OF WHAT IS APPROPRIATE
AND ACCEPTABLE THAT WORKS FOR
EVERYONE WHO IS CONCERNED WITH A
PARTICULAR RESEARCH PROJECT OR
PROTOCOL.
IT REQUIRES THAT WE INTERROGATE
OUR OWN BIASES AND ASSUMPTIONS,
ENGAGE IN SELF-EVALUATION, MAKE
EFFORTS TO EXPAND OUR OWN
SELF-AWARENESS AND AGAIN, THIS
IS A LIFE LONG PROCESS.
SO WHEN WE COMPARE THAT AGAIN TO
CULTURAL COMPETENCE, WE SEE
CULTURAL COMPETENCE ASSUMES A
FINITE AND POINT WHILE CULTURAL
HUMILITY FOCUSES ON PROCESS
RATHER THAN CONTENT.
LEARNING WITHIN THE CONTEXT OF
CULTURAL COMPETENCE VERY OFTEN
TENDS TO BE INFORMATIVE, WHEREAS
CULTURAL HUMILITY IS REALLY
TRANSFORMATIVE, I LIKE TO SAY
THAT IF I AM TRULY ENIMAIJED IN
ACTIVE LISTENING OF ANOTHER
INDIVIDUAL, AND ATTENDING TO
THEM AS A FULL PERSON, THAT
INTERACTION IMPACTS NOT ONLY
THEM, BUT IT CHANGES ME BECAUSE
I LEARN SOMETHING ABOUT MYSELF
AND ABOUT THE OTHER INDIVIDUAL
WHEREAS CULTURAL COMPETENCE MAY
LEAD TO INCREASED STEREOTYPING
THE IDEA BEHIND CULTURAL
HUMILITY IS THAT WE ENTER INTO A
PARTICULAR INTERACTION WITH A
SENSE OF HUMILITY AND NOT WITH
THE IDEA THAT PEOPLE HOLD
CERTAIN CHARACTERISTICS.
NOW IN THE CLINICAL CONTEXT, A
NUMBER OF DIFFERENT MODELS HAVE
BEEN PROPOSED.
THE FIRST THAT I'LL GO THROUGH,
JUST VERY BRIEFLY, THESE MODELS,
IS THE 5 Rs, WHICH IS
REFLECTION, RESPECT, REGARD,
RELEVANCE AND RESILIENCY, QIAN
WHICH TRANSLATES INTO THE
HUMBLENESS IN CHINESE WAS
DEVELOPED BY CLINICIANS
SPECIFICALLY FOR THOSE
INTERACTIONS THAT INVOLVE
INDIVIDUALS WITH A BACKGROUND
WHO CLAIM CHINESE ETHNICITY AND
THE ELEMENTS OF QIAN INCLUDE
SELF-QUESTIONS AND CRITIQUE
WHICH YOU CAN SEE IS ANALOGOUS
TO CULTURAL HUMILITY,
BI-DIRECTIONAL CULTURAL
EMERSION, MUTUAL ACTIVE
LISTENING AND FLEXIBLE
NEGOTIATION.
ORCHA WAS DEVELOPED IN THE WORK
OF CLINICAL SOCIALNESS TO
PRACTICE.
ORCA IS OPENNESS, RESPECT,
CURIOSITY AND ACCOUNTABILITY.
SO THE CARE MODEL ASSUMES THAT
WE CAN EPITHELIAL GREAT CULTURAL
HUMILITY INTO THE RESEARCH
ENDEAVOR, AND THIS INCLUDES 4
ELEMENTS THAT MAKE UP CARE,
CURIOSITY, ATTENTIVENESS,
RESPECT AND RESPONSIVENESS AND
EMBODIMENT.
SO IF WE THINK OF CURIOSITY,
THIS IS SOMETHING THAT'S REALLY
INTEGRAL TO SCIENCE, RIGHT?
WE--WE WONDER WHY THINGS HAPPEN,
WE ARE CONSTANTLY QUESTIONING,
WE ARE TESTING HYPOTHESIS TO SEE
WHETHER THEY HOLD UP, WHETHER
THEY DON'T HOLD UP.
WE RECOGNIZE THAT NO MATTER HOW
MUCH WE KNOW, SOMETHING REMAINS
UNKNOWN AND WE ARE ABLE,
HOPEFULLY TO ACKNOWLEDGE
AMBIGUITY AND NUANCE SO WE BRING
THIS CURIOSITY TO RESEARCH AS A
PART OF THE SCIENTIFIC ENDEAVOR.
ATTENDIVENESS HAS BEEN DEFINED
AS THE STATE OF BEING ARK WAKE,
ALERT AND ACTIVELY PAYING
ATTENTION TO STIMULUS.
SO AGAIN, THIS GOES TO ACTIVE
LISTENING.
THE QUALITY OF LISTENING OR
WATCHING CAREFULLY, AND WITH
INTEREST.
SIMONE WALE WHO IS A FRENCH
PHILOSOPHER SAID THAT INTENTION
IS THE RAREST AND PUREST FORM OF
GENEROSITY BECAUSE YOU'RE REALLY
DEVOTING YOUR ENTIRE ATTENTION
TO THE PERSON AND YOUR
INTERACTION WITH THE PERSON OR
THE COMMUNITY OR PERSONS, AND
THIS SPACE THAT'S CREATED
BETWEEN YOU.
IT REQUIRES THAT WE FOCUS ON
MULTIPLE DIMENSIONS,
SIMULTANEOUSLY BUT ON THE WHOLE
AT THE SAME TIME.
AND AGAIN, THE ACTIVE LISTENING
IS THROUGH BOTH VERBAL AND
NONVERBAL BEHAVIORS.
THE QUALITY OF RESPECT, I
BELIEVE COMES FROM
BOOBER'S--BUBER IN I-THOU, AND
HE SAID I-IT IS WHEN WE ADDRESS
AN INDIVIDUAL AS IF THEY ARE AN
OBJECT WHEREAS WHEN WE ADDRESS
THEM AS I-THOU, WE ENIMAIJ WITH
THEM AS EQUALS.
AND THIS IS WHY I PREFER TO
REFER TO RESEARCH PARTICIPANTS
AS OPPOSE TO RESEARCH
SUBRECYCLINGS BECAUSE A SUBJECT
TO ME IMPLIES THAT IT'S SOMEONE
WHO IS BEING ACTED UPON RATHER
THAN PARTICIPATING WITH.
BUBER SAID UNLIKE THE RELEVANT
EXPERIENCE, THE I-YOU IS
MEDIATED, NOTHING CONCEPTUALLY
INTERVENES BETWEEN THE I AND U,
NO PRIOR KNOWLEDGE, NO IMAGINE
AND MEMORY ITSELF IS CHANGED AS
IT PLUNGES FROM
PARTICULARULARRITY TO WHOLENESS,
NO PURPOSE INTERVENES BETWEEN I
AND YOU.
NO GREED AND NO ANTICIPATION AND
LONGING ITSELF IS CHANGED AS IT
PLUNGES FROM THE DREAM INTO
APPEARANCE.
EVERY MEANS IS AN OBSTACLE, ONLY
WHERE ALL MEANS HAVE
DISINTEGRATED TRUE ENCOUNTER
OCCURS.
NOW, HERMAN CONE THE PHILOSOPHER
EMBELLISHED THIS IDEA AND HE
SAID THAT WHEN WE ACTUALLY
ENGAGE WITH THE OTHER, IT'S NOT
AS [INDISCERNIBLE] WHICH MEANS A
MAN NEXT TO ME, BUT AS A
[INDISCERNIBLE] WHICH MEANS A
MAN WITH ME.
AND SHE SUGGEST THAD IT IS AN
ETHICAL ACTION WHICH TURNS THE
OTHER MAN INTO THOU, THE
[INDISCERNIBLE], THE EFFECTIVE
ACTION FOR ELIMINATING HIS
SUFFERING.
IN THIS CORRELATION, MAN
CONSTITUTES THE OTHER I-THOU,
BUT AT THE SAME TIME
CONCONSTITUTES HIMSELF AS THOU
FOR THE OTHER.
THE COMPASSION IS NOT A
REFLEXIVE FEELING OF A
CONSITUTED EKING O WHO BY MEANS
OF REDUCTION OF THE OTHER 2
HIMSELF RETURNS TO HIMSELF BUT
IT IS ETHICAL ACTION WHILE
TAKING UP THE SUFFERING OTHER AS
[INDISCERNIBLE] CONSTITUTES HEMS
AT THE SAME TIME IN CORRELATION.
SO AGAIN IT'S LISTENING TO
UNDERSTAND THE OTHER, TO ENGAGE
WITH THE OTHER RATHER THAN
WAITING, THINKING ABOUT HOW TO
RESPOND WITHOUT ACTUALLY
LISTENING.
RESPONSIVENESS IS GROUNDED IN
ONGOING SHIFTING CONFLUENCE AND
KNOWLEDGE.
SO AGAIN, IT'S AWARENESS OF
OURSELVES, OF OUR TRIGGERS,
ESSENTIALLY THE BAGGANCE THAT WE
BRING TO EVERY INTERACTION.
IT CHALLENGES US TO RESPOND IN
SITUATIONS RATHER THAN REACTING
REFLEXIVELY AND IT REQUIRES THAT
WE BE ATTUNED TO OURSELVES, TO
THE OTHER AND TO AGAIN, THE
SPACE THAT'S CREATED BETWEEN US.
EMBODIMENT AGAIN REFERS TO
ATTUNEMENT.
AND IT'S INHERENTLY RELATIONAL
BECAUSE IT INVOLVES THE
RELATIONSHIPS BETWEEN PERSONS
AND BETWEEN THE PERSONS AND
THEIR ENVIRONMENTS.
WE KNOW FROM RESEARCH THAT OUR
NEURAL SYSTEMS REACT AND
RECREATE WHAT OTHERS DO AND
FEEL.
SO WE BECOME MIRRORS FOR THE
OTHERS AND THE OTHER BECOMES A
MIRROR FOR US, AND IT REQUIRES
AN INTUITIVE UNDERSTANDING OF
OTHERS.
IT REQUIRES CLOSE ATTENTION TO
OUR OWN BODIES AND IN INDIVIDUAL
ASSESSMENT.
SO IF WHAT I AM DOING CONGRUENT
WITH WHAT I'M FEELING AND IF I'M
NOT, WHERE--WHERE IS THE LACK OF
CONGRUENCE, WHAT IS HAPPENING
HERE.
AND WHAT RESEARCH HAS FOUND IS
THAT WHERE THE FEELING AND
BEHAVIORS ARE CONGRUENT, AND
THERE'S AN UNDERSTANDING OF THAT
CONGREEN CELLS ENSEL,
INDIVIDUALS TEND TO HAVE HIGHER
LEVELS OF EMPATHY WITH OTHER
INDIVIDUALS.
THERE HAVE BEEN A NUMBER OF
DIFFERENT PRACTICES AND
INTERVENTIONS THAT HAVE BEEN
PROPOSED TO HELP INDIVIDUALS
DEVELOP THIS SENSE OF
EMBODIMENT, 1 IS PUPPETRY
PEDAGOAJY WHERE THEY WILL
ATTEMPT TO HAVE A PUPPET MOVE IN
A OTHER THAN WAY AND UNDERSTAND
THEIR OWN LACK OF CONTROL OVER
THAT SITUATION.
DRAMA AND THEN VIRTUAL REALITY
TRAINING WHICH IS BECOMING MUCH
MORE COMMON.
SO I HAVE A MANTRA I'M BEEN
USING FOR AT LEAST 30 YEARS THAT
HELPS ME TO REMEMBER ABOUT
CULTURAL HUMILITY AND IT'S
SCRIPT, STAY CENTERED, REMAIN IN
BALANCE, AND THE IDEA IS IF I'M
NOT CENTERED IN MYSELF, THEN I
CAN'T ACTIVELY ENGAGE WITH
SOMEONE ELSE.
IF I AM CARING OVER MY FEELINGS,
MY THOUGHTS, SOME DISTRESS OR
HAPPINESS WITH ANOTHER
INTERACTION THAT I HAD
PREVIOUSLY, I AM BRINGING
WHENEVER THAT IS GOOD, BAD OR
INDIFFERENT INTO A SPACE WITH
INTERACTIONS WITH ANOTHER
INDIVIDUAL, ANOTHER COMMUNITY,
ANOTHER GROUP.
SO I'M NOT CENTERED IN ACTIVELY
ENGAGED, ACTIVELY LISTENING WITH
THEM.
I'M NOT COMPARTMENTALIZING.
SO THE IDEA IS TO REALLY AT A
CENTERED AND THIS HELPS ME TO
RESPOND TO SITUATIONS RATHER
THAN REFLEXIVELY REACTING EMPLOY
SO I WOULD LIKE TO TALK A LITTLE
BIT ABOUT A COUPLE OF RESEARCH
STUDIES THAT DON'T DISPLAY
CULTURAL HUMILITY AND SORT OF
HYPOTHESIS WHAT MIGHT HAVE
HAPPENED DIFFERENTLY IF IN FACT
THE RESEARCH TEAM HAD DISPLAYED
CULTURAL HUMILITY.
BEFORE I GO ON TO THE EXAMPLES,
I WOULD LIKE TO ASK PEG IF THERE
ARE ANY QUESTIONS THAT FOLKS
MIGHT LIKE TO HAVE ANSWERED.
>> WE DON'T HAVE ANY QUESTIONS
YET.
>> OKAY, THANK YOU.
>> AS I MENTIONED EARLIER FOR
THOSE THAT MIGHT HAVE JOINED
LATE, WE'RE HAPPY TO TAKE
QUESTIONS THROUGHOUT THE
PRESENTATION, SO FEEL FREE TO
CLICK ON THE LINK BELOW THE
VIDEO WHERE IT SAYS LIVE
FEEDBACK AND SEND YOUR QUESTIONS
ALONG NOW IF YOU WOULD LIKE.
>> GREAT, THANK YOU SO MUCH.
SO THE CAMBODIAN PREEXPOSURE
PROPHYLAXIS TRIAL WAS DESIGNED
TO TEST THE SAFETY AND EFFICACY
OF ANTIRETROVIRAL DRUG
TENOFOFVIV, DISOPROXIL FUMARATE
TO PREVENT HIV.
AND THIS WAS GOING TO BE DONE IN
CAMBODIA AND IT WAS ANYTHING TO
TRY TO ANSWER THE QUESTION OF
WHETHER 1 PILL A DAY WAS SAFE
FOR HIV NEGATIVE PEOPLE AND
WHETHER IT WOULD PREVENT HIV.
IT WAS THE FIRST LARGE SCALE
CLINICAL TRIAL FOR THIS IN
CAMBODIA, IT BEGAN IN 2003.
IT WAS ALSO THE FIRST PREP TRIAL
TO BE CANCELED AS EARLY AS 2004.
NOW IN 2053 OTHER PREP TRIALS
WERE CANCELED FOR OTHER ISSUES,
IN CAMEROON IT WAS LACK OF
PARTICIPANT EDUCATION, IN MALAWI
AND NIGERIA, THERE WERE CONCERNS
REGARDING THE INTEGRITY OF LAB
PROCEDURES AND THE AVAILABILITY
OF THE DRUGOT OPEN MARKET.
BUT IN CAMBODIA, THE TRIAL WAS
CANCELED AS A RESULT OF A
PARTICULAR CONTROVERSY.
SO THE RESEARCH TEAM HAD GONE
THROUGH THEIR IRBs, THEY HAD
HAD THE PROTOCOL REVIEWED BY
NIH, AND THEY HAD ADHERED TO THE
ETHICAL PRINCIPLES IN THE
CONTEXT OF THEIR PROTOCOL, THE
INFORMED CONSENT FORMS AND
THESE, THE RIGHTS THAT WERE
EMBODIED IN THESE DOCUMENTS IN
THE INFORMED CONSENT PROCEDURE,
WERE THE RIGHTS THAT WERE
CONCEIVED OF AS BEING UNIVERSAL.
HOWEVER, THE FOLKS IN CAMBODIA
WHICH INCLUDED THE SEX WORKERS
WHO WERE GOING TO BE
PARTICIPANTS IN THE TRIAL WERE
FOCUSED ON WHAT WERE CALLED POST
COLOWNIAL BIOETHICS, THE IDEA
THAT RATHER THAN HAVING
SOMETHING DONE TOO THEM THEY
SHOULD BE ACTIVE PARTICIPANTS
AND ENGAGE AS EQUALS IN THE
FORMULATION OF THE RESEARCH, THE
INTERPRETATION OF THE RESEARCH,
AND THE QUEPING THE
UNDERSTANDING OF RISKS AND
BENEFITS.
SO THE SEX WORKERS AND VARIOUS
AGENCIES IN CAMBODIA FOCUSED ON
UNBENEFITS BETWEEN THE
RESEARCHERS, COLLABORATORS AND
THE COMMUNITY.
PARTICULARLY FROM THE
PARTICIPANT COMMUNITY
PERSPECTIVE WAS THIS WAS
SOMETHING THAT WAS GOING TO BE
DONE TO THEM RATHER THAN HAVING
ENGAGED WITH THEM FROM THE
BEGINNING.
SO THE TRIAL WAS CONCEIVED OF AS
BINARY.
FOREIGN INVESTIGATORS ACTING
UPON CAMBODIAN SEX WORKERS AND
THE CAMBODIAN COLLABORATORS WERE
LARGELY UNSEEN.
SO THE IMPLICATION FOR THE
COMMUNITIES AND FOR SOME OF THE
CAMBODIAN AGENCIES WAS THAT THE
CAMBODIANS WERE GOING TO BE
EXPLOITED FOR THE BENEFIT OF
NONCAMBODDIANS.
SO THE QUESTION BECOMES, WOULD
CULTURAL HUMILITY MADE A DRVES
IN SO WE DON'T KNOW, THERE ARE
MANY THINGS WE DON'T KNOW ABOUT
THIS PARTICULAR STUDY AND THE
CONTEXT IN WHICH IT OCCURRED.
SO WE DON'T KNOW FOR INSTANCE
WHETHER THE RESEARCHER, THAT THE
PI OR MEMBERS OF THE RESEARCH
TEAM WENT INTO THIS STUDY WITH
SOME UNDERLYING ASSUMPTIONS OR
BIASES ABOUT SEX WORKERS, ABOUT
CAMBODIAN SEX WORKERS IN
PARTICULAR OR ABOUT CAMBODIANS
GENERALLY, AND WHAT THOSE
PRECONCEPTIONS MIGHT HAVE BEEN
AND HOW THEY MIGHT HAVE
INFLUENCED THE DEVELOPMENT OF
THE PROTOCOL.
THE WOMEN'S AIENDA FOR CHANGE
HAD REFUSED TO SIGN THE 2003
ANTIPROSTITUTION PLEDGE THAT HAD
BEEN REQUIRED BY THE U.S.
GOVERNMENT TO RECEIVE FUNDS
UNDER THE PRESIDENT'S EMERGENCY
PLAN FOR AIDS RELIEVE.
AND WE DON'T KNOW TO WHAT EXTENT
THIS MAY HAVE PLAYED A ROLE IN
THE EXCHANGES OR LACK THEREOF
BETWEEN THE INVESTIGATORS AND
THE SEX WORKER COMMUNITY.
WOULD IT HAVE MADE A DIFFERENCE
IF THERE HAD BEEN INCREASED
COLLABORATION AND ENGAGEMENT
FROM THE VERY BEGINNING, EVEN
BEFORE THE PROTOCOL HAD BEEN
DEVELOPED, WITH CAMBODIAN
AGENCIES, WITH CAMBODIAN NG
Os, WITH THE COMMUNITY.
ONE OF THE MAJOR COMPLAINTS THAT
CAME FROM THE CAMBODIAN SEX
WORKERS AND SOME NG Os WAS
THAT THE INVESTIGATOR LACKED AN
UNDERSTANDING OF THE LOCAL
CONTEXT.
SO THERE WAS NO SAFETY NET
FOOTWORK SEX WORKERS, RIGHT?
THEY DON'T HAVE HEALTH
INSURANCE, THEY DON'T ARE LIFE
INSURANCE, AND IF THERE WAS AN
ADVERSE RESPONSE TO THE
ADMINISTRATION OF THIS
PARTICULAR DRUG, AND THEY WERE
NO LONGER ABLE TO WORK BECAUSE
OF SOME RESULTING DISABILITY,
WHETHER IT WAS PERMANENT OR
TEMPORARY, HOW WERE THEY GOING
TO SUPPORT THEIR FAMILIES.
WHERE WAS THE SAFETY NET AND
THEY FELT QUITE VIGOROUSLY THAT
THE INVESTIGATORS SHOULD HAVE
PROVIED A SAFETY NET.
THE HISTORY OF COLONIALISM,
AGAIN, THE SENSE OF BEING ACTED
UPON FOR THE BENEFIT OF OTHERS.
WERE THEY GOING HAVE ACCESS TO
THE DRUG AFTER THE CLOSE OF THE
TRIAL AND FOR HOW LONG WOULD
THEY HAVE ACCESS TO THE DRUG AND
WHAT THE SEX WORKERS WHO ENGAGED
ULTIMATELY, READ THE PROTOCOL
AND WANTED THE STUDY TO BE
DISCONTINUED, FELT THAT IN FACT
THE INVESTIGATORS HAD COME TO
THIS CONTEXT WITH THE
ASSUMPTIONS THAT ALL SEX WORKERS
WERE VICTIMS, THAT THEY WERE ALL
VICTIMS OF HUMAN TRAFFICKING,
AND NEEDED RESCUE WHEN IN FACT
SOME SAID, YOU KNOW WE'RE IN
THIS PROFESSION BY CHOICE
BECAUSE WE'VE LOOKED AT ALL OF
OUR OPTIONS FOR ECONOMIC
SUSTENANCE AND THIS IS WHAT IS
GOING TO WORK THE BEST FOR US
AND OUR FAMILIES.
SO ANOTHER TRIAL INVOLVED THE
UNIVERSITY OF MINNESOTA AND THIS
WAS A DOUBLE BLIND RANDOMIZED
CLINICAL TRIAL TO COMPARE
QUETIAPINE AND OLANZAPINE AND
RISPERIDONE, FOR FIRST EPISODE
SCHIZOPHRENIA AND DAN MARKING
SON WAS A 26 YEAR-OLD MALE WHO
WAS EXPERIENCING HIS FIRST
PSYCHOTIC BREAK, HIS MOTHER WAS
VERY CONCERNED ABOUT HIM, SHE
REFERRED HIM TO THE POLICE WHO
BROUGHT HIM IN, HE WAS
INVOLUNTARILY HOSPITALIZED, THE
COURT APPOINTED A PSYCHOLOGIST
TO PERFORM AN EVALUATION OF
MARKING SON AND THE COURT
APPOINTED PSYCHOLOGIST CONCLUDED
THAT HE WAS SUFFERING FROM A
GROSS IMPAIRMENT OF YMENT AND
BEHAVIOR, CAPACITY TO RECOGNIZE
REALITY AND CAPACITY TO REASON
OR UNDERSTAND.
THE COURT APPOINTED--THE COURT
SAID TO MARKING SON, YOU CAN GO
FOR PSYCHIATRIC CARE AND WILL
NOT BE INVOLUNTARILY
HOSPITALIZE, HOWEVER, IF YOU
DON'T FOLLOW THE DIRECTIVES OF
YOUR PSYCHIATRIST, YOU WILL BE
INVOLUNTARILY INSTITUTIONALIZED.
STEPHEN OLSON WAS A PSYCHIATRIST
WITH THE UNIVERSITY OF MIN MEN
AND HE BECAME MARKING SON'S
PSYCHIATRIST OF RECORD.
HE WAS ALSO THE PRINCIPLE
INVESTIGATOR OF THIS RANDOMIZED
CLINICAL TRIAL.
MARKING SON SIGNED AN INFORMED
CONSENT FORM THAT INDICATED HIS
INFORMED CONSENT TO PARTICIPATE
IN THIS TRIAL WHICH MARKING SON
AS HIS PSYCHIATRIST RECOMMENDED
AND AGAIN REMEMBER THAT MACKING
SON IS ALSO THE PI OF THIS STUDY
AND IS RECEIVING A PORTION OF
HIS SALARY THROUGH THE FUND
THAGOREAN IS BEING CONTRIBUTED
BY THIS STUDY.
SO MARKINGSON WAS TOLD BY THE
COURT THAT HE WOULD BE
INVOLUNTARILY COMMITTED IF HE
FAILED TO FOLLOW HIS
PSYCHIATRIST REGIMEN.
DURING THE COURSE OF
MARKINGSON'S TREATMENT WITH
DR. OLSON AND AS A PARTICIPANT
IN THIS STUDY, HE WAS
TRANSFERRED TO A HALFWAY HOUSE.
HIS MOTHER NOTICED THAT HIS
CONDITION WAS ACTUALLY
DETERIORATING RATHER THAN
IMPROVING AND STAFF IN THE
HALFWAY HOUSE INDICATED AS WELL
THAT HE WAS DETERIORATING, THE
MOTHER CONTACTED THE STUDY TEAM
AND CONTACTED UNIVERSITY
OFFICIALS WHO WERE ESSENTIALLY
NONRESPONSIVE TO HER CONCERNS
AND SAID WHAT DO YOU EXPECT US
TO DO ABOUT THIS?
MARKINGSON COMMITTED SUICIDE IN
2004 BY DECAPITATING HIMSELF IN
HIS BATH TUB.
AN AUTOPSIES FOUND THE ONLY DRUG
IN HIS STUDY WAS THE STUDY DRUG
TO WHICH HE HAD BEEN RANDOMIZED
AND IN A LATER AUDIT BY
MINNESOTA STATE WHICH WAS
CONCLUDED QUITE A NUMBER OF
YEARS AFTER MACKINGSON'S SUICIDE
FOUND DEFICIENCIES IN THE IRB
REVIEW, AND A CLEAR CONFLICT OF
INTEREST ON THE PART OF THE
PSYCHIATRIST.
SO WE CAN ASK FOR INITANCE HOW
MIGHT CULTURAL HUMILITY HAVE
MADE A DIFFERENCE IN SO I WOULD
PROPOSE THAT THE PSYCHIATRIST IN
THIS CASE, STEPHEN OLSON WAS NOT
ACTIVELY LISTENING TO THE
RESEARCH PARTICIPANT, THAT OTHER
MEMBERS OF THE STUDY TEAM WERE
NOT ACTIVELY ENGAGED, THAT THERE
WAS NO CURIOSITY ABOUT HOW THE
PARTICULAR INDIVIDUALS WAS
PROGRESSING OR NOT IN THE COURSE
OF THE STUDY AND THAT RATHER IT
WAS A QUESTION OF WAITING FOR
THE STUDY OUTCOME AND SEEING
WHAT HAPPENED AT THE END.
SO IF WE LOOK AT HOW
INSTITUTIONAL REVIEW BORDS,
ETHICS, REVIEW COMMITTEES, MIGHT
REVIEW FOR CULTURAL HUMILITY IN
THE CONTEXT OF REVIEWING
SCIENTIFIC PROTOCOLS, HOW AND TO
WHAT EXTENT HAS THE RESEARCH
TEAM FAMILIARIZED ITSELF WITH
THE CONTEXT IN WHICH THE STUDY
IS GOING TO OCCUR.
SO THIS GOES TO THE SOCIAL
CONTEXT, THE ECONOMIC CONTEXT,
THE HISTORICAL CONTEXT, SO WE
CAN SEE FOR INSTANCE WITH THE
PREP TRIAL THAT THE
INVESTIGATORS SEEMED NOT TO
UNDERSTAND OR HAVE KNOWLEDGE OF
THE HISTORICAL CONTEXT AND THE
ECONOMIC CONTEXT FOR THE SEX
WORKERS.
IF WE LOOK AT THE MARKINGSON
MARKINGSON'S PARTICIPATION IN
THE RANDOMIZED DRUG TRIAL, IT'S
NOT CLEAR THAT THE INVESTIGATORS
UNDERSTOOD THESE SOCIAL CONTEXT
IN WHICH THE INDIVIDUALS WHO ARE
ENROLLED IN THE STUDY WERE
FUNCTIONING OR NOT.
HOW AND TO WHAT EXTENT DO THE
RESEARCH PROCEDURES FACILITATE
TEAM MEMBERS, BIASES AND VALUES
AND THEIR IMPACT ON THE RESEARCH
PARTICIPANTS.
AND I WOULD SUGGEST HERE THAT IN
BOTH OF THE EXAMPLES I PROVIDED,
THERE WAS NO EXAMINATION EITHER
ON AN INDIVIDUAL BASIS OR ON A
GROUP LEVEL BASIS, OF TEAM
MEMBERS BIASES AND VALUES.
THAT PEOPLE DID NOT QUERY
THEMSELVES OR EACH OTHER AS TO
THEIR ASSUMPTIONS GOING INTO A
STUDY INVOLVING SEX WORKERS, A
STUDY INVOLVING A SOUTHEAST
ASIAN CULTURE, THAT THEY DIDN'T
QUESTION OR EVEN RECOGNIZE
PERHAPS THEIR BIASES WITH
RESPECT TO INDIVIDUALS SUFFERING
FROM A SEVERE MENTAL ILLNESS AND
MAYBE THERE WAS AN ASSUMPTION
THAT THESE WERE INDIVIDUALS TO
BE ACTED UPON.
REVIEWING FOR ATTENTIVENESS,
AGAIN WHAT STEREOTYPES OR
ASSUMPTIONS ABOUT THE STUDY SITE
OR PARTICIPANTS DO RESEARCHERS
BRING.
HOW HAVE THE INDIVIDUALS WHO
WILL BE INTERACTING WITH THE
PARTICIPANTS BEEN TRAINED IN
THEIR IRPT ACTION, HOW HAD THEY
BEEN TRAINED TO ANALYZE DATA,
ARE THEY LOOKING FOR ALTERNATIVE
EXPLANATIONS FOR WHAT THEY'RE
SEEING IN THE DATA, WHETHER IT'S
QUANTITATIVE, QUALITATIVE OR
MIXED METHODOLOGIES.
HOW MIGHT THEIR ASSUMPTIONS
IMPACT THEIR DATA INTERPRETATION
AND ARE THEY ENGAGING
INDIVIDUALS IN THE TARGET
COMMUNITY IN ASSISTING THEM TO
UNDERSTAND BETTER THE OUTCOMES
OF THEIR DATA COLLECTION
REVIEWING FOR RESPECT AND
RESPONSIVENESS, HOW LONG HAS
THIS PARTICULAR RESEARCH TEAM
BEEN ENGAGED WITH THIS
COMMUNITY.
I'M SURE MANY OF US ARE FAMILIAR
WITH THE TERM HELICOPTER
RESEARCH, WHERE RESEARCHERS
THRIE IN, DO RESEARCH TAKE
WHATEVER SAMPLES OR DATA THEYA
HAVE GARNERED AND NEVER SEE THE
COMMUNITY AGAIN AND HAVE NEVER
SEEN THE COMMUNITY BEFORE THAT.
SO WHAT MECHANISMS HAVE BEEN IN
PLACE TO REALLY BUILD A
RELATIONSHIP.
TO REDUCE THE POWER IMBALANCE
BETWEEN THE COMMUNITY AND THE
RESEARCHERS, SO THAT IT'S CLEAR
THAT EACH IS BEING GIVEN AN
OPPORTUNITY TO LEARN FROM THE
OTHER.
ARE THERE RESEARCH PROTECTIONS
AND LEVEL OF PARTICIPANT
REMUNERATION RESPONSIVE TO
PARTICIPANTS CONCERNS, AGAIN
WITHIN THE CONTEXT OF FEDERAL
REGULATIONS AND INTERNATIONAL
GUIDELINES AND THIS AGAIN
REQUIRES AN UNDERSTANDING OF THE
ECONOMIC CONTEXT IN WHICH THE
RESEARCH IS BEING CONDUCTED AND
ARE REPRESENTATIVES OF THE
COMMUNITY BEING ENGAGED FOR
THEIR INPUT.
DO THEY HAVE A SEAT AT THE
TABLE, BOTH IN THE DEVELOPMENT
OF THE PROTOCOL AND THE
ANALYSIS, AND INTERPRETATION OF
THE DATA.
SO REVIEWING FOR EMBODIMENT,
HAVE THE RESEARCHERS CONSIDERED
THE IMPLICATIONS FOR
PARTICIPANTS BECAUSE OF THEIR
CONTACT WITH TEAM MEMBERS, WILL
THERE BE SOCIAL OR POLITICAL
REPERCUSSIONS TO THE
PARTICIPANTS AND I CAN GIVE YOU
AN EXAMPLE FROM MY OWN RESEARCH
WHERE I WAS DOING HIV RELATED
RESEARCH IN LAOS IN THE MID1990S
AND THIS WAS REALLY LOOKING AT
THE HIV PREVALENCE AMONG
PREGNANT WOMEN AND WOMEN WERE
BEING RECRUITED FROM SOME GYN
CLINICS.
THE WOMEN WERE WILLING TO
PARTICIPATE IN THIS STUDY, BUT
THEY WERE VERY CONCERNED THAT
SOMEBODY MIGHT FIND OUT THAT
THEY HAD PARTICIPATED AND THAT
THERE WOULD BE POLITICAL
REPERCUSSIONS, THAT IF THE
GOVERNMENT REGIME CHANGES, THAT
THEY WOULD SUFFER AS A RESULT
BECAUSE ANY CONTACT WITH
FOREIGNERS LED TO REPERCUSSIONS.
SO THEY SIGNED THE CONSEBT FORM
AND WE HAD TO NEGOTIATE AN
AGREEMENT WITH THE MINISTRY OF
HEALTH THAT ALL TAPE RECORDINGS
OF THE INTERVIEWS WHICH
OBVIOUSLY THEN HAD TO BE
TRANSCRIBED INTO ENGLISH, BUT
ALL RECORDINGS WOULD BE TAKEN
OUT OF THE COUNTRY BECAUSE THE
WOMEN WERE CONCERNED IF SOMEONE
RECOGNIZED THEIR VOICE THEY
WOULD SUFFER REPERCUSSIONS UP TO
AND INCLUDING IMPRISONMENT HAVE
THE RESEARCHERS DEVELOPED
ADEQUATE MEASURES TO PROTECT THE
IDENTITY AND AGAIN THIS REQUIRES
MORE THAN A SUPERFICIAL
UNDERSTANDING OF THE POLITICAL
CONTEXT, THE SOCIAL CONTEXT, THE
ECONOMIC CONTEXT, AND HAVE
MEMBERS DESIGNED THE STUDY IN A
WAY THAT IS SENSITIVE TO LOCAL
CUSTOMS RELATING TO PERSONAL
SPACE AND INTERPERSONAL
COMMUNICATION.
A COLLEAGUE OF MINE AND I
PUBLISHED, HAD PUBLISHED A
MANUSCRIPT AT THE END OF 2023,
THAT'S TITLED CARE, CURIOSITY
ATTENTIVENESS, RESPECT AND
RESPONSIVENESS AND EMBODIMENT
MODEL, OPERATIONALIZING CULTURAL
HUMILITY AND CONDUCT OF CLINICAL
WERE, AND THIS WENT INTO HOW WE
DRAW ON BUBER AND CONE FOR OUR
BASIC PRINCIPLES.
I WOULD LIKE TO ACKNOWLEDGE
TIMOTHY NICHOLAS MY CO AUTHOR ON
THAT PAPER AND ANDREA DRAGIN WHO
PRESENTED A SIMILAR PRESENTATION
AT LAST YEAR'S PREMIER
CONFERENCE.
I WOULD LIKE TO THANK YOU AGAIN
FOR THE INVITATION TO PRESENT TO
YOU.
IT'S REALLY QUITE AN HONOR AND I
WOULD BE HAPPY TO TAKE ANY
QUESTIONS THAT YOU MAY HAVE.
OKAY, PLEASE GO AHEAD AND PUT
YOUR QUESTIONS IN THE LIVE
FEEDBACK LINK.
ONE QUESTION I HAVE IS HAVE YOU
HAD EXPERIENCE AND HOW ARE
IRBs SUPPOSED TO DETERMINE IF
THE RESEARCHERS HAVEN'T
ADEQUATELY CONSIDERED THESE
VARIOUS ASPECTS OF CULTURAL
HUMILITY, PRIOR TO THE REVIEW
THEY'RE DOING, WHETHER IT'S DONE
THOROUGHLY ENOUGH, HAVE A LOOKED
AT EVERYTHING, IT'S A BIG
UNDERTAKING TO DO BUT THEN FOR
THE IRB TO ASSESS IT'S BEEN DONE
ADEQUATELY.
HOW SHOULD THAT HAPPEN IN.
>> SO 1 OF THE THINGS I
THINK--THAT'S A GREAT QUESTION:
ONE OF THE THINGS THAT REVIEW
COMMITTEES CAN DO PARTICULARLY
WHEN IT'S A RESEARCHER WHO
CLEARLY DOES NOT HAVE A TRACK
RECORD OF WORKING WITH A
PARTICULAR COMMUNITY, THEY CAN
ENGAGE WHAT COULD BEING CALLED A
CULTURAL EXPERT, SON SM WHO WHO
IS FAMILIAR WITH THAT PARTICULAR
COMMUNITY WHO HAS WORKED IN THE
PARTICULAR COMMUNITY, AND HAS A
RECORD OF ENGAGEMENT WITH THE
COMMUNITY.
SO FOR INSTANCE A RESEARCHER WHO
MAY WANT TO LOOK AT PEOPLE'S
ATTITUDES TOWARDS THEIR
GOVERNMENTS IN THE CONTEXT OF
HUMAN RIGHTS, AND IS ASKING THIS
OF INDIVIDUALS WHO ARE THROUGH A
SURVEY OF INDIVIDUALS WHO ARE
LOCATED IN COUNTRIES THAT HAVE
VERY STRINGENT SURVEILLANCE
SYSTEMS, FOR INSTANCE OVER
SOCIAL MEDIA, IT WOULD BE
IMPORTANT TO ENGAGE SOMEONE WHO
IS QUITE FAMILIAR WITH THAT
POLITICAL SYSTEM, WITH THE KINDS
OF REPERCUSSIONS THAT SOMEONE
MIGHT MIGHT FACE IF THEY WERE TO
ANSWER PARTICULAR KINDS OF
QUESTIONS.
SO COULD THE QUESTIONS BE
REFRAMED.
IS THAT A COUNTRY WHERE IT WOULD
NOT BE ADVISABLE TO DO THIS
PARTICULAR RESEARCH AT THIS
PARTICULAR TIME.
DOESN'T MEAN IT CAN'T BE DONE
FOR ALL TIME BUT AT THIS
PARTICULAR TIME GIVEN A
PARTICULAR ANY OF THAL
ADMINISTRATION.
SO THAT WOULD BE 1 WAY OF
POSSIBLY FOCUSING ON CULTURAL
HUMILITY.
WE SEE FOR INITANCE THAT THE
FEDERAL REGULATIONS REQUIRE FOR
INSTANCE A PRISONER
REPRESENTATIVE FOR PRISON
RESEARCH, RIGHT?
AND THIS AGAIN GOES TO THE--I
THINK IT'S AN EXAMPLE OF HOW
CULTURAL HUMILITY CAN BE
INTEGRATED INTO THE REVIEW
PROCESS, WHERE SOMEONE WHO HAS
WORKED IN THAT CONTEXT, WHO IS
FAMILIAR WITH THAT PARTICULAR
CONTEXT IN A TODAY THAT I DID A
NUMBER OF YEARS AGO, THAT LOOKED
AT THE CO OCCURRENCE OF HIV RISK
AMONG SELF-IDENTIFIED PUERTO
RICAN AND MEXICAN WOMEN WITH
DIAGNOSIS OF SCHIZOPHRENIA,
BIPOLAR DISORDER OR MAJOR
DEPRESSION.
WE HAD A COMMUNITY ADVISORY
BOARD THAT CONSISTED OF--THAT
INCLUDED WHAT WE CALL
PARTICIPANT REPRESENTATIVES.
SO THESE WERE INDIVIDUAL WHO IS
MIGHT HAVE LIKED TO PARTICIPATE
IN THIS STUDY THAT WERE
OTHERWISE ELIGIBLE BUT PERHAPS
THEIR AGE WAS OUTSIDE OF THE AGE
RANGE TAKEN--THEY WE HAD
DELINEATED FOR THE STUDY.
SO THAT COMMUNITY ADVISE REBOARD
INCLUDED FOR INSTANCE, SEX
WORKERS, PARTICIPANT
REPRESENTATIVES, DRUG DEALERS,
POLICE OFFICERS, INDIVIDUALS
FROM SOCIAL SERVICE ENTITIES
THAT WORKED WITH THE COMMUNITIES
FROM WHICH WE WOULD BE
RECRUITING.
SO THE IDEA WAS THAT YOU TRY TO
GET REPRESENTATION FROM, WITH
PEOPLE WHO CAN ADDRESS AT LEAST
SOME OF THE DIMENSIONS OF WHAT
IS HAPPENING IN THIS STUDY
BECAUSE NO 1 CAN ADDRESS
EVERYTHING.
I DON'T KNOW IF THAT HELPS, AND
THEN FOR THE IRB TO LOOK AT THE
COMPOSITION OF THAT COMMUNITY
ADVISORY BOARD.
>> AND REQUIRE SOMETHING LIKE
THAT POTENTIALLY--
>> POTENTIALLY, RIGHT.
>> AND DO YOU USE ADHOC
REVIEWERS THAT ARE A LOST
EXPERIENCE IN THAT AREA AT ALL
IN NEXT ?
>> I CAN'T SPEAK FOR ALL IRBs,
BUT I CAN SAY CASE WESTERN
IRB DOES.
WE HAVE CULTURAL REVIEWERS, WE
HAVE ADHOC MEMBERS THAT WE BRING
IN FOR SPECIFIC PROTOCOLS WHERE
WE FEEL THAT WE DON'T HAVE STAFF
COMPETENCE, SUFFICIENT EXPERTISE
ON THE BOARD AS IT IS
CONSITUTED.
AND DO HAVE YOU ANY PARTICULAR
TOOLS THAT YOU USE TO SORT OF
FRAME THESE QUESTIONS AS PART OF
APPLICATIONS OR THAT IDENTIFY
PARTICULAR PROTOCOLS WHERE THIS
IS GOING TO BE A BIGGER CONCERN
THAN MAYBE OTHERS SO THAT THE
INVESTIGATORS KNOW SORT OF RIGHT
OFF THE BAT THAT THIS IS GOING
TO BE AN EXPECTATION.
>> OUR TEMPLATES DO ASK THAT
INVESTIGATORS CONSIDER ALL RISKS
AND BENEFITS.
AND IT'S CLEAR IN THE
INSTRUCTIONS, IN THE GUIDANCE
THAT WE PROVIDE TO INVESTIGATORS
AT LEAST AT THIS UNIVERSITY THAT
IT'S NOT GOING TO BE ACCEPTABLE
TO SAY WELL, THERE ARE NO RISKS
OR THE RIIVES ARE MINIMAL AND
THEN, SORT OF GO ON FROM THERE
WITHOUT CLARIFYING WHAT THEY
ARE.
AND SO THE RISK--THEIR
EVALUATION OF RISK SHOULD
RESPOND DIRECTLY TO WHAT IS
HAPPENING IN THE PROTOCOL IN THE
CONTEXT IN WHICH THE PROT COLIS
BEING--IS PROPOSED TO BE
CONDUCTED.
ONE OF THE THINGS THAT WE ALSO
DO TO TRY TO MAXIMIZE THE
LIKELIHOOD THAT PARTICIPANTS
WILL UNDERSTAND WHAT IS BEING
ASKED OF THEM IS WE REQUIRE THAT
RESEARCHERS PROVIDE 4-5
QUESTIONS OF EVERY PERSPECTIVE
PARTICIPANT ABOUT THE STUDY.
AND THE PARTICIPANT MUST BE ABLE
TO ANSWER A MINIMUM OF 3 OF THEM
ACCURATELY.
AND IF THEY DON'T, THEY ARE NOT
ADEQUATELY INFORMED TO CONSENT.
AND AGAIN, THAT ALSO HELPS
HOPEFULLY, THE INVESTIGATOR TO
REFLECT ON HOW THEY ARE
EXPLAINING THE PARTICULAR TODAY
TO PARTICIPANTS, PARTICULARLY
WHERE THERE ARE--IT'S NOT SORT
OF A 1-OFF, RIGHT?
WHERE 1 PARTICIPANT DOESN'T
UNDERSTAND, BUT THERE ARE
MULTIPLE PARTICIPANTS WHO ARE
NOT ABLE TO ANSWER THESE
QUESTION ANDS THOSE QUESTIONS
ARE SPECIFICALLY REVIEWED IN THE
CONTEXT OF IRB REVIEW.
NSOUNDS LIKE AN EXCELLENT IDEA.
LET'S SEE HERE, DO YOU EVER GET
PUSH BACK FROM INVESTIGATORS
THAT BASICALLY ARE IMPLYING THAT
THIS IS JUST A WAY TO PROLONG OR
DELAY THEIR APPROVAL TO GET THE
RESEARCH STARTED?
>> ABSOLUTELY.
AND THAT'S A VERY COMMON
CONCERN.
AND I THINK THERE ARE A COUPLE
WAYS WE ADDRESS THAT DEPENDING
ON HOW THE QUESTION IS RAISED
AND THE NATURE OF THE STUDY.
SO, 1 POTENTIAL ANSWER IS TO
SIMPLY SAY, WELL, LOOK WHAT
HAPPENED TO THESE PARTICULAR
STUDIES WHERE IT APPEARS THAT
INDIVIDUALS DIDN'T REALLY
UNDERSTAND THE CONTEXT IN WHICH
THEY WERE CONDUCTING THIS STUDY
SOMETIMES THAT WORKS.
SOMETIMES WHAT WE SAY IS, WELL,
IT'S PROBABLY FASTER FOR YOU TO
DO THIS, THAN TO ARGUE BACK AND
FORTH WITH THE BOARD BECAUSE
WE'RE NOT GOING TO REALLY
APPROVE IT UNTIL WE SEE IN SOME
MOVEMENT HERE AND OUR PRIMARY
JOB, WE'RE NOT TRYING TO
OBSTRUCT YOUR RESEARCH, BUT OUR
PRIMARY JOB IS TO PROTECT THE
PARTICIPANTS.
SO WE NEED TO SEED SOME MOVEMENT
TOWARDS PROVIDING MORE
PROTECTION, MORE UNDERSTANDING
OF HOW THAT PROTECTION CAN BE
PROVIDED.
AND THAT USUALLY WORKS.
>> I'M SURE THERE'S OCCASIONS
WHERE IF SOMEBODY IS VERY NEW TO
THAT AREA OF RESEARCH, WHERE
THEY MIGHT BE SOMEWHAT LOFULT IN
TERMS OF WELL, YOU KNOW WHAT IS
IT YOU WANT ME TO DO?
AND THERE MAY BE AN EDUCATIONAL
COMPONENT PART TO TRY AND
CLEARLY ARTICULATE WHAT IT IS
YOU'RE TALKING ABOUT.
>> ABSOLUTELY.
AND I THINK OUR IRB STAFF IS
WONDERFUL ABOUT THAT BECAUSE
THEY WILL SIT IS DOWN WITH
SOMEONE.
I MEAN IF THEY SEE THAT THERE
ARE THESE KINDS OF ISSUES BEFORE
SENDING IT OUT FOR WHAT IT'S
SUBMITTED, BEFORE SENDING IT OUT
TO REVIEWER OR TO THE FULL
BOARD, THEY WILL SIT WITH THE
INDIVIDUAL AND SAY, YOU KNOW
THESE ARE THE GAPS THAT WE'RE
SEEING, THESE ARE LIKELY GOING
TO BE THE ISSUES, THAT COME UP
WITH OUR REVIEWERS, WITH OUR
FULL BOARD, YOU KNOW WHETHER
IT'S EXPEDITED OR NOT EXPEDITED,
I WOULD SUGGIEST YOU MIGHT WANT
TO THINK ABOUT XYZ, SO IT
BECOMES AN EDUCATIONAL EXCHANGE
AND HOPEFULLY THAT HELPS TO
OFFSET WHAT MIGHT OTHERWISE BE
AN ENORMOUS DELAY.
NDO YOU EVER HAVE SITUATIONS
WHERE YOU HAVE RESEARCHERS THAT
ARE VERY EXPERIENCED AND DO THIS
VERY, VERY WELL AND THEN YOU
HAVE A NEW INVESTIGATOR TO THAT
AREA.
IS THERE USUALLY WILLINGNESS FOR
THAT EXPERIENCED PERSON TO OR
ARE THEY MORE OR LESS CLOSED OFF
IN TERMS OF THIS IS HOW I DO MY
RESEARCH RATHER THAN SHARING, IN
THIS PARTICULAR CULTURE OR
COUNTRY, THESE ARE THE ISSUES
THAT WE FACE ALL THE TIME AND
YOU WOULD BE WELL ADVISED TO
LOOK AT THIS, THIS, AND THIS AND
ARE THEY MORE SILOED?
>> I WOULD SAY THAT MOST WHO
HAVE DEVELOPED THAT EXPERTISE
ARE WILLING TO SHARE.
I THINK THE DIFFICULTIES ARE NOT
SO MUCH WITH JUNIOR
INVESTIGATORS WHO ARE TRYING TO
SORT OF UNDERSTAND THE
PARAMETERS OF WHAT'S EXPECTED,
BUT MAYBE WITH MORE SENIOR
INVESTIGATORS WHO SAY, YOU KNOW
I'VE BEEN DOING IT THIS WAY FOR
30 YEARS, AND I DON'T THINK I
NEED TO CHANGE NOW.
IT'S MINORITY INVESTIGATORS BUT
I THINK WE FIND AT LEAST IN MY
EXPERIENCE THAT THE PUSH BACK
TENDS TO COME FROM FROM SENIOR
INVESTIGATORS AS OPPOSE TO
JUNIOR INVESTIGATORS.
>> AND AGAIN, I THINK POINTING
OUT THE EXAMPLES AS YOU HAVE AS
TO WHAT CAN GO WRONG AND DO YOU
REALLY WANT TO GO DOWN THIS
PATHWAY AND HAVE IT END THIS WAY
WHEN HAVE YOU THIS FABULOUS IDEA
OR YOU'RE VERY EXCITED ABOUT
WHAT YOU'RE GOING TO BE DOING
BUT YOU REALLY HAVEN'T THOUGHT
IT THROUGH.
NEXACTLY.
>> NOT AS A THREAT BUT AS A REAL
CONCERN FOR THEIR SUCCESS.
>> YEAH, YOU WANT PEOPLE TO
SUCCEED WITH THEIR RESEARCH,
RIGHT?
YOU DON'T WANT TO HAVE TO COME
BACK AS AN IRB AND SAY, YOU KNOW
THIS ISN'T WORKING AND WE'RE
GOING TO SHUT YOUR RESEARCH DOWN
BECAUSE THE PARTICIPANTS ARE AT
TOO GREAT OF RISK GIVEN XYZ, AND
THAT HAPPENS UNFORTUNATELY.
NTHIS IS A LITTLE BIT OF A
DIFFERENT TOPIC BUT AS YOU KNOW
IRBs RESPOND TO COMPLAINTS
FROM PARTICIPANTS WE HAVE TO
HAVE A MECHANISM FOR DOING THAT,
DO YOU EVER GET DIRECT
COMPLAINTS FROM PARTICIPANTS
WITH THESE TYPES OF SITUATIONS
WHERE THE CULTURE OF HUMILITY IS
COMPLETELY MISSING ON THE PART
OF INVESTIGATOR?
OR IS IT MORE THE END RESULT,
YOU SEE THAT THE RESEARCH NOTED
THERE WAS A PROBLEM AND YOU CAN
AM TO LEARN THAT WAS THE
PROBLEM.
I'M JUST CURIOUS DO THE
PARTICIPANTS ARE SPEAK UP AND
COMMUNICATE THAT?
>> SO I WOULD SAY I'VE SEEN
COMPLAINTS IF PARTICIPANTS BUT
WE HAVE ALSO GOTTEN COMPLAINTS
PRACTICES OTHER IRBs.
THAT INVESTIGATORS WERE NOT--THE
BEHAVIOR OF INVESTIGATORS WAS
NOT WHAT THEY WOULD HAVE LIKED
EMPLOY AND DO--DO MANY OR MOST
OF THESE GET SOME SORT OF
IN-COUNTRY ETHICS COMMITTEE
REVIEW AS WELL.
NYES.
>> OKAY, SO THAT MIGHT ALSO BE A
WAY WHERE THE LOCAL CONTEXT CAN
BE BETTER APPRECIATED.
THEY WOULD BE THINKING ABOUT
THOSE ISSUES AND HOPEFULLY MORE
OR LESS BUILDING THAT INTO THEIR
REVIEW PROCESS.
>> YES.
>> SO THAT EVEN THOUGH YOUR IRB
MAY NOT BE AN EXPERT IN CULTURAL
ISSUES WITH THE COMMUNITY, THAT
LOCAL ETHICS COMMITTEE SHOULD
HAVE THAT EXPERTISE AND THAT'S
WHERE WE GET THE COMPLAINTS FROM
THE LOCAL IRB.
>> WELL GOOD THAT THEY SHARE
THAT WITH YOU IN THE INTEREST OF
PARTICIPANT SAFETY AND RESPECT.
>> ABSOLUTELY.
ABSOLUTELY.
>> I DON'T THINK WE HAVE ANY
OTHER QUESTIONS, IF ANYTHING
COMES IN, I WILL FORWARD THAT TO
YOU IF THAT'S OKAY?
>> THAT WOULD BE FINE, THANK
YOU.
>> THIS HAS BEEN SUPER, SUPER
INTERESTING AS YOU KNOW WE DO A
WIDE VARIETY OF RESEARCH AND THE
NIH INTRAMURAL RESEARCH PROGRAM
AND CERTAINLY A LOT OF
INTERNATIONAL RESEARCH SO I
THINK THAT'S BEEN A VERY TIMELY
TOPIC AND WE ARE VERY
APPRECIATIVE OF YOU TAKING TIME
TO PRESENT TO US TODAY, SO THANK
YOU SO MUCH.
>> WELL, THANK YOU IT HAS BEEN
QUITE AN HONOR.
THANK YOU.
>> HAVE A WONDERFUL DAY
EVERYBODY.
>> BYE-BYE.
VERSUS STUDYING THE IMMUNE
RESPONSE, TRANSLATABILITY TO
HUMANS AS WELL.
WE'LL DISCUSS IN MORE DETAIL IN
SESSION 4 TOMORROW.
SO I'D LIKE TO THANK EVERYBODY
WHO GAVE WONDERFUL TALKS TODAY
AND FOR VERY ENGAGING PANEL
DISCUSSIONS, VERY MUCH
APPRECIATE EVERYBODY
PARTICIPATING.
FOR THOSE STAYING AT THE HOTEL,
THE BUS WILL BE HERE AT 4:45 BUT
WON'T LEAVE UNTIL 5:00 P.M. TO
TAKE YOU BACK TO THE HOTEL.
THAT'S THE ONLY PLACE THE
SHUTTLE WILL DROP YOU AT.
WE DO HAVE AN OPTIONAL DINNER
THIS EVENING, HAPPY HOUR/DINNER
AT 6:30.
AT PINSTRIPES, IN THE PIKE AND
ROSE NEIGHBORHOOD.
IF YOU'RE ABLE TO JOIN US,
PLEASE DO, AROUND 6:30.
WE WOULD BE HAPPY TO HAVE
FURTHER DISCUSSION WITH
EVERYBODY.
OR REALLY JUST ENJOY BEING WITH
EACH OTHER SOCIALLY.
WITH THAT WE'LL ADJOURN FOR
TODAY AND THEN WE'LL SEE
EVERYBODY TOMORROW.
[END OF PROGRAM]