THANK YOU FOR JOINING US FOR
TRIBAL HEALTH RESEARCH OFFICE
AND CONSIDERATIONS WHEN
CONDUCTING RESEARCH INVOLVING
INDIGENOUS PEOPLES.
OUR SPEAKER IS DR. KA KARINA
WALTERS, A MEMBER OF THE CHOCTAW
NATION OF OKLAHOMA.
IN THIS ROLE AT THRO, SHE WORKS
TO ADVANCE INITIATIVES TO ENSURE
TRIBALLY INFORMED BIOMEDICAL AND
BEHAVIORAL RESEARCH ENHANCES NIH
TRIBAL CONSULTATION AND
ENGAGEMENT EFFORTS, AND
COORDINATE AMERICAN INDIAN AND
RESEARCH-RELATED ACTIVITY ACROSS
NIH AND WITH FEDERAL ENTITIES.
DR. WALTERS HAS MORE THAN 28
YEARS OF AI/AN EXPERIENCE IN
RESEARCH, CONDUCTED SOCIAL,
EPIDEMIOLOGICAL RESEARCH ON
ENVIRONMENTAL, HISTORICAL,
SOCIAL, CULTURAL DETERMINANTS OF
HEALTH AND HEALTH EQUITY, IN
AI/AN COMMUNITIES AS WELL AS
DESIGNED AND INTERVENTIONS.
PRIOR TO NIH WAS A TENURED
PROFESSOR AND KATHERINE HALL
CHAMBERS SCHOLAR UNIVERSITY OF
WASHINGTON SCHOOL OF SOCIAL
WORK, SERVED AS AN ADJUNCT
PROFESSOR IN DEPARTMENT OF
GLOBAL HEALTH AND SCHOOL OF
PUBLIC HEALTH, AND IS FOUNDING
DIRECTOR OF THE UNIVERSITY OF
WASHINGTON INDIGENOUS WELLNESS
RESEARCH INSTITUTE.
FROM 2012 TO 2019 SHE WAS
ASSOCIATE DEAN FOR RESEARCH AT
UW SCHOOL OF SOCIAL WORK, DR.
WALTERS IS THE FIRST AMERICAN
INDIAN FELLOW INDUCTED INTO THE
AMERICAN ACADEMY OF SOCIAL
WELFARE AND SOCIAL WORK.
SHE EARNED A BACHELOR'S DEGREE
FROM UCLA AND MSW AND Ph.D. IN
SOCIAL WELFARE ALSO FROM UCLA.
TODAY'S PRESENTATION WILL BE
ARCHIVED IN THE PAST EVENTS
SECTION OF THE NIH VIDEOCAST
SITE.
A LINK TO THAT VIDEOCAST AS WELL
AS SLIDES FROM THIS SESSION WILL
ALSO BE POSTED ON THE OHSRP
WEBSITE IN THE ARCHIVE SECTION
OF THE EDUCATION AND TRAINING
WEB PAGE.
THROUGHOUT THIS SESSION WE
ENCOURAGE VIEWERS TO SUBMIT
QUESTIONS BY CLICKING ON THE
LIVE FEEDBACK LINK.
DR. WALTERS WILL ADDRESS THESE
IN Q&A AFTER THE PRESENTATION.
THANK YOU FOR JOINING US.
PLEASE GET STARTED.
>> THANKS, I APPRECIATE THAT
INTRODUCTION.
[ PARENTHESES SPEAKING NATIVE
LANGUAGE ].
>> GOOD AFTERNOON, EVERYBODY.
I'M KARINA WALTERS, I INTRODUCED
MYSELF IN CHOCTAW, AN ENROLLED
CITIZEN OF THE CHOCTAW NATION OF
OKLAHOMA, I JUST PAID MY
RESPECTS TO THE PISCATAWAY CONOY
PEOPLES OF THIS LAND, THAT WE'RE
ON AT THE NATIONAL INSTITUTES OF
HEALTH.
AND I'M EXCITED TO SHARE WITH
YOU SOME WORK THAT I'VE BEEN
DOING IN THE PAST BUT ALSO IN MY
ROLE AS DIRECTOR OF THE TRIBAL
HEALTH RESEARCH OFFICE HERE AT
THE NIH.
I'M GOING TO SHARE MY SCREEN AND
HOPEFULLY THAT WILL BE
SUCCESSFUL.
HERE WE GO.
>> LOOKS GOOD.
>> I'M STARTING WITH THE FIRST
SLIDE TOET IS THE -- THE FIRST
SLIDE THINKING ABOUT WATER.
WHEN WATER IS -- MOST OF OUR
PLANET IS MADE OF IT.
MOST OF OUR BODIES ARE MADE OF
WATER.
WE'RE LITERALLY BIRTHED FROM OUR
MOTHER'S WATERS.
AND NATIVE COMMUNITIES WE TALK
ABOUT WATER AS LIFE, WATER AS
MEDICINE.
IN PART BECAUSE OF ALL OF THESE
ISSUES AND CONNECTIONS TO WATER.
WHAT DOES WATER NORMALLY DO, IT
GOES UP TO THE HEAVENS TO RETURN
BACK DOWN AGAIN.
SO THERE'S THAT CYCLICAL PROCESS
OF THE WATER GOING TO THE
HEAVENS AND COMING BACK DOWN.
AND SO I'D LIKE YOU TO THINK AS
I TALK ABOUT KIND OF SOME OF THE
STRUGGLES WE'VE HAD WITH
INDIGENOUS HEALTH AND HEALTH
DISPARITIES AND INEQUITIES AND
SOLUTIONS WE'RE SEEKING.
I WANT YOU TO THINK ABOUT WATER
BECAUSE FROM A NATIVE
PERSPECTIVE IF I TAKE A SIP OF
WATER TODAY, AND THIS COMES FROM
DR. RASCO WHO SHARED THIS STORY
AND IT STUCK WITH ME.
IF YOU TAKE A SIP OF THAT WATER,
YOU'RE ACTUALLY -- YOUR LIPS ARE
TOUCHING THE SAME WATER YOUR
ANCESTORS' LIPS TOUCHED, IN THAT
MOMENT YOU AND THEY ARE
CONNECTING.
AND SO JUST AS WE ARE CONNECTED
TO OUR ANCESTORS THROUGH WATER,
SO TOO ARE OUR BODIES AND OUR
EXPERIENCES CONNECTED TO WHAT
OUR ANCESTORS HAVE GONE THROUGH.
I WANT US TO THINK ABOUT THAT
TODAY, THAT THAT
INTERCONNECTEDNESS ACROSS SPACE
AND TIME AND HOW THAT PLAYS A
ROLE FOR INDIGENOUS HEALTH AND
BACKGROUND AND CONTEXT FOR
UNDERSTANDING HEALTH.
THE OTHER ISSUE I WANT YOU TO
THINK ABOUT IS, YOU KNOW, WE'RE
NOT LIVING THE HEALTH REALITY
THAT WAS DREAMED FOR US BY OUR
ANCESTORS RIGHT NOW.
I'M GOING TO TALK MORE ABOUT
THAT IN A MINUTE.
I DON'T WANT US TO GET INTO A
NEGATIVE HEADSET ABOUT THAT.
I'D RATHER YOU THINK ABOUT OUR
HEALTH IN TERMS OF POWER, LOVE,
AND VISION.
AND FOR EXAMPLE, IN THIS MOMENT
IF I TAKE CARE OF MY HEALTH AND
I TAKE ACTION FOR MY HEALTH, I'M
NOT ONLY IMPACTING MYSELF OR MY
FAMILY OR EVEN MY COMMUNITY, I'M
HAVING OPPORTUNITY TO TAKE
CORRECTIVE ACTION FOR THE NEXT
SEVEN GENERATIONS, THAT THAT
ACTION HAS THAT KIND OF RIPPLE
EFFECT IN THE HERE AND NOW.
IF I TAKE ACTION RIGHT NOW, FOR
MY HEALTH, I ALSO HAVE AN
OPPORTUNITY TO CORRECT HEALTH
ISSUES I MIGHT STILL BE
EMBODYING THAT CAME THROUGH FROM
MY ANCESTORS AND GENERATIONS
BEFORE.
SO, WHEN I TALK ABOUT HEALTH
DISAPPEAR AND HEALTH INEQUITIES
AND SOME STRUGGLES WE'RE HAVING,
I'M ACTUALLY NOT TALKING ABOUT A
PLACE OF DISEMPOWERMENT, I'M
TALKING ABOUT A PLACE OF POWER.
IF YOU TAKE ACTION NOW YOU CAN
IMPACT YOURSELF AND SEVEN
GENERATIONS FORWARD, SEVEN
GENERATIONS BEHIND, AND THAT IS
SOMETHING I WANT US TO THINK
ABOUT TOO.
IT'S VISION BECAUSE, YOU KNOW,
THE CHOCTAW NATION OF OKLAHOMA,
THE SURVIVORS OF THE FIRST TRAIL
OF TEARS, OUR TRIBE WAS THE
FIRST TO BE REMOVED ON THE TRAIL
OF TEARS.
MY ANCESTORS WALKED THAT TRAIL
WITH A VISION FOR OUR HEALTH AND
WELL-BEING AND WE HAVE A
RESPONSIBILITY TO CONNECT BACK
IN THE HERE AND NOW.
THEY WALKED THAT TRAIL WITH A
VISION OF LOVE FOR US, AND, YOU
KNOW, I WANT US TO THINK ABOUT,
AGAIN, WHEN WE TALK ABOUT HEALTH
INEQUITIES AND ISSUES THAT WE'RE
DEALING WITH IN INDIAN COUNTRY
THAT WE NEED TO BE THINKING
ABOUT THE INCREDIBLE POWER AND
OPPORTUNITY WE HAVE.
WE HAVE THE OPPORTUNITY TO ALSO
CONNECT TO THE VISION THAT OUR
ANCESTORS CARRIED FOR US, MOVING
THAT VISION FORWARD BUT WE ALSO
HAVE A PROFOUND SENSE OF
ANCESTRAL LOVE STILL IMPACTS THE
WORK WE'RE DO IN THE HERE AND
NOW.
I WANTS TO KEEP THAT FORWARD AND
MORE FLUID THINKING AND
FORETHOUGHT, IN THE FOREGROUND
AS I TALK ABOUT ISSUES IN INDIAN
COUNTRY.
LET'S TALK ABOUT TRIBAL HEALTH
RESEARCH OFFICE.
LET ME SEE.
THERE WE GO.
WE'RE ONE OF THE 16 OFFICES IN
THE OFFICE OF THE DIRECTOR, AND
DIVISION OF PROGRAM
COORDINATION, PLANNING AND
STRATEGIC INITIATIVES AT THE
NIH.
WE'RE LITERALLY SYNERGISTIC HUB
FOR ALL AMERICAN INDIAN AND
ALASKA NATIVE ACTIVITIES.
WE LEAD, CONSULT, COORDINATE AND
COLLABORATE NOT ONLY WITH NIH
INSTITUTES AND CENTERS AND
OFFICES, BUT WE'RE A
FORWARD-FACING OFFICE WORKING
DIRECTLY WITH TRIBAL HEALTH,
TRIBAL COMMUNITIES, THE GOAL TO
BUILD AND GENERATE NATIVE
SCIENCE TO BUILD HEALTHY
COMMUNITIES, ULTIMATE GOAL TO
GROW INDIGENOUS HEALTH AND
HEALTH EQUITY THROUGH CULTURALLY
CREDIBLE AND MEANINGFUL
INDIGENOUS-DRIVEN SCIENCE.
IT IS OUR THEME FOR THE LAST
YEAR, IT'S ABOUT INDIGENOUS
KNOWLEDGES POWERING SCIENCE.
YOU'LL SEE A LITTLE OF THAT
TODAY.
WE'VE ALSO DEVELOPED VALUES OUT
OF THE TRIBAL HEALTH RESEARCH
OFFICE THAT CENTERS THE WORK WE
DO.
AND IT'S WITH AN ACRONYM CDER.
I'M NEW TO THE FEDERAL
GOVERNMENT, CDER FOR MANY TRIBAL
NATIONS IS A SACRED MEDICINE,
CEDAR IS USED TO PURIFY OR
CLEANSE OR DRAW IN ANCESTORS,
FOR MANY TRIBES IT HAS DIFFERENT
CULTURALLY SPECIFIC MEANINGS.
FOR US IT WAS A GREAT
REPRESENTATION OF SOME OF THE
VALUES AND PRINCIPLES WE WANT TO
UPOLD OUT OF OUR OFFICE.
FIRST IS CREATIVITY, MOVING
BEYOND APPROACH WHERE IS WE
CENTER ON INDIGENOUS METHODS,
SCIENCE DRIVE SUSTAINABLE
POPULATION HEALTH CHANGE, AS HAS
TO DO WITH, YOU KNOW,
MAINTAINING HIGH STANDARDS OF
PROFESSIONAL AND ETHICAL
BEHAVIOR.
WE'LL TALK ABOUT SOME OF THAT
TODAY.
AND REMAINING CULTURALLY
RESPONSIVE AND REFLEXIVE.
AND THAT HAS TO DO WITH
RECOGNIZING TRIBAL SOVEREIGNTY
AND SELF-DETERMINATION,
RESPECTING THAT, I'M GOING TO
TALK MORE ABOUT THAT IN TERMS
EVER ETHICAL RESPONSIBILITIES,
AND ACCOUNTABILITY, WE HOLD
OURSELVES FOR FOR TIMELINESS AD
COMMITMENT, CRITICAL TO BUILDING
SOLIDARITY AND STRENGTHENING
PARTNERSHIPS ACROSS THE NIH AND
TOGETHER WITH TRIBAL
COMMUNITIES.
OF COURSE, RESPECT AND
RELATIONAL RESPONSIBILITIES,
YOU'RE GETTING A SENSE FROM MY
INTRODUCTION.
WE RESPECT UNIQUE AND DIVERSE
TALENTS, AND EXPERIENCES OF OUR
TRIBAL COMMUNITIES AND OUR
RESEARCH PARTNERS AND FULFILL
RESPONSIBILITIES WITH
COMPASSION, HUMILITY, DIGNITY,
EQUANIMITY.
THROUGHOUT OUR EFFORTS AT THE
THRO OFFICE, PAST, PRESENT,
FUTURE GENERATIONS ARE HONORED.
WE'RE ATTENTIVE TO ANCESTRAL,
CULTURAL, TRADITIONAL
OBLIGATIONS, WE STRIVE TO BE A
HELPFUL AND GOOD ANCESTOR IN ALL
THAT WE DO.
SO THINKING ACROSS SPACE AND
TIME, EVEN OUR OWN ACTIONS AT
THRO WE'RE OBLIGATED, BOTH PAST,
PRESENT AND FUTURE IN THE WORK
WE DO.
WE SERVE 574 FEDERALLY
RECOGNIZED NATIONS.
229 ARE CURRENTLY IN ALASKA.
THAT'S ABOUT 2.5% OF THE
POPULATION.
WE'RE PROJECTED TO GROW TO
10.1 MILLION BY 2050.
SOME COMMUNITIES HAVE 90% OF THE
POPULATION THAT FIRST LANGUAGE
IS STILL THE TRIBAL LANGUAGE.
AND WE ALSO ENGAGE NATIVE
HAWAIIAN AND OTHER INDIGENOUS
POPULATIONS OF U.S. TERRITORIES
SUCH AS GUAM OR MARSHALL
ISLANDS.
THERE'S ALSO A REASON FOR THAT
IN TERMS OF FEDERAL OBLIGATIONS.
TO UNDERSTAND WHY AMERICAN
INDIANS AND ALASKA NATIVE AND
NATURE HAWAIIANS, WE'RE
MEMBERS -- TRIBAL GOVERNMENT ARE
A UNIQUE MEMBER OF THE FAMILY OF
AMERICAN GOVERNMENT.
THAT MEANS THERE'S UNIQUE
OBLIGATIONS WE HAVE TO AMERICAN
INDIANS AND ALASKA NATIVES.
THRO HAS A MANDATE TO SERVE ALL
574 SOVEREIGN TRIBAL NATIONS,
FEDERALLY RECOGNIZED TRIBES IN
THIS COUNTRY.
HUNDREDS OF TREATIES AND LAWS
AND SUPREME COURT DECISIONS AS
WELL AS CONGRESSIONAL DECISIONS
AND PRESIDENTIAL DECISIONS HAVE
AFFIRMED POWERS OF TRIBAL
SELF-GOVERNMENT AND TRIBAL
SOVEREIGNTY.
SO, PART OF THAT AFFIRMATION OF
TRIBAL SOVEREIGNTY COMES WITH IT
ALSO WHAT CALLED A FEDERAL
INDIAN TRUST RESPONSIBILITY,
LITERALLY A MORAL, LEGAL, AND
ENFORCEABLE FIDUCIARY OBLIGATION
ON THE PART OF THE UNITED STATES
TO PROTECT TRIBAL TREATY RIGHTS,
LANDS, ASSETS, AND RESOURCES,
INCLUDING ECONOMIC, SOCIAL, AND
HEALTH PROGRAMS NECESSARY TO
RAISE STANDARD OF LIVING AND
SOCIAL WELL-BEING.
BASICALLY AMERICAN INDIAN AND
ALASKA NATIVE TRIBES HAVE CEDED
LANDS OR THEY WERE TAKEN NOT
ALWAYS WITH PERMISSION,
RECOGNITION OF OUR SOVEREIGNTY
AND PERPETUITY WITH A MANDATE TO
ENSURE ECONOMIC WELL-BEING AND
SOCIAL AND HEALTH WELL-BEING OF
OUR PEOPLE.
CONGRESS REQUIRES ALSO THAT
FEDERAL AGENCIES CONSULT WITH
ORGANIZATIONS AS THE INFORMAL
REPRESENTATIVES OF NATIVE
HAWAIIAN COMMUNITIES BECAUSE
THEY RECOGNIZE NATIVE HAWAIIANS
AS INDIGENOUS PEOPLE, ALTHOUGH
THEY DON'T HAVE THE SAME LEVEL
OF FEDERAL TRUST RELATIONSHIP
THAT AMERICAN INDIANS AND ALASKA
NATIVES DO BECAUSE OF TRIBAL
MEMBERSHIP AND TREATIES.
BUT I WANT TO REMIND FOLKS WHEN
WE TALK ABOUT TRIBAL SOVEREIGNTY
AND HONORING TRIBAL SOVEREIGNTY,
IT DIDN'T BEGIN WITH THE UNITED
STATES SAYING WE WERE SOVEREIGN.
WE WERE SOVEREIGN PRIOR TO THE
UNITED STATES EXISTING.
IT IS THAT WAFTING THREAD
SECURING THE COMPONENTS THAT
MAKE A SOCIETY, WITHOUT THAT
WAFTING THREAD YOU CANNOT MAKE A
RUG.
WITHOUT THAT WAFTING THREAD, ALL
YOU HAVE ARE UNJOINED ISOLATED
COMPONENTS OF A SOCIETY.
SOVEREIGNTY RUNS THROUGH THE
VERTICAL STRANDS AND SECURES THE
ENTIRE PATTERN.
THAT IS THE FABRIC OF NATIVE
SOCIETY.
SO, I WANT TO GET OUT THAT LEGAL
AND ONLY DEFINED BY THE UNITED
STATES GOVERNMENT VERSION OF
SOVEREIGNTY.
WE WERE ALL SOVEREIGN PRIOR TO
THAT.
WE ALSO HAVE -- THERE'S OVER 324
RESERVATIONS AND TRUST LANDS IN
THE UNITED STATES, WHY AM I
RAISING THAT?
BECAUSE WITH THOSE TRUST LANDS
AND RESERVATIONS COME UNIQUE
OBLIGATIONS AROUND TRIBAL
RESEARCH.
WE CANNOT ENTER INTO RESEARCH
WITH TRIBAL POPULATIONS WITHOUT
TRIBAL SAY SO, THAT INCLUDES
RESEARCH ON THOSE LANDS.
SO THIS IS A VERY IMPORTANT
PIECE TO KNOW.
THE McGERT DECISION IN
OKLAHOMA MADE ALMOST ALL OF
OKLAHOMA AN ENTIRE RESERVATION.
WHAT USED TO BE A CITY, FOR
EXAMPLE, TULSA, WAS CONSIDERED
URBAN SITE IS NOW RESERVATION
TIGHT INCLUDING THREE TRIBES
THAT ARE PART OF TULSA.
IF WE DO RESEARCH THERE IN
TULSA, FOR EXAMPLE, MEANS WE
WOULD HAVE TO WORK WITH SOME
TRIBES THAT THOSE LANDS EXIST
ON.
SO BACK TO THE THING ABOUT
HEALTH INEQUITIES AND ISSUES
DRIVING HEALTH CONCERNS IN
INDIAN COUNTRY TODAY, AS I NOTED
EARLIER WE'RE LIVING A HEALTH
REALITY OUR ANCESTORS DID NOT
DREAM FOR US, SUFFER FROM A
CHRONICALLY UNDERFUNDED AND
INADEQUATE HEALTHCARE SYSTEM.
OUR STRUCTURAL DETERMINANTS OF
HEALTH ARE SOME OF THE POOREST
IN THE COUNTRY.
WE EXPERIENCE SUBSTANDARD AND
OVERCROWDED HOUSING,
DISPROPORTIONATELY WE LIVE IN
FOOD DESERTS, QUITE OFTEN WE
HAVE THE HIGHEST RATES OF FOOD
INSECURITY, 1 OUT OF 4 FAMILY
MEMBERS GOING HUNGRY, 1 OUT OF
3 IN COVID PANDEMIC.
WE LACK ELECTRICITY AND A NUMBER
OF COMMUNITIES ARE EXPOSED
DAMAGING ENVIRONMENTAL HAZARDS
AND TOXINS DUMPED ON OUR LAND.
SO, COMPOUNDING THAT CRISIS, FEW
OF OUR COMMUNITY MEMBERS
ACTUALLY GET TO THIS LEVEL OF
HIGHER EDUCATION.
AND WE END UP UNDERREPRESENTED
IN HEALTH CARE AND RESEARCH WORK
FORCE.
THAT'S A MAJOR ISSUE AS WELL.
THAT'S ONE REASON WE FOCUS ON
RESEARCH WORKFORCE DEVELOPMENT.
SO THESE AND OTHER STRUCTURAL
FACTORS LED TO HIGH MULTIPLE
CHRONIC DISEASE BURDEN IN OUR
COMMUNITIES, SYNDEMICS,
SYNERGISTIC EPIDEMICS, HAPPENING
AT THE SAME TIME LEADING TO
PREMATURE MORTALITY.
WE DON'T JUST HAVE DIABETES.
WE HAVE DIABETES AND HEART
DISEASE.
WE HAVE HEART DISEASE AND
HYPERTENSION AND PTSD.
SO WE'RE STRUGGLING WITH A LOT
OF MULTIPLE CONDITIONS AT THE
SAME TIME THAT REALLY LEADS TO
NOT ONLY HIGHER MORTALITY RATES
BUT IN TIMES OF CRISES LIKE
PANDEMICS, YOU SEE THAT KIND OF
STRUCTURAL INEQUITIES THAT DRIVE
OUR HEALTH PROBLEMS EXACERBATED
IN THOSE SITUATIONS, AND WE END
UP HAVING HIGHER RATES OF DEATH
DURING THOSE DIFFICULT TIMES.
THAT HAS LED TO HAVING THE
LOWEST LIFE EXPECTANCY IN THE
COUNTRY FROM ANY POPULATION.
AND FOR AMERICAN INDIANS IT'S
BEEN -- IT'S THE WORST WE'VE
SEEN SINCE WORLD WAR II.
LIFE EXPECTANCY RIGHT NOW IS AGE
65.
IN FACT, 25% OF OUR POPULATION
DIE BEFORE THE AGE OF 45.
MY MOM IS A GREAT EXAMPLE, DIED
AT AGE 45 FROM HER THIRD RARE
FORM OF CANCER LIKELY DUE TO, TO
EXPOSURE WHEN HER MOM WORKED IN
LET US -- LETTUCE FIELDS.
IN SOME TRIBES LIFE EXPECTANCY
IS 46 YEARS OLD, THAT'S NOT
OKAY.
WE'RE FACING MULTIPLE CRISES,
LITERALLY INVISIBLE IN TERMS OF
PUBLIC HEALTH, QUITE OFTEN,
BECAUSE WE DON'T EVEN GET
ACCURATE DATA IN NATIONAL
DATASETS, QUITE OFTEN WE'RE
OTHERRED INTO ANOTHER CATEGORY
AND SO WE'RE ERASED FROM THE
DATA, OR WE'RE JUST NOT INCLUDED
IN DATA.
AND THAT'S ONE OF THE REASONS
WHY INDIGENOUS DATA SOVEREIGNTY
IS IMPORTANT FOR TRIBES TO
ASSERT RIGHTS AND PROTECTIONS
FOR THEIR TRIBAL COMMUNITIES
AROUND DATA AND HOW DATA IS USED
BUT ALSO TO MAKE SURE WE'RE PART
OF THE HEALTH CONVERSATION AND
HAVING DATA THAT TRIBAL DECISION
MAKERS CAN MAKE ADEQUATE
DECISIONS AND GOOD DECISIONS FOR
THEIR COMMUNITIES MOVING
FORWARD.
SO NOW IT'S OUR OBLIGATION HERE
TO RECONNECT TO THAT POWER OF
VISION AND LOVE I WAS TALKING
ABOUT EARLIER.
AND TO CHANGE THE COURSE THAT
WE'RE ON AND HARNESS OUR
COLLECTIVE INSIGHTS AND BOTH
SCIENTIFIC AND INDIGENOUS
WISDOM, TO ACHIEVE HEALTH AND
HEALTH EQUITY.
WE DO THAT IN PART THROUGH
PRODUCING RESEARCH THAT IS
MEANINGFUL AND CREDIBLE AND
SUSTAINABLE.
SO OUR STORY AT THRO IS ABOUT
HARNESSING A POWER TO HEAL
THROUGH SCIENCE, THROUGH FOUR
MECHANISMS.
I WON'T GO INTO DETAIL BUT
BASICALLY ADVANCING THAT
INDIGENOUS RESEARCH, THEY TALKED
ABOUT IT EARLIER, CREATIVITY,
AND CULTIVATING CAPACITY THAT
WORKFORCE DEVELOPMENT INTERNALLY
AND EXTERNALLY IN TERMS OF
INTERNALLY AT THE NIH AND
INTRAMURALLY.
AND WE HAD A TRIBAL CONSULTATION
TODAY SO WE'RE -- THE MAIN
ORGANIZATION ON BEHALF OF NIH TO
ENSURE TRIBAL CONSULTATION TAKES
PLACE WHEN NEW POLICIES ARE
GOING TO IMPACT INDIAN COUNTRY,
WE'RE REQUIRED BY LAW TO MAKE
SURE WE HAVE TRIBAL INPUT IN
THAT.
AND WE'RE REALLY EXCITED TO BE
PART OF BLAZING NEW PATHS, FOR
STRATEGIC INITIATIVES, POLICIES,
AND COLLABORATIONS.
AND CERTAINLY OUR WORK WITH OSP
AND WITH INTRAMURAL IRB KIND OF
RESONATES WITH SOME OF THOSE
AREAS.
SO I'M GOING TO TURN A LITTLE
BIT TO, YOU KNOW, CONTEXTUALIZE
INDIGENOUS ETHICS AND ISSUES
AROUND RESEARCH ETHICS FOR
INDIAN COUNTRY.
I WANT US TO THINK A LITTLE BIT
ABOUT CONCEPTUAL DIFFERENCES,
FOR MANY NATIVE COMMUNITIES WE
HAVE A SAYING OR PROVERBS, ALL
KINDS OF DIFFERENT WAYS IT MIGHT
COME OUT.
BASIC CONCEPT, I AM THE LAND,
THE LAND IS ME.
THAT'S HOW WE UNDERSTAND IT.
BUT FOR SOME OF OUR, YOU KNOW --
THE KINDS OF COLONIAL EXPERIENCE
WITH COLONIAL PRACTICES OVER THE
YEARS WE ENCOUNTER A WAY OF
THINKING AND VIEWING OF THE
WORLD AND STRUCTURES THAT
SUPPORT THIS THAT WOULD SAY,
WELL, I OWN THE LAND, THE LAND
IS MINE.
SO, YOU COULD SEE RIGHT THERE WE
ALREADY HAVE KIND OF A
CONCEPTUAL DISCONNECT THERE.
BUT THERE'S A PARALLEL PROCESS
IN TERMS OF DATA AND ERASURE
THAT I WAS TALKING ABOUT
EARLIER.
THAT IS, I AM THE DATA, THE DATA
IS ME.
IF WE HAD A PARALLEL PROCESS
BIOLOGICAL DATA OR MATERIAL DATA
OR GENETIC DATA, FOR EXAMPLE,
FOR MANY OF OUR COMMUNITIES WE
SEE THAT AS NOT AS NON-HUMAN,
KIND OF MATERIAL AFTER ITS
EXTRACTED FROM HUMAN BEINGS BUT
RATHER STILL HAS ESSENCE, STILL
CONNECTED TO WHO WE ARE.
IN THAT SENSE I AM THE DATA, THE
DATA IS ME.
THAT RUNS CONTRARY TO QUITE
OFTEN HOW WE PRODUCE SCIENCE IN
SOME CASES WHERE, BUT I OWN THE
DATA, THE DATA IS MINE.
SO, WE HAVE SOME NATURAL TENSION
THERE IS THAT WE TEND TO RUN
INTO WITH INDIAN COUNTRY AND HOW
SOME ASPECTS OF WESTERN SCIENCE
APPROACH IT.
I WANTED TO ACKNOWLEDGE THAT
BECAUSE I DO THINK THERE ARE
SOME TENSIONS AROUND THAT, THAT
NEED TO BE ACKNOWLEDGED.
THE OTHER PIECE I WANT TO
ACKNOWLEDGE IS THAT THERE IS A
LONG HISTORY OF RESEARCH ABUSES
IN NATIVE COMMUNITIES THAT ARE
NOT ONE-OFF EXPERIENCES.
BUT ARE PART OF A LEGACY OF
INSULTS INDIGENOUS COMMUNITIES
ENDURED SINCE CONTACT.
AND SO I JUST WANT TO PUT THAT
CONTEXT OUT THERE, AND THERE'S A
LOT OF GOOD WORK IF YOU'RE
INTERESTED IN READING ABOUT IT
ON SETTLER COLONIAL THEORY, HOW
TO UNDERSTAND INDIGENOUS
POPULATIONS IN RELATION TO
VARIOUS COMMUNITIES THAT CAME
OVER HERE TO EXTRACT LABOR OR
RESOURCES OR LAND.
AND SO TO HELP YOU UNDERSTAND
AND THINK ABOUT IT A LITTLE WHEN
I TALK ABOUT RESEARCH ABUSES
THAT HAPPENED, THEY WERE TIED TO
LONG HISTORY AND UNDERSTANDING
OF SETTLER COLONIALISM, IN ONE
MINUTE OR LESS U.S. SETTLER
COLONIALISMS CONSISTS OF
POLICIES, THESE ARE STRUCTURES,
AND THE PRACTICES THAT
FACILITATE USUALLY NATIVE LAND
DISPOSSESSION, AND ERASURE OF
NATIVE PEOPLE FROM THAT LAND.
YOU CAN KIND OF INCLUDE ERASURE
OF NATIVE IDENTITY.
SO IT'S A STRUCTURE, NOT AN
EVENT.
THIS IS A REALLY IMPORTANT PIECE
BECAUSE THESE STRUCTURES, WE
TALK ABOUT STRUCTURAL
DETERMINANTS OF HEALTH, THESE
KINDS OF STRUCTURES INCLUDE
POLICIES AND INCLUDE VALUES
BEHIND THOSE POLICIES, RIGHT?
AND THEY ARE CREATED TO QUITE
OFTEN DISTORT HISTORICAL
REALITIES, FREE FUTURE
GENERATIONS FROM ACCOUNTABILITY
OR GUILT FROM THE OLD POLICIES
AND RATIONALIZE AND NORMALIZE
CONTINUOUS RIGHTS TO DISPOSSESS
NATIVE PEOPLE OF LAND AND ERASE
THEM FROM THE LAND.
AND IT GIVES OPPORTUNITY TO
REPLACE WITH NEW STORIES AND
NARRATIVES, QUITE OFTEN MYTHS.
A GOOD EXAMPLE, WE JUST HAD
THANKSGIVING.
WE HAVE QUITE OFTEN A MYTH ABOUT
THANKSGIVING AND PEOPLE ANCHOR
THE STORY AROUND SQUANTO IN THE
PLYMOUTH COLONY AND HE GREETED
THE SETTLERS, YOU KNOW, GAVE
THEM CORN, SHOWED THEM HOW TO
PLANT CORN AND HELPED THEM OUT
OF THE FIRST STARVING WINTER.
THAT'S KIND OF TRUE AND THEN
THERE WAS SUPPOSEDLY A
THANKSGIVING AFTER THAT BUT THE
OFFICIAL THANKSGIVING CAME LATER
AND IT WAS ACTUALLY A
THANKSGIVING, ANOTHER HISTORY
DENIED, WHY DO WE HAVE THAT
STORY?
AND NO ONE THINKS TO ASK HOW DID
SQUANTO KNOW ENGLISH?
BECAUSE HE HAD BEEN CAPTURED AS
A SLAVE AND ENSLAVED, AND HE
MADE HIS WAY AND BROUGHT OVER TO
EUROPE TO SPAIN, ACTUALLY, MADE
HIS WAY TO ENGLAND, MADE IT BACK
TO HIS VILLAGE, WHERE PEOPLE HAD
DIED FROM HORRIBLE DISEASE.
SO THERE'S A MUCH MORE NUANCED
STORY THAT QUITE OFTEN GETS
ERASED FROM THAT NARRATIVE.
AND SO THESE ARE STRUCTURES THAT
ARE UPHELD BY POLICIES LIKE
MANIFEST DESTINY, DOCTRINE OF
DISCOVERY.
THIS IS JUST IMPORTANT TO KEEP
IN MIND BECAUSE THEN EVENTS
FOLLOW THESE STRUCTURES, LIKE
THE BOARDING SCHOOL EXPERIENCE
FOR NATIVE KIDS REMOVED AND PUT
INTO BOARDING SCHOOLS AGAINST
THEIR FAMILY OR COMMUNITY'S
WILL.
AND THE ATROCITIES, APOLOGIZED
FOR ON THAT, AGAIN, THOSE KINDS
OF EVENTS ARE USED TO UPHOLD
THESE STRUCTURES.
AND SO LET ME GIVE AN EXAMPLE OF
HOW THAT HAPPENED IN TERMS OF
THESE TRAUMATIC EVENTS RELATED
TO SCIENCE AND RESEARCH AND YOU
CAN UNDERSTAND WHY NATIVE
COMMUNITIES HAVE A LOT OF
DISTRUST.
YOU KNOW, ESPECIALLY FEDERAL
GOVERNMENT-RELATED RESEARCH,
RIGHT?
I'M ONLY GOING TO GIVE ONE
EXAMPLE BUT THERE'S A NUMBER ON
THE SLIDE.
IN THE 1860s, FOR EXAMPLE, THE
ARMY MEDICAL MUSEUM, A SURGEON
WILLIAM HAMMOND ORDER ALL
MEDICAL OFFICERS TO COLLECT
SPECIMENS OF MORBID ANATOMY
WHICH MAY BE REGARDED AS
VALUABLE.
A LOT OF FOLKS RAIDED GRAVES OR
DURING MASSACRES CUT OFF HEADS
OF WOMEN, CHILDREN, AND MEN, AND
SENT THEM TO BE USED FOR
SCIENCE.
AND SMITHSONIAN NATIONAL MUSEUM
OF NATURAL HISTORY ACTUALLY
RECEIVED OVER 2,000 OF THE 4,000
HEADS AMASSED BY THE ARMY
MEDICAL MUSEUM.
WE'VE GOT A REPATRIATION PROCESS
TO GET OUR HISTORICAL -- THOSE
KINDS OF REMAINS BACK TO
COMMUNITIES THROUGH WHAT'S
CALLED THE NATIVE AMERICAN
GRAVES PROTECTION ACT.
BUT THAT'S JUST ONE EXAMPLE
WHERE OUR BODIES WERE USED,
OBVIOUSLY WITHOUT OUR
PERMISSION, AND CERTAINLY WITH
PART OF MASSACRE CAMPAIGN TO GET
MONEY TO BE ABLE TO GET BODY
PARTS IN -- IN EXCHANGE FOR BODY
PARTS, ALL THE WAY TO GENETIC
EXTRACTION, WITHOUT PROPER
PERMISSION, THE HAVASUPAI
INCIDENT DNA SAMPLES FOR A
DIABETES STUDY USED WITHOUT
CONSENT OR KNOWLEDGE OF PEOPLE
PARTICIPATING IN THAT STUDY FOR
STIGMATIZING TOPICS AT THE TIME.
AND IT CAUSED GREAT HARM.
THE KIND OF HARM THAT IT CAUSED
RIPPLE EFFECT INTO OTHER
COMMUNITIES, FOR EXAMPLE NAVAJO
DURING THAT PERIOD ISSUED A
MORATORIUM ON ALL GENETIC
RESEARCH.
THAT REMAINS IN EFFECT TODAY.
SO THESE THINGS DIDN'T HAPPEN
BECAUSE JUST THE HAVASUPAI OR
BECAUSE OF ONE OR TWO STUDIES
BUT A WHOLE HISTORY GOING BACK,
I ONLY WENT AS FAR AS THE
1860s, WHERE OUR BODIES WERE,
YOU KNOW, USED FOR
EXPERIMENTATION IN WAYS THAT
WERE NOT GIVEN WITH PROPER
CONSENT OR PERMISSION.
SO, BUILDING AN INDIGENOUS DATA
SOVEREIGNTY POLICY, WHAT WE'RE
DOING HERE NOW AT THE TRIBAL
HEALTH RESEARCH OFFICE, MEANS WE
HAVE TO UNDERSTAND AND RECOGNIZE
THERE IS A LEGACY OF ABUSE.
I'LL SAVE THIS STORY FOR LATER
IF I HAVE A CHANCE AT THE END IF
WE HAVE TIME.
BUT OUR COMMUNITIES HAVE REALLY
BEEN MAKING SHIFTS AROUND
ACCOUNTABILITY WITH RESPECT TO
DATA SOVEREIGNTY, THEY HAVE BEEN
PRO-ACTIVE SAYING, HEY, WE NEED
TO DO THINGS DIFFERENTLY, IF YOU
DO RESEARCH IT HAS TO BE WITH
US, AND PARTNERING WITH US, WE
NEED TO BE DRIVING THAT
RESEARCH.
IF IT'S ON OUR LANDS OR WITH OUR
PEOPLE, WE HAVE CONTROL OVER
WHAT HAPPENS UNDER THOSE
CONDITIONS.
IT'S NOT UNLIKE DATA SOVEREIGNTY
THAT THE UNITED STATES ALREADY
HAS WITH RESPECT TO DATA
SECURITY OUT OF A SECURITY
PROCESS, THE SAME WITH NATIVE
COMMUNITIES, SO THEY HAVE MOVED
INTO THE DATA SOVEREIGNTY
MOVEMENT AS WELL, AND THEY HAVE
BEEN REALLY ARTICULATING THEIR
SOVEREIGNTY AND STANCE RELATED
TO THAT.
I WANT TO ACKNOWLEDGE THAT THE
NIH HAS BEEN DOING GREAT
RESEARCH, BEFORE STARTING THE
DATA SOVEREIGNTY WORK.
WE DEVELOPED, YOU KNOW, PRIOR TO
MY COMING HERE NIH DEVELOPED
DATA SHARING GUIDANCE SUPPLEMENT
FOR BEST PRACTICES, I REFER YOU
TO THAT.
IT'S REALLY GREAT.
IT TALKS ABOUT PROACTIVELY
ENGAGING TRIBAL COMMUNITIES FOR
PLANNING, FOR DATA MANAGEMENT
AND SHARING, MUTUAL
UNDERSTANDING OF GOALS FOR THAT
DATA MANAGEMENT AND SHARING.
AND ENSURING INDIVIDUAL AND
COLLECTIVE UNDERSTANDING OF THE
PROCESS.
AND SAFEGUARDING AGAINST FUTURE
RISK, WHICH IS REALLY IMPORTANT.
SO WHEN I TALK ABOUT INDIGENOUS
DATA SOVEREIGNTY, I'M TALKING
ABOUT THE RIGHT OF TRIBAL
NATIONS TO EXERCISE SOVEREIGN
AUTHORITY AND GOVERN COLLECTION,
OWNERSHIP OF STEWARDSHIP,
SHARING, REDUCE, DISPOSAL OR
DISPOSITION OF DATA COLLECTED
FROM AND ABOUT TRIBAL
POPULATIONS.
PARTICULARLY WHEN SUCH DATA HAS
POTENTIAL TO IMPACT SOCIAL,
CULTURAL, ECONOMIC, AND GENERAL
WELFARE OF THE TRIBAL NATIONS.
THERE'S BEEN PRINCIPLES
DEVELOPED BY THAT.
THESE HAVE ALSO BEEN TALKED
ABOUT IN OUR DATA SHARING
MANAGEMENT GUIDELINES THAT
ALREADY EXIST AT THE NIH.
I REFER YOU TO THAT DOCUMENT.
THERE'S SOME THINGS UNIQUE
BECAUSE OF TRIBAL SOVEREIGNTY
THAT PEOPLE AREN'T AWARE OF IN
TERMS OF RESEARCH PROTECTIONS.
IF YOU KNOW WE HAVE A COMMON
RULE, BUT TRIBES ARE ACTUALLY
EXEMPT FROM THE COMMON RULE AS
OF 2018.
TRIBAL LAWS AND ORDINANCES TAKE
PRECEDENCE, AND FEDERAL AGENCIES
MUST FOLLOW THOSE LAWS.
AFTER REVIEWING THE NUMBER OF
TRIBAL RESEARCH LAWS AND
ORDINANCES, THEY ARE MUCH MORE
RESTRICTIVE THAN THE COMMON RULE
IN TERMS OF BEING PROTECTIVE OF
THEIR COMMUNITIES.
SO UNDER THOSE CONDITIONS, WE'RE
MANDATED BY LAW TO FOLLOW
RESEARCH LAWS AND ORDINANCES
SINCE THEY TAKE PRECEDENCE.
AND A COUPLE OTHER THINGS TO
KEEP IN MIND, I REFERENCED THIS
EARLIER, FOR THE COMMON RULE AND
OTHER HUMAN SUBJECTS
CONSIDERATIONS QUITE OFTEN
DE-IDENTIFIED ARE NOT CONSIDERED
HUMAN SUBJECTS BUT MOST TRIBAL
LAWS AND TRIBAL PROTOCOLS EXTEND
HUMAN SUBJECT PROTECTIONS TO
DE-IDENTIFIED.
THERE'S SOME FUND MEN SHIFTS IN
THINKING FOR US TO KEEP IN MIND.
I ALSO WANT TO ACKNOWLEDGE THAT
NIH RESPECTS TRIBAL SOVEREIGNTY
IN THE ABSENCE OF WRITTEN TRIBAL
LAWS OR POLICIES.
AND THIS IS AN IMPORTANT CAVEAT
BECAUSE OUR CURRENT GUIDELINES
SAY -- ACKNOWLEDGE THAT.
THAT IS IMPORTANT BECAUSE IF A
TRIBE DOESN'T HAVE THE
INFRASTRUCTURE TO HAVE CREATED
RESEARCH LAWS AND POLICIES, THAT
ARE MORE RESTRICTIVE AT THIS
TIME, BUT WOULD PREFER TO HAVE
THAT IN PLACE, SOME PROTOCOLS IN
PLACE LIKE THAT, WE'RE SAYING
THAT WE THINK ETHICALLY WE
SHOULD BE ALIGNING WITH THE
TRIBES AND WORKING WITH THE
TRIBES TO ADHERE TO WHAT THEY
THINK IS IN THEIR BEST INTEREST
FOR THAT.
EVEN IN THE ABSENCE OF LAWS, WE
DON'T WANT TO PENALIZE TRIBES
THAT DON'T HAVE THOSE RESOURCES
IN PLACE YET.
WE HAVE HAD TEN LISTENING
SESSIONS TO DATE ACROSS THE
COUNTRY WITH TRIBES, TRIBAL
LEADERS, NATIVE RESEARCHERS, NIH
RESEARCHERS ON THE GROUND IN THE
COMMUNITIES.
AND WE HELD AN INDIGENOUS DATA
SOVEREIGNTY SUMMIT MOST RECENTLY
WITH BRINGING TOGETHER ABOUT 27
AMERICAN INDIAN AND ALASKA
NATIVE EXPERTS AROUND DATA
SOVEREIGNTY.
WE HAVE SOME TAKEAWAYS IN
BUILDING POLICY HERE AT THE NIH
AND SOME OF THE TAKEAWAYS I'LL
SHARE BRIEFLY WITH YOU.
OF COURSE THE FIRST IS KIND OF
THE OBVIOUS ONE, WHICH IS ANY
INDIGENOUS DATA SOVEREIGNTY
POLICY WE DEVELOP AT THE NIH
NEEDS TO HONOR TRIBAL
SOVEREIGNTY AND GOVERNANCE.
TRIBES HAVE AUTHORITY.
GOING BACK TO THE RESERVATION
AND TRIBAL LANDS, RIGHT, SO
TRIBES HAVE AUTHORITY OVER DATA
COLLECTED ON TRIBAL LANDS OR IF
THE DATA INFERENCES OR
ATTRIBUTIONS TO TRIBE WILL BE
MADE, IN OTHER WORDS FOR
SECONDARY DATA IF YOU ARE GOING
TO MAKE ATTRIBUTIONS TO A TRIBE
EVEN IF YOU COLLECTED YOUR DATA
IN AN URBAN AREA, YOU WOULD THEN
WANT TO WORK DIRECTLY WITH THAT
TRIBE TO GET THEIR CONSENT AND
HAVE A PROCESS IN PLACE FOR
DOING THAT WORK.
OWNERSHIP OF AND AUTHORITY OVER
DATA RESTS WITH THE TRIBE SO
IDEALLY WE NEED TO DO THAT PRIOR
TO DATA COLLECTION.
IT'S IMPORTANT AND INCUMBENT ON
THE P.I. TO MAKE SURE THEY
CLARIFY IN WRITING WHO OWNS,
CO-OWNS DATA, HOW IT WILL BE
STORED OR CULTURAL PROTECTION
FOR THE COMMUNITY.
WHAT I'M CALLING SACRED KIN,
SAMPLES OF LIVING AND NON-LIVING
OUR RELATIONS, THE THEME THAT
CAME OUT ACROSS COMMUNITIES
INCLUDING BIOLOGICAL
DERIVATIVES.
SECOND ELEMENT WE HAVE TO HONOR
THE SACRED OFFERINGS OF PEOPLE
WHO DECIDE TO GIVE THEIR DATA TO
SCIENCE, SO FLIP SIDE IS WE ALSO
NEED TO ACKNOWLEDGE AND RESPECT
THAT PEOPLE ARE MAKING DECISIONS
TO OFFER THEIR DNA OR GENETIC
MATERIALS OR BIOSAMPLES BECAUSE
THEY WANT TO HELP THE HEALTH OF
THEIR PEOPLE, AND SOME OF THE
TRIBAL LEADERS TALKED ABOUT THAT
AS SIMILAR TO OFFERINGS,
SPIRITUAL OFFERINGS THAT ARE
MADE DURING CEREMONY, THAT
PEOPLE WILL GIVE A FLESH
OFFERING, FOR EXAMPLE, A PIECE
OF FLESH DURING CEREMONIES TO
MAKE SURE THEY ARE GIVING FOR
THE HEALTH OF THE PEOPLE AND
SIMILARLY WE NEED TO RESPECT
THAT INDIVIDUAL CHOICE AND
AUTONOMY IN THAT REGARD AS WELL.
THIRD ELEMENT IS SACRED
KNOWLEDGE RECOGNIZING THAT
CULTURAL PROTOCOLS, OTHER KINDS
OF DATA THAT ARE MORE LIKE
METADATA OR, YOU KNOW, NOT
SPECIFICALLY DATA NECESSARILY
BUT TIED TO DATA, LIKE
INDIGENOUS KNOWLEDGE, CULTURAL
PROTOCOLS, CURRICULA, OTHER
KINDS OF THINGS MAY REQUIRE
TRADITIONAL GUARDIANSHIP
PRACTICES OR SOME KIND OF
COLLECTIVE RESPONSIBILITY AROUND
GUARDIANSHIP OF THAT KNOWLEDGE,
SO NOT ALL THAT IS MEANT TO BE
PUBLIC, PER SE.
SO, WE NEED TO WORK CLOSELY WITH
TRIBAL LEADERS AND COMMUNITIES
TO BE ABLE TO IDENTIFY THAT AND,
YOU KNOW, WHAT CAN BE -- WHAT
NEEDS TO REMAIN WITH THE TRIBE.
SOME OTHER GUIDING PRINCIPLES
INCLUDE, YOU KNOW, IMPORTANCE OF
OF COURSE CONSENT AND BENEFIT,
BUT THEY HAVE ALSO TALKED VERY
MUCH ABOUT COLLECTIVE BENEFIT,
NOT JUST INDIVIDUAL BENEFIT.
DATA PRACTICES SHOULD PRIORITIZE
WELL-BEING AND EMPOWERMENT OF
INDIGENOUS COMMUNITIES,
FOSTERING POSITIVE OUTCOMES,
EQUITABLE PARTNERSHIPS, THAT
DATA PRACTICES SHOULD BE REALLY
OUTLINED WELL BEFORE ANY KIND OF
DATA COLLECTION STARTS.
AND IT'S NOT ENOUGH JUST TO SAY
I'M GOING TO, YOU KNOW, HERE'S
OUR PLAN, THE DATA AND
MANAGEMENT PLAN THAT WE HAVE IN
PLACE, BUT THE TRIBE NEEDS TO
ACTUALLY APPROVE OF THAT BEFORE
DATA IS ACTUALLY COLLECTED.
AND THEN FINALLY TRIBES HAVE THE
RIGHT TO DESIGNATE IRB OF RECORD
OR REVIEW BODY SO, FOR EXAMPLE,
WE HAVE A COMMON RULE -- NOT
COMMON RULE BUT SINGLE IRB RULE
AT NIH, QUITE OFTEN RESEARCH
WITH MULTIPLE COMMUNITIES AND
MULTIPLE STAKEHOLDERS FOR EASE
IT MAKES SENSE TO DO ONE IRB,
AMERICAN INDIANS RESERVE THE
RIGHT TO SAY WE'RE FINE WITH
DEFERRING OUR, YOU KNOW,
DESIGNATING THE NIH AS IRB OF
RECORD OR UNIVERSITY AS IRB OF
RECORD, BUT WE ALSO RESEARCH THE
RIGHT TO STILL HAVE A RESEARCH
REVIEW BODY THAT CAN -- THAT
WILL OKAY OR NOT OKAY CERTAIN
PROJECTS OR POLICIES.
THAT STILL IS WITHIN THE RIGHT
OR THEY MAY HAVE THE RIGHT TO
DESIGNATE THEMSELVES THEY
ALREADY HAVE FEDERAL-WIDE
ASSURANCE OR ANOTHER ENTITY TO
ENSURE IRB PROCESSES ARE IN
PLACE.
HERE'S THE CATCH.
IF ANY OF RESEARCH IS BEING
DONE, INDIAN HEALTH SERVICE
FACILITY WITH INDIAN HEALTH
SERVICE STAFF, OR WITH INDIAN
HEALTH SERVICE RESOURCES, THEN
THAT'S THE THIRD IRB THAT NEEDS
TO BE INVOLVED.
AND QUITE OFTEN IHS WILL
POSSIBLY DEFER TO THE TRIBE BUT
SOMETIMES IHS HAS TO BE INVOLVED
UNDER THOSE CONDITIONS.
AND THEN GETTING BACK TO THE
SACRED OFFERING PIECE,
INDIVIDUAL RIGHTS WILL BE ALWAYS
HONORED FOR DATA DISPOSAL.
SO TRIBAL SOVEREIGNTY DOESN'T
GET TO USURP OR OVERPOWER
INDIVIDUAL RIGHTS AND INDIVIDUAL
CONSENT.
SO IN OTHER WORDS IF A PERSON
SAYS I WANT MY DATA, NATIVE
PERSON SAYS I WANT MY DATA
DESTROYED FIVE YEARS AFTER THE
STUDY IS COMPLETED, I WANT MY
BIOLOGICAL MATERIAL RETURNED TO
THE TRIBE, OR LET'S SAY THEY
WANT IT DESTROYED, THE TRIBE
CAN'T SAY, OH, WE'RE STEPPING IN
AND SAYING WE'RE USING OUR
SOVEREIGNTY TO NOW TAKE THAT
DATA AND DO WITH IT WHAT WE
WANT.
THEY CANNOT DO THAT.
AND SO THAT WOULD BE VIOLATING
THE SACRED OFFERING VALUE THAT
TRIBES REALLY TALKED ABOUT.
AND IRREVERSIBLE AND TIMELESS
CONSENT FOR GENOMIC MATERIALS,
THAT HAS TO STOP.
WE NEED TO PUT IN A MECHANISM OR
MOU OR SOMETHING IN PLACE THAT
ALLOWS OPTIONS FOR CONSENT, NOT
ONLY CONSENTING BUT POTENTIALLY
RECONSENTING NOT ONLY THE
INDIVIDUAL AT THE AT THE TIME
DATA IS DE-IDENTIFIED DOES THAT
THEN MOVE TO A TRIBAL LEVEL, AND
SO THOSE ARE SOME THINGS THE
TRIBES HAVE TALKED ABOUT.
ONE OF THE OTHER THINGS I WANT
TO HIGHLIGHT IS WHAT IF WE'RE IN
AN URBAN OR, YOU KNOW, URBAN
SAMPLE, WHAT DO WE DO WITH YOU
ARE PAN SAMPLES BECAUSE
TECHNICALLY LET'S SAY I'M DOING
A STUDY AMERICAN INDIANS, ALASA
NATIVES, IF NOT COLLECTED ON
TRIBAL LAND, RESPONDENT LIVES
OFF TRIBAL LAND THEY CAN PROCEED
WOULD THE TRIBAL APPROVAL.
COMPLICATION IS IN SOME URBAN
AREAS, TRIBAL COMMUNITIES LIVE
CLOSE BY AND THEY ACCESS
RESOURCES RIGHT THERE IN THAT
URBAN AREA.
SO, WHAT IF THERE'S AN URBAN
SAMPLE BUT YOU'RE NOT TARGETING
A TRIBE BUT TRIBAL LANDS OVERLAP
OR ARE IN CLOSE PROXIMITY, A
GOOD EXAMPLE IS PHOENIX OR
ALBUQUERQUE.
SAME CRITERIA AS ABOVE, WE'RE
SAYING, BUT WE ALSO ARE SAYING
YOU SHOULD -- BEST PRACTICE
WOULD BE TO CONSULT WITH NEARBY
TRIBES, POSSIBLY CREATE MOU OR
LET THEM KNOW WHAT'S HAPPENING
SO THAT THEY UNDERSTAND THAT YOU
ARE NOT GOING TO PURSUE DATA
ANALYSES BY TRIBE WITHOUT TRIBAL
APPROVAL AND CONSENT.
SO ONE THING WE WANT TO LOOK OUT
FOR UNDER THOSE CONDITIONS IS TO
BE MINDFUL WE DON'T WANT
WORK-AROUNDS, DON'T WANT PEOPLE
TO GO TO RAPID CITY, SOUTH
DAKOTA, IN SEARCH OF LAKOTA TO
DO RESEARCH BECAUSE IT'S OFF
TRIBAL LAND.
WE WOULD SAY IF YOU'RE GOING TO
MAKE INFERENCE TO LAKOTA PEOPLE,
EVEN IF COLLECTED IN RAPID CITY,
YOU NEED TO INVOLVE THE TRIBE
DIRECTLY.
THERE'S A LOT OF NATIVE
RESEARCHERS ACROSS THE COUNTRY
THAT HAVE DEVELOPED RESEARCH
PROTOCOLS THAT EMBODY THIS, NOT
JUST DATA PLANS AND DATA SHARING
AND MANAGEMENT PLANS BUT WHOLE
PROTOCOLS ABOUT HOW TO ENGAGE
COMMUNITIES.
AND I'LL GIVE AN EXAMPLE THAT WE
USED TO USE.
THAT INVOLVED CONFIDENTIALITY.
IT WAS REALLY IMPORTANT TO
MAINTAIN CONFIDENTIALITY.
ONE STUDY WE HAD AGREED THAT WE
RECOGNIZED TRIBAL NATION HAD THE
RIGHT TO EXCLUDE PUBLICATION OR
KEEP CONFIDENTIAL INFORMATION
CONCERNING THEIR CULTURE OR
TRADITIONS OR SACRED STORIES,
TEXTS, SONGS, SPIRITUAL BELIEFS.
WE STILL COULD REPORT OUT THAT,
FOR EXAMPLE, SPIRITUALITY MADE A
DIFFERENCE OR THAT TRADITIONAL
PRACTICES MADE A DIFFERENCE BUT
COULDN'T DOCUMENT THE DETAILS OF
ANY OF THOSE THINGS BECAUSE THAT
WAS VIOLATING THEIR TRADITIONAL
GUARDIANSHIP.
POINTS OF CONSIDERATION WE WANT
YOU TO THINK ABOUT, WE ARE
STARTING TO MOVE IN WRITING UP
POLICY NOW, CONSULTING CLOSELY
WITH OSP AND OGC AND INTRAMURAL
OFFICE AS WELL.
BUT THINGS LIKE, YOU KNOW,
ENSURING THAT WE HAVE A TRIBAL
LETTER OF SUPPORT, OR COUNCIL
RESOLUTION, TRIBAL COUNCIL
RESOLUTION, TO BE SUBMITTED WITH
APPLICATIONS COMING TO NIH, THAT
BASICALLY IS SAYING WE RECOGNIZE
DETAILS, FINAL DETAILS, OF THE
DATA PLAN MAY COME OUT LATER BUT
WE ARE IN AGREEMENT WITH THE
INITIAL DATA PLAN AND WE'RE IN
AGREEMENT WITH THE IDEA OF
MOVING FORWARD FOR THIS STUDY
AND EXPECT DURING THAT FIRST
YEAR THAT PRIOR TO DATA
COLLECTION THAT SOME OF THAT
WOULD BE FINALIZED AND, AGAIN,
WITH FORMAL TRIBAL APPROVAL,
EITHER VIA IRB, TRIBAL IRB,
RESEARCH REVIEW COMMITTEE, OR
THEIR TRIBAL DESIGNEE, SHOULD
INCLUDE DATA SHARING, DATA
MANAGEMENT, DISSEMINATION PLAN.
AND SO WE'RE IN THE PROCESS OF
DEVELOPING SOME OF THE DETAILS
OF THAT NOW.
WE WILL BE PROVIDING OF COURSE
SUPPLEMENTAL MATERIALS ONCE THIS
IS DEVELOPED.
AND SOME THINGS TO KEEP IN MIND,
THIS IS HOW STRICT SOME TRIBES
ARE, SOME TRIBES REQUIRE
PERMITS, FOR EXAMPLE, TO EVEN
ACCESS TRIBAL LANDS, TO CONDUCT
RESEARCH WITH TRIBAL
COMMUNITIES.
SOME CASES TRIBES WILL SAY EVEN
HOLDING A PRELIMINARY DISCUSSION
OF RESEARCH IDEAS IN OUR
COMMUNITY IS CONSIDERED TO BE
RESEARCH FROM OUR POINT OF VIEW,
AND THEREFORE YOU STILL NEED TO
PASS THROUGH OUR IRB FOR THAT.
SO, YOU KNOW, THAT NORMALLY
WOULD BE NOT CONSIDERED RESEARCH
FOR EXAMPLE IN UNIVERSITY
SETTINGS.
SO THERE'S LAYERS OF THIS THAT
ARE A LITTLE BIT MORE COMPLEX
AND, AGAIN, WE WOULD WORK WITH
THE TRIBAL -- ENCOURAGE P.I.s
TO WORK DIRECTLY WITH TRIBAL
NATIONS TO SORT THAT OUT.
NOW, A TRIBAL -- INDIGENOUS DATA
SOVEREIGNTY POLICY IS ONLY GOING
TO BE AS GOOD AS A TRIBE'S
ABILITY TO GOVERN, HAVE
GOVERNORRANCE OVER THEIR DATA,
WE RECOGNIZE SUPPORTING TRIBES
BUILDING GOVERNANCE STRUCTURES,
INCLUDING HELPING TRIBES BEGIN
TO DEVELOP MECHANISMS TO OVERSEE
USAGE, MAYBE DEVELOPING A
REPOSITORY.
WE'RE WORKING ON A DATA
SOVEREIGNTY PROTOCOL, BUT ALSO
ACKNOWLEDGING THAT GOVERNANCE
STRUCTURE INCLUDES CAPACITY
BUILDING AND BENEFIT SHARING, SO
PROVIDING TRAINING AND RESOURCES
TO BUILD CAPACITY IN DATA
MANAGEMENT AND ANALYSIS AND
DECISION MAKING, PROVIDING
TRAINING AND RESOURCES TO NIH TO
BUILD CAPACITY AND PROMOTING
THESE INDIGENOUS DATA
SOVEREIGNTY PRACTICES, AND OF
COURSE CULTURAL PRESERVATION, A
LOT OF TRIBES TALKED ABOUT IT'S
IMPORTANT TO ENSURE RESPECTFUL
CULTURAL HERITAGE AND
INTELLECTUAL PROPERTY.
WE'RE NOW AT THE FINAL TIME OF
PULLING TOGETHER ALL OF THIS
FEEDBACK FROM COMMUNITIES AND
THEMES WE JUST SHARED WITH YOU
AND WE'RE OUT IN THE COMMUNITIES
WINDING DOWN BEING OUT IN THE
COMMUNITY, GETTING READY TO GEAR
UP FOR TRIBAL CONSULTATION,
PROBABLY IN FEBRUARY, ONCE WE
HAVE A DRAFT POLICY READY FOR
THE COMMUNITY TO LAY EYES ON AND
OF COURSE TO SEEK FURTHER
FEEDBACK FROM THE NIH COMMUNITY
AS WELL.
I'LL END THERE.
IF WE HAVE TIME FOR THE SHORT
STORY LATER I CAN ALWAYS DO
THAT.
THANK YOU.
>> YES, THE RABBIT AND THE BEAR.
WE DO HAVE TIME FOR QUESTIONS.
PLEASE SUBMIT QUESTIONS BY
CLICKING ON THE BOX BELOW THE
VIDEO TITLED LIVE FEEDBACK LINK.
JONATHAN GREEN, OHSRP DIRECTOR,
IS ALSO GOING TO JOIN US IN CASE
THERE'S QUESTIONS ABOUT THE NIH
IRB PERSPECTIVE OR INPUT
REGARDING THIS TOPIC.
SO JONATHAN, PLEASE JOIN US.
OKAY.
WE HAVE A QUESTION.
IF TRIBES MUST HONOR INDIVIDUAL
CONSENT, SACRED OFFERINGS, HOW
WILL YOU RESOLVE CONFLICT THAT
ARISES IF A PERSON VOLUNTEERS
FOR A STUDY BUT THEY ARE
ENROLLED IN A TRIBE THAT DOES
NOT CONSENT PARTICIPATION.
>> WELL, IF IT'S A TRIBAL STUDY,
THEN THAT WOULD BE A PROBLEM,
RIGHT?
BECAUSE THAT'S THE DIFFERENCE.
A PERSON CAN GO TO AN URBAN, BE
IN AN URBAN STUDY, MAY BE AN
INDIVIDUAL FROM A PARTICULAR
TRIBE.
I THINK A GOOD EXAMPLE, CLINICAL
STUDIES, MOST OF OUR TRIBAL
COMMUNITIES HAVE SAID WE WANT TO
SUPPORT OUR POPULATION STILL
GETTING ACCESS TO CLINICAL
TRIALS, ESPECIALLY INVOLVING,
YOU KNOW, SITUATIONS WHERE, FOR
EXAMPLE, CANCER TREATMENTS WHERE
THEY MIGHT NOT OTHERWISE GET
ACCESS TO SOME OPPORTUNITIES
AFFORDED THEM, THEY WILL LEAVE
THE RESERVATION TO COME TO
ALBUQUERQUE TO PARTICIPATE IN A
CLINICAL TRIAL IN AN INNOVATIVE
CANCER TREATMENT, PRIOR TO
SAYING WE WANT TO SUPPORT THAT,
WE DON'T WANT TO STOP THAT FROM
HAPPENING, AS LONG AS THE
INVESTIGATOR DOES NOT MAKE
INFERENCES TO OUR TRIBE, WE WILL
BE OKAY WITH THAT.
SO THAT'S NOT GOING TO BE --
DOESN'T SOUND LIKE THAT'S A BIG
ISSUE.
SO IN THAT CASE, WE WOULD --
THERE'S A PEACE MADE THERE.
>> OKAY.
WHAT ARE THE WAYS THAT WE AS NIH
RESEARCHERS CAN MAKE SURE WE'RE
COLLECTING CULTURALLY COMPETENT
AND RESPONSIVE RESEARCH WHEN IT
INVOLVES AI/AN PERSONS.
>> REPEAT THE LAST PART.
>> WHAT ARE THE WAYS THAT NIH
RESEARCHERS CAN MAKE SURE WE'RE
CONDUCTING CULTURALLY COMPETENT
AND RESPONSIVE RESEARCH WHEN IT
INVOLVES AMERICAN INDIAN AND
ALASKA NATIVE PERSONS?
>> WELL, I MEAN, FIRST OF ALL,
WORKING CLOSELY -- A COUPLE
THINGS TO THINK ABOUT.
WHEN YOU'RE DOING RESEARCH WITH
NATIVE COMMUNITIES, IT'S NOT
JUST FOR THE LIFE OF THE STUDY.
FOR MOST NATIVE COMMUNITIES IT'S
ABOUT BUILDING A RELATIONSHIP
WITH THAT COMMUNITY AND HELPING
REALLY INVESTING IN THAT
COMMUNITY'S HEALTH AND RETURN TO
HEALTH.
AND SO IT MEANS FOR P.I.s
GETTING OUT INTO THE COMMUNITY.
ACTUALLY I THINK FOR DATA
SOVEREIGNTY PURPOSES IT MEANS
LITERALLY TALKING TO TRIBAL
COUNCIL ABOUT WHAT YOU'RE DOING.
AND, YOU KNOW, TO HAVE THAT FACE
TIME WITH COMMUNITY, THAT REALLY
MATTERS.
AND NOW A LOT OF COMMUNITIES
HAVE EVEN ZOOM.
SO THERE'S NO REASON YOU CAN'T
HAVE SOME KIND OF FACE TIME WITH
COMMUNITY.
THEY WANT TO GET TO KNOW YOU.
THEY WANT TO KNOW YOU'RE THERE
FOR THE COMMUNITY, NOT YOUR OWN
INTERESTS ONLY.
AND SO YOU'RE BUILDING A
RELATIONSHIP.
SO THAT'S NUMBER ONE.
I THINK BUILDING RELATIONSHIP IS
CRITICAL.
NUMBER TWO COMMUNITIES WANT TO
KNOW YOUR ETHICS, ARE YOU GOING
TO PUT YOUR BEST FOOT FORWARD
WITH RESPECT TO TREATING THEIR
COMMUNITY WITH RESPECT AND
HONORING THEIR PROTOCOLS AND
PRACTICES, AND THAT'S -- THAT'S
THE REASON WHY TO BE TRANSPARENT
UP FRONT TO SAY, HEY, WHAT ARE
YOUR DATA PROTOCOLS, HOW WOULD
YOU LIKE US TO HANDLE THIS, HOW
CAN WE BUILD THIS TOGETHER, AND
MAKING YOUR INTERESTS KNOWN UP
FRONT.
MY EXPERIENCE, I HAVE 30 YEARS
OF EXPERIENCE DOING RESEARCH IN
INDIAN COUNTRY AND I CAN SAY MY
EXPERIENCE HAS BEEN THAT WHEN
YOU'RE UP FRONT AND CLEAR AND
YOU SAY I WOULD LIKE TO PUBLISH,
PART OF THIS IS SHARING THE
INFORMATION WITH OTHER TRIBAL
COMMUNITIES AND SCIENTIFIC
COMMUNITIES, SO THAT WE CAN GET
MORE KNOWLEDGE OUT THERE,
BENEFIT OTHER COMMUNITIES,
TRIBES ARE OKAY WITH THAT
GENERALLY AS LONG AS WE TALK
ABOUT THAT.
YOU KNOW, OR BEING UP FRONT AND
SAYING THERE MIGHT BE SOME
QUESTIONS THAT ARISE LATER WITH
THAT DATA THAT WE'RE NOT
THINKING ABOUT NOW SO LET'S PUT
SOMETHING IN PLACE SO WE CAN
REVISIT THAT, YOU KNOW, AND MAKE
SURE THAT WE'RE TALKING WITH
EACH OTHER TO COME UP WITH THOSE
IDEAS.
SO, AGAIN, THAT'S PART OF
BUILDING THAT RELATIONSHIP AND
MAKING IT REALLY TRANSPARENT HOW
YOU'RE INTENDING TO USE DATA,
TRIBES WANT TO KNOW WHAT KIND OF
BENEFIT THIS HAS TO THEIR
COMMUNITY, NOT JUST TO YOU, OR
TO THE SCIENCE.
AND THEY WANT TO KNOW
ULTIMATELY, YOU KNOW, HOW CAN --
IF IT'S AN INTERVENTION, LIKE A
CLINICAL TRIAL THAT, YOU KNOW,
NOT NECESSARILY LIKE A
BIOLOGICAL-BASED CLINICAL TRIAL
THEY WANT TO KNOW HOW IS THIS
GOING TO BE SUSTAINED IN OUR
COMMUNITY, HOW CAN WE MAKE THIS
SUSTAINABLE, THAT'S A GREAT
INTEREST IN NIH AS WELL.
SO QUITE OFTEN WE HAVE MUTUAL
INTERESTS.
IT'S JUST A MATTER OF
COMMUNICATING AND BUILDING THAT
RELATIONSHIP.
IF YOU NEED SUPPORT CALL OUR
OFFICE.
WE'RE HAPPY TO PROVIDE THAT
SUPPORT TO TALK IDEAS THROUGH
WITH FOLKS.
>> OKAY.
JONATHAN, IF YOU HAVE ANYTHING
TO ADD, FEEL FREE TO HOP IN
HERE.
>> SURE.
YOU KNOW, I ECHO WHAT KARINA HAS
SAID HERE.
I THINK WE WANT RESEARCHERS TO
SORT OF THINK ABOUT THIS FROM
THE VERY BEGINNING.
YOU KNOW, FROM WHEN THEY GET
THEIR -- FIRST GENERATE THE IDEA
BEFORE THE PROTOCOL COMES TO THE
IRB, THINK ABOUT, OKAY, WHO DO I
NEED TO ENGAGE TO BE MOST
SUCCESSFUL IN THIS RESEARCH, AND
SUCCESS DEFINED NOT JUST BY THE
RESEARCHER'S OWN INTERESTS BUT
FOR THE PROJECT AS A WHOLE IN
THE COMMUNITY IT'S BEING DONE
IN.
JUST LIKE, YOU KNOW, I THINK
THAT WE WOULD NEVER THINK IT WAS
OKAY, MOST RESEARCHERS
UNDERSTAND THAT I CAN'T GO TO
ANOTHER COUNTRY, I CAN'T GO TO
MALI OR ETHIOPIA WITHOUT
CONTACTING SOMEBODY THERE AND
UNDERSTANDING THE CONTEXT IN
WHICH THE PEOPLE LIVE AND
CULTURES AND VALUES AS WELL AS
LEGAL RESTRICTIONS THAT MIGHT BE
IN PLACE.
AND SO THAT'S A VERY FAMILIAR
THING.
AND I THINK SIMILARLY, THAT'S
HOW WE NEED TO THINK ABOUT DOING
RESEARCH IN THE TRIBAL
COMMUNITIES.
IT BECOMES HARDER TO
CONCEPTUALIZE SOMETIMES BECAUSE
IT'S A NATION WITHIN THE NATION,
RIGHT?
THE BORDERS ARE BLURRIER.
BUT IT'S THE SAME IDEA.
WE WANT TO GET THE INPUT OF THE
COMMUNITY TO UNDERSTAND.
I THINK, YOU KNOW, ONE OF THE
FEARS I HEAR FROM RESEARCHERS IS
OH MY GOSH, THIS IS SO
BURDENSOME AND IT WILL TAKE SO
LONG I'LL NEVER BE ABLE TO EVEN
START MY STUDY.
AND IT WILL TAKE TIME UP FRONT.
BUT PAYOFFS IN THE LONG RUN I
THINK WILL BE SO MUCH GREATER.
AND I ASSURE YOU FROM EXPERIENCE
THAT THE TIME YOU SPEND UP FRONT
IF YOU DON'T SPEND IT UP FRONT
THE PAIN AND TIME ON THE BACK
END WILL BE THOUSANDS OF TIMES
MORE FROM FAILING TO DO THAT UP
FRONT TIME AND INVESTMENT.
IT WILL PAY OFF.
YOU BUILD THOSE RELATIONSHIPS.
AND THEN YOU'LL HAVE -- THEY
WILL BE THERE.
THEY WILL BE ESTABLISHED.
AND YOUR NEXT STUDY WILL GO MUCH
QUICKER.
SO --
>> YEAH, THERE MAY BE BUMPS IN
THE ROAD BUT, YOU KNOW, I MEAN
IT'S RESEARCH.
WE'VE ALL HIT BUMPS IN THE ROAD
WHEN WE'VE DONE SOME RESEARCH.
THE BOTTOM LINE TRIBES WANT THE
DATA.
THEY NEED TO HAVE SOME
INFORMATION TO BE ABLE TO MAKE
HELPFUL DECISIONS FOR THEIR
COMMUNITIES.
AND SO THEY ARE ALSO INVESTED IN
THIS AS A RESOURCE FOR COMMUNITY
AS WELL.
AND JUST THERE'S JUSTIFIABLE
MISTRUST, IT TAKES TIME TO BUILD
THAT TRUST.
THE MORE TRANSPARENT PEOPLE ARE,
THE MORE CLEAR THEY ARE UP
FRONT, OWNING THAT IF A MISTAKE
IS MADE, MY EXPERIENCE IS THAT
LEADS TO A BETTER PARTNERSHIP.
AS JONATHAN SAID DOING IT UP
FRONT SAVES HEADACHES IN THE
END, IF SOMETHING GOES AWRY DOWN
THE LINE BECAUSE YOU HADN'T
ESTABLISHED THOSE PROTOCOLS UP
FRONT AND THAT'S WHERE THE
MISCOMMUNICATION AND
MISUNDERSTANDINGS HAPPEN.
>> HOPEFULLY A QUICK QUESTION
BECAUSE I THINK WE WANT TO HEAR
ABOUT THE RABBIT AND THE BEAR
STORY BEFORE YOU LEAVE.
SO WHAT INFRASTRUCTURE CHANGES
SHOULD NIH FUND DATA REPOSITORY
CONSIDER SUCH AS DATA STANDARDS,
DATA SECURITY PROTECTION VIA
CONTROLLED ACCESS TO WORK TOWARD
TRUST WITH THE AI/AN
COMMUNITIES.
>> THAT'S GREAT, EXCELLENT
QUESTION, TOO LONG FOR FOUR
MINUTES OR LEST.
I THINK DATA REPOSITORIES ARE
NEW TO NATIVE COUNTRY, MANY
COMMUNITIES ARE NEEDING TO
REALLY THINK IT THROUGH ABOUT,
WELL, WE HAVE AN EXCELLENT ONE
IN ALASKA AND OTHER ONES BUT
TRIBES NEED TO THINK ABOUT WHAT
KIND OF ACCESS DO THEY WANT, HOW
DO THEY WANT THE DATA TO BE
ASSURED DATA WILL BE USED
PROPERLY, WHO WILL STEWARD,
THIRD PARTY OR TRIBE ITSELF,
THERE'S ALL KINDS OF QUESTIONS
TRIBES HAVE ABOUT TAKING ON SOME
RESPONSIBILITIES BUT I DO THINK
TRIBES ARE INTERESTED IN
ENSURING THEIR DATA IS SAFE.
AND FIGURING OUT A WAY THAT THEY
CAN STILL HAVE -- PEOPLE CAN
HAVE ACCESS IN A WAY THAT
ENSURES WELL-BEING AND ECONOMIC
AND SECURITY OF THE TRIBE AS
WELL.
JUST LIKE WE HAVE DATA SECURITY
PRACTICES FOR THE UNITED STATES
TOO.
YEAH, AGAIN, WE'RE OPEN AT THE
TRIBAL HEALTH RESERVE OFFICE TO
ANSWER ANY OF THOSE QUESTIONS.
IF YOU WANT ME TO SHARE THAT
STORY I CAN DO IT BRIEFLY.
>> GREAT.
>> WE HAVE A LOT OF STORIES, WE
HAVE A LOT OF TEACHINGS COME OUT
OF ORIGINAL INSTRUCTIONS THAT
ARE EMBEDDED EVEN IN CHILDREN'S
STORIES OR DIFFERENT STORIES
THAT TELL US HOW TO LIVE AND HOW
TO RESOLVE CONFLICT AND DEAL
WITH THINGS.
THIS ONE IS CALLED THE -- IT'S A
VERSION CALLED THE BUNGLING
HOST, A CHOCTAW SOUTHEASTERN
TRIBAL STORY, THERE'S
VARIATIONS.
BASICALLY LONG TIME AGO, ONE DAY
BEAR NOTICED RABBIT WAS REALLY
SICK.
HE WAS JUST REALLY WORRIED ABOUT
RABBIT.
HE INVITED RABBIT OVER.
BEAR, YOU HAVE TO KNOW HAS GREAT
MEDICINE.
BEAR KNOWS HOW TO WORK WITH FIRE
AND FIRE IS LITERALLY CREATED ON
EARTH, HE'S VERY SACRED.
RABBIT CAME OVER TO HAVE SOME
FOOD AT BEAR'S HOUSE BECAUSE
BEAR WANTED TO FEED HIM BECAUSE
HE KNEW RABBIT WASN'T DOING
WELL.
RABBIT GOT THERE EARLY AND SPIED
BEAR GETTING READY CREATING HIS
POT OF SOUP.
HE NOTICED BEAR CUT HIMSELF OPEN
AND SAID A PRAYER AND THEN
PULLED SOME OF HIS BEAR FAT OUT
AND ADDED IT TO THE SOUP.
AND SO RABBIT THOUGHT THAT WAS
INTERESTING.
AND SO RABBIT ATE THE SOUP AND
GOT WELL.
HE HEALED FROM THAT SOUP
EXPERIENCE.
SO ONE DAY RABBIT DECIDED HE WAS
GOING TO RETURN THE FAVOR TO
BEAR.
BUT RABBIT BEING RABBIT WHO
DOESN'T PAY ATTENTION TO
PROTOCOL AND DOESN'T UNDERSTAND
HOW TO PREPARE MEDICINE IN THAT
WAY DECIDED THAT HE'S GOING TO
DO THE SAME THING.
HE INVITED BEAR OVER.
SURE ENOUGH WHAT DID RABBIT DO?
HE CUT HIMSELF OPEN AND BLED OUT
ALL OVER THE PLACE AND BEAR IS
LIKE WHAT ARE YOU DOING?
YOU DIDN'T FOLLOW THE PROTOCOLS
ABOUT HOW TO DO THE MEDICINE
RIGHT.
AND HE SAID, NO, WE NEED TO GET
THE DOCTOR!
ONE OF THE GREAT DOCTORS DURING
THAT PERIOD WAS BUZZARD.
BUZZARD BACK THEN WAS ACTUALLY A
GREAT DOCTOR.
SO THEY WENT AND BEAR GATHERED
BUZZARD, ANIMALS SAID QUICK,
HELP RABBIT, HE'S BLEEDING OUT.
HE APPROACHED THE MEDICINE THE
WRONG WAY, THOUGHT HE COULD CUT
HIMSELF AND NOW HARMED HIMSELF.
BUZZARD SAID WE'LL HAVE A
CEREMONY FOR FOUR DAYS, BUILD A
FIRE, LEAVE ME ALONE, I'LL JUST
MAKE SURE THAT I'LL PUT FIRE AND
MAKE SURE THE SMOKE GOES THROUGH
THE STACK.
FOR DAYS YOU CAN COME IN AND
HELP -- RABBIT SHOULD BE FINE.
EVERYONE WAITED FOR FOUR DAYS
WHILE BUZZARD CONDUCTED HIS
CEREMONY.
SOMETHING HAPPENED THAT SHIFTED.
BUZZARD GOT GREEDY.
SURE ENOUGH, WHAT HAPPENED WAS
FOUR DAYS LATER THEY OPENED UP
THE DOOR AND THERE WERE A PILE
OF BONES.
BUZZARD HAD EATEN RABBIT.
AND BEAR WAS HORRIFIED.
ALL ANIMALS WERE UPSET THAT
BUZZARD HAD NOT DONE HIS DUTY,
HE GOT GREEDY AS A DOCTOR, SO
THEY GATHERED ALL THE ANIMALS
AND WENT AND HUNTED FOR BUZZARD.
BEAR CAUGHT BUZZARD.
BEAR BUILT A SACRED FIRE, WAS
ABOUT TO OFFER BUZZARD TO THE
FIRE FOR THAT TRANSGRESSION AND
NOW YOU KNOW HOW BUZZARD GOT HIS
HEAD ALL BURNED UP LIKE THAT.
BEAR HELD HIM OVER THAT FIRE.
BUZZARD SAID WHAT CAN I DO TO
MAKE THINGS RIGHT?
BEAR BROUGHT HIM AWAY FROM THE
FIRE AND SET HIM UP AND SAID,
OKAY, THIS IS WHAT WE'LL DO.
FROM THIS DAY FORWARD, BUZZARD,
YOU ARE NOW GOING TO BE NO
LONGER A DOCTOR, YOU'RE GOING TO
BE OUR PUBLIC HEALTH SERVANT.
YOU'RE IN CHARGE OF TAKING CARE
OF PREVENTING DISEASE BY EATING
ALL OF THE DEAD THAT ARE
SURROUNDING ALL THE AREA.
THAT'S YOUR JOB.
AND THAT'S THE WAY YOU CAN
ALWAYS GIVE BACK TO MAKE SURE WE
HAVE THINGS RIGHT FROM THIS DAY
FORWARD.
THAT'S A CHOCTAW STORY.
>> HOW BUZZARD GOT HIS JOB.
>> YES, A REMINDER WE NEED TO
NOT GET GREEDY IN OUR ROLE BUT
THERE'S ALSO OPPORTUNITIES FOR
REPARATIONS WHEN THINGS GO
WRONG.
ALSO THERE'S REASONS THERE'S
PROTOCOLS AND THINGS IN PLACE WE
NEED TO HONOR.
THAT'S JUST A TAKEAWAY FOR
TODAY.
>> THANK YOU FOR SHARING THAT.
WE APPRECIATE YOUR JOINING US
TODAY.
I DO WANT FOLKS TO KNOW THERE
WILL NOT BE AN OHS ORP EDUCATION
SERIES SESSION IN JANUARY BUT
FEBRUARY SPEAKER WILL BE DR.
KARA PARKER, DIRECTOR OF
MINORITY RESEARCH OFFICE.
THAT WILL BE ON THURSDAY,
FEBRUARY 6, 3 TO 4, VIA NIH
VIDEOCAST.
I'LL SEND OUT AN ANNOUNCEMENT AS
I USUALLY DO.
THANK YOU SO MUCH.
WE GREAT EYE APPRECIATE YOUR
JOINING US TODAY.
>> THANK YOU FOR HAVING ME.
>> THANKS.
BYE.