MY BACKGROUND IS PUBLIC HEALTH.
THANK YOU.
[OFF-MIC]
>> WE'LL HAVE A COUPLE MORE NIH
FOLKS JOIN AND WE'LL HAVE AN
OPPORTUNITY TO HAVE THEM
INTRODUCE THEMSELVES WHEN THEY
JOIN.
WE HAVE A QUICK WELCOME MESSAGE
FROM DIRECTOR TARA SCHWETZ.
>> HELLO AND WELCOME TO THE NIH
CAMPUS AND THE INDIGENOUS DATA
SOVEREIGNTY MEETING AND I'M THE
DIRECTOR FOR PLANNING AND
INITIATIVES.
IN MY ROLE I SERVE AS THE
DIRECTOR OF DPCPSI AND OVERSEE
THE OFFICES INCLUDING THE TRIBAL
HEALTH RESEARCH OFFICE.
I ALSO LEAD THE COORDINATION OF
NIH WIDE RESEARCH AND STRATEGIC
INITIATIVES.
NOW, I UNFORTUNATELY AM NOT ABLE
TO BE WITH YOU IN PERSON TODAY
CURRENTLY ON WORK TRAVEL IN NEW
YORK CITY.
I'M REALLY SORRY TO MISS THIS
IMPORTANT MEETING BUT PLAN ON BE
BRIEFED ON IT WHEN I RETURN.
BEFORE YOU ALL BEGIN, I WANT TO
THANK YOU FOR TRAVELLING TO
BETHESDA FOR THIS IMPORTANT
MEETING TO INFORM THE NIH
INDIGENOUS DATA SOVEREIGNTY
POLICY.
NIH RECOGNIZES THE GREAT NEED
FOR A POLICY TO HONOR TRIBAL
SOVEREIGNTY IN RESEARCH AND ALSO
TO COORDINATE THE NIH RESPONSE
AND SUPPORT OF RESEARCH IN
TRIBAL AND INDIGENOUS
COMMUNITIES.
WE GREATLY VALUE THE DIVERSE
SCIENTIFIC AND CULTURAL
EXPERTISE ALL OF YOU ARE
BRINGING TO THIS CONVERSATION.
NIH WAS INCREDIBLY LUCKY TO
RECRUIT DR. KARINA WALTERS TO BE
THE DIRECTOR OF THE TRIBAL
HEALTH RESEARCH OFFICE ABOUT A
YEAR AND A HALF AGO.
I HAVE BEEN THRILLED WITH HER
LEADERSHIP ON TRIBAL HEALTH AND
RELATED NIH PROGRAMS AND POLICY.
THE CONVERSATIONS YOU ALL WILL
BE HAVING OVER THE NEXT TO DAYS
WILL DIRECTLY INFORM THE
DEVELOPMENT OF AN INDIGENOUS
DATA SOVEREIGNTY APPLIED TO ALL
NIH RESEARCH AND PROGRAMS.
THE INDIGENOUS DATA WILL ADDRESS
OWNERSHIP, STEWARDSHIP AND
ACCESS AND TRANSFER AND USE AND
RE-USE OF DATA.
THUS FAR THE OFFICE HAS
CONDUCTED NINE DIFFERENT
LISTENING SESSIONS WITH TRIBAL
LEADERS, A.I. AND RESEARCHERS
AND THE NIH TRIBAL ADVISORY
COMMITTEE AND THEIR TECHNICAL
ADVISORS.
THIS IS REALLY HELPED TO INFORM
THE DEVELOPMENT OF THE
INDIGENOUS DATA SOVEREIGNTY
POLICY AND LEARNED A GREAT DEAL
AND EXPECT THEY'LL LEARN MORE
FROM THE CONVERSATION YOU ALL
ARE HAVING TODAY AND TOMORROW.
I LOOK FORWARD TO HEARING WHAT
CAME FROM THE CONVERSATIONS AND
READING THE FINAL REPORT.
THANK YOU ALL AGAIN FOR A GREAT
PARTICIPATE AND I HOPE YOU HAVE
TWO REALLY GREAT AND FRUITFUL
DAYS IN BETHESDA AND SAFE
TRAVELS HOME.
>> ALL RIGHT.
A QUICK OVERVIEW OF OUR AGENDA
TO SET UP THE DAY, ONCE WE GO
THROUGH THE INTRODUCTIONS WE'RE
ABOUT TO HAND IT TO ALL OF YOU
AND YOU'LL INTRODUCE YOURSELVES.
IT'S IMPORTANT TO UNDERSTAND WHO
IS IN THE ROOM WITH US TODAY AND
THE EXPERTISE WE BRING TO THE
TABLE.
WE'LL THEN KICK IT OVER WITH
PANEL 1 AND TAKE A QUICK BREAK
AT 11:35.
YOU MAY HAVE NOTICED WE HAVE A
FULL TABLE TODAY WE'RE GOING TO
HAVE TO ASK OUR PANELISTS TO
SWITCH IN BETWEEN PANELS AND
FIND A NEW SEAT AND IF YOU KNOW
YOU'RE ON PANEL 2, MOVE UP TO
THE FRONT ROW AND WE HAVE LOVELY
FOLKS AFTER THEY WRAP UP.
AFTER PANEL 2, SORRY, PANEL 2
WILL BE HAVE A MODERATOR JOINING
US IN A LITTLE BIT AT THE BRAND
NEW NATIVE HAWAIIAN POINT OF
CARE ISLANDER OFFICE AT THE
NATIONAL INSTITUTE AT MINORITY
HEALTH DISPARITY.
AFTER HER PANEL WE'LL HAVE A
LUNCH BREAK, LOTS OF TIME TO
CHAT INFORMALLY AND NETWORK AND
FOLLOW-UP ONE PANEL 3 MODERATED
BY DR. ETZ OF NATIVE AMERICAN
PROGRAMS AND THE NATIONAL
INSTITUTE OF DRUG ABUSE AFTER
THAT I'LL MODERATE PANEL 4 AND
HAVE A QUICK BREAK AND TALK
ABOUT NEXT STEPS THINK HU TO
PREPARE ABOUT OUR CONVERSATION
TOMORROW AND LOAD THE SHUTTLE
AND TAKE YOU BACK TO THE HOTEL
AT THAT TIME.
SO, WEDGE THAT WE'RE GOING TO
TURN TO INTRODUCING ALL OF YOU.
YOU'LL SEE IN FRONT OF YOU THE
MICROPHONE.
THERE'S A SILVER BUTTON THERE IN
THE MIDDLE, IF THAT TURNS GREEN
THAT TURNS IT ON AND WE'LL BE IN
ALPHABETICAL ORDER SO YOU CAN
GAUGE WHERE YOU'LL FALL BASED ON
YOUR LAST NAMES AND KNOW TO BE
PREPARED THERE.
IF YOU NEED ANYTHING DON'T
HESITATE TO GRAB ONE OF US AND
WE'RE HAPPY TO HELP YOU.
ALL RIGHT, WITH THAT,
DR. ANDERSON YOU'RE UP.
>> I FIGURED THAT WOULD HAPPEN.
[SPEAKING NON-ENGLISH]
HI, EVERYONE.
I'M MATT ANDERSON I'M OVER AT
THE UNIVERSITY OF WISCONSIN AS
AN ASSOCIATE PROFESSOR IN THE
LABORATORY OF GENETICS AND
LABORATORY FOR GENOME SCIENCE
AND INNOVATION.
I RUN A RESEARCH GROUP.
MOST MY LAB STUDIES FUNGAL
PATHOGENS AND HOW IT CONTRIBUTES
TO THE BALANCE BETWEEN HEALTH
AND DISEASE AND ORGANISMS THAT
LIVE ON AND WITH US.
SOME OF OUR WORK HAS MOVED INTO
THE MICROBIOME AND SPECIFICALLY
WORKING IN TRIBAL COMMUNITIES
AROUND HEALTH AND THE
MICROBIOME.
>> GOOD MORNING.
IT'S AN HONOR TO BE HERE THIS
MORNING.
AND JUST A LITTLE BIT ABOUT
MYSELF I KNOW I PUT A LOT ON
THAT SLIDE.
I'M A CITIZEN OF THE CHEROKEE
NATION OF OKLAHOMA AND BORN IN
MISSOURI BUT LIVED IN ALL PARTS
OF THE MIDWEST INCLUDING KANSAS,
ILLINOIS AND MISSOURI.
I GOT MY BACHELOR'S IN BIOLOGY
FROM THE UNIVERSITY OF COLORADO
IN BOULDER AND WENT ON TO GET MY
DOCTORATE AT JOHNS HOPKINS IN
PUBLIC HEALTH.
MY FIRST POSITION WAS IN
NORTHERN ARIZONA HELPING TO
DIRECT NIAAA STUDY ON SUBSTANCE
ABUSE IN AMERICAN INDIANS THERE
AND THEN GOT A JOB AT NORTHERN
ARIZONA UNIVERSITY AND THEN
MOVED TO UNIVERSITY OF SOUTH
FLORIDA AND WAS THERE IN THE
COLLEGE OF MENTAL HEALTH FOR
ABOUT 11 YEARS AND THEN I HAD
THE GREAT OPPORTUNITY TO RETURN
BACK TO FLAGSTAFF AND NIU AND
HELP ESTABLISH THE CENTER FOR
HEALTH EQUITY RESEARCH THERE.
LAST YEAR IN TERMS OF A
PROFESSIONAL HONOR INDUCTED INTO
THE NATIONAL ACADEMY OF MEDICINE
AND NOW I HAVE THE OPPORTUNITY
TO HELP BUILD A NEW COLLEGE OF
MEDICINE AT MY INSTITUTION.
I COULDN'T DO ALL THIS WITHOUT
MY FAMILY AND SO I HAVE A
PICTURE OF MY FAMILY THERE AND
MY HUSBAND AND THREE CHILDREN
AND MOTHER AND ENSO THE DOG NOT
PICTURED.
THANKS.
>> I LIVE IN ANCHORAGE ALASKA
WHERE I WORK AS A RESEARCHER FOR
SOUTH CENTRAL FOUNDATION WHICH
SAY TRIBAL HEALTH ORGANIZATION
HEADQUARTERED IN ANCHORAGE.
GREAT TO BE WITH YOU ALL THIS
MORNING.
>> MY INDIAN NAME IS OTTER
WOMAN.
I'M A MULTI-TRIBAL PERSON AND
FULL TENURED PROFESSOR AT THE
UNIVERSITY OF MONTANA AND ALSO
THE CHAIR OF NATIVE AMERICAN
STUDIES AT THE UNIVERSITY OF
MONTHLY MON AND I'M THRILLED TO
BE HERE TODAY.
I'VE BEEN PART OF DISCUSSION
GROUPS THAT MANY OF US HAVE BEEN
PART OF WITH THE ROBERT WOOD
JOHNSON FOUNDATION WHICH HAS
BEEN HELPFUL TO TALK ABOUT THIS
TOPIC AROUND DATA SOVEREIGNTY
AND MANAGE RESEARCH AND HELP OUR
COMMUNITIES BENEFIT FROM SCIENCE
WHICH IS WHAT I'M PASSIONATE
ABOUT.
THE PHOTO IS FROM A MATRIARCHAL
STORY TELLING AND WE BROULD IN
ELD -- BROUGHT IN ELDERS FROM
OUR CAMPUS AND HOLD PIPE
CEREMONIES AND NAMING
CEREMONIES.
WE HAD LAST YEAR I AM PART OF
OUR BUFFALO WOMEN'S SOCIETY
WHICH IS A WARRIOR WOMEN'S
SOCIETY WE BROUGHT BACK TO THE
NATION FOR THE FIRST TIME IN
OVER 100 YEARS.
WE'RE ALL VERY PROUD ABOUT THE
WORK WE'RE DOING IN MONTANA.
IF YOU NEED TO LABEL IT
DECOLONIZED IT'S CENTERED AROUND
THE CONFEDERACY AND THE WORK
WE'RE DOING AROUND CENTERING OUR
CHILDREN, OUR ELDERS AND OUR
PEOPLE WITHIN THE WORK WE DO AND
HAPPY TO BE PART OF THAT IN SOME
SMALL WAY.
A LOT OF THE WORK HAS BEEN
SHIFTING FROM NIH FUNDED
RESEARCH WHICH I HAVE A LONG
HISTORY OF BEING FUNDED WITH
RO1s AND DIFFERENT THINGS BUT TO
CENTER INDIGENOUS VOICES WITHIN
THE WORK AND INDIGENOUS
CEREMONIES INTO THE HEALING
PROCESS AND HOW TO ELEVATE THAT
PROFESSOR AND THE DISCOURSE ON
OWNERSHIP AROUND OWNERSHIP INTO
HEALING.
THAT'S WHAT I'M INTERESTED IN.
SO I'M WORDY TOO I TOOK THE FACT
THAT WE HAD TWO SLIDES AND ADDED
SOME QUESTIONS WHICH WERE MY OWN
QUESTIONS I'M SORRY I'M GOING
OFF AGENDA FIRST THING.
SO REALLY WHAT ARE MY THOUGHTS
COMING HERE AND MY OWN AGENDA
GOALS AND WAYS TO PROVIDE MORE
EFFICIENT APPLICATIONS OF
SCIENCE AND SCHOLARSHIP ABOUT
HEALTH AND HEALING TO BENEFIT
NATIVE COMMUNITIES.
IN MONTANA WE'RE TIRED OF SEEING
OUR HEALTH STATISTICS BEING SO
DIRE.
WE HAVE ONE OF THE HIGHEST
SUICIDE RATES IN THE COUNTRY.
WE HAVE EXTRACTIVE RESEARCH
HAPPENING ON EACH OF OUR
RESERVATIONS.
WE HAVE DYSFUNCTION THAT IS ALSO
OCCURRING WITHIN OUR TRIBAL
COMMUNITIES SO THAT IT'S VERY
MUCH LIMITING THE WAYS SCIENCE
CAN EFFECTIVELY BENEFIT OUR
COMMUNITIES.
AND A LOT OF US ARE VERY TIRED
OF THAT.
AND WE'RE TIRED OF SEEING OUR
COMMUNITIES USED AS A SOCIAL
EXPERIMENT AND SUFFERING.
AND OTHER COMMUNITIES.
HOW CAN WE STOP AND SLOW THE
PREDATORY NATURE OF SOME OF THAT
RESEARCH IS ARE SOME OF THE
THINGS I'M INTERESTED IN.
HOW CAN WE ADOPT THE EFFICACY
AND INVEST IN HEALING IN
APPROPRIATE WAYS.
THAT'S A DIFFICULT TOPIC.
THE BLACK FEED HAVE MORE
TRANSPARENT ABOUT OUR COMMUNITY
AND CULTURE.
PART HAS TO DO WITH THE FACT WE
HAVE OUR CREATION STORIES AND
KNOWLEDGE EMBEDDED WITHIN OUR
CEREMONIES AND THOSE ARE THINGS
INTACT AND NOT ALL TRIBES HAVE
THEM.
THAT'S A SOURCE OF PRIVILEGE WE
HAVE.
WE WOULD LIKE TO SEE THAT
CREATED WITHIN OTHER TRIBAL
NATIONS IS TO INVEST IN WAYS
THEY CAN HAVE THAT BACK.
AND FINALLY HOW CAN INDIGENOUS
SCHOLARS BE SUPPORTED IN THIS
WORK.
ONE OF THE THINGS AS SOMEBODY
WHO HAS BECOME A CHAIR OF A
DEPARTMENT AND A LONG TIME
PERSON WHO'S HAD TENURE IS WE
SEE A LOT OF BONE COLLECTING AND
THAT'S A VERY CRASS WAY OF
SAYING THE WAYS OUR NATIVE
SCHOLARS ARE USED TO CREATE
FUNDING SOURCES.
THERE'S OFTEN TIMES BAIT AND
SWITCHES THAT HAPPEN WHERE
INDIAN PEOPLE ARE INCLUDED ON
PROPOSALS AND TAKEN OFF WHEN
IT'S FUNDED.
THESE ARE PRACTICES THAT HAPPEN
COMMONLY WITHIN THE MACHINE OF
NIH FUNDING AND IT IS SOMETHING
THAT REALLY WE HAVE TO FIND A
WAY COLLECTIVELY TO STOP AND NO
LONGER PUT SUCH STRAIN ON OUR
NATIVE SCHOLARS SO THEY'RE
FEELING BURNED OUT.
I MENTOR NATIVE SCHOLARS AS WELL
AND SOMETHING I'M ALWAYS
CONCERNED ABOUT IS ESPECIALLY
WHEN PEOPLE COME OUT OF GRADUATE
SCHOOL ARE TAKEN IN BY PEOPLE
WHO SOMETIMES DO NOT HAVE THEIR
BEST INTEREST AT HEART AND ARE
USING THEM SIMPLY TO CREATE
MONEY BUILDING ENTITIES OFF THE
SUFFERING OF MY COMMUNITY AND MY
COMMUNITIES.
SO THOSE ARE SOME THINGS THAT
I'D LIKE FOR US TO SPEND SOME
TIME AND INTENTIONALITY ON
THINKING ABOUT.
THANK YOU TO EVERYBODY FOR
BRINGING US TOGETHER.
I'M EXCITED TO BE HERE.
>> GOOD MORNING.
THANK YOU FOR HAVING ME.
I'M A CITIZEN OF THE UNITED HOMA
NATION AND I'M A U.S. VETERAN.
THIS IS THE LOSS OUR COMMUNITIES
EXPERIENCE.
THAT'S THE ESSENCE OF MY
RESEARCH LOOKING AT HOW THE
ENVIRONMENTAL CHANGES COASTAL
EROSION, PURPOSEFUL
ENVIRONMENTAL DESTRUCTION
IMPACTS, INDIGENOUS CULTURE AND
HEALTH.
I DON'T HAVE MY RESEARCH ON HERE
JUST ACKNOWLEDGING THE PEOPLE
MENTORED ME.
SO THANK YOU.
>> GOOD MORNING MY NAME IS
JESSICA BLANCHARD AT THE
UNIVERSITY OF OKLAHOMA IN
NORMAN.
I'M NON-NATIVE SO I APPRECIATE
THE INVITATION TO BE HERE AND
BEING PART OF THE CONVERSATION.
MOST THE WORK I DO ON THIS
PARTICULAR ISSUE HAS TO DO WITH
THOSE THINGS LISTED THERE THE
CENTER FOR THE ETHICS AND
INDIGENOUS GENOMICS RESEARCH AND
GET TO LEARN FROM EVERYONE HERE
AND VALUE THE PARTNERSHIPS
TREMENDOUSLY.
MY PASSION IS THE GENOMICS AND
ETHICS PROGRAM FOR STUDENTS A
TRAINING PROGRAM FOR INDIGENOUS
STUDENTS AT THE UNIVERSITY OF
OKLAHOMA AND FINALLY ALSO
WORKING WITH THE STUDENTS AND
CANCER CENTER.
THOSE ARE PROJECTS I HAVE GOING
ON THAT HAVE TO DO WITH THE
QUESTION OF INDIGENOUS DATA
SOVEREIGNTY.
I WON'T GO THROUGH ALL OF THEM
AND MY BIGGEST WORK IS MY WORK
AND I'M HAPPIEST WITH MY FAMILY
OR CYCLING OR CAMPING OR SEWING
OR ALL OF THE ABOVE.
I'M ORIGINALLY FROM ALABAMA.
MY HUSBAND IS FROM OKLAHOMA.
WHEN I MOVED TO OKLAHOMA WE
DECIDED TO STAY THERE AND RAISE
OUR FAMILY SO THE GIRLS CAN BE
IN THEIR TRIBAL COMMUNITY.
THEY'RE IN CENTRAL OKLAHOMA
ABSENTEE SHONI COMMUNITY.
>> ALOHA.
I AM A PROFESSOR AND ASSOCIATE
CHAIR OF THE OFFICE OF PUBLIC
HEALTH STUDIES AT UNIVERSITY OF
HAWAI'I.
I'M A SETTLER OF HAWAI'I.
I'M FROM KOREA AND 1.5
GENERATION BORN IN KOREA, MOVED
TO AND YOU SEE THE MOUNTAINS
THERE AND I AM ALSO A PART OF
OUR BOARD MEMBER BY A NATIVE
HAWAIIAN ORGANIZATIONS AND HERE
WITH MY COMMUNITY PARTNER AND
MENTOR AND TOGETHER WE WORK ON
THE ISLAND OF OAHU WE DO
SOVEREIGNTY PROGRAMS TOGETHER
AND WE HAVE GROWN TOGETHER AND
ENGAGE EVERYDAY COMMUNITY
MEMBERS ON DOING RESEARCH AND
INFORMING RESEARCH AND MAKING
SURE EVERYTHING WE DO IS
COMMUNITY DRIVEN AND CULTURALLY
GROUNDED.
AND THERE'S LAND-BASED
ACTIVITIES RESTORING SEAWEED AND
PERFORMING TRADITIONAL MEDICINE
AND SO THIS IS A WAY FOR THE
COMMUNITY FROM THE ACTUAL
COMMUNITY TO HAVE A VOICE IN
WHAT'S GOING ON IN THEIR
COMMUNITY.
I'M ALSO A MOTHER.
MY FAMILY IS THERE.
I ALSO LOVE TO BE IN THE OCEAN
AND BEING WITH NATURE.
THANK YOU SO MUCH FOR HAVING ME
HERE.
THANK YOU.
>>
[SPEAK
[SPEAKING NON-ENGLISH]
HELLO, I'M A CITIZEN OF
MINNESOTA AND WENT TO THE
UNIVERSITY OF MINNESOTA MORE IS.
-- MORRIS.
NOW I'M THE DIRECTOR OF THE
NATIVE BIO CONSORTIUM AND MANAGE
OUR DATA AND RESEARCH AND I
MANAGE THE TRIBAL DATA
REPOSITORY PROJECT AND I
CURRENTLY CALL SALT LAKE CITY
HOME.
THAT'S IT.
THANK YOU.
>> MY NAME IS CARRIE FREEMAN A
TRIBAL MEMBER FROM ALASKA IN THE
INTERIOR.
I CURRENTLY SIT AS THE ALASKAN
AREA REP FOR THE NIH TAC.
AND MY BACKGROUND IS IN NURSING.
I DID FRONTLINE NURSING FOR A
LONG PERIOD OF TIME.
SPECIFIC TO HOMELESS POPULATIONS
WITHIN URBAN AREAS AND PEDIATRIC
HOSPICE, WHICH WAS NOT MY
FAVORITE JOB BUT IT WAS VERY
REWARDING AND I WAS ELECTED AS A
COUNCIL MEMBER FROM MY TRIBE.
I'M EXCITED TO BE HERE AND A MOM
AND GRANDMA AND ALL THESE THINGS
THAT WE'RE GOING TO BE TALKING
ABOUT WHILE WE'RE HERE IS VERY
IMPORTANT TO MY CHILDREN AND MY
GRANT CHILDREN AND GREAT
GRANDCHILDREN WHEN THEY COME
AROUND.
I WANT TO MAKE SURE THAT THE
POLICIES THAT ARE SET IN PLACE
ARE PROTECTIVE OF OUR
COMMUNITIES AND OUR FAMILY
GENERATIONS DOWN THE WAY.
THANK YOU.
>>
[SPEAKING NON-ENGLISH]
I HAVE BEEN ON TRIBAL COUNCIL --
THIS IS MY THIRD CONSECUTIVE
TERM AND IN FOUR WAS A TRIBAL
CHAIR AND ALSO SIT ON THE TRIBAL
ADVISORY COMMITTEE AS A CHAIR
AND I JUST REALLY APPRECIATE
BEING HERE TODAY.
THANK YOU.
[OFF-MIC]
>>
[SPEAKING NON-ENGLISH]
I'M FROM THE TURTLE CLAN AND MY
NAME IS WHITE BUFFALO WOMAN.
IT'S HARD TO SEE HALF OF WHAT I
PUT UP THERE AND I'LL TRY TO
WING IT AND REMEMBER WHAT I
SAID.
SO I AM AN ALTERNATE FOR FROM
THE BEMIDJI AREA.
THIS IS THE FIRST TIME BEING AT
ONE OF THE MEETINGS.
I'M AN ENROLLED MEMBER OF THE
SIOUX TRIBE OF CHIPPEWA INDIANS
AND TRIBAL SECRETARY FOR THE
COUNCIL AND IT'S BEEN FORMED TWO
YEARS AGO NOW.
ALSO I AM A LICENSED
PSYCHOLOGIST IN THE STATE OF
MICHIGAN AND CURRENTLY IN THE
PROCESS OF -- WELL, DID OPEN MY
OWN PRIORITY DOULA PRACTICE.
I'M WORKING ON GETTING SOME OF
OUR INDIGENOUS CULTURE INTO
DOULAS AS WELL AS A WRAP AROUND
WITH PSYCHOLOGY SERVICES AS
WELL.
THE PICTURE ON THE LEFT IS
MYSELF AND MY FIVE CHILDREN.
I DO HAVE FIVE CHILDREN FROM 11
TO 21.
I'M ALSO A GRANDMOTHER TO A
9-MONTH-OLD GRANDSON.
I ALSO HAVE FOUR CHIHUAHUAS
WHICH MAKES EVERYBODY LIKE
WHAT -- IT'S A WHOLE CHIHUAHUA
FAMILY, MOM, DAD AND TWO BABIES.
I DIDN'T HAVE THE HEART TO GIVE
THE BABIES AWAY I HAVE TWO CATS
AND FOUR CHICKENS AND YES I LIVE
UP IN THE UPPER PENINSULA OF
MICHIGAN.
IT'S VERY RURAL AND I CAN HAVE
MY CHICKENS IN THE BACK WITH ME
IF I WANT.
THE PICTURE ON MYSELF IS MY SON,
GRANDSON AND FATHER AND MOTHER
AND MY GRANDSON, WILLIAM,
COMPLETED FIVE GENERATIONS.
MY GRANDMOTHER IS ACTUALLY
ALMOST 88 YEARS OLD.
SO VERY RARE WE COULD GET A
FIVE-GENERATION PICTURE.
SO, YEAH, I'M HERE REPRESENTING
SIOUX TRIBE AND OUR INDIAN
COUNTRY IN THE UPPER PENINSULA
AND EXCITED TO BE HERE AND
BREAKING GLASS CEILINGS AND
MOVING MOUNTAINS.
>> SORRY.
IT'S A LITTLE BIT LATE.
>> I'VE WORKED ON THE COUNCIL OF
BIO COLONIALISM AND LOOK AT THE
INTERSECTION OF GENETIC RESEARCH
AND PROPERTY RIGHTS AND TRASHL
KNOWLEDGE AND SO ON.
AT THE GLOBAL LEVEL WITH
CONVERSATIONS OF INTELLECTUAL
PROPERTY ORGANIZATION.
THE U.N. CONVENTION ON
BIOLOGICAL DIVERSITY AND IN THE
WORK WITH THE NORTHERN AMERICAN
INDIGENOUS PEOPLES CAUCASIAN AND
THIS REMINDS ME A LITTLE BIT OF
THE U.N. PUSHING BUTTONS TO
SPEAK.
THE CENTER OF MY WORLD IS REALLY
MY 10-YEAR-OLD GRANDDAUGHTER.
SHE IS A POW-WOW GIRL NORTHERN
TRADITIONAL BUCK SKIN DANCER AND
JINGLE DANCER AND WE SPEND OUR
TIME ON THE ROAD A LOT AND I'M A
REGALIA MAKER AND ROAD CREW AND
PRIMARY TAKER FOR HER AND SHE'S
10 YEARS OLD NOW.
THANK YOU.
>> GOOD MORNING.
I'M VANESSA AND DENE AND I'M
ENROLLED NAVAJO AND ON MY
MOTHER'S SIDE I'M WINTU AND THE
WIFE THERE AND WE WERE IN HOMER
ALASKA.
TOMMY IS FROM THE BRISTOL BAY
AREA IN SOUTHWEST ALASKA.
I'M BASED IN ANCHORAGE AS A
SENIOR RESEARCHER AT SOUTH
CENTRAL FOUNDATION AND I'VE
WORKED FOR THE ALASKAN NATIVE
PEOPLE IN THE REGIONAL AND
STATEWIDE FOR THE PAST 25 YEARS.
MY WORK IS IN MENTAL HEALTH
DEVELOPMENT OF HEALTH PROGRAMS
AND DISCUSSING WHAT WE'RE
DISCUSSING TODAY, HOW DO WE
UPHOLD THE SOVEREIGNTY OF OUR
FEDERALLY RECOGNIZED TRIBES AND
ALSO GIVEN THAT I'M FROM A
TERMINATED TRIBE UP IN NORTHERN
CALIFORNIA AND YOU CAN SEE SOME
OF MY RELATIVES THERE IN THE
BLACK AND WHITE PHOTO TAKEN IN
SAN FRANCISCO.
THIS IS FROM OUR WINTU PEOPLE
AND SEVERAL OF MY GRANDPARENTS
ARE THERE IN THE PHOTO IN THE
CENTER.
I'M ALSO HERE TO UPHOLD OUR
RIGHTS OF THOSE OF US THAT DON'T
HAVE THAT FEDERALLY RECOGNITION.
I'M CURIOUS HERE IN THESE
CONVERSATIONS HOW TO DISCUSS,
HOW TO DESCRIBE AND HOW TO
PROTECT THE RIGHTS OF OUR PEOPLE
ENROLLED AS WELL AS UNENROLLED
WHEN WE HAVE NO FEDERAL
RECOGNITION STATUS BUT STILL
THAT'S THE VALUE AND NEED TO
HONOR AND RESPECT OUR DATA AND
THE VARIOUS AND VARIED VALUES OF
VARIOUS PEOPLES HERE.
SO SO, THAT BRINGS ME TO THIS
CONFERENCE HERE.
I'M REALLY GRATEFUL TO BE HERE
WITH YOU ALL.
MANY HAVE BEEN MY LONG TIME
FRIENDS, LONG TIME MENTORS IN
THE WORK AND I'VE LOOKING
FORWARD TO GETTING TO KNOW THOSE
I HAVE NOT YET.
THANK YOU FOR THE OPPORTUNITY.
>>
[SPEAKING NON-ENGLISH]
I BRING THIS LEI.
WE HAD A RESEARCH SUMMIT ON THE
ISLAND AND I BRING HELLO TO ALL
OF YOU AND LOOK FORWARD TO
MEETING ALL OF YOU.
I WANTED TO SPEAK ABOUT MY
HUSBAND WHEN PASSED AWAY LAST
YEAR IN JULY ON THE CANOE WITH
ME AND THE PICTURE WITH ALL THE
PEOPLE IS PART OF A GROUP
REFURBISHING SEAWEED IN OUR
COMMUNITY.
>>
[SPEAKING NON-ENGLISH]
WHEN I WAS ASKED TO INTRODUCE
MYSELF I FIGURED THE MOST
IMPORTANT THING WOULD BE TO TALK
WHERE I'M FROM.
MY ANCESTORS CAME FROM THE BIG
ISLAND AND OAHU AND BY SHOW OF
HANDS HOW MANY PEOPLE HAVE BEEN
TO HAWAI'I?
I FIGURED.
PART OF MY FAMILY IS FROM MAUI
AND OHANA AND MY ANCESTORS WERE
OCEAN VOYAGERS.
WE'RE CANOE PEOPLE AND WE'RE
OCEAN PEOPLE.
SO WE'RE USED TO BEING IN THE
WATER.
IT'S FISH OUT OF WATER HERE,
KARINA.
I'M BORN AND RAISED IN OAHU.
FROM A LARGE EXTENDED OHANA AND
FIRST PHYSICIAN IN MY FAMILY.
I'VE HAD THE PRIVILEGE OF BEING
AROUND QUITE A LONG TIME AND
KNOW MANY OF THE PEOPLE HERE.
I'M THE FIRST CHAIR OF THE
DEPARTMENT OF HAWAIIAN AND I
LOVE DOING RESEARCH AND THAT'S
ANY FIRST PASSION BUT I'M AN
ENDOCRINOLOGIST AND DO CLINICAL
EPIDEMIOLOGY WORK AND HEALTH
DISPARITY RESEARCH AND HAPPY TO
SEE SO MANY PEOPLE INDIGENOUS
PEOPLE WORKING IN THIS FIELD.
IT WAS KIND OF LONELY IN THE
BEGINNING.
I'M HAPPY TO BE AROUND SO MANY
FRIENDS AND COLLEAGUES KNOWN AND
UNKNOWN TO ME.
I'M THE FIRST PROFESSOR OF
NATIVE HAWAIIAN HEALTH AT THE
SCHOOL OF MEDICINE AT THE
UNIVERSITY OF HAWAI'I AND HAD 30
YEARS OF FUNDING AT THE
UNIVERSITY OF FUNDING FROM THE
NIH AND MY GOAL REALLY MY
PROFESSIONAL ROLE IS TO SUPPORT
IS THE NEXT GENERATION OF BIO
AND CLINICAL SCIENTISTS.
I'M A NATIVE HAWAIIAN, THIRD
GENERATION CHINESE AND A
PHYSICIAN SCIENTIST AND OCEAN
VOYAGER.
SO WHEN I RETIRE, MY HOPE IS
I'LL BE ON A CANOE GOING AROUND
THE WORLD.
SO MY I'M A MOM OF TWINS AND TWO
OTHER BOYS MY PARTNER IS DR. TED
MAW FROM ALASKA WHO COULDN'T BE
HERE BECAUSE OF OUR TWINS AND I
LIVE IN PAUOA PICTURED THERE
BACK IN THE DAY WHEN IT WAS AN
AGRICULTURAL VALLEY AND THAT'S
OUR ILI.
WE'RE HERE.
I'M HERE REALLY TO WATCH AND
LISTEN AND TAKE IN SOME OF THE
WORK ALL OF YOU HAVE BEEN DOING
OVER THE YEARS AND LEARNING FROM
THAT AND THE ISSUE OF DATA
SOVEREIGNTY IS OUR NEW NIH
MOSAIC COHORT IN HAWAI'I.
WE'RE JUST GETTING OFF THE
GROUND AND WOULD LOVE TO LEARN
FROM YOU AND THE PERSPECTIVES
YOU BRING.
OUR STUDY'S CALLED THE HEALTH
LEGACY STUDY.
WE NEED POLICIES URGENTLY AND
HAVE A NEW NATIVE HAWAIIAN
PACIFIC ISLANDER OFFICE AT NIMHD
AND ARE SEARCH OR NIMHD IS
SEARCHING FOR ITS FIRST DIRECTOR
AND I THINK CAYLA IS PART OF
THAT AND MAHALO FOR THAT.
>> I GUESS I FAILED THE TEST.
I TRIED TO PUT EVERYTHING ON ONE
PAGE.
YOU CAN'T SEE THAT.
>>
[SPEAKING NON-ENGLISH]
I WAS BORN AND RAISED ON THE
ISLAND ON THE WEST SIDE AND I'M
A BIO MEDICAL RESEARCH AND
EPIGENETICIST AND FOCUS ON
UNDERSTANDING GENE ENVIRONMENT
INTERACTIONS THAT UNDER LIE
DISEASE AND DISPARITIES UNDER
THE LENS OF OMICS AND GENETICS
RESEARCH INCLUDING MICROBIOME
RESEARCH AS WELL.
I'M PROUD OF A DIVERSE,
ETHNICALLY DIVERSE INCLUDING
HAWAIIAN STUDENTS HOPEFULLY
RAISING THE NEXT GENERATION AND
RAISING ISSUES BY BRIDGING THE
GAP BETWEEN BASIC SCIENCE AND
CLINICAL RESEARCH AND
TRANSLATIONAL RESEARCH.
I'M REALLY VERY EMOTIONAL TODAY
BEING HERE AMONGST ALL OF AND
GRATEFUL FOR THE OPPORTUNITY.
I STARTED MY WORK AT NIH AND
PREDOCTORAL YEARS AND CONTINUED
OVER MY POSTDOCTORAL YEARS SINCE
1999 AND THE FIRST GATHERING
WITH INDIGENOUS PEOPLES IN ONE
PLACE ALL TOGETHER ON THE CAMPUS
SO I'M HAPPY ABOUT THAT TO SEE
THAT STARTING TO HAPPEN.
I REMEMBER JOINING FILLING OUT
THE HR PAPERWORK AND EVERYTHING
AND YOU HAVE TO FILL OUT RACE
AFFILIATION AND EVERYTHING.
THERE WAS NO NATIVE HAWAIIAN ON
THE LINE AT ALL.
IT CLEARLY WAS WE WERE NOT KNOWN
AND I'M STARTING TO SEE IMPROEFT
IMPROVEMENTS THERE AND STILL
HAVE WORK TO GO AND GRATEFUL TO
GATHER AND HELPING ADDRESS THE
ISSUES ON THE POLICY LEVEL AND
ENABLE THE RESEARCH TO BE
EFFECTIVE IN AND HOW THAT CAN
INTEGRATE IN THE JUST BE
SEPARATED FROM BUT INTERTWINED
OUR CULTURAL PRACTICES AND
COMMUNITY-BASED PRACTICES AND
CULTURAL KNOWLEDGE.
MY GREAT GRANDMOTHER ON THERE
YOU CAN'T REALLY SEE WAS A
LEADER IN HER COMMUNITY,
RESPECTED ELDER AND HAWAIIAN
MEDICINE HEALER AND TAUGHT ME
EVERYTHING I KNEW ABOUT HAWAI'I
AND ITS ROOTS AND HISTORY AND IN
THAT PROCESS I WAS INSPIRED BY
HER WORK BECAUSE I FELT STRONGLY
THAT THIS RELATIONSHIP THAT WE
HAVE AS A PEOPLE IS HEALING.
THE DESCRIBED IT AS TAKING CARE
OF LAND AND IT THE TAKE CARE OF
YOU NOT ONLY AT THE TIME BUT FOR
GENERATIONS TO COME.
IT'S VERY RESOUNDING CONNECTIONS
WITH ALL INDIGENOUS AND THAT
BROUGHT HOME TO ME EVEN IN THE
WORK I DO IN EPIGENETICS BECAUSE
IT'S ANOTHER WAY OF LOOKING AT
THE WORLD FROM THAT POINT OF
VIEW AND THE INTERCONNECTIVITY
FROM THAT VIEW CAN STRENGTHEN
OUR PRACTICES BY INCLUDING
COMMUNITY AND CULTURAL KNOWLEDGE
IN THE PROCESS AND ELEVATES THE
SCIENCE TO A POINT WE ALREADY
KNEW AND WERE WONDERFUL LEADERS
IN RESEARCH AND SCIENCE AND SO
MY PERSONAL GOAL IS TO BRING
THAT BACK TO OUR COMMUNITY AND
BE ABLE TO RAISE THAT NEXT
GENERATION WITH THAT PERSPECTIVE
SO THE RESEARCHER IS DONE BY US,
FOUR US AND OUR KNOWLEDGE NOT
JUST IN A SEPARATE PROCESS.
LOOKING FORWARD TO OUR
DISCUSSION AND MAHALU.
>>
[SPEAKING NON-E
[SPEAKING NON-ENGLISH]
THAT'S MY HOMETOWN RIGHT THERE.
I CAN SEE MY DAD'S HOUSE.
THOSE ARE MY PARENTS.
I FORGOT I PUT ANIMATION, HOT
DANG.
IN THE CORNER IS MY DAD'S DAD
WITH HIS DOING SLED TEAM AND SON
THE BOTTOM LEFT IS MY GRANDMA
AND DAD AS A BABY THERE.
MY FAMILY BUILDS SKIN BOATS AND
THAT'S MY UNCLE AND WE DON'T
HAVE DOING TEAMS ANYMORE AND
WE'RE -- DOG TEAMS AND WE'RE
TIGHTLY CONNECTED TO THE WATER
AND LAND AND I PUT IN A TON
ABOUT MY RESEARCH AND I FEEL WE
DON'T HAVE TIME AND I'M A
MICROBIOME RESEARCHER AND I
DIDN'T WORK WITH INDIGENOUS
BECAUSE OF THE DATA ISSUES AND I
LOOK AT POPULATION VARIATION IN
THE MICROBIOTA AND FIGURE OUT
HOW THE MICROBES ARE AFFECTING
DIFFERENT POPULATIONS OF FISH.
I'M AT THE UNIVERSITY OF
CONNECTICUT.
AN ASSISTANT PROFESSOR AND MY
HANDS ARE SWEATING.
I'M GOING TO STOP TALKING NOW.
THANK YOU.
>>
[SPEAKING NON-ENGLISH]
THANK YOU SO MUCH FOR INVITING
ME.
MY FAMILY IS ON THE RIGHT.
AS THE SAYING GOES YOU'RE ASKED
WHO ARE YOU FROM, AND ON THE
LEFT WHO YOU WALK WITH, I'LL
TELL YOU WHO YOU ARE.
I'VE WALKED MANY YEARS WITH A
TRIBE AND BEING A PUBLIC HEALTH
PRACTITIONER AND RESEARCHER AND
BE IN SERVICE TO THE TRIBE OF
NATIVE NATIONS IN THE U.S. AS
WELL AS TRIBAL ORGANIZATIONS.
I'M AN ASSOCIATE DIRECTOR WITH
SEVEN DIRECTIONS.
BUILDING OUT AN INDIGENOUS
SYSTEMS ALIGNMENT PROGRAM
INCLUDING DATA STEWARDSHIP AND
ALSO A NEWLY APPOINTED ASSISTANT
RESEARCHER, ASSISTANT PROFESSOR.
I'VE ALWAYS FED INTO THE
PRACTICE.
I HAVE A DRPH.
SO INDIGENOUS DATA SOVEREIGNTY
HAS BEEN HEART OF THE WORK SINCE
MY FIRST NIH RESEARCH WAS WITH
THE ARCH NARCH DOING TRADITIONAL
HEALING MANAGEMENT STUDY FOR
DIABETES.
SO I HAVE BEEN A MEMBER OF THE
U.S. INDIGENOUS DATA SOVEREIGNTY
NETWORK FOR MANY MANY YEARS
REVIEWING THE CARE PRINCIPLES IN
THE EARLY TIMES.
THAT REALLY COMING FROM A NEED
TO BE ABLE TO DO OUR PRACTICE
AND TO HAVE MEANINGFUL DATA AND
GROUNDED IN WHAT I WAS LEARNING
NOT ONLY FROM MY OWN COMMUNITIES
BUT AS A TRIBAL EMPLOYEE WITH
THE TRADITIONAL HEALING PROGRAM
AND THE PUBLIC HEALTH AT THE
HEALTH CENTER AT THE DEPARTMENT
TRYING TO FLUSH OUT TRIBAL DATA
SYSTEMS INFRASTRUCTURE AS WELL.
I'M KIND OF STARTING TO BUBBLE
BUT HAVE A LONG HISTORY FOR THE
WORK AND PASSION FOR IT AND
JOINED THE NETWORK FOR THE
COLLABORATORY FOR INDIGENOUS
DATA GOVERNANCE AND MOVING INTO
THE POLICY SPACE WITH THE
ASPIRATION FOR DOING THE WORK IN
RECOGNITION FOR ALL OF OUR
INDIGENOUS PEOPLES.
AND THAT'S ME.
THANK YOU.
>> GOOD MORNING.
MY NAME IS MYRA PARKER.
I'M FROM A RESERVATION IN NORTH
DAKOTA AND FROM THE UNIVERSITY
OF WASHINGTON SCHOOL OF MEDICINE
AND THE DIRECTOR OF SEVEN
DIRECTIONS WHICH IS A TRIBAL
PUBLIC HEALTH INSTITUTE BASED AT
U-W.
IT'S A PRIVILEGE TO BE WITH YOU
ALL.
THANK YOU FOR THE INVITATION.
WE'VE BEEN WORKING ON SORCHT
ISSUES IN DATA OWNER --
SOVEREIGNTY ISSUES AND DATA
OWNERSHIP AND I WAS PART TRIBAL
COUNCIL OF ARIZONA NARCH, NATIVE
AMERICAN RESEARCH CENTER FOR
HEALTH.
PART OF OUR FUNDING REQUIREMENT
WAS WE HAVE CONTRACT WITH THE
UNIVERSITY OF ARIZONA.
THIS IS IN THE EARLY 2000s
AROUND DATA OWNERSHIP.
AND IT TOOK US 18 MONTHS TO
NEGOTIATE THAT WITH THE
UNIVERSITY OF ARIZONA.
THEY WEREN'T REALLY THRILLED
ABOUT THAT.
IT'S EXCITING TO BE HERE TO TALK
ABOUT POLICIES THAT CAN
HOPEFULLY IDENTIFY THAT AND
STREAMLINE THE PROCESS SO WE
DON'T HAVE TO RECREATE THE WHEEL
EVERY TIME WE WANT TO DO
RESEARCH.
THANK YOU.
>>
[SPEAKING NON-ENGLISH]
>> I'M RETIRED HERE AT NIH FOR
20 YEARS.
I SPENT FIVE YEARS AT HHMI.
I TEACH ONE CLASS AN ETHICS
CLASS AT THE UNIVERSITY OF
OREGON.
ONE CONNECTION TO THIS WORK IS I
SERVED ON THE NHGRI A NUMBER OF
YEARS.
THANK YOU.
>> I'M THE ORIGINATOR OF THE
NARCH PROGRAM.
AS
>> I'M A PROFESSOR AT THE
UNIVERSITY OF COLORADO IN THE
CENTERS FOR AMERICAN INDIAN
ALASKA NATIVE HEALTH.
I'VE BEEN THERE 27 YEARS.
I STARTED AS A PREDOCTORAL
CLINICAL PSYCHOLOGY INTERN AND
WILL BE RETIRING FROM THERE AT
THE END OF NOVEMBER AND JOINING
THE INSTITUTE OF NEBRASKA IN
OMAHA.
I AM VERY EXCITED FOR EXPANDING
OUR RELATIONAL NET IN THE WORK
WE DO ON BEHALF OF TRIBAL
COMMUNITIES WITH RESPECT TO
CHILDREN'S EARLY DEVELOPMENT.
I'M A CITIZEN OF A TRIBE AND THE
PICTURE I CHOSE ON THE LEFT
THOUGH CAYLA ADVISED NOT TO
OVERTHINK THE SLIDE I THOUGHT
ABOUT WHAT PICTURES TO INCLUDE
AND THE PICTURE ON THE LEFT IS
PICTURE TAKEN AFTER LAST YEAR'S
NATIVE CHILDREN'S RESEARCH
EXCHANGE CONFERENCE.
IT'S A CONFERENCE WE HOST.
WE DIRECT THE NRRE PROGRAM AT
THE UNIVERSITY OF COLORADO
FUNDED BY NIDA FOR A LONG TIME.
THIS IS MY ACADEMIC FAMILY AND
MY ACADEMIC HOME AND A NUMBER OF
YOU AROUND THE TABLE ARE PART OF
THAT FAMILY.
AND OUR WORK WITH TRIBAL
COMMUNITIES HAPPENS IN
RELATIONSHIP AND THROUGH
RELATIONSHIP AND SO THESE
RELATIONSHIPS THAT I'VE
CULTIVATED WITH PRACTITIONERS,
RESEARCHERS EARLY CAREER
SCHOLARS, LATER CAREER SCHOLARS,
PEOPLE WHO STUDY EARLY
DEVELOPMENT, ADOLESCENT
DEVELOPMENT, THEY'RE THE
GREATEST BLESSING OF MY LIFE
REALLY AND I JUST, YEAH, I'M
HERE TO BE IN RELATIONSHIP WITH
ALL OF YOU AND THINK THROUGH
THESE IMPORTANT ISSUES WITH
RESPECT TO INDIGENOUS DATA
SOVEREIGNTY.
THANK YOU.
>> GOOD MORNING, AGAIN.
BOB WASACKE AND I'M OKLAHOMA.
THERE ARE 39 TRIBES THAT HAVE
THEIR HEADQUARTERS IN OKLAHOMA.
I THINK MAYBE ONLY A COUPLE OF
WHICH ARE ACTUALLY ORIGINAL AND
BEEN RELOCATED FROM OTHER PARTS
OF THE COUNTRY.
OKLAHOMA IS UNIQUE IN THE WAY
WE'RE CONFIGURED AS FAR AS OUR
TRIBES GO.
MANY TRIBES WE'RE NOT
HOMOGENEOUS AT ALL AND I WORK
WITH THE CHICKASAW NATION IN
OKLAHOMA BUT MY HOMELAND IS FROM
THE YELLOW PART THERE IN
SOUTHWESTERN OKLAHOMA.
I WANTED TO SHARE A FEW PICTURES
AND MY DAD IS IN THE LOWER
CORNER.
THE ONE NEXT TO HIM ARE MY GREAT
GRANDPARENTS.
THIS IS PADLOCK WAS CHANGED SOME
MAY KNOW THE NAME PULAH WAS A
WELL KNOWN PHOTOGRAPHER AND HAD
SKWHIBTS -- EXHIBITS HERE AT
THE SMITHSONIAN AND THERE'S MY
GREAT GRANDMOTHER AND MARRIED
SISTERS AND HAD ANOTHER WIFE AND
THERE'S NOT MANY PICTURES OF
THEM TOGETHER THEY PROBABLY HAVE
THEM SEPARATE.
AND WE SPENT TIME AT MY
GRANDPARENTS HOUSE AND THEY
CALLED HER GRANDMA AND SHE LIVED
IN THAT HOME AND SHE WAS SCARY
WHEN I WAS 5 OAR -- OR 6 YEARS
OLD AND THEY'RE MOTHER WAS A
CAPTAIN FROM MEXICO.
THEY WERE SPANISH DESCENT BUT
WERE BLOND HAIRED AND BLUE EYED
AND THAT'S MY GRANDFATHER HAD
TWO WIVES AND I'M GLAD THAT
TRADITION STOPS.
THAT'S MY DAD'S FATHER AND MY
GRANDMOTHER AND THAT'S ALSO MY
GRANDFATHER ON THE FAR LEFT.
HE WAS A U.S. DEPUTY MARSHAL FOR
MANY MANY YEARS IN CENTRAL AND
WESTERN OKLAHOMA.
SO, WHAT I'M DOING NOW IS THE
DIRECTOR OF RESEARCH OF PUBLIC
HEALTH FOR THE CHICKASAW NATION
AND VERY ACTIVE IN IRB WORK.
I'M A REGISTERED NURSE AND BIO
ETHICIST AND I'M AT THIS MODERN
FACILITY AND IT'S VERY LARGE AND
WE'RE GETTING TO BUILD A NEW ONE
OUTSIDE OF OKLAHOMA CITY ON
CHICKASAW LAND WILL BE TRIPLE
THE SIZE OF THIS ONE AND WILL BE
A HUGE MEDICAL CENTER.
THIS IS MY FAMILY.
MY WIFE, PEGGY, AND DAUGHTER
LILY.
MY DAUGHTER WAS 16 WHEN I LEFT
SO I'M NOT LOOKING FORWARD TO
GOING BACK ANYTIME LEFT AND
HOPING THEY'RE NOT KILLING EACH
OTHER WHILE I'M GONE.
WE'LL SEE.
ANYWAY, IT'S GREAT TO BE HERE.
I WORK WITH A LOT OF MY
COLLEAGUES HERE THAT WE'VE
WORKED IN THE CENTER FOR ETHICAL
INDIGENOUS RESEARCH AND IT'S
ALWAYS GREAT TO BE PART OF A
DISCUSSION WHEN WE'RE LOOKING AT
SOVEREIGNTY AND RESEARCH
PRINCIPLES WITHIN THE CONTEXT OF
SOVEREIGNTY.
THANK YOU.
IT'S GOOD TO BE HERE.
>> I'M SOMEONE WHO SHOWS UP TO
THE MOVIE EARLY FOR THE TRAILERS
AND THESE SLIDES ARE AWESOME.
I FEEL LIKE I'M SEEING A BUNCH
OF MOVIE TRAILERS.
I'M KATIE, I GREW UP IN CORDOVA,
ALASKA AND MY MOM MET A GUY WHO
LIVED ALASKAN AND LATER HAD A
6-MONTH-OLD AND ST. BERNARD AND
TWO STEP KIDS AND DRIVING UP.
I'M FROM PRIMARILY A FISHING
COMMUNITY.
I LIKE TO SAY WE HAVE THE
TRIFECTA OF WEIRD AND I MEAN
THAT IN THE BEST POSSIBLE WAY.
WE'RE A SMALL RURAL COMMUNITY
AND IN ALASKA AND HAVE NO ROADS
AND KEEP THE RIFFRAFF OUT.
I ALSO SPENT 20 YEARS IN
WASHINGTON STATE.
I FEEL LIKE IT'S APPROPRIATE TO
SAY THAT MY FIRST YEAR IN
SEATTLE WAS ALSO DR. WALTER'S
FIRST YEAR AND I WAS IN MY
SECOND QUARTER IN MY MASTER'S
AND SURVIVED A QUARTER OF PEOPLE
DESCRIBING FEELINGS AND
DISCLOSED PERSONAL STUFF AND
WASN'T SURE I SIGNED UP FOR THE
RIGHT THING AND I WENT TO ALASKA
FOR THE WINTER BREAK AND
DR. WALTERS WAS MY RESEARCH
METHODS PROFESSOR AND ONE METHOD
WAS ASKING PEOPLE TO WRITE DOWN
WHAT THEY WERE LOOKING FORWARD
TO IN THE CLASS AND I REMEMBER
SOMEONE SAYING I'M LOOKING
FORWARD TO A CLASS THAT'S NOT
ABOUT POLITICS.
AND DR. WALTERS SAID IF YOU
THINK RESEARCH ISN'T ABOUT
POLITICS YOU'RE IN THE WRONG
PLACE.
I THOUGHT THIS MIGHT BE
INTERESTING.
SO DEPENDING ON THE DAY OR HOUR
I MIGHT THANK YOU OR CURSE YOU,
KARINA, BUT THAT'S WHAT LANDED
ME IN THIS PLACE WE'RE IN NOW.
I AM A CITIZEN OF THE CHOCTAW
NATION OF OKLAHOMA ON MY MOM'S
SIDE AND AN ASSISTANT PROFESSOR
AT THE UNIVERSITY OF MICHIGAN.
AND ON THE NEXT SLIDE ARE THINGS
TAKING UP BRAIN SPACE THESE
DAYS.
I WORK IN FAIR BANKS WITH NATIVE
FOLKS WHO HAVE CRIMINAL LEGAL
SYSTEMS INVOLVEMENT.
WE'RE INTERESTED IN
UNDERSTANDING SOME FACTORS THAT
LEAD TO INVOLVEMENT AND ALSO HOW
TO ADAPT PROGRAMS FOR CONTEXT TO
REDUCE RECIDIVISM.
WE'RE TRYING TO DOCUMENT WHAT
GETS FOLKS INTO SYSTEMS AND HELP
EXITING THE SYSTEMS.
I WORK WITH A COLLEAGUE DR
DR. IVANIC AT THE UNIVERSITY OF
COLORADO PART OF AN INDIAN
COMMUNITY AND USE SOCIAL NETWORK
ANALYSES TO UNDERSTAND
PROTECTION TO SUICIDE AND
SUBSTANCE MISUSE AND WE'RE
STARTING AN RO1 THAT WILL BE A
LONGITUDINAL STUDY TO LOOK AT
OPPORTUNITIES FOR PREVENTION AND
ALSO WORK IN FAIRBANKS IN A
NATIVE CHARTER SCHOOL DOING
SIMILAR WORK AROUND SOCIAL
NETWORKS WITH ALASKAN NATIVE
STUDENTS AND I'M WORKING IN
MICHIGAN WITH UNITING THREE
FIRES AGAINST VIOLENCE A
STATEWIDE TRIBAL COALITION
HONORING SERVICES AMONG TRIBAL
VICTIM ADVOCACY PROGRAMS.
EXCITED TO HEAR THE REST OF THE
TRAILERS AND LOOK FORWARD TO THE
CONVERSATION.
>>
[SPEAKING NON-ENGLISH]
>> I FORGOT TO PUT MY NAME ON
THE SLIDE.
I'M FROM THE NAVAJO NATION.
MAY FAMILY'S FROM ARIZONA AND
INCLUDED THEM ON THE UPPER LEFT,
DAD, BROTHER AND MOM.
MY MOM IS BLIND FROM A DISEASE
AND MY GRANDMA DID SOMETHING
TABOO AND IT WAS A DIFFERENT WAY
OF KNOWING AND INSPIRED ME TO
THINK ABOUT WESTERN SCIENCE AND
GENETICS AND NAVAJO UPBRINGINGS
AND THAT'S A PICTURE.
I WENT TO COLORADO COLLEGE AND
MET MY FIANCEE THERE WHO ALSO
WORKS IN THE WET LAB SPACE AND
STUDIED MICROBIOLOGY AND
ANTHROPOLOGY AND NOW A
FOURTH-YEAR PD CANDIDATE IN THE
HUMAN CHEMICAL AND GENETICS
PROGRAM AND THE CLAW INDIGENOUS
GENOMICS AND ETHICS LABORATORY.
KATRINA WAS ASKED TO BE HERE AND
COULDN'T MAKE IT SO I WAS ASKED
AND I'M HONORED TO MEET OUR
COLLABORATORS IN PERSON AND TO
BE PART OF THE CONVERSATIONS.
AND KATRINA HAS AN ANNUAL LAB
CAMPING TRIP WHICH I DIDN'T GROW
UP CAMPING SO IT'S A GREAT
OPPORTUNITY TO BE OUTDOORS AND
GET TO KNOW EACH OTHER BETTER.
RESEARCH SIDE OF THINGS, I
STUDIED GENETIC VARIATION OF
NICOTINE METABOLISM AND WORKING
WITH THE STRONG HEART STUDY AND
HAVE SEVERAL PROJECTS WITH THE
NAVAJO NATION AS WELL LOOKING TO
GATHER PERSPECTIVES FROM
DIFFERENT INTEREST HOLDERS ON
THEIR VIEWS ON GENETIC RESEARCH.
IT'S GREAT TO WORK WITH TRIBAL
NATIONS INCLUDING MY OWN AND
GRATEFUL TO BE HERE AND HEAR
FROM YOU ALL.
THANK YOU.
>>
[SPEAKING NON-ENGLISH]
I'M EVAN WHITE SHONNI FROM
OKLAHOMA AND WORK AT THE BRAIN
INSTITUTE WORKING TO TAKE THE
TOOLS OF TRANSLATIONAL AND
NEUROSCIENCE AND MAKE THEM
ACCESSIBLE TO OUR NATIVE
COMMUNITIES IN AND AROUND
OKLAHOMA.
RIGHT NOW I WORK PRIMARILY WITH
THE SHONI TRIEP.
THERE'S THREE DIFFERENT ONES IN
OKLAHOMA.
AND THEY USED TO BE CALLED THE
SHAWNEE AND I'M DES CRCENDED FR
THE TRIBE AND DEF
MY BACKGROUND IS A CLINICAL
PSYCHOLOGIST AND HOLD A LICENSE
IN OKLAHOMA AS WELL AND I'M
HONORED TO BE HERE AMONG ALL OF
YOU.
MANY OF MY HEROES I ONLY MET
THROUGH YOU'RE WRITINGS ARE IN
THE ROOM.
SO HAPPY TO BE PART OF THE
CONVERSATION AND HOPEFULLY HAVE
SOMETHING TO OFFER.
>> I'M SUFFERING POWER POINT
FATIGUE AND
[SPEAKING NON-ENGLISH]
CURRENTLY I'M ASSISTANT
PROFESSOR AT ARIZONA STATE
UNIVERSITY IN THE SCHOOL OF
HEALTH SCIENCES.
I'M TRAINED AS A HUMAN GENETIC
EPIDEMIOLOGIST WITH A MASTER'S
IN PUBLIC HEALTH AND BIOETHICS.
ORIGINALLY DID MY Ph.D. AT
VANDERBILT AT THE SAME TIME
WHICH I DON'T RECOMMEND IT BUT
THERE'S NO STATE OR FEDERALLY
RECOGNIZED TRIBE SO MY LIFE LONG
DREAM WAS AFTER TRANSITIONING
FROM A CAREER AT THE BENCH WHERE
I PATENTED SEVERAL THINGS AND
DID CANCER BIOLOGY, ETCETERA AND
FOR A BRIEF MOMENT I LEFT
HOPKINS TO GO BACK TO ASU TO
PURSUE A DEGREE AS A LAWYER
BECAUSE IF YOU'RE DENE AND GO TO
SCHOOL YOU BECOME A DOCTOR OR
LAWYER OR ENGINEER OR TEACHER
NOT A SCIENTIST.
SO I WAS PURSUING MY MASTER'S IN
BIOETHICS AND IT WAS UPSETTING
TO REALIZE HOW COLONIAL GENOMICS
WAS.
BEING IN THE SMACK DAB OF THE
BIG DATA ERA THINKING ABOUT THE
INJUSTICES AND COLLECTIVIZING
OUR GENOMIC DATA FELT LIKE A
WORSE SCALE THAN THE BENCH WITH
CELL LINES AND THAT MADE ME
BECOME ENRAGED AND WANTED TO
PURSUE A DEGREE WHICH IS NOT A
GOOD REASON TO BEGIN BUT A LONG
TERM CAREER ENDEAVOR BUT I'M
GRATEFUL BECAUSE IT EVENTUALLY
BROUGHT ME TO THE NORTH DAKOTA
AND SOUTH DAKOTA WORKING WITH A
COUPLE TRIBAL COMMUNITIES THERE
WHERE I'M NOW A COMMUNITY WITH
MANY OF MY FRIENDS, COLLEAGUES
AND INDIGENOUS GENOMICISTS SOME
HERE AND CO-FOUNDED THE DATA
CONSORTIUM AND JOE WHO IS NEXT
I'LL LET HIM EXPAND MORE ON
THAT.
ALSO I THINK ONE OF THE THINGS
THAT I'D LIKE TO TALK ABOUT MORE
IS NOT JUST COLLECTIVIZING
INDIGENOUS DATA SOVEREIGNTY BUT
MOVING TOWARDS SOVEREIGNTY AND
THERE'S A BOOK COMING OUT FROM
THE AMERICAN INDIAN POLICY WE'RE
AT A POINT WHERE INDIGENOUS
COMMUNITIES MEMBERS ARE BUILDING
DIGITAL DATA INFRASTRUCTURES AND
WE'RE DOING THE RESEARCH FOR
OURSELVES BY OURSELVES AND WHEN
WE THINK ABOUT DATA AS THE
RESOURCE THAT IT IS WE ARE
BUILDING SOMETHING THAT IS
SUSTAINING FOR COMMUNITIES FOR
RESEARCH CAPACITY AND TRAINING
AND REDUCING OUR RELIANCE ON
FEDERALLY SPONSORED -- SORRY,
NIH AND OTHER COLONIALLY
MEDIATED DATA BACKBONES.
THAT'S THE FUTURE I'M HOPING OUR
NEXT GENERATION WILL CONTINUE TO
MOVE FORWARD AND I THINK THAT IS
WHERE WE GET LONG SUSTAINING
CHANGES IN HEALTH.
[SPEAKING NON-ENGLISH]
>>
[SPEAKING NON-ENGLISH]
I'M FROM MEXICO.
MY FAMILY CAME TO THE UNITED
STATES IN 1910.
THE SAME TIME THERE WAS A CIVIL
WAR IN MEXICO IN THE MIDWEST
CHICAGO LAKE MICHIGAN REGION.
THEY WERE BUSTING UP UNIONS.
THEY BROUGHT A BUNCH OF
INDIGENOUS PEOPLE FROM THE ALTA
PLANO OF MEXICO TO BREAK THOSE
STRIKES AND THAT'S HOW MY FAMILY
CAME TO THE UNITED STATES.
FROM THE STATE OF MICHOCAN AND
COPPER CANYON FROM CHIHUAHUA,
MEXICO SOUTH.
I'M A LONG-TERM STUDENT.
I GRADUATE FROM LOYOLA-CHICAGO
AT THE UW MADISON FOR A LONG
TIME AT THE VETERINARY SCHOOL
AND TRANSITIONED TO THE
DEPARTMENT OF SURGERY IN MEDICAL
SCHOOL AND DID WORK IN
TRANSPLANTING AND STILL AT
HOPKINS AND EXECUTIVE DIRECTOR
AND VICE PRESIDENT OF THE BIO
DATA CONSORTIUM.
I'M WITH PEOPLE USHERING IN THE
DATA CONSORTIUM FOR THE RADX
PROJECT IN URBAN AND RESERVATION
COMMUNITIES.
WE'RE ALSO PART OF THE CELLULAR
PROCESS AND HUMAN PANGENOME
REFERENCE WITH STEPHANIE CARROLL
AND OTHERS AND PART OF BRIDGE TO
A.I. AND DIFFERENT ASPECTS
INCLUDING ETHICS AND TOOLS
BUILDING AND ALSO MATT AND I I
EXECUTING A NARCH GRANT FOR
WASTE WATER COVID SURVEILLANCE.
WE'RE NOT ONLY JUST BUILDING THE
DIGITAL INFRASTRUCTURE BUT
BUILDING THE TECHNICAL CAPACITY.
WE BUILT A CLIA LAB WITH HELP
AND GOT OUR CERTIFICATION WHICH
IS NO EASY TASK AND WE'RE TRYING
TO BUILD STUFF LOCALLY SO TRIBES
CAN HAVE MORE CONTROL OF THEIR
DATA.
THANK YOU.
>> ALL RIGHT.
THAT BRINGS US TO AN END OF OUR
INTRODUCTIONS FOR OUR INVITED
ATTENDEES.
I WANT TO THANK YOU ALL AGAIN
FOR SHARING THE INTRODUCTIONS.
IT WAS FANTASTIC TO HEAR ABOUT
YOU.
WE'LL TAKE A MOMENT TO
INTRODUCE THE REST OF THE NIH
FOLKS WHO WALKED IN THE ROOM SO
YOU KNOW WHOSE LISTENING TO YOU
TODAY AND THEN TAKE A BRIEF
BREAK BEFORE WE LET DR. WALTERS
GIVE A QUICK PRESENTATION AND
THEN WE'LL JUMP INTO OUR PANELS.
YOU'LL HAVE AN OPPORTUNITY TO
REFILL YOUR COFFEE AND GET A
SNACK AND USE THE RESTROOM
BEFORE WE REALLY LOCK IN FOR THE
REST OF DAY.
WITH THAT I'LL TURN IT OVER TO
KAYLA.
WOULD YOU LIKE TO INTRODUCE
YOURSELF.
[OFF-MIC]
>> UI'M EXCITED TO BE HERE AND
PART OF THE NATIVE PACIFIC
ISLANDER HEALTH RESEARCH OFFICE
AND HONORED TO BE HERE WITH YOU
ALL.
>> GOOD MORNING I'M KATHY PART
OF THE RESEARCH EFFORT AND
ENROLLMENT AT THE NATIONAL
INSTITUTE OF DRUG ABUSE.
WONDERFUL TO BE HERE AND EXCITED
FOR THE CONVERSATION AND EXCITED
TO BE UNDER DR. WALTERS'
LEADERSHIP AND
[OFF-MIC]
>> WE'RE A LITTLE BIT AHEAD OF
TIME SO WE'RE GOING TO TAKE A
QUICK BREAK.
THANK YOU SO MUCH FOR THOSE
INCREDIBLE INTRODUCTIONS THIS
MORNING.
I WANTED TO JUST GIVE A MOMENT
TO ALLOW OUR NEW GUESTS WHO HAVE
ARRIVED.
DO YOU WANT TO INTRODUCE
YOURSELF?
[OFF-MIC]
WE'RE ACTUALLY ON SCHEDULE.
I WANT TO JUST SAY WOW.
WE ALSO STARTED HALF HOUR EARLY.
SO, I'M GOING TO SHARE A LITTLE
BIT ABOUT WHAT WE'VE BEEN DOING
TO THIS POINT AT THE THRO OFFICE
AND THINGS WE'VE BEEN THINKING
ABOUT AND WITH OUR INTRODUCTIONS
TODAY I DON'T WANT PEOPLE TO
FEEL SHY OR EXPRESS YOURSELVES.
DON'T WORRY ABOUT NIH AND SAY
WHAT YOU NEED TO SAY.
THAT'S WHY WE'RE HERE AND I WANT
TO HEAR WHAT YOU HAVE TO SAY AND
WHAT YOU BRING TO THE
TABLE.THAT'S WHY YOU'VE BEEN
INVITED.
IT'S IMPORTANT WE HAVE
TRANSPARENT COMMUNICATION.
LET'S JUST DO IT RESPECTFULLY
BUT WE'RE COOL, PLEASE SAY WHAT
NEEDS TO BE SAID.
IT'S IMPORTANT.
OUR COMMUNITIES DEPEND ON THAT.
THAT'S CRITICAL AND WHY WE'RE
HERE.
A LITTLE BIT JUST TO
CONTEXTUALIZE AND EVEN WHEN I
TOOK THE POSITION I DIDN'T KNOW
HOW GIGANTIC NIH REALLY WAS AND
TO GIVE AN IDEA WE'RE ONE OF 16
OFFICES IN THE OFFICE OF THE
DIRECTOR AND YOU SAW DR. TARA
SCHWETZ IS OUR BOSS THE DIRECTOR
FOR STRATEGIC PLANNING AND
INITIATIVES.
I'VE BEEN HERE YEAR AND A HALF
AND IT'S TAKEN THAT LONG TO SAY
THAT.
WE WORK AND COORDINATE AND DO
COLLABORATION WITH THE 27
INSTITUTES AND CENTERS OF THE
NATIONAL INSTITUTES OF HEALTH.
YOU KNOW HOW BIG THEY ARE AND
THE NCI AND THE NATIONAL CANCER
START FOR THE INSTITUTE OF
MENTAL HEALTH OR DRUG ABUSE.
THESE ARE ALL MASSIVE
ORGANIZATIONS EVEN WITHIN THE
NIH.
NIH HAS A BUDGET OF $48 BILLION.
THE LARGEST PUBLIC HEALTH
RESEARCH PLACE IN THE WORLD AND
WE ARE FUNDED THROUGH INTRAMURAL
RESEARCH AND GIVE IT TO
COMMUNITIES OR OUTSIDE ENTITIES.
TO A COMPETITIVE GRANT RESEARCH
AT MORE THAN 2500 UNIVERSITIES,
MEDICAL SCHOOLS AND TRIBES AND
OTHER INSTITUTIONS.
ABOUT 10% OF THE NIH BUDGET
SUPPORTS WHAT'S CALL INTRAMURAL
RESEARCH CONDUCTED BY ABOUT
6,000 SCIENTISTS IN LABORATORIES
HER ON THIS CAMPUS AS WELL AS
OTHER CAMPUSES IN NORTH CAROLINA
AND MONTANA AND ROCKY MOUNTAIN
LAB, FOR EXAMPLE AND
ADMINISTRATIVE FACILITY
CONSTRUCTION, ADMINISTRATION AND
OPERATIONAL COSTS.
THAT'S A LOT OF RESEARCH GOING
ON AND A LOT OF POTENTIAL IMPACT
FOR AMERICAN INDIANS AND ALASKA
NATIVES.
WE'RE IN THE 16 OFFICES.
WE'RE LITERALLY THE SYNERGISTIC
HUB FOR ACTIVITIES AND RESEARCH
WORKFORCE DEVELOPMENT AT THE
NIH.
ANYTHING NATIVE USUALLY HITS OUR
OFFICE FIRST AND THAT INCLUDES
PROBLEMS.
PROBLEMS IN THE COMMUNITY.
WE GET THE CALL.
WE STRATEGICALLY CONSULT AND
COORDINATE AND COLLABORATE WITH
THE NIH CENTERS AND INSTITUTES
AND ALSO VERY MUCH AN OUTWARDLY
FACING OFFICE IN MANY WAYS MORE
SO BECAUSE OF THE TRUST
RESPONSIBILITY AND RELATIONSHIP
THAT WE ARE MANDATED TO UPHOLD
AND TO DO THIS THROUGH A
CULTURALLY CREDIBLE AND
MEANINGFUL INDIGENOUS DRIVEN
SCIENCE AND THIS IS ABOUT
INDIGENOUS DRIVEN SCIENCE.
NOT JUST INDIGENOUS.
IT'S NOT ENOUGH TO BE DONE BY
NATIVE PEOPLE BUT CENTERING OUR
INDIGENOUS LEADERS AND CULTURAL
KNOWLEDGES AND ALL BEING AT THE
CENTER OF THE WORK.
AND THAT'S THE REASON THE FIRST
YEAR WE HAVE INDIGENOUS
KNOWLEDGE EMPOWERING SCIENCE IS
ONE OF OUR THEMES.
IT'S ABOUT HARNESSING OUR POWER
THROUGH NIH AND DOING THAT
THROUGH FOUR MAIN ACTIVITIES.
ONE IS ADVANCING INDIGENOUS
RESEARCH WANTING TO SUPPORT MORE
RESEARCH NOT ONLY FOR OUR
COMMUNITIES BUT ONE THAT CENTERS
INDIGENOUS METHODOLOGIES AND
KNOWLEDGES AND SO FORTH.
THE OTHER ELEMENT WE DO IS TO
CULTIVATE CAPACITY.
THAT MEANS INTERNALLY AT THE NIH
WE DO A LOT OF EDUCATION AND
TRAINING AT THE NIH AND
CONSULTATION WITH OUR COLLEAGUES
TO HELP BRING THEM UP TO SPEED
ABOUT AMERICAN INDIAN PROCESSES
AND DEVELOPING A RESEARCH
WORKFORCE.
WE HAVE 1,000 Ph.D.'S IN THE
ROOM THREE WOULD BE AMERICAN
INDIAN OR ALASKAN NATIVE AND GO
INTO PRIMARILY SERVICE ORIENTED
OR SOME KIND OF SERVICE
EXPERIENCE AND FEW IN THE
RESEARCH TRACK AND NEED PEOPLE
IN THIS AND WORKFORCE IS OUR
THIRD AGENDA AND OUR OFFICE IS
RESPONSIBLE FOR HOLDING TRIBAL
CONSULTATION A GOVERNMENT TO
GOVERNMENT RELATIONSHIP WITH THE
TRIBES AND FEDERAL AGENCIES
FEDERALLY AGENCIES ARE MANDATED
TO WORK WITH TRIBES.
WE CAN'T HAVE TRIBAL COMMUNITIES
WITHOUT ACTUAL CONSULTATION
TAKING PLACE.
THAT'S FAIRLY RECENTLY PUT INTO
PLACE.
OUR OFFICE IS IN CHARGE OF THAT.
AND THEN THE PART I GET EXCITED
ABOUT IS BLAZING NEW PATHS FOR
STRATEGIC INITIATIVE.
WE'RE IN ALIGNMENT WITH THE
OTHER I.C.s THAT MAY BE ISSUES
THAT COME FROM TRIBAL LISTENING
SESSIONS.
WE HOLD LOTS OF LISTENING
SESSIONS TO HEAR WHAT THEIR
NEEDS ARE AND WHAT THEY WANT US
TO PRIORITIZE, WHAT ARE SOME OF
THE HEALTH ISSUES THAT THEY'RE
MOST CONCERNED ABOUT AND WE WORK
WITH THE I.C.s TO BEGIN TO
DEVELOP INITIATIVES AND GRANTS
AND MECHANISMS TO BE ABLE TO
FUND NEW INITIATIVES.
ONE FOR EXAMPLE THAT'S COMING UP
WE'RE HAVING A SUMMIT DECEMBER
18 TO 20th ON THE BIRDIE SCHOOL
HEALING INITIATIVE TO THINK HOW
DO WE DEVELOP A HEALTHY RESPONSE
TO WORK COLLABORATIVELY WITH OUR
COMMUNITIES TO HELP SUPPORT THEM
DEVELOPING INTERVENTIONS THAT
ARE GOING TO BE MEANINGFUL AND
IMPORTANT FOR THEIR HEALTH AND
WELL BEING NOT JUST TO ADDRESS
THE TRAUMA ELEMENTS BUT THINGS
STOLEN FROM US, LANGUAGE, THOSE
PARTS OF ELEMENTS AS PART OF OUR
HEALTH AND WELL BEING.
IF YOU'RE INTERESTED IN THAT SEE
ME AT BREAK.
HAPPY TO TALK ABOUT THAT.
WHY NOW?
WE HAVE NEW STAFF AND WE HAD
LOTS OF CALLS FOR COLLEAGUES
WAITING FOR A SHIFT IN OUR
OFFICE.
WE HAVE LOTS OF QUESTIONS ABOUT
INTERNATIONAL BIO SPECIMENS AND
REPOSITORIES, QUESTIONS HOW DO
WE RETURN DATA TO TRIBES.
WHAT DO WE DO ABOUT GENOMIC OR
GENE SEQUENCE DATA.
THAT'S HOW THE NIH IS.
OCTOPI HAVE BRAINS IN EACH THEIR
ARMS.
THAT'S WHAT NIH IS LIKE.
THEY'RE DOING THEIR OWN THING
AND PART OF THE ISSUE IS TRYING
TO MAKE SURE THE DATA PRACTICES
ALIGN WITH THE TRIBAL ORDINANCES
AND LAWS.
WE HAD TO GET EVERYBODY ON THE
SAME PAGE FOR SAFETY AND THIS IS
TIMELY BECAUSE PRESIDENT BIDEN
AND THE WHITE HOUSE RECENTLY
ISSUED EXECUTIVE ORDER 14112
FEDERAL FUNDING TO BETTER
EMBRACE OUR TRUST
RESPONSIBILITIES FOR THE TRIBAL
SELF-DETERMINATION.
THEY SAY IN THERE DATA
SOVEREIGNTY IS PART OF THE
CONVERSATION.
I WANT TO ACKNOWLEDGE THE DATA
SOVEREIGNTY WORKING GROUP AND 23
MEMBERS WITH INSTITUTES
REPRESENTS ON THAT WORK GROUP.
PART OF CARVING OUT THE POLICY.
WE HAVE NINE LISTENING SESSIONS
ACROSS THE COUNTRY WITH TRIBES
AND GET INPUT ON WHERE WE NEED
TO GO WITH RESPECT TO INDIGENOUS
DATA SOVEREIGNTY.
AND TO MAKE SURE WE'RE ALL ON
THE SAME PAGE ABOUT WHAT WE'RE
TALKING ABOUT HERE.
WE'RE TALKING ABOUT THE RIGHT OF
TRIBAL NATIONS AND INDIGENOUS
COMMUNITIES TO EXERCISE
SOVEREIGN OWNERSHIP AND SHARING,
TRANSFER, RE-USE, DISPOSITION
AND DISPOSAL OF INFORMATION
ABOUT AND FROM INDIGENOUS
POPULATIONS WHERE DATA HAS THE
POTENTIAL TO AFFECT THE WELFARE
OF TRIBAL NATIONS AND INDIGENOUS
COMMUNITIES AND VILLAGES.
WE RECOGNIZE THE CARE PRINCIPLES
DEVELOPED FROM A GROUP AROUND
THE COLLECTIVE BENEFIT AUTHORITY
TO CONTROL RESPONSIBILITY AND
ETHICS.
AND NIH AND I WANT TO PUT THIS
OUT HERE WE'RE READY BEFORE WE
START THE PROCESS FOR A DATA
SHARING GUIDANCE LED BY
COLLEAGUES IN THE ROOM HERE THAT
ACTUALLY ARE ALREADY PUT INTO
PLACE NOT ONLY HONORING
RESPONSIBILITY BUT WE HONOR THE
TRIBAL SORT OF AND FEDERAL TRUST
RELATIONSHIP IN THE ABSENCE OF
ORDINANCES AND LAWS TRIBES MAY
HAVE.
WE DON'T PENALIZE TRIBES BECAUSE
THEY HAVEN'T BEEN ABLE TO
DEVELOP THEIR INFRASTRUCTURE TO
HAVE LAWS AND ORDINANCES.
WE WILL FOLLOW THE MANDATES OF
WHAT THAT COMMUNITY SAYS IS IN
THE BEST INTEREST.
A COUPLE THINGS THAT MAKE THIS
DIFFERENT I WANT TO CALL THIS
OUT A LITTLE BIT.
GENERALLY IN RESEARCH WE ARE
EXPECTED TO FOLLOW WHAT'S CALLED
THE COMMON RULE FOR TRIBES.
AND BASICALLY IT SAYS TRIBAL
RESEARCH LAWS AND ORDINANCES
TAKE PRECEDENT AND FEDERAL
AGENCIES MUST FOLLOW THESE LAWS
IF TRIBAL LAWS AND ORDINANCES
ARE MORE RESTRICTIVE THAN THE
COMMON RULE.
I CAN TELL YOU AFTER REVIEWING A
LOT OF TRIBAL LAWS AND
ORDINANCES WE ARE MORE
RESTRICTIVE.
WE HONOR THAT IN THE ABSENCE OF
TRIBAL LAWS WE HONOR THE
SOVEREIGNTY OF THE COMMUNITIES.
ONE THING WE DO BUTT UP AGAINST
AT THE NIH I'LL PUT OUT FOR
DISCUSSION OVER THE NEXT DAY AND
A HALF IS BIO SPECIMENS ARE NOT
CONSIDERED HUMAN SUBJECTS UNDER
THE COMMON RULE BUT WE KNOW MOST
TRIBAL LAWS AND ORDINANCES
EXTEND HUMAN SUBJECTS PROTECTION
TO DE-IDENTIFIED BIO SPECIMENS
THAT MEANS FEDERAL AGENCIES ARE
EXPECTED TO ACEDE TO TRIBAL
LAWS.
IF YOU KNOW TRIBES THAT DON'T
HAVE THE LAWS IN PLACE, FOR
COMMUNITY PROTECTIONS BASICALLY
THINK ABOUT PRIORITIZING THAT.
WHAT TIES TO BIO SPECIMENS THIS
WAS A HUGE THEME ACROSS THE
BOARD AND WITH OUR COMMUNITIES,
I CAN SUMMARIZE IT IN THREE
ELEMENTS SAMPLES LIVING IN
NON-LIVING ARE RELATIONSHIPS.
THIS WAS A HUGE THEME THAT CAME
OUT IN OUR COMMUNITIES.
THAT ALSO EXTENDED NOT JUST TO
HUMAN ELEMENTS BUT ALSO PLANT,
WATER, LAND PROTEINS, DNA, OTHER
BIOLOGICAL DERIVATIVES.
AS SCIENCE DATA ENCOMPASSES ALL
THOSE THINGS NOT ONLY HUMANS.
WE ALSO HAVE TO THINK ABOUT WHEN
PEOPLE COMMUNITIES HONOR NATIVE
PEOPLE PARTICIPATING IN STUDIES
ESPECIALLY IN THE CLINICAL
TRIALS BECAUSE WE UNDERSTAND
PEOPLE ARE OFFERING THEIR
INFORMATION OR SAMPLES AND IT'S
A SACRED OFFERING TO HELP AND
BENEFIT COMMUNITIES OF WELL
BEING AND HE IS A SUNDANCE
LEADER.
HE DREW THE PARALLEL TO AN
OFFERING THAT IS SACRED TO HELP
PEOPLE SO IT CAN LIVE SO WE NEED
TO BE MINDFUL AND THOUGHTFUL
ABOUT TRIBAL SORT OF BUT ALSO
HONORING PEOPLE'S DECISION
MAKING IN THAT PROCESS AS SACRED
OFFERING.
THAT POINT CAME UP.
THE OTHER IS SACRED KNOWLEDGE.
THE IMPORTANCE OF KNOWLEDGES AND
PROTOCOL THAT REQUIRE
RESPONSIBILITY.
IT'S NOT UP TO ONE INDIVIDUAL TO
SAY I CAN GIVE THE INFORMATION
WAY BUT SOME KNOWLEDGE IS HELD
SACRED AND BY THE COMMUNITY AND
NEED TO THINK ABOUT THAT IN
TERMS OF DATA SOVEREIGNTY.
THESE ELEMENTS CAME UP AROUND
CULTURAL FACTORS AND I'M SURE
WE'LL EXPLORE MORE IN THE NEXT
DAY AND A HALF.
AND WHEN I'M ASKED ABOUT DATA,
ALL DATA.
BIOLOGICALLY DATA AND SEQUENCE
TISSUE AND PRODUCTS AND
SENSITIVE DATA LIKE UMBILICAL
CORDS, PLACENTA.
THESE ARE OFTEN USED IN
RESEARCH.
CLINICAL DATA INCLUDING
INFORMATION ABOUT PEOPLE'S
HEALTH STATUS AND QUANTITATIVE
DATA AND CLINICAL TRIALS AND
QUALITATIVE DATA AND ANY
NON-NUMERICAL DATA AND CAN
INCLUDE STORIES AND SONGS SHARED
PART OF RESEARCH PROJECTS AND
THICK LIKE THAT.
DIFFERENT DATA MODALITIES
IMAGING, GENOMIC SURVEY AND
DIFFERENT AGGREGATION AND LARGE
DATA SETS BUT ANYTHING THAT FROM
WHICH WILL BE PRESERVED AND
SHARED AND ALL THE TRIBE LAWS
AND ETHICS TIED TO THAT AND THE
ISSUE OF METADATA AND OTHER
DOCUMENTATION.
ESPECIALLY AROUND COMING OUT OF
BEHAVIORAL HEALTH RESEARCH WHERE
THERE MIGHT BE STUDY PROTOCOLS
AND DATA COLLECTION INSTRUMENTS
TIED TO A PARTICULAR COMMUNITY
BUT MAY THEY MOT WANT TO HEAR
THAT.
-- NOT WANT TO HEAR THAT AND
THINGS THAT ARE TALKED ABOUT AND
FINAL THEMES THAT HAVE BEEN
COMING.
BOTTOM LINE FROM MANAGEMENT TO
DISPOSAL AND COLLECTION TO
DISPOSAL MUST BE TRIBALLY
APPROVED PRIOR TO DATA
COLLECTION.
THAT'S THE BOTTOM LINE COMING
OUT.
A CAVEAT THERE, I DOESN'T MEAN
IN THE GRANT PROCESS WE EXPECT
PEOPLE HAVE TRIBALLY SUPPORTIVE
LETTER SAYING WE'RE IN SUPPORT
OF MOVING FORWARD WITH THE
RESEARCH IF IT GETS FUNDED.
WE WILL CONTINUE TO WORK OUT THE
DETAILS AT THAT TIME.
WE DIDN'T WANT IT PUT THE BURDEN
ON THE TRIBE TO VET THAT STUFF.
IT'S COSTLY AND A LOT OF WORK
AND THEY DON'T GET FUNDED.
FEW PROJECTS GET FUNDED IN THE
FIRST ROUND.
WE WANT TO SAY IS THE INITIAL
DATA SHARING PLAN, INITIALLY
SUPPORT THE PROJECT AND MOVE
FORWARD TO THE NEXT PHASE AND
THE EXPECTATION IS BEFORE WE
COLLECT THE DATA YOU HAVE
EVERYTHING IN PLACE.
SO THE COLLECTIVE CONCEPT
PROCESS AND THE INDIVIDUAL
CONSENT PROCESS SHOULD BE
CLARIFIED.
SO INDIVIDUAL COLLECTIVE AND
SHARED BENEFITS SHOULD ALWAYS BE
DEFINED.
WE EXPECT FREE AND INFORMED
PRIOR CONSENT FOR INDIVIDUALS IN
PLAIN, CLEAR LANGUAGE TO ENSURE
MUTUAL UNDERSTANDING.
SOMETIMES WE HAVE TO HAVE MOUs
IN PLACE EVEN IT START THE
PROJECT MEMORANDUMS OF
UNDERSTANDING OR
INTERGOVERNMENTAL AGREEMENTS.
AND TRIBES SAID WE HAVE THE
RIGHT TO DESIGNATE IRB OF RECORD
OR REVIEW BODY.
A TRIBE MIGHT SAY WE DON'T HAVE
A RESEARCH REVIEW COMMITTEE SO
WE'RE GOING TO DESIGNATE THE
UNIVERSITY OR DESIGNATE ANOTHER
TRIBAL AUTHORITY TO BE REVIEW
BODY.
WE NEED TO HONOR THAT AND TRIBES
MAY EVEN SAY WE STILL EXPECT
WE'RE GOING TO CREATE A SMALL
REVIEW COMMITTEE THAT WILL
REVIEW THINGS TOO NOTHING COULD
BE DOWN WITHOUT THE SUPPORT OF
THE INTERNAL REVIEW COMMITTEE WE
DEVELOPED.
WE'RE SAYING YES WE SHOULD HONOR
THAT.
TRIBES HAVE THE RIGHT TO
DETERMINE IF THEY WANT SINGLE OR
MULTIPLE IRBs IN THE APPROVAL
PROCESSES I TALKED ABOUT AND AN
INDIVIDUAL RIGHT OF DATA
DISPOSAL.
THIS IS IMPORTANT.
IF NATIVE PEOPLE HAVE CONSENTED
TO HAVING THE DATA DESTROYED AT
THE END OF THE STUDY, WHATEVER
THAT IS BECAUSE THAT'S WHERE
THEY HAVE CONSENTED TO AND WHAT
THEY WANT, IN THIS CASE TRIBAL
SOVEREIGNTY CAN'T TRUMP THAT AND
SAY WE'LL HOLD ON TO THAT AND
USE IT WHERE WE WANT TO.
TRIBES HAVE TO ABIDE BY
INDIVIDUAL CONSENT.
THIS IS THE REASON WHY THE
CONSENT PROCESS UP FRONT IS
CRITICAL.
AND THEN LEGACY PLANS NEED TO BE
TRIBALLY APPROVED.
ISSUES AROUND DISPOSITION,
TRANSFER AND DISPOSAL PLANS FOR
DATA ASSOCIATED WITH DECEASED
INDIVIDUALS NEEDS TO BE PART OF
THE DATA COLLECTION ESPECIALLY
FOR LONGITUDINAL STUDIES.
IF YOU'RE GOING TO HOLD DATA
FROM GENETIC RESEARCH FOR
EXAMPLE AND BIOLOGICAL RESEARCH
YOU CAN GO BACK AND ANSWER
QUESTIONS YOU CAN'T ANSWER NOW.
AND PEOPLE WANT TO HOLD ON TO
DATA FOR THAT PERIOD.
WE DON'T WANT YOU TO JUST HOLD
ON TO THAT FOREVER WE WANT
RE-CONSENT PROCESS TO ENSURE
WE'RE KEEPING AN EYE ON THINGS
AND WE'RE AND TRIBES SHOULD MAKE
THE DECISION IN THE CASE OF
SOMEONE DECEASED.
IT'S LIKE PEELING BACK LAYERS OF
AN ONION.
WE HAVE A LEVEL OF DETAILS WHAT
WE'LL BE NARROWING DOWN TO.
TRIBES HAVE A RIGHT TO
PREFERENCES HOW BIOLOGICAL
SAMPLES WILL BE COLLECTED,
STEWARDED, STORED AND WHERE
STORED AND HOW THEY'LL BE
DISPOSED OF.
THAT'S COME UP AS AN INTERSTATE
THEME.
TRIBES HAVE THE RIGHT TO
TRADITIONAL GUARDIANSHIP AND
CULTURAL LANGUAGE AND THE WORK
HAS BEEN INSTRUMENTAL AS WELL AS
BIO SPECIMENS AND DNA, RNA AND
ANY GENETICS DERIVED.
AND TRIBAL CONSENT OR RECONSENT
NEEDS TO BE ASCERTAINED IF THEY
IMPACT THE TRIEP.
FOR EXAMPLE, YOU MAY HAVE DONE A
GIANT SURVEY RESEARCH STUDY
DIDN'T INITIALLY YOU HAD TRIBAL
INFORMATION BUT PROMISED NOT TO
REPORT BY TRIBE BUT NOW YOU'VE
GONE IN THE DATA AND ARE LIKE
OH, BOY, THERE'S A BUNCH OF
NAVAJO IN MY SAMPLE AND WOULD
LIKE TO BE ABLE TO LOOK AT THIS,
GUESS WHAT, YOU DON'T GET TO
UNLESS YOU TALK TO NAVAJO NATION
AND GET APPROVAL.
SECONDLY USE AND RECONSENT NEEDS
TO BE TAKEN CARE OF FOR ANYTHING
THAT COULD BE DERIVED FROM A
TRIBE AND TRIBES HAVE ASKED TO
US CONSIDER STOPPING THAT AGAIN
PUTTING IN RE-CONSENT PROCESS UP
FRONT AT THE BEGINNING OF THE
CONSENT PERIOD.
IDEAS AND POLICIES SHOULD HONOR
TRIBAL SOVEREIGNTY AND
GOVERNANCE AND IF DATA OR
ATTRIBUTIONS IF THE TRIBE MEMBER
MADE AND OWNERSHIP OF AUTHORITY
OVER DATA RESTS WITH THE TRIBE
AND MUST CLARIFY WITH THE TRIBE
WHO CO-OWNS THE DATA AND HOW THE
DATA WILL BE STEWARDED AND ON
LOAN AND PROTECTIONS THAT NEED
TO BE IN PLACE.
NOTICE I'M SAYING TRIBES HERE.
WE HAVE OTHER RELATIVES HERE
FROM HAWAI'I AND WE'VE INVITED
THEM AND THEY SAID THEY WANT TO
THINK ABOUT THIS AS WELL TO MAKE
SURE WE'RE DOING THIS IN A GOOD
WAY FOR OUR COMMUNITIES AND
WE'LL LOOK FORWARD TO HEARING
FROM THEM HOW THEY'RE ORGANIZING
AND THINKING ABOUT THAT.
WE CAN LEARN FROM THAT AS WELL.
URBAN INDIAN ISSUES IS AN ISSUE.
WE'LL TALK ABOUT THAT.
IF THE STUDY'S NOT MAKING WHAT
TO DO IF YOU HAVE A SAMPLE.
BASICALLY WHERE WE'RE LANDING ON
THIS RIGHT NOW IS IF THE STUDY
IS NOT MAKING INFERENCES TO A
TRIBAL COMMUNITY IF IT'S NOT
COLLECTED ON TRIBAL LAND AND I
KNOW IT'S ALL TRIBAL LAND.
WE KNOW.
THE LEGAL IMPLICATIONS OF THAT
IF THE RESPONDENT LIVE ON THE
TRIBAL LAND AND DATA IS NOT
COLLECTED AT AN URBAN FACILITY,
THAT'S A LOT OF IFs IT'S LIKE A
BAD SAS STATEMENT.
THEN WE CAN PROCEED WITH TRIBAL
APPROVAL NO INFERENCES AND
NOTHING THAT CAN BE MADE TO
ATTRIBUTIONS TO A TRIBAL
COMMUNITY.
THIS IS IMPORTANT BECAUSE WE DO
NATIONAL STUDIES AND DO STUDIES
WHERE WE WANT TO MAKE GENERAL
IDEAS WHAT'S THE STATE OF NATIVE
HEALTH AND THINGS LIKE THAT.
YOU DON'T MAKE INFERENCES AND
HURT TRIBAL COMMUNITIES.
BUT HERE'S ONE OF THE
COMPOUNDING ISSUES IS A NUMBER
OF OUR URBAN AREAS AND THINK OF
OKLAHOMA RECENTLY WITH THE
McGURK DECISION TRIBAL LANDS SIT
LITERALLY IN URBAN SETTINGS.
TULSA IS NOW THREE TRIBES AND IN
THE PAST YOU DO A STUDY IN TULSA
WOULD HAVE BEEN AN URBAN SITE.
NOT ANYMORE.
IN THAT CASE I WOULD SAY YOU
HAVE TO GO TO THREE TRIBES.
SO IF IT'S AN URBAN SAMPLE
YOU'RE NOT IN THE TRIBAL LANDS
ARE CLOSE LIKE PHOENIX,
ALBUQUERQUE IS WHERE IT GETS
TRICKY.
SOME PEOPLE WILL GO TO THOSE
AREAS TO PARTICIPATE IN THE
STUDY BUT LIVE LITERALLY HALF
HOUR AWAY AND ON TRIBAL LANDS.
WE EXPECT WE SHOULD MEET THE
SAME CRITERIA AS ABOVE AND IF
YOU'RE NOT PLANNING ON DOING ANY
KIND OF TRIBAL ATTRIBUTIONS WORK
WITH THE TRIBES LOCALLY AND
REGIONALLY AND BE TRANSPARENT IF
YOU ARE GOING TO DO AN MOU
SAYING WE'RE NOT ATTRIBUTING TO
THEIR TRIBE WE MAKE THAT PROMISE
TO YOU THEN THAT MIGHT BE A WAY
TO GO BUT WE'RE LOOKING FORWARD
TOO -- TO WHAT YOU HAVE TO SAY
ABOUT THAT.
THIS IS NOT WRITTEN IN STONE.
AND WE CAN CREATE A POLICY HERE
AND IT'S IMPORTANT WE DO THAT
BUT IT'S ONLY GOING TO BE AS
GOOD AS THE INFRASTRUCTURE
TRIBES SIT AND BE PART OF THE
PROCESS.
WE WANT TO MAKE SURE WE'RE
MAKING A COMMITMENT TO DATA
GOVERNANCE AND TRIBES DO THIS
FOR THEMSELVES HAVE THEIR OWN
RESEARCHERS AND INFRASTRUCTURE
AND NIH HAS BEEN MOVING IN THAT
DIRECTION AND WE WANT TO GIVE
RESOURCE TO TRIBES AND HAVE THE
OWNERSHIP AND COMMUNITY.
AND SO DATA GOVERNANCE IS
CRITICAL FOR US TO THINK ABOUT
AT NIH.
THIS IS MORE FORWARD THINKING
BEYOND THE CONVERSATIONS TODAY
AND HOW DO WE BUILD GOVERNANCE
STRUCTURES, ESTABLISHING AND
HENNHEN
ING -- BUILDING REPOSITORIES
AND SO FORTH.
DATA SOVEREIGNTY PROTOCOLS AND
THE OTHER IS CAPACITY HOW DO WE
HELP SUPPORT COMMUNITIES IN
BUILDING THAT CAPACITY AND
CULTURAL PRESERVATION AND
HONORING INTEGRATING SYSTEMS
ONLY AS APPROPRIATE.
THE TRIBES SHOULD DETERMINE
WHAT'S APPROPRIATE AND LOOK AT
TRADITIONAL RIGHTS AND WAYS OF
KNOWING.
THESE ARE THINGS I'VE BEEN
THINKING ABOUT.
THAT'S A QUICK OVERVIEW TO THIS
MOMENT TO GET US READY FOR THE
CONVERSATION TODAY.
ANY QUESTIONS BEFORE I WE MOVE
FORWARD?
I KNOW THERE'S A LOT OF
INFORMATION.
I'VE BEEN WELL CAFFEINATED
TODAY.
>> I'LL TELL YOU TOMORROW.
>> ONE WAS AT THE INDIGENOUS
DATA SOVEREIGNTY CONFERENCE IN
ARIZONA.
HAWAI'I WAS ANOTHER ONE.
OKLAHOMA WAS ANOTHER ONE.
WE DID ONE WITH PROGRAM
INVESTIGATORS.
WE DID ONE IN OKLAHOMA.
THE REGIONAL TRIBAL MEETING.
WE DID THE EYE RENA PROGRAM
P.I.s AND HAD ONE AT THE JOHNS
HOPKINS CENTER FOR INDIGENOUS
HEALTH WITH INVESTIGATORS THERE.
WE HAD ONE WITH THE MEETING.
WE HAD ONE WITH THE GROUP ONLINE
AS WELL AS
>> NATIVE INVESTIGATORS HAVE
UNIQUE NEEDS AND NATIVE,
NON-NATIVE AND NATIVE
INVESTIGATORS IN THEIR OWN
COMMUNITIES HAVE UNIQUE NEEDS
THAT MAY COME UP AND WE WANTED
TO HEAR WHAT THEY WERE THINKING.
AND WE'RE NOT DONE.
WE'RE HAVING LISTENING SESSIONS
AND WILL HAVE TWO TRIBAL
CONSULTATIONS AND ONE WILL BE
JUST TO GATHER SIMILAR FEEDBACK
FROM TRIBES AND THE OTHER ONE'S
GOING TO BE TO VET THE POLICY
ONCE WE WRITE IT UP AND GET OUT
THERE.
WE'LL HAVE PLENTY OF OPPORTUNITY
FOR PEOPLE TO RESPOND AND GIVE
PUBLIC COMMENT.
>> A QUICK QUESTION AS WELL.
>> WE'LL PROBABLY TALK ABOUT
THIS LATER IN OUR DISCUSSIONS
BUT ONE OF THE I THINK
CHALLENGING THINGS IS WHILE
WE'RE WORKING ON MORE FORMAL
POLICY OF RESEARCH THAT WOULD GO
FORWARD THERE'S A LOT OF
EXISTING DATA THAT EXISTS WITHIN
THE PUBLIC DOMAIN AND THEN
THERE'S ALSO -- WELL, WE HAVE TO
FIGURE OUT WHAT HAPPENS THERE
AND THE OTHER THING IS THERE'S
CURRENT POLICY AT THE NIH LEVEL
SPECIFIC GUIDELINES AND POLICY
PROJECTS WITH HAVE TO ABIDE BY
TO DEPOSIT THIS INFORMATION TO
PUBLIC DATABASES AND
REPOSITORIES AND ONCE IT GOES
THERE IT'S UNDER THEIR PURVIEW.
IS THERE ANY DISCUSSION --
>> WE'RE HAVING A LOT OF
INTERNAL DISCUSSION AND WORKING
WITH THE OFFICE OF SCIENCE
POLICY OFFICE AND WORKING
CLOSELY WITH THE OFFICE OF
GENERAL COUNCIL I'M SURE.
BUT WE'VE BEEN WORKING CLOSELY
WITH VARIOUS INSTITUTES AROUND
THIS AND SOME GENOMICS POLICY IN
PARTICULAR.
WE HAVE LARGE DATA SETS.
WE'RE DOING A REVIEW RIGHT NOW
OF ALL OF OUR REPOSITORIES.
WE'RE LOOKING INTO THAT WHERE
ARE OUR AMERICAN INDIAN AND
NATIVE HAWAIIAN SAMPLES AND
GETTING A GOOD IDEA WHERE
EVERYTHING SITS.
WE'RE WORKING CLOSELY WITH THE
ISSUES OF RESTRICTED ACCESS WITH
MAKING SURE DATA RETURN AS WELL.
WE'VE BEEN WORKING CLOSELY WITH
FOLKS.
ONE THING I CAN ANNOUNCE THAT'S
NOT OFFICIAL YET BECAUSE WE HAVE
TO GO THROUGH A PROCESS
INTERNALLY BUT SAFE IT SAY WE
HAVE THE COMMITMENT FROM OUR
INTRAMURAL IRB TO DEVELOP AN
AMERICAN INDIAN ALASKAN NATIVE,
HAWAIIAN IRB AT THE NIH.
THAT WILL BE NEW.
>> THERE'S AN ACF FUNDED GRANT
AND WHAT ARE PROTECTIONS
PROCESSES OF OTHER AGENCIES?
>> WE HAVE A WEEKLY MEETING WITH
THE OPERATING DIVISIONS OF HHS.
WE'RE ALL IN COMMUNICATION AND
WE'RE TALKING ABOUT HOW TO DO
THIS.
NSF IS ONE OF THE FIRST TO GET
AHEAD OF US ON DEVELOPING THEIR
POLICY.
I THINK OURS IS GOING TO BE THE
MOST RIGOROUS AND DETAILED.
THAT'S FAIR TO SAY RIGHT NOW.
AND IT'S A LITTLE DIFFERENT
BECAUSE WE DO RESEARCH.
OUR PRODUCTS ARE KNOWLEDGE.
OTHER FOLKS ARE WORKING IN
PROGRAMS AND SERVICES AND SO
THEY'RE DEALING WITH HIPAA
REGULATIONS AND OTHER ISSUES
RELATED TO CLINICAL DATA THAT WE
DON'T HAVE THE SAME KIND OF
THING.
THERE'S GOING TO BE SOME
DIFFERENCES.
BUT THERE IS TRIBAL EPICENTER
DATA SHARING CONSULTATION PIECE
POLICY PIECE THAT'S OUT RIGHT
NOW FOR PUBLIC COMMENT.
EACH HAVE SLIGHTLY DIFFERENT
MANDATES IN TERMS OF WHAT'S THAT
LOOK LIKE.
THE PEC ISSUES BECAUSE IT HAS TO
DO WITH INDIAN HEALTH SERVICE
DATA AND HIPAA AND OTHER ISSUES
WE DON'T RUN INTO THE SAME KIND
OF ISSUES AT THE NIH.
>> I WANT TO ACKNOWLEDGE ALL THE
WORK YOU'VE BEEN DOING, KARINA,
IT TAKES MY BREATH AWAY.
THERE'S MORE WORK TO BE DONE AND
DIFFICULT CONVERSATIONS.
I'M WONDERING IF YOU HAVE A TIME
LINE BECAUSE I FEEL LIKE WE
NEEDED THIS MANY YESTERDAYS AGO.
THE LONGER WE TAKE TO CREATE A
POLICY AND HOLDING SPACE TO
CREATE THESE POLICIES AND
EVERYONE WANTS TO MAKE THE NEXT
GRANT CYCLE AND LA, LA, LA, LA.
DO WE HAVE, THE COLLECTIVE WE
BECAUSE THINGS ARE HAPPENING AND
BECAUSE DATA IS ALREADY
COLLECTED ON US SO TIME LINE
WOULD BE NICE.
>> WITH THAT WE HAVE TIME LINE
FOR POLICY AND GUIDANCE PAUSE
THERE'S A LOT TO DO.
OUR GOAL IS BY OCTOBER TO HAVE
OUR FIRST TRIBAL CONSULTATION
AND SO CERTAINLY WE HAVE A DRAFT
POLICY BY THE FIRST OF THE YEAR.
WE'RE TRYING TO GET THIS IN
BEFORE POTENTIAL CHANGE IN
ADMINISTRATION AND WE'RE MOVING
FORWARD AND HOPE TO HAVE
EVERYTHING IN PLACE BY SPRING OF
NEXT YEAR.
>> I'M CONCERNED ABOUT THIS AS
WELL.
IT SEEMS LIKE THE FOLKS FROM
THAT PROJECT IS TRYING TO RACE
BEFORE ANY OF THE POLICY CHANGES
COME IN AND TRYING TO HURRY UP
AND GET THEIR DATA COLLECTIVE
AND SEQUENCING STARTED BEFORE
THESE THINGS HAPPEN BECAUSE IT'S
BEEN A GRAY AREA.
WE'RE TRYING TO HOLD THEM OFF
BEST WE CAN THE LAST YEAR AND A
HALF OR SO.
THERE'S DEFINITELY PEOPLE AWARE
THESE CHANGES MAY BE COMING AND
THEY'RE TRYING TO RUSH THEIR
PROJECTS ALONG.
THE OTHER THING IS I WAS IN
BISMARCK LAST WEEK FOR THE
TRIBAL COLLEGES LEADERSHIP
SUMMIT.
THEY HAD A DINNER MEETING WITH
THE GREAT PLAINS TRIBAL
EPIDEMIOLOGY EPIDEMIOLOGY CENTER
AND DIRECTORS AND THEY'RE MAD
BECAUSE THE STATES IN THAT AREA
ARE CREATING LAWS TO NOT
RECOGNIZE TRIBES AS PUBLIC
HEALTH ENTITIES.
THAT'S ANOTHER BIG CHANGE
HAPPENING VERY QUICKLY SINCE
COVID TRIBES HAVE STOOD UP THEIR
OWN EPIDEMIOLOGY CENTERS AND THE
FEDS HAVE RECOGNIZED THEM AS
PUBLIC HEALTH ENTITIES AND THE
STATES DO NOT WANT TO AND THEY
WANT TO CREATE LAWS TO PREVENT
SHARING DATA WITH TRIBES.
>> THANK YOU FOR THAT.
>> IT'S GOING TO MAKE MONTHS TO
GETS THROUGH THIS AND WORKING
BACKWARDS TO SAY MAKE SURE WE
HAVE TRIBAL LAWS.
FIRST AND FOREMOST AND MAKING
SURE OUR INSTITUTES ARE ALIGNED
WITH LAWS AND ORDINANCES BOTTOM
LINE AND DOING THAT ON A CASE BY
CASE BASIS.
WE'RE IMPLEMENTING THAT.
WE'RE WORKING TRANSPARENTLY AND
WORKING WITH TRIBES WHERE PEOPLE
HAVE NOT BEEN ALIGNED AND WE'RE
GOING TO THE TRIBES AND SAYING
WE'RE NOT ALIGNED.
WE NEED TO CORRECT THIS AND
LET'S MOVE FORWARD.
HOW DO WE DO THAT.
THERE ARE THINGS TO BRING
BACKWARDS TO LOOK AT HOW TO MOVE
FORWARD AND SAYING THIS IS HOW
YOU CAN GET FUNDED AND THE ONLY
WAY YOU'RE GOING TO GET FUNDED
AND THERE'S GOING TO TO BE
REPERCUSSIONS IF YOU DON'T
FOLLOW THROUGH.
ONE THING WE WERE TALKING ABOUT
FUNDING NOT HAPPENING IS FUNDING
WITHDRAWN AFTER TWO YEARS PRIOR
TO DATA COLLECTION DON'T HAVE
SOMETHING IN PLACE WITH THAT
TRIBE.
WE'RE LOOKING AT ALL KINDS OF
DIFFERENT THINGS BUT BASICALLY
WHERE WE HAVE THE GREATEST POWER
IS SAYING THESE ARE THE RULES TO
ABIDE BY TO GET FUNDED.
SO IT'S GOING TO TAKE TIME.
THAT'S WHY A LOT OF IT IS GOING
TO BE SUPPLEMENTAL GUIDANCE.
THE GENERAL POLICY ISN'T GOING
TO BE SUPER PRESCRIPTIVE BUT BIG
ENOUGH FOR THE BIG PICTURE AND
CREATE GUIDES FROM DATA
COLLECTION THROUGH DISPOSAL.
WAS THERE A QUESTION OVER HERE?
>> SO THANK YOU SO MUCH FOR ALL
OF YOUR WORK AND I ALSO WANT TO
THANK YOU TOO FOR THE LAST
PIECES YOU REALLY HIGHLIGHTED AS
THE DIFFERENCE FOR NATIVE
SCHOLARS.
BECAUSE LATERAL VIOLENCE IS SUCH
A REALITY WITHIN THE
COMMUNITIES.
WE'VE HAD MANY OF OUR NATIVE
RESEARCHERS ARE STARTING TO GET
BURNED THROUGH THAT PROCESS.
AND HAVING OUR OWN TRIBAL
MEMBERS COME AFTER US AND IN
DIFFERENT WAYS IN OUR
COMMUNITIES AND THEY'RE NOT ONLY
QUITE DYSFUNCTIONAL, THEY'RE
QUITE DAMAGING TO THE CAREERS OF
NATIVE SCHOLARS AND THOSE SORTS
OF THINGS.
I DO HOPE THERE ARE SOME PLANS
IN ESSENCE FOR THOSE FOLKS WHO
ARE ENDANGERED AND NOT ONLY IN
THEIR INSTITUTIONS BUT
FREQUENTLY WITHIN THEIR OWN
COMMUNITIES BECAUSE WHEN YOU
SUCCESS IN ANY KIND OF WAY
WITHIN OUR COMMUNITIES YOU ARE
SUBJECT TO A LOT OF SCRUTINY AND
ALSO SUBJECT TO A LOT OF
NEGATIVE ACTIONS THAT CAN IMPACT
YOUR FAMILY THAT'S DIFFICULT FOR
US.
MANY HAVE BEEN THREATENED TO BE
SUED FOR SPEAKING ABOUT THINGS
THAT HAPPENED WITHIN THE TRIBES
THAT WILL DYSFUNCTIONAL BEA
HAIRS AND I WOULD SAY --
BEHAVIORS AND I WOULD SAY MANY
TRIBAL LEADERSHIPS ARE VERY
CORRUPT.
WE HAD ONE FAMILY DEALING DRUGS
FROM THEIR HOME AND WE HELPED
CREATE THE DIFFERENT MECHANISMS
AND PROCESSES AND POLICIES BUT
NOW IT'S GETTING TO THE POINT
WHERE I'M LIKE WHAT ARE WE
DOING?
IT'S A DIFFICULT THING WHEN
YOU'RE SEEING THOSE SAME TOOLS
USED AGAINST PEOPLE WHO IT'S
MEANT TO BE PROTECTING IN A WAY.
SO I KNOW IT'S A BIG TOPIC BUT
IT IS SOMETHING I'M GRATEFUL
YOU'RE THINKING ABOUT AND I
APPRECIATE THE ABILITY WE'LL
HAVE TO DISCUSS THAT MORE.
IT'S HELPFUL.
THANK YOU.
>> THAT'S A GOOD EXAMPLE OF SOME
OF THE COMPLEXITIES OF BEING A
NATIVE RESEARCHER IN YOUR OWN
COMMUNITY SOMETIMES IN THE LOCAL
POLITICS AND ISSUES THAT ARE
THERE AS WELL.
SO THAT HAS COME UP IN A NUMBER
OF SITUATIONS.
WE WANT TO BE COGNIZANT OF THAT
AND SUPPORTIVE OF OUR UP AND
COMING NATIVE SCIENTISTS MAKING
THEIR WAY AND MOVE FORWARD IN A
HEALTHY WAY.
IT'S COMPLICATED WHEN WE SAY WE
HONOR TRIBAL SOVEREIGNTY AND
WORK WITH GOVERNMENTS PEOPLE MAY
NOT BE SUPPORTIVE OF.
THERE'S COMPLEXITY.
WHEN WE TALK ABOUT TRADITIONAL
GUARDIANSHIP, MAYBE YOU HAVE TO
WORK WITH TRIBAL LEADERS AND
WITH THE CULTURAL KNOWLEDGE HERE
AND NOT THERE.
SO THERE'S COMPLEXITY HERE.
WE DON'T WANT THE FEDERAL
GOVERNMENT'S HAND DOWN THERE
EITHER SO WHAT WE WANT TO DO IS
MUTUALLY HAVE A PLACE TO SAY WE
RECOGNIZE THESE THINGS AND HOW
DO WE MOVE FORWARD IN A HEALTHY
WAY.
THE BOTTOM LINE IS OUR PEOPLE
ARE SUFFERING AND WE WANT TO DO
SOMETHING ABOUT THAT TO BE ABLE
TO HELP PEOPLE BE HEALTHY AND
WELL AND HOW DO WE ENSURE OUR
PROCESS IS HEALTHY AND WELL IN
DOING THAT.
I THINK IT WILL BE -- WE MAY
HAVE MORE QUESTIONS THAN ANSWERS
BUT THAT'S IMPORTANT TO DO TOO.
MICHELLE.
>> I WAS GOING TO ASK OR OFFER
FOR REFLECTION OR CONSIDERATION
IN DEVELOPING THE POLICY THAT'S
IMPORTANT AND A MAJOR STEP
FORWARD BUT PRESERVING SPACE FOR
NUANCE AND IT NOT BECOME RIGID,
FIXED, PRESCRIPTIVE AND BECAUSE
THE COMPLEXITY AND THERE'S LOTS
OF DIFFERENCE BETWEEN
COMMUNITIES AND SETTINGS AND
CONTEXT.
ANYWAY, BEING MINDFUL OF AGAIN
BUILDING IN TO THIS POLICY SPACE
FOR NUANCE AND CONSIDERATION OF
DIFFERENCES, I GUESS YOU'D SAY.
>> YEAH.
WE DIDN'T WANT FOR EXAMPLE WITH
THE URBAN SITUATION WE DIDN'T
WANT TO DISCOURAGE PEOPLE FROM
COLLECTING URBAN DATA FROM
PEOPLE IN URBAN AREAS AND THAT'S
WHERE SOME POTENTIAL
CONVERSATIONS COULD HEAD.
LIKE I JUST WANT TO COLLECT DATA
OR ASK THE QUESTION.
I WANT TO ASK IF THEY'RE INDIAN.
THEY'RE LIKE OKAY.
THESE ARE THE THINGS WE'RE
HAVING TO KEEP AN EYE ON.
>> ALSO THINKING EVOLVES OVER
TIME.
THIS IS PERHAPS SOMEWHAT OF A
LIVING DOCUMENT.
>> THANK YOU.
>> I KNOW THERE'S BEEN ACTION
TAKEN BY SOME DIFFERENT
INSTITUTIONS AS PART OF THE NIH
TO BEGIN BUILDING OUT POLICIES
AND NATIONAL INSTITUTE ON AGING
STARTED SOMETHING.
HOW DO YOU SEE THIS POLICY
PLAYING WITH OTHER DOCUMENTS
THAT HAVE ALREADY BEEN STARTED?
>> OURS IS THE BIG ONE.
>> OKAY.
WE'RE GOING TO WORK WITH I.C.s
TO SEE HOW THEY'RE THINKING
ABOUT AND APPLYING IT AND HOW IT
ALIGNS OR DOESN'T ALIGN WITH THE
CURRENT VISION AND WORKING ONE
THEM TO MAKE SURE WE ALL ALIGN.
THIS IS FOR ALL OF THE NIH.
>> THERE'S CERTAIN SEGMENTS OF
OTHER POLICIES FROM OTHER I.C.s
THAT MAYBE DON'T EXIST UNDER
THIS BIG ONE.
WILL THOSE BE ADD ONES WITHIN
THE CONTEXT?
>> IT'S GOING TO HAVE TO ALIGN
WITH THE FINAL POLICY WRIT
LARGE.
SO WHATEVER THE POLICY BECOMES
OUR EXPECTATIONS IS MAKING SURE
THE POLICIES ARE ALIGNED WITH
THAT.
THIS WILL BE VETTED THROUGH OGC
TIED TO HHS.
THIS GOES UP THE CHAIN SO WHY IT
TAKES LONGER.
AND SOME ISSUES INVOLVED IN THE
WORK THE DATA SHARING GUIDANCE
AND HOW MUCH IT TAKES TO GET
THROUGH THE PROCESS.
THE GOAL WAS TO GET US ALL
ALIGNED AND GET ALL THE ARMS OF
THE OCTOPUS FUNCTIONING TOGETHER
AND SO THE IDEA IS WE DON'T GET
THE CALL AND IT SUPERSEDES AND
WHERE HE NEED TO GET ALIGNED AND
WE HAVE THE SUPPORT OF THE
DIRECTOR TO DO THIS.
>> WE'VE ALREADY FALLEN
BEHIND -- YAY.
IT'S AN INDIGENOUS MEETING BUT
WE HAVE TO THINK ABOUT OUR
PANEL.
SORRY.
TURNING TO OUR PANEL IT'S TIME
FOR MUSICAL CHAIRS -- THEY STAY.
THEY'RE FIRST.
WE PLANNED AHEAD.
A COUPLE MEANT ABOUT THE PANEL.
DR. WALTERS WILL START US OFF
AND CONFUSE YOU WITH OUR
MODERATORS.
WE HAVE KARINA, KATHY AND KAYLA.
WE'LL HAVE DR. WALTERS START OF
AND ASK TARGETED QUESTIONS TO
OUR PANELISTS AND PROVIDE THEM
AN OPPORTUNITY TO WEIGH IN.
HOWEVER, EACH PANELIST WILL HAVE
AN OPPORTUNITY TO COMMENT ON
EVERY QUESTION.
WE ASK YOU KEEP REMARKS BRIEF
OR IF YOU FEEL YOUR COMMENT HAS
ALREADY BEEN MADE OR DON'T FEEL
YOU WOULD LIKE TO MAKE A
COMMENT, PERFECTLY FINE TO SAY I
DON'T HAVE AN OPINION OR WOULD
LIKE TO THINK ABOUT THAT MORE.
THE NICE PART IS WE HAVE DAY TWO
TO GET OUR THOUGHTS TOGETHER.
WE'LL HEAR EVERYBODY'S COMMENTS
TODAY AND CAN GO BACK AND HAVE
DINNER TOGETHER WE CAN TALK AND
THINK ABOUT IT.
TOMORROW WE'LL BE IN GROUPS
ABOUT SIX PEOPLES AND TALK ABOUT
POLICY PIECES AND CHARGE YOU
WITH SPENDING AN HOUR TOGETHER
REALLY THINKING ABOUT WHAT ARE
THE WRITTEN KEY RECOMMENDATIONS
YOU WANT RECORDED AND GIVEN BACK
TO THE NIH.
ON TOP OF THAT I WOULD LIKE TO
OFFER WE HAVE A LOT OF QUESTIONS
HERE TODAY AND WE DON'T HAVE
CLEAR ANSWERS.
WE HAVE BRILLIANT SCIENTISTS IN
THE ROOM WITH FANTASTIC LIVED
EXPERIENCE TO DRAW ON.
WE WOULD LOVE TO HEAR YOUR INPUT
ON AS MANY QUESTIONS AS YOU'D
LIKE TO PROVIDE IT ON EVEN IF
IT'S NOT DIRECTED FOR YOUR
PANEL.
SO THERE WILL BE OPPORTUNITY IF
ANYBODY WOULD LIKE TO FOLLOW UP
AFTER THE MEETING WE'RE HAPPY TO
SET UP ADDITIONAL MEETINGS TO
CHAT THROUGH TOPICS AND CHAT
THROUGH YOUR TRIBAL COUNCIL OR
RESEARCH WORK OR COMMUNITY ABOUT
THESE QUESTIONS.
AND WE'RE ALSO VERY HAPPY TO
TAKE WRITTEN ANSWERS IF ANYBODY
WANTS TO REFLECT ON THIS AND PUT
IT DOWN IN WRITING AND SEND BACK
OUR WAY WE WELCOME YOU TO DO
THAT AND WOULD LIKE TO INVITE
YOU TO DO THAT.
THERE WILL BE A FORMAL WRITTEN
REPORT AFTER TO THE MEETING TO
COLLECT THE RESPONSES WE GET.
THAT'S A WAY FOR YOU TO HOLD THE
NIH ACCOUNTABLE ON INPUT YOU'RE
GIVING TO US.
WE'LL HAVE A WRITTEN REPORT AND
GOING TO PUBLISH IT AND MAKE IT
CLEAR TO THE COMMUNITY WHAT WE
HAVE BEEN TOLD FROM THE EXPERTS
IN THIS ROOM AS WELL AS THE
INPUT WE'VE GOTTEN FROM THOSE
LISTENING SESSIONS HELD THUS FAR
AND THE FORMER TRIBAL
CONSULTATIONS WE'LL BE HOLDING.
I WANT TO ACKNOWLEDGE WE'VE
GIVEN YOU FEW MINUTES TO ADDRESS
SUCH A COMPLICATED TOPIC AND
EXPECT AND HOPE TO BE CONTINUING
THE CONVERSATION WITH YOU ON THE
TOPIC.
WITH THAT, I'LL HAND IT OVER TO
DR. WALTERS TO GET STARTED ON
OUR QUESTIONS.
>> ALL RIGHT.
GREAT.
PANEL 1, NEW FOR BEING HERE.
WE'VE GOT JESSICA BLANCHARD AND
KIMBERLY HAMPTON AND OUR ALIKA
MAUNAKEA AND CLIFF POODRY AND WE
WERE GOING TO HAVE ATTORNEYS
PRESENT.
WE DON'T BECAUSE THEY GOT COVID,
UNFORTUNATELY.
I'LL SHIFT THE CONVERSATION A
LITTLE BIT.
I WANT TO START WITH A MORE
BASIC QUESTION AND A WARM UP
QUESTION A LITTLE BIT.
THE QUESTION IS WHAT DOES
INDIGENOUS DATA SOVEREIGNTY MEAN
TO YOU AND WHAT DO YOU THINK IS
CRITICAL THAT NEEDS TO BE ON THE
FLOOR FOR US TO DISCUSS?
>> SO I HAVE LOTS OF NOTES AND
STUFF.
THE PERSPECTIVE I COME FROM IS
IN TRIBAL GOVERNMENT AS A TRIBAL
LEADER AND AS A FAIRLY NEW
RESEARCHER.
INDIGENOUS DATA SOVEREIGNTY TO
ME IS THE RIGHT OF EACH NATIVE
NATION TO GOVERN THE COLLECTION
AND OWNERSHIP OF THE DATA AND
WANT TO GIVE AUTHORITY BACK TO
THE INDIGENOUS TRIBES.
HOWEVER, AT THE SAME TIME WE DO
RECOGNIZE THERE'S SIGNIFICANT
OBSTACLES TO REBUILDING
EFFECTIVE SOVEREIGNTY SYSTEMS
AND THE RESOURCES, TIME AND
PARTNERSHIPS WITH OTHER NATIVE
NATIONS, OTHER GOVERNMENTS AND
ADDITIONAL DATA AGENTS.
WE UNDERSTAND WE NEED TO
PRACTICE PATIENCE AS LONG AS
THINGS CONTINUE TO MOVE FORWARD.
>> THANK YOU.
WE'LL GO DOWN THE LINE.
>> WHAT SHE SAID.
I WANT TO PASS COMMENT.
>> I'M NOT SURE I CAN ANSWER
THAT DIRECTLY BUT AS MOST ARE
PROBABLY AWARE NATIVE HAWAIIANS
ARE NOT RECOGNIZED AS FEDERAL
ENTITIES.
WE CALL FOR MORE COMMUNITIES
WITH SOVEREIGNTY IN GENERAL AND
WHAT THAT MEANS TO US.
MANY AREN'T AWARE THE HISTORICAL
CHANGES THAT HAPPENED DURING A
TUMULTUOUS PERIOD OF TIME AND
WHEN I THINK OF DATA SOVEREIGNTY
WILL BE AKIN TO THE BROADER
CONTEXT OF INDIVIDUAL'S RIGHTS
AS WELL COMMUNITY RIGHTS TO
THEIR OWN SELF-DETERMINATION AND
UNDERSTANDING THEIR OWN VIEWS
AND RESPECTING THAT PART OF THE
PROCESS FOR US WHAT IT LOOKS
LIKE IN TERMS OF THE RESEARCH IS
CULTURAL AND ANCESTRAL AND
COMMUNITY-BASED ORGANIZATIONS
SUCH AS OTHER ORGANIZATIONS LIKE
HAWAIIAN HOMELANDS WITH
COMMUNITY LEADERS AND CULTURAL
PRACTITIONERS CAN BE RECOGNIZED
IN A DATA SOVEREIGNTY FRAMEWORK
AND HAVE BEEN WORKING ALONGSIDE
PARTNERS AND NATIVE HAWAIIANS TO
UNDERSTAND HOW INFORMATION WE
COLLECT DATA WE COLLECT AND
SAMPLES WE COLLECT ARE SHARED IN
A RECIPROCAL WAY AS WELL AS
UNDERSTANDING HOW TO WORK
TOGETHER WITH INTEGRATING
CULTURAL KNOWLEDGE AND TO
AMPLIFY THE RESEARCH IN ITSELF
AND TO CREATE A BROADER IMPACT
TO THE COMMUNITY.
IN CASES WHERE THAT SOVEREIGNTY
IS UNCLEAR COMMON STRATEGY IS
WHAT WE DO RECOGNIZE NATIVE
HAWAIIAN ORGANIZATIONS AND
COMMUNITY MEMBERS AND WE CONSULT
WITH THEM TO ENSURE DECISIONS
ARE GUIDED BY COLLECTIVE
COMMUNITY VALUES.
WE USE ETHICAL APPROACHES THAT
INCLUDE THE SYSTEM IN OUR
COMMUNITY WHICH EMPHASIZES
RESPECT FOR GENOLOGICAL TIES,
RELATIONSHIPS WITH THE LAND AND
RELATIONSHIP OF TRIBAL KNOWLEDGE
AS A COMMUNAL ASPECT.
THAT'S PARTS OF OUR PROCESS IN
ENGAGING COMMUNITIES AND WORKING
WITH DATA AND SPECIMENS FROM
THOSE COMMUNITIES THAT THE
INFORMATION SHOULD SERVE.
PASS IT ALONG.
>> IN MY -- I SERVE A LOT OF
DIFFERENT ROLES AND IN MY ROLE
AS A TRIBAL LEADER IN WORKING
WITH OUR COMMUNITY, I THINK
ABOUT WHAT INDIGENOUS DATA
SOVEREIGNTY MEANS AND AS WE
ADVOCATE FOR PROTECTION OF OUR
RIGHTS AND TRIBE AND SOVEREIGNTY
AND LAND AND WATER, WE THINK
ABOUT WHAT WE NEED TO DO BUT WE
HAVEN'T BEEN THINKING ABOUT
ENOUGH ABOUT DATA SOVEREIGNTY.
WHAT DOES THAT REALLY MEAN?
IT'S IMPORTANT THAT TRIBAL
LEADERS UNDERSTAND WHAT THAT
DATA SOVEREIGNTY REALLY MEANS.
IT MEANS IT'S OUR STORIES.
IT'S ABOUT US.
IT'S ABOUT WHO WE ARE.
AND WE SHOULD PROTECT THAT JUST
LIKE WE PROTECT EVERYTHING ELSE.
WHEN I SAY THIS IS DATA
SOVEREIGNTY AND WHAT'S THIS
MEAN?
IT'S ABOUT US.
AS WE HAVE THIS CONVERSATION
JUST THIS MORNING I THINK ABOUT
RESEARCHERS COMING TO US I SIT
ON THE TAC AND I ADVOCATE FOR
THAT CAPACITY BUILDING SO WE'RE
TELLING THE STORY.
THE TRIBE, THE NATION -- IT'S
ABOUT US.
THERE SHOULDN'T BE ANYBODY ELSE
TELLING THE STORY.
IT SHOULD BE US.
THAT'S WHY I ADVOCATE FOR THE
CAPACITY BUILDING BECAUSE WE
KNOW THERE ARE PEOPLE LIKE US TO
HELP GATHER AN PROTECT THE DATA
TO START ADDRESSING SOME OF
THESE ISSUES THAT HAVE CREATED A
LOT OF PROBLEMS IN OUR
COMMUNITY.
SO IT'S BEEN INTERESTING
SIGNATURE HERE THIS MORNING AND
LISTEN TO EVERYBODY TALK ABOUT
COMMUNITY AND TALK ABOUT THE
RESEARCH BUT IT'S ABOUT THE
INDIGENOUS SOF -- SOVEREIGNTY
AND WHAT ALIGNS WITH THE
PURPOSEFUL RESEARCH BECAUSE
ANYBODY CAN DO THIS.
WE'VE SEEN IT.
WE'VE SEEN THE EXPLOITATION AND
IT'S IMPORTANT TO HAVE THE
CONNECTION WITH THE TRIBE AND TO
UNDERSTAND WHAT DOES DATA
SOVEREIGNTY MEAN THE NATION AND
UNDERSTAND RELATIONSHIPS AND
TRUST AND STORIES HAVE SHARED BY
US.
THANK YOU.
I'M HERE BECAUSE KARINA SAID TO
COME AND SHE'S ONE OF THOSE
PEOPLE WHO SAID TO COME YOU SHOW
UP AND I DIDN'T EXPECT TO BE ON
A PANEL BECAUSE I'M NOT NATIVE.
I DON'T WANT TO SPEAK FOR THE
NATIVE COMMUNITY.
I DEFINITELY SEE MYSELF AS AN
ALLY BUT THERE'S CONTENTION WITH
THAT TERM AND THAT'S SOMETHING I
CONTINUALLY NAVIGATE AND FEEL
PRIVILEGED I CAN BE IN THE SPACE
WITH YOU ALL AND YOUR
BRILLIANCE.
I THINK I CAN JUST SHARE WHAT
I'VE LEARNED FROM THE COMMUNITY
OVER THE YEARS.
TWO THINGS THINKING ABOUT DATA
SOVEREIGNTY CENTERED ON
RELATIONSHIP AND WHEN I SEE
RESEARCH BEING DOWN AND WHAT THE
COMMUNITY EMBRACES IT'S WHEN
PEOPLE HAVE PILINA WITH EACH
OTHER.
LONG LASTING COMMITMENT BEYOND
THE GRANT AND RESEARCH PROJECT.
I THINK THE THINGS WE TALKED
ABOUT AND FOUND IN THE
COMMITMENT AND DEDICATION,
THAT'S BEYOND CAREERS AND JOBS
AND CVs AND FIGURING OUT
COMMUNITIES.
I SEE WHEN THE UNIVERSITY TALKS
ABOUT WHAT COMMUNITY THEY'RE
ENGAGING WITH IT'S TYPICALLY
INSTITUTIONS.
IT'S TYPICALLY AGENCIES.
AND A LOT OF THE TIMES THE
AGENCIES AND INSTITUTIONS ARE
REPRESENTED BY PEOPLE WHO AREN'T
FROM THE COMMUNITY.
SO WHAT WE'VE BEEN DOING IS
ENGAGING THE EVERYDAY COMMUNITY
MEMBERS AND SAY IT'S FOR THE
COMMUNITY WITH THE COMMUNITY.
PEOPLE EXPERIENCING THE IMPACT
OF THE RESEARCH AND IN THE
NECESSARILY PEOPLE WITH TITLES
WHO GET TO SAY WHAT THEY THINK
IS BEST FOR THE COMMUNITY.
THANK YOU.
>> I DON'T FLOW -- KNOW WHAT I
CAN REALLY ADD.
ALL OF THIS IS RIGHT ON.
MY COMMUNITY IS REALLY SMALL.
WE HAVE LESS THAN 200 TRIBAL
MEMBERS SPREAD OVER THE STATE
AND DOWN SOUTH.
I DON'T REALLY KNOW WHAT I CAN
ADD EXCEPT MAYBE A PART CAN BE
AROUND LONG-TERM CONSISTENT
CHECK-INS WITH THE TRIBES AND
TRIBAL COUNCILS AN GOVERNMENTS
CHANGE AND THE FOCUS CHANGES
WITHIN THE TRIBAL GOVERNMENTS.
MAYBE FREQUENT CONSISTENT
CHECK-INS TO MAKE SURE THE
PRIORITIES ARE STILL IN
ALIGNMENT.
>> I'LL CONCUR WITH A NON-NATIVE
RESEARCHER I FEEL LIKE MY
COMMENTS SHOULD BE MINIMAL IN
THE SPACE.
I'M NOT GOING TO SAY ANYTHING
BUT IS WHAT MY HUSBAND WOULD SAY
BUT -- AS A NON-NATIVE
RESEARCHER I THINK THERE'S A
PLACE IN THIS PRACTICE TO
PROMOTE ACCOUNTABILITY TO SPEAK
UP FOR DATA SOVEREIGNTY AT OUR
INSTITUTIONS AND IT'S MESSY.
THERE'S A LOT NUANCE TO
MICHELLE'S POINT.
I'M A NON-NATIVE RESEARCHER BUT
MY FAMILY IS NATIVE BY MARRIAGE.
ALL MY FAMILY'S NATIVE.
I PRETTY MUCH ONLY INTERACT WITH
INDIGENOUS PEOPLE AND SPACES.
I ALSO THINK ABOUT HOPEFULNESS
IN INDIGENOUS SOVEREIGNTY AND
ALSO THINK ABOUT INDIGENOUS DATA
SOVEREIGNTY AND THE BEAUTIFUL
WAY IT'S BEEN ARTICULATED THUS
FAR IS SO FAR ANDTHE POLICY
LEGALISTIC FRAMEWORK THEY ALIGN
WITH THAT THEY DON'T ALIGN.
HOW DID A POLICY INCORPORATE
THESE BEAUTIFUL STORIES OF
RELATIONSHIPS AND LAND AND
STORIES AND KIN AND BEING IN
COMMUNITY WITH ONE ANOTHER.
I THINK FOR ME AND MY PLACE IN
THIS WORK AND CONVERSATION AND
MY FAMILY IS THINKING ABOUT HOW
TO WORK WITHIN A FRAM WORK IN A
WAY THAT'S DYNAMIC AND BEAUTIFUL
AND MEANINGFUL AS THE THINGS
THAT HAVE ALREADY BEEN SAID
TODAY.
THANK YOU.
>>
>> THANK YOU.
WE'RE GOING TO ONLY ASK A COUPLE
MORE QUESTIONS AND IF THERE'S
SOMETHING YOU WANT TO EXPRESS OR
SHARE I AM NOT ASKING PLEASE GO
AHEAD AS WELL.
PROBABLY THE NEXT QUESTION AND
THEN WE'LL OPEN IT UP FOR
DISCUSSION FOR EVERYBODY TO
REFLECT ON WHAT YOU'VE SHARED.
I WANT TO KNOW A LITTLE BIT MORE
ABOUT EXAMPLES OF STRATEGIES OR
ACCOUNTABILITY YOU JUST RAISED.
I THINK THAT'S AN INTERESTING
QUESTION AND ALSO IF ANYONE
WANTS TO ADDRESS THE QUESTION
AROUND TRIBAL OR INDIGENOUS
JURISDICTION AND WHO DOES THAT
APPLY TO.
WHERE ARE THERE LIMITS OF THAT
AUTHORITY OR NOT AND TALK ABOUT
THAT BECAUSE THAT'S SOMETHING
WARE GRAPPLING WITH ON OUR END
ESPECIALLY WHEN WE START GOING
INTO URBAN SPACINGS AND OTHER
KINDS OF AND IT'S GOOD TO HAVE
THE CONVERSATION.
IF YOU HAVE COMMENTS ON KEY
ETHICAL CONSIDERATIONS WE SHOULD
BE THINKING ABOUT.
THOSE THREE ELEMENTS.
PICK WHICH ONE YOU WANT,
ACCOUNTABILITY, CULTURAL
CONSIDERATION OR THE
JURISDICTION AREA WHERE THE
BOUNDARIES AND HOW THEY SIT SO
YEAH.
>> SO DO YOU WANT ME TO ANSWER
EVERYTHING?
>> YOU CAN START AND WE CAN
ROTATE BACK.
>> I WILL FIRST ADDRESS THE ONE
QUESTION ABOUT TRIBAL OR
INDIGENOUS JURISDICTIONS, WHAT
SHOULD BE RECOGNIZED AND
EXAMPLES.
I FEEL TRIBAL GOVERNMENT THE
MOST CAPABLE OF ONGOING DIALOGUE
REGARDING NIH'S DATA SOVEREIGNTY
POLICIES.
I HEARD SOMEONE ELSE SAY THEY
HAVE A SMALL COMMUNITY AND FROM
EYE TRIBE OF CHIPPEWA INDIANS
WITH 56,000 REGISTERED
THROUGHOUT U.S. AND SOME IN
CANADA.
FOR ME I THINK WITH OUR SIZE WE
CAN BE GUARANTEED WE HAVE
ENROLLED THEY'LL ASK WHAT IS
YOUR ETHNICITY AND OF COURSE
THEY'LL CHECK NATIVE AMERICAN.
FOR US IT'S IMPORTANT TO ADD
WHAT TRIBAL AFFILIATION.
I'M PRETTY POSITIVE THEY CHECK
THE NATIVE AMERICAN BOX.
WE'RE NEVER NOTIFIED THEY'RE NOT
INVOLVED AND THERE'S NATIVE DATA
OUT THERE BELONGING TO OUR
MEMBERS AND WE HAVE NO IDEA.
THAT WOULD BE HELPFUL IS TO ADD
A TRIBAL AFFILIATION.
AN EXAMPLE GIVEN BY OUR OTHER
BOARD MEMBERS IS THE NAVAJO
NATION.
THEY HAVE A HUMAN RESEARCH
REVIEW BOARD.
AND CONTROL RESEARCH SINCE 1996
WIN A 12-STEP PROCESS INCLUDING
COMMUNITY PARTNERS.
AND ALL DATA IS RETURNED TO THE
NAVAJO NATION AT THE END.
THAT'S IMPORTANT TO NOT JUST LET
OUR TRIBES KNOW WE HAVE TRIBAL
MEMBERS INVOLVED IN THE RESEARCH
BUT THE RESEARCH WILL BE
RETURNED OR GIVEN TO THE TRIBE
AT THE END.
>> I THINK ACCOUNTABILITY IS
VERY IMPORTANT.
IN THE PAST THERE HASN'T BEEN
SOME ARE HARD TO DRAW A SPECIFIC
GENERALIZATION OTHER THAN A
TRIBAL GOVERNMENT AND HONOR WHAT
WE SAY.
IT'S FRUSTRATING SOMETIMES WHEN
A COUNCIL APPROVES A RESEARCH
PROGRAM AND THEN TWO YEARS LATER
THERE'LL BE A CHANGE AND THEY'LL
PULL IT.
BUT THAT'S THE PREROGATIVE OF
THE PEOPLE AND MAY BE
CHALLENGING BUT IT IS THEIR
RIGHT AND WE NEED TO UNDERSTAND
THAT.
MUCH OF THE WORK WE'RE CONCERNED
WITH HAS TO DO WITH BEHAVIORS.
WE SHOULD ADVOCATE FOR BETTER
TRAINING AND DEVELOPING THE NEXT
GENERATION OF TALENT AMONG
NATIVE SCHOLARS IS A BIG
CHALLENGE IN ITSELF.
ATRAINING IN ETHICS AND RULES
AND REGULATIONS AND AS AU
HEADLINE
>> I'LL TRY TO CAPTURE WHAT THEY
SAID.
AND RESEARCH AND WHAT COULD BE
MADE APPLIED BROADLY AND
INVOLVES TO THE POPULATION
PLANNED.
THERE ARE MORE NATIVE HAWAIIAS
AND AND NATIVE HAWAIIANS AGAIN
THIS THOUGH MANY OF US LIVE
OUTSIDE HAWAI'I WE'RE
INTERTWINED WITH CULTURAL
IDENTITY WITH ENVIRONMENT, LAND,
RESOURCES AND HOLISTIC
PERSPECTIVE IN OUR UNDERSTANDING
OF THE WORLD AND DATA CAN HAVE
PROFOUND IMPLICATIONS FOR
OPPORTUNITIES AND WELL BEING IN
GENERAL.
I THINK THE JURISDICTIONS CAN
LOOK AT INDIGENOUS GROUPS AND
APPROVAL SHOULD BE SOUGHT FROM
HAWAIIAN SERVING ORGANIZATIONS
OR SERVING THOSE COMMUNITIES AND
THOSE ON MAIN LAND THERE'S A LOT
OF HAWAIIAN ORGANIZATIONS ARE
CONNECTED TO AND DEFINITELY NOT
TIED TO HAWAI'I.
HAWAIIAN COMMUNITY MEMBERS IN
THE URBAN CLUSTERS TYPICALLY
MAINTAIN THE STRONG CULTURAL
TIES AND THEIR DATA SHOULD BE
ENFORCED LOCALLY AND NATIONALLY.
I'LL TALK A LITTLE BIT ABOUT THE
HEALTH CENTER SERVING INDIGENOUS
POPULATIONS THAT ADOPT A MORE
FLEXIBLE APPROACH RECOGNIZING
THE STRUCTURE OF DIFFERENT
INDIGENOUS PEOPLES INCLUDING
NATIVE HAWAIIANS AND WHAT
CULTURAL CONSIDERATIONS AND
SHOULD INCLUDE THE CONCEPT OF
RESPONSIBILITY AND RESPECT AND
LOVE FOR THE LAND TO GUIDES HOW
THE DATA IS TREATED, SHARED AND
USED.
DATA IS PART OF OUR STORY AND
CRITICAL TO UNDERSTAND IT TIES
BACK TO MEANINGFUL INFORMATION
THAT'S PART OF OUR STORY.
TRADITIONAL ECOLOGICAL KNOWLEDGE
AND TIES TO THE LAND AND PEOPLE
AND THE ROLE OF CULTURAL
PRACTITIONERS SHOULD BE PART OF
THE GUARDIANSHIP INCLUDING DATA.
CENTRAL TO INCLUDE COMMUNITY
PARTICIPATION IN DECISION MAKING
PROCESSES REGARDING HOW DATA IS
COLLECTED, USED AND STORED AND
ALSO INVOLVES BIO SPECIMENS.
THERE'S DIFFERENT MODALITIES
RESEARCHERS CAN INCORPORATE IN
THEIR PROTOCOLS SUCH AS ONE
APPROACH WE USE IN HAWAI'I FOR
RECONCILIATION OF RESEARCH AND
PRIORITIES.
IN ADDITION TO THAT THE
FUNDAMENTAL GOALS OF
INCORPORATING THE CULTURAL
CONSIDERATIONS SHOULD BE TO AIM
TO ENHANCE RATHER THAN EXPLOIT
THE CULTURAL HEALTH AND SOCIAL
WELL BEING OF COMMUNITIES.
IN THAT RESPECT THERE ARE WAYS
WHERE NOT ONLY WORKING ALONGSIDE
COMMUNITIES AND HAVING THE
MEANINGFUL ENGAGEMENT AND
RELATIONSHIP BUT AS A NATIVE
HAWAIIAN RESEARCHER MYSELF IT'S
DEDICATING OUR ENTIRE CAREER TO
ENGAGE IN COMMUNITY-BASED
RESEARCH THAT THEN PROMOTES THE
HEALTH AND WELL BEING OF THOSE
INVOLVED IN THE STUDIES AND SO
IT'S A VERY DIFFERENT
PERSPECTIVE THAN THE TYPICAL
SITUATIONS WHERE YOU'RE TRYING
TO RECRUIT PARTICIPANTS IN THE
RESEARCH STUDY AND NEVER GO BACK
TO THEM AND THE INFORMATION IS
SEEN AS EXTRACTIVE BUT IT'S AN
ITERATIVE PROCESS WITH OUR
COMMUNITY THAT NEEDS TO HAPPEN.
OF COURSE THAT ENTAILS A LOT OF
MORE NUANCE AND DETAILED
LOGISTICAL CONCERNS AND POLICY
ISSUES BUT WE'LL HAVE TIME TO
DISCUSS THAT LATER I'M SURE.
>> I'M THINKING ABOUT THE
JURISDICTION QUESTION AND I
THINK IT'S IMPORTANT FOR
RESEARCHERS TO GET TO UNDERSTAND
THE TRIBAL NATION THEY'RE
WORKING WITH AND WHAT THEY
IDENTIFY AS THEIR JURISDICTION
BOTH LEGALLY AND IN THE
FRAMEWORK OF THEIR STORY.
SO I COULD SHARE OUR RESERVATION
IS A PIECE OF LAND THAT IS IN
TRUST AND THOSE ARE OUR
RESERVATIONS BUT OUR TRADITIONAL
COMMUNITIES ARE THROUGHOUT
ARIZONA.
OUR ENROLLMENT CRITERIA IS
ENROLLMENT CRITERIA THAT'S BEEN
CREATED AND NOT NECESSARILY
REFLECTING WHO WE ARE AS WOMEN.
PEOPLE NOT ENROLLED ARE INVOLVED
IN CEREMONY OR LIVING IN THE
COMMUNITY.
THEY JUST DON'T MEET THE SILLY
CRITERIA CREATED.
SO IT'S FOR RESEARCHERS TO
UNDERSTAND WHO ARE WE WORKING
WITH AND BUILDING THE
RELATIONSHIP OF WHO ARE WE
WORKING WITH AND HOW IS THAT
PROTECTING DATA SOVEREIGNTY.
UNDERSTANDING WHO IS THIS
NATION.
WHO ARE THE PEOPLE?
HOW ARE THEY IDENTIFIED AS IN
OUR CASE AND WHAT YOU CAN PUT
ANY TRIBE INTO THIS AND I THINK
IT'S CORE TO UNDERSTAND HOW IS
THUS NATION -- HOW DO THEY
DEFINE THEMSELVES.
IT'S GOING TO TAKE A LOT OF WORK
FROM NIH TO FIGURE OUT IT'S
PROBABLY NOT MAYBE IT'S JUST AN
UMBRELLA POLICY THAT IS
INCLUSIVE.
BECAUSE THIS IS AN ISSUE THAT
TRIBES DEAL WITH OUR OWN
CITIZENS THAT SAY I WANT TO BE
PART OF THAT NATION LEGALLY
BECAUSE I IDENTIFY AS THIS
PERSON BUT YET WE CREATE OUR OWN
RESTRICTIONS OF WHO CAN
IDENTIFY.
IT'S NOT A SIMPLE FIT BUT AN
IMPORTANT AREA TO PAY ATTENTION
TO BECAUSE IT IS SOMETHING THAT
WILL COME UP AND REFLECTIVE OF
THE PEOPLE YOU'RE WORKING WITH
AND WHERE YOU'RE TRYING TO AND
CAN BACK FIRE BUT WHEN YOU BUILD
RELATIONSHIPS AND WHO IDENTIFY
WHO WE'RE WORKING WITH WHEN WE
WANT TO GET OUR RESEARCH PROJECT
DONE THAT'S REALLY IMPORTANT.
THAT'S ALL.
>> WE SEE RESEARCHERS COME TO
APE COMMUNITY WITH A GRANT THEY
GOT AND THEY EXPECT THE
COMMUNITY TO BE GRATEFUL AND
WORK WITH THEM AND HAPPENS TO US
ALL THE TIME.
WHEN WE TALK ABOUT
ACCOUNTABILITY WE SEE GREAT
GRANT WRITERS WHO KNOW THE NIH
GAME AND KNOW HOW TO WRITE TO
THE AUDIENCE AND CAN PAINT THE
PICTURE THAT THEY'RE WORKING
WITH IN THIS COMMUNITY WHEN
THEY'RE REALLY NOT.
WHEN WE TALK ABOUT
ACCOUNTABILITY HOW CAN WE BUILD
IN POLICIES INTO OUR RFPs OR
WHATEVER IT IS TO MAKE SURE THAT
DOESN'T HAPPEN?
I CAN SEE VERY SEASONED
RESEARCHERS LOOKING LIKE THEY'RE
FOLLOWING POLICIES BUT THEY'RE
NOT AND NEEDS TO BE TRAINING SO
COMMUNITY MEMBERS KNOW WHAT TO
ASK AND ABOUT WHAT THEY CAN
DEMAND.
WHAT THEY CAN ASK FOR AND WHAT
WRITES THEY HAVE.
WHEN WE TALK ABOUT CAPACITY
BUILDING, THAT NEEDS TO HAPPEN
IN THE COMMUNITY SO COMMUNITY
MEMBERS AND EVERYDAY COMMUNITY
MEMBERS AND PARTICIPANTS WHO GET
APPROACHED TO DO RESEARCH NEED
TO BE ABLE TO ASK THE QUESTIONS
AND KNOW THE TERMINOLOGY.
WE'VE BEEN DOING THOSE THINGS.
WHAT IS A P.I.?
PEOPLE ARE LIKE IS THAT A
PRIVATE INVESTIGATOR?
THERE'S SO MUCH TRAINING AND WE
FOUND COMMUNITIES ARE YEARNING
FOR IT.
WE HELD THE RESEARCH SUMMIT THAT
WAS TALKED ABOUT AND ALL THESE
FEMALE POWERFUL HAWAIIAN LEADERS
DOING WONDERFUL THINGS IN THE
COMMUNITY SAY THEY WANT TO DO
THIS BUT THERE NEEDS TO BE
TRAINING TO ENGAGE IN RESEARCH
IN MEANINGFUL WAYS.
ON THE FLIP SIDE, RESEARCHERS
NEED TO BE TRAINED TO WRITE THE
GRANT AND MAYBE GET A LETTER OF
SUPPORT AND GET THE GRANT AND
COME TO THE COMMUNITY AND NOT
LEAVE ANGRY BECAUSE THEY THINK
NATIVE COMMUNITIES DON'T WANT TO
DO RESEARCH.
THEY DON'T WANT TO DO SCIENCE.
SO WE SEE THAT TIME AND TIME
AGAIN AND IT'S REALLY SOUL
SUCKING.
EACH L I'M THINKING WHAT NEEDS
TO HAPPEN SO THE POLICIES CAN BE
ACTUALIZED IN A MEANINGFUL WAY
THAT'S POSITIVE.
I STE IF WE JUST IMPLEMENT THE
POLICY WITHOUT THE WIDER
STRUCTURE OF GRANT ENTERPRISE
THERE WILL BE PEOPLE WHO FIND
LOOPHOLES AND AND PERPETUATE
EXPLOITIVE RESEARCH.
>> I THINK I WANT TO PIGGYBACK
OFF WHAT WAS SAID.
HAVING FLEXIBILITY WITHIN THE
RESEARCH REALM.
I'M FROM ALASKA BUT WIN THING I
WANT TO BRING ATTENTION TO IS
MANY TRIBES HAVE LOST MEMBERS.
THEY ADOPTED THE CULTURAL NORMS
AS THEY'RE OWN SO YOU CAN'T GO
IN AND SAY THEY BELONG TO THE
TRIBE BUT MAYBE THEY WERE
ADOPTED INTO THE NAVAJO TRIBE
AND THAT'S THEIR CULTURAL NORM.
THAT'S THEIR NEW WORLD VIEW AND
I WOULD HATE FOR SOME FOLKS TO
GET PIGEON HOLED INTO SOMETHING
SPECIFIC.
HAVING SOME FLEXIBILITY, HAVING
SOME ACCOUNTABILITY.
MAYBE SOME PEOPLE WERE ADOPTED
OUTSIDE THE TRIBE AND HAVE NO
IDEA THEY EVEN BELONG TO A
TRIBE.
MAYBE THAT'S THEIR REALITY.
AND HAVE FLEXIBILITY WITHIN THE
POLICY AS WELL.
AND GIVING THEM THE SPACE IT
EXPLORE WHERE THEY CAME FROM AND
MAYBE RESEARCH CAN HELP THEM
MAKE THAT CONNECTION BACK TO
THEIR PLACE.
>> I'LL SPEAK ABOUT THE
JURISDICTION QUESTION.
IN THINKING OF COMPILING
THOUGHTS AHEAD OF TIME ON THE
PANEL TOPIC, BY THE WAY, I'M NOT
MARRIED TO ANY OF THESE.
THESE ARE ACTIVELY GOING THROUGH
MY HEAD I'LL THINK ONE THING AND
THEN ARGUE WITH MYSELF BUT THE
CONCEPT OF JURISDICTION IS A
LIMITING ONE AND A MANDATE TO
CONSULT WITH DIFFERENT
ORGANIZATIONS, IN THINKING ABOUT
GOVERNMENT TO GOVERNMENT
RELATIONSHIPS, JURISDICTION IS A
VERY LEGALISTIC TERM.
THERE'S NOT MUCH DAYLIGHT AND BY
DEFINITION IT HAS TO FIND THE
DAYLIGHT.
JURISDICTION FROM A LEGALISTIC
STANDPOINT OR SERVICE AREA,
HOWEVER YOU'RE DEFINING THIS,
DOES NOT ENCOMPASS THESE THINGS
THAT WE'RE TALKING ABOUT THAT
OUGHT TO BE PRESENT IN THIS
POLICY AND SO I DON'T KNOW WHAT
THAT MEANS.
GOOD LUCK FOR YOU GUYS AS YOU
DRAFT THIS.
I'M NOT SURE JURISDICTION
CAPTURES OR MAYBE IT JUST
WARRANTS A CERTAIN KIND OF
CLARIFICATION BECAUSE BY THE
PERSPECTIVES IN THE ROOM IT'S
BIGGER THAN THAT JURISDICTION
TERM AND THE FEDERAL GOVERNMENT
TO GOVERNMENT OBLIGATION TO
TRIBES BECAUSE THAT DOESN'T
ENCOMPASS THE THINGS THAT WE'VE
ALREADY HEARD.
SO I DON'T KNOW WHAT THAT MEANS
FOR YOU GUYS BUT IT STRIKES ME
AS SOMETHING MAYBE JURISDICTION
NEEDS TO FLUSH OUT A LITTLE BIT
MORE.
WHILE I HAVE THE MIKE I WANT TO
BRING UP BECAUSE IN THINKING
ABOUT JURISDICTION AND THE URBAN
ISSUE, THE URBAN QUESTION, THIS
IS SOMETHING I KNOW A LOT OF
PEOPLE HAVE BEEN TRYING TO
TACKLE AND SARA, I DON'T MEAN TO
CALL YOU OFF GUARD OR ANYTHING
LIKE THAT BUT WHEN YOU WALKED IN
THE ROOM IT DID REMIND ME THAT
THERE HAVE BEEN EFFORTS OVER THE
PAST FEW YEARS TO DRAFT SOME
GUIDANCE ON THE ISSUE OF TRIBAL
DATA IN URBAN AREAS.
I DON'T KNOW WHERE THAT STANDS.
I KNOW MATT'S QUESTIONS ABOUT
URBAN POLICIES, THIS ONE ABOVE
THAT I DON'T KNOW WHERE THAT
EFFORT STANDS IN RELATION TO
THIS ONE.
IT WOULD BE GREAT TO GET AN
UPDATE ON AND LET PEOPLE KNOW
WHERE THE PROCESS WAS AND WHERE
IT STANDS NOW OR MAYBE SOME TIME
TOMORROW.
THANK YOU.
WE'RE EXPECTING TO POST THE DATA
SOVEREIGNTY.
WE WANT TO GET ID IDENTIFIED
FIRST AND THEN ALIGNED.
IT'S STILL A WORKING DOCUMENT.
[OFF-MIC]
.
>> I WANTED TO OPEN IT UP FOR
THEIR GROUP OR ANY CONVERSATION
ABOUT THINGS SHARED SO FAR OR
THINGS PEOPLE WANT TO ADD OR ASK
THE PANELISTS THEMSELVES.
JUST OPEN IT UP FOR THE NEXT FEW
MINUTES HERE.
>> I THINK PART OF THE CHALLENGE
OR BASIS OF THE CHALLENGE HAS
BEEN THE HALLMARK OF RESEARCH
SUCCESS AT LEAST IN THIS COUNTRY
OVER THE PAST 150 YEARS AND
THAT'S INVESTIGATOR ORIGINATED
RESEARCH.
OF COURSE WHAT ARE THE MOTIVES
AND MOTIVATIONS OF INVESTIGATORS
TO DO THAT.
WE HAVEN'T REALLY BEEN ABLE TO
PRESCRIBE.
AND THERE'S CERTAINLY BEEN A LOT
OF MISUSE OF THAT.
THAT'S BEEN THE STRONGEST ACTOR
OF RESEARCH AND WE HAVE TO THINK
WHETHER IT'S USEFUL OR
SUFFICIENT OR PROPER FOR THIS
KIND OF RESEARCH.
I HADN'T THOUGHT ABOUT IT ENOUGH
TO OFFER ANY RECOMMENDATION
EXCEPT I SEE THE TENSION BETWEEN
INVESTIGATOR-ORIGINATED RESEARCH
AND LESS THAN HALF INVESTIGATORS
BEING NATIVE.
THE NUMBER OF
INVESTIGATOR-ORIGINATED RESEARCH
IN THIS AREA IS GOING TO BE
MINUSCULE.
SO WE WANT HEALTH RESEARCH TO
PROCEED, I THINK WE NEED TO
THINK AND RETHINK THE MODEL.
WE CAN THINK WHAT'S WRONG WITH
ALTERNATIVE MODELS.
I THINK THEREIN LIES PART OF THE
PROBLEM IS WHAT OUR BASIC
STRUCTURE HAS BEEN.
WE CAN TRY TRAINING FOR THE NEXT
GENERATION AND TRY TO HIGHLIGHT
THE TRIBES' RESPONSIBILITY.
THAT'S ALTERNATIVE WAYS OF
THINKING OF SOLVING THE PROBLEM
BUT THERE'S RELATIVELY SMALL
APPROACHES ON THE BIG SCALE TO
THE OVER ALL BUT I DO THINK IT'S
IMPORTANT TO SOMETIMES PAUSE AND
REFLECT ON OUR MODEL OF RESEARCH
AND THE MOTIVATORS INVOLVE.
-- INVOLVED.
>> THANK YOU FOR YOUR RESPONSES
WHICH IS AND OVERALL IN SCIENCE
THERE'S A CENTRALIZATION OF
POWER AND THOSE WHO CAN VOTE.
WE'RE NOT ACTUALLY SERVING THOSE
WHO CANNOT AND NOT ACTUALLY
LISTENING TO THOSE WHO DON'T
HAVE A VOICE.
HOW CAN WE THINK ABOUT
JURISDICTION IN A MORE EXPENSIVE
WAY THAT IS LOOKING AT THOSE
IMPACTED BY THE HEALTH TOPICS
WE'RE RESEARCHING AND I KNOW
THIS IS UNFAIR BUT SOMETHING I
STRUGGLE WITH HOW DO WE NOT
REPLICATE SYSTEMS OF
COLONIZATION INDOCTRINATED TO
REBUILD FOR OTHER ENTITIES.
I DON'T KNOW EXACTLY HOW TO DO
THAT MYSELF BUT YOU THINK IT'S
AN IMPORTANT QUESTION AND
QUESTIONING THE FOUNDATIONS OF
THIS QUESTION LIKE WHEN WE THINK
ABOUT THE WAYS THE LEGAL SYSTEM
HAS HARMED OUR PEOPLE.
JUST A GENERAL QUESTION.
SO MANY GREAT QUESTIONS AND
CONSIDERATIONS.
I WANT TO ADD TO WHAT CLIFF
SAID.
THANK YOU FOR BRINGING THEM UP
BECAUSE I THINK IT'S SUPER
IMPORTANT IN OUR CONVERSATION
LIKE THE ORIGINS OF HOW WE SEE
AND I FELT THIS WAS A MODALITY
TO GIVE BACK IT MY COMMUNITY AND
ADDRESS THE ISSUES WE SEE IN
HEALTH DISPARITIES.
FOR ME, HAVING A Ph.D. WASN'T AN
INDIVIDUALISTIC DECISION IT WAS
A COMMUNAL DECISION.
I THINK HOW WE TREAT OUR DATA
TOO IT'S NOT THAT INDIVIDUALS
WHO PARTICIPATE IN RESEARCH
STUDIES AND DATA GOES INTO THIS
SPACE.
I THINK OUR COMMUNITY VIEWS
ESPECIALLY IF IT'S A NATIVE
HAWAIIAN DATA POINT THAT'S ALSO
PART OF THEIR STORY BECAUSE
WE'RE CONNECTED.
SO IT'S REALLY DIFFICULT BECAUSE
THE STRUCTURE HAS BEEN SET UP
FROM THE VERY BEGINNING ACADEMIC
SORT OF ASPECT IS VERY
INDIVIDUALISTIC AS WELL AS THE
OTHER SIDE FOR THE RESEARCH
ITSELF FOR THE IRB THAT'S
STRUCTURED TO PROTECT INDIVIDUAL
RIGHTS AND INFORMATION AND THE
LOGISTICAL THINGS ABOUT THAT
TOO.
IT'S NOT NECESSARILY COMMUNITY
CENTERED OR COMES FROM A
FRAMEWORK OF POPULATIONS THAT
ARE MORE ORIENTED TOWARDS THE
HOLISTIC RATHER THAN
INDIVIDUALISTIC AND CAN CREATE
TENSIONS IN POLICIES AND HOW
THAT LOOKS IN THE COMMUNITY.
I'LL TRY TO END A LITTLE BIT ON
YOUR QUESTION.
WE ARE NOT RECOGNIZED AS A
FEDERALLY INDEPENDENT NATION BUT
NATIVE HAWAIIANS CONSIDER
THEMSELVES AS NATIVE HAWAIIAN
ORIGIN STUDIES CONNECTED TO OUR
COMMUNITY.
THE WAY I'VE APPROACHED IT IN MY
WORLD IS WE COLLECT INFORMATION
FROM INDIVIDUALS AND ENGAGED
THEM IN THE PROCESS AND THE
ENTIRE FRAMEWORK OF THE STUDY IS
AN INDIGENOUS PERSPECTIVE TOO.
I THINK ABOUT THE INTERACTIONS
AND THEIR UNDERLYING
CONTRIBUTING MECHANISMS FOR
DISEASE FOR EXAMPLE AND THAT
COMES FROM A VERY INDIGENOUS
PERSPECTIVE WHERE A LOT OF
THINGS ARE CONNECTED.
OUR HAWAIIAN WORLD OF HEALTH
ENCAPSULATES THE DEVELOPMENT AND
HOW THAT RELATES TO GENERATIONAL
AND INTERGENERATIONAL HEALTH
DEVELOPMENTS THROUGH LIFE.
THAT'S THE STARTING POINT FOR US
TO ADDRESS SOME QUESTIONS FOR
OURSELVES WHAT ARE THE ORIGINS
OF THE DISEASES WE SEE THAT ARE
HIGHLY PREVALENT IN POPULATIONS
AND HOW COMMUNITIES USE
INDIGENOUS KNOWLEDGE AND
CULTURAL PRACTICES TO REVERSE
THE PRACTICE AND THE HIGH RATES
OF CHRONIC CONDITIONS AND REDUCE
THE RISK FOR MORTALITY TOOLS AND
CONDITIONS AND OTHER QUESTIONS
THAT WE ASK BUT IT COMES FROM
THAT BASIS WHERE WE CAN USE OUR
OWN FRAMEWORK TO UNDERSTAND THAT
MORE DEEPLY BUT USING RESEARCH
AS TOOLS.
USING METHODOLOGIES AND
STRATEGIES THE TECHNOLOGY AS
TOOLS TO INVESTIGATE THAT ALONG
SIDE OUR COMMUNITY WITH THAT
CULTURAL KNOWLEDGE INCORPORATED
AS PART OF THE PROCESS OF
RESEARCH.
THAT'S ONE THING I THINK
HIGHLIGHTS THE INNOVATION IN OUR
COMMUNITY AND DRAWING THAT OUT
AND AT THE INDIVIDUAL LEVEL
WHERE WE COLLECT ANY QUESTIONS,
SURVEYS OR BIO SPECIMENS OR DO
GENETIC OR MICROBIOME OR OMICS
RESEARCH WE PROVIDE INFORMATION
BACK TO EACH PARTICIPANT AS PART
OF THE STUDY BEFORE PROCESSING
THE WORK AND CREATED SUPPORT TO
HELP MANAGE THE DATA AND WHERE
IT GOES AND HOW IT LIVES.
SOME ANONYMIZED AGGREGATED DATA
IS INDIVIDUAL TO INDIVIDUALS AND
COMMUNITY MEMBERS WHERE THE DATA
COMES FROM AND LIVES IN A
SPACE -- WE'LL TALK ABOUT THIS
IN THE NEXT PANELS ABOUT DATA
OWNERSHIP AND HOW THIS MIGHT BE
UTILIZED.
I THINK OUR COMMUNITY INTEGRATES
THAT WITH THEIR STORY AND THE
WORK THEY DO.
I WORK WITH A LOT OF COMMUNITY
ORGANIZATIONS AND PRACTICES
DEVELOPING INDIGENOUS CULTURAL
PRACTICES SELF-SUSTAINING AND
ECOLOGICAL PROGRAMS AND HOW THEY
CONNECT TO QUESTIONS IMMEDIATE
OF THEIR RESEARCHERS QUESTIONS.
THEY UNDERSTAND THAT'S A GREAT
RESOURCE FOR THEM TO UTILIZE TO
HELP WITH ADDRESSING A LOT OF
THE SOCIAL ISSUES AND OTHER
ONGOING CONCERNS, ENVIRONMENTAL
ISSUES THEY MAY BE CONCERNED
ABOUT IN ADDITION TO THE HEALTH
INFORMATION WE'RE COLLECTING.
IN THAT SENSE THERE'S
RECIPROCITY AROUND HOW WE ENGAGE
THE COMMUNITY IN OUR RESEARCH
AND INVOLVE NOT JUST THE
INFORMATION WE'RE COLLECTING BUT
ALSO SHARING BACK AND HOW IT'S
FRAMED IN THIS HOLISTIC
APPROACH.
SO I THINK IT CAN BE DONE.
THERE ARE EXAMPLES HOW THAT CAN
BE DONE IN A WAY THAT RECOGNIZES
EVEN IF WE'RE NOT FEDERALLY
RECOGNIZED AS A SOVEREIGN ENTITY
TO THE NEXT LEVEL.
AND RESEARCHERS IN DIFFERENT
FIELD BUT CAN SEE THE VALUE OF
THAT KIND OF ENGAGEMENT.
EVEN IF THEY'RE GOING TO
DIFFERENT DISCIPLINARY AREA IT
MAY NOT LOOK LIKE AN EXISTING
MODEL OF AN INDIGENOUS FORM OF
THAT DISCIPLINARY AREA AND LOU
THEY ADOPT THAT TO THE COMMUNITY
THERE'S A ROLE THERE AND CAN SEE
HOW IT CAN PLAY OUT IN GENERAL
DATA SOVEREIGNTY AND HOW THAT
WORKS IN ADDRESSING THESE ISSUES
IN THEIR COMMUNITY.
>> WELL, THANK YOU GUYS.
I WANTED TO EXPRESS MY GRATITUDE
FOR EVERYTHING YOU'VE SHARED BUT
I KNOW THERE'LL BE MORE THINGS
AND OPPORTUNITIES TO SHARE AS WE
GO ON THROUGH THE DAY.
AND SO WANT IT GIVE YOU GUYS A
BIG THANK YOU.
WE'LL TAKE A SEVEN-MINUTE BREAK
WE'RE NOT THAT FAR BEHIND, YEA.
ANOTHER BACK ROOM BREAK AND GRAB
A SNACK AND IN AN HOUR WE'LL BE
CONCLUDING AND TAKING A FORMAL
BREAK FOR LUNCH.
THE NEXT PANEL YOU GUYS GET
READY, PANEL 2.
WE MIGHT HAVE TO DO DOSY DO ON THE SEATING.
ALL RIGHT.
MY COLLEAGUE IS GOING TO TAKE
OVER.
GO FOR IT.
>> HELLO, EVERYONE.
LUCKILY I DON'T HAVE TO SWAP
NAME PLATES.
WE CAN KEEP GOING BACK AND FORM.
SO GIVEN THIS PANEL IS ON
DEFINING CONSENT AND DATA
COLLECTION AND RESEARCH, I
WANTED TO KICK OFF WITH A BIT OF
A BROAD QUESTION FOR EVERYONE
AND WE CAN GO DOWN THE LINE LIKE
THE LAST PANEL DID.
SO THE FIRST QUESTION IS WHAT
DOES INDIGENOUS FREE PRIOR AND
INFORMED CONSENT INVOLVE AND
WHAT CULTURAL FACTORS SHOULD
GUIDE THE DEVELOPMENT THIS
POLICY?
>> WE TALKED A LOT ABOUT THEIR
BEING SO MANY DIFFERENT TRIBES.
I KNOW DR. WALTERS TALKED ABOUT
HAVING TO REVIEW SO MANY
POLICIES AND LAWS AND PROCEDURES
AND THINGS LIKE THAT FOR HOW
EACH TRIBE CONDUCTS RESEARCH A
LITTLE BIT DIFFERENTLY.
SO I THINK THAT'S A BIG ISSUE.
HOW DO YOU ENGAGE SO MANY TRIBES
WITH THE CONCEPT PROCESS BECAUSE
IT'S DIFFERENT IN EACH OF THEIR
CULTURAL PRACTICES ARE DIFFERENT
AND PERSPECTIVES ARE DIFFERENT.
I CAN ONLY SPEAK FOR MY
EXPERIENCE IN THE CHICKASAW
NATION WHO I REPRESENT.
TO US WE TAKE BASICALLY WE VIEW
THE CONSENT PROCESS VERY SIMILAR
TO INDIVIDUAL CONSENT.
AND WE TAKE THE BELMONT
PRINCIPLES OF RESPECT AND
BENEFICENCE TO RESEARCH
PARTICIPANTS WE LOOK AT THE
CHICKASAW NATION IS A RESEARCH
PARTICIPANT AS A WHOLE.
WE APPLY THE SAME PRINCIPLES TO
THOSE SAME RESEARCH PRINCIPLES
TO THE TRIBE.
TRIBAL CONSENT, TRIBAL RISK-HARM
RATIO.
TO US THAT'S BEEN AN EASY WAY TO
LOOK AT IT AS A RESEARCH
PARTICIPANT AND APPLYING THE
SAME PRINCIPLES.
THAT'S THE WAY WE APPROACH IT IN
CHICKASAW NATION.
I'M GLAD I'M PART OF THE PANEL.
AS A STUDENT I'VE HAD THE
OPPORTUNITY TO CONDUCT INFORMED
CONSENT AND DONE WRITTEN
CONSENTS THROUGH SURVEYS BUT
IT'S BEEN GREAT TO LEARN ABOUT
THE PROCESS AND APPROPRIATELY
CARRY IT THROUGH.
I DON'T HAVE TOO MUCH TO ADD TO
THIS SPECIFIC QUESTION.
>> MY CAPACITY AS A RESEARCHER
AND ALSO AS A TRIBAL CITIZEN AS
PARTICIPATED IN RESEARCH AND
THEN HOW WE'RE GOING ABOUT THIS
IN PRACTICE.
SO AT THE LEVEL OF INDIGENOUS
CONSENT I SHOULD SAY I DON'T
KNOW I FEEL THAT I HAVE A
POSITION OR AUTHORITY TO EVEN
TALK ABOUT WHAT A SHAWNEE
CONSENT WOULD LOOK LIKE LET
ALONE SPEAKING FOR OTHER
INDIGENOUS COMMUNITIES AND
TRIBES AND NATIONS.
SO THE WAY WE'VE APPLIED IT HAS
BEEN TO WORK DIRECTLY WITH THE
AUTHORITIES OF THE ORGANIZED
TRIBAL GOVERNMENTS WE PARTNER
WITH AND THAT'S LOOKED LIKE
ENGAGING WITH INSTITUTIONAL
REVIEW BOARDS AND/OR BUSINESS
COUNCILS WHICH I'M SURE IS NOT
UNCOMMON AMONG FOLKS IN THE
ROOM.
AND THAT I WOULD SAY HAS NEVER
BEEN DISCUSSED DIRECTLY AS
COMMUNITY CONSENT.
HOWEVER, THE CLOSEST PROCESS
WE'VE ENGAGED WITH TO THAT
DEGREE OTHER THAN ENGAGING WITH
COMMUNITY ADVISORY BOARDS,
DISSEMINATION TO COMMUNITY
MEMBERS WHICH POINTS TO THE
DYNAMIC THE LAST PANEL BROUGHT
UP WHICH IS IMPORTANT TO
RECOGNIZE IS THERE'S A
DISTINCTION BETWEEN THE AGENCY'S
GOVERNMENTS AND SYSTEMS THAT
SERVE TRIBES AND EVEN THE TRIBES
DEVELOP AND THE COMMUNITIES OF
THE PEOPLE.
AND THEN FOR INDIVIDUAL
PARTICIPANTS WE FOLLOW THE
INFORMED CONSENT PROCESS AS LAID
O
OUT.
>> I'M TRYING TO TALK A LITTLE
BIT ABOUT IT DIFFERENTLY.
I WANT TO TALK ABOUT THE CONTEXT
FOR FPIC.
I LIKE TO THINK ABOUT IT IN THE
FRAMEWORK OF DE-COLONIAL
RESEARCH GOING BACK TO THE
BIGGER QUESTIONS OF LIKE WHO WAS
THE COMMUNITY INVOLVED IN
DEFINING THE NEED AND THE
RESEARCH QUESTION.
SO LIKE BASICALLY FLIPPING THE
TYPICAL RESEARCH PARADIGM ON ITS
HEAD AND DOES THE COMMUNITY
DEFINE THE RESEARCH QUESTION AND
DID THEY -- HOW ARE THEY GOING
TO GOVERN THE RESEARCH.
HOW WILL THEY APPROVE THE
RESEARCH?
AND HOW WILL THEY FOLLOW THROUGH
WITH THE RESEARCH AND ADDRESS
THE LEGACY QUESTIONS AND ADDRESS
ALL THOSE OTHER KINDS OF
QUESTIONS.
AND SO IN THAT SENSE THEN
CONSENT BECOMES A PROCESS RATHER
THAN AN EVENT.
AND SO THE COMMUNITY IS ENGAGED
THROUGHOUT EVERY ASPECT OF THE
RESEARCH PROPOSAL AND PROCESS.
AND IN CONTROL RATHER THAN BEING
THE SUBJECT OF RESEARCH.
AND RELATIONSHIP MAINTENANCE AND
DR. SMITH ASKED CAN YOU COME
BACK AND HAVE COFFEE WITH THE
COMMUNITY THE NEXT WEEK OR YEAR.
HAS THE RELATIONSHIP BEEN THAT
GOOD THAT YOU'RE COMING BACK TO
THE COFFEE TABLE BECAUSE YOU
FINISHED ONE AND MAYBE NOW
RESEARCH QUESTIONS HAVE EMERGED
BUT IT'S COMMUNITY CONTROLS.
SO I'LL LEAVE IT THERE.
I GUESS THE REASON I ASKED ABOUT
NUANCE IN THE EMERGING NIH
INDIGENOUS DATA SOVEREIGNTY
POLICY IS BECAUSE ONCE THINGS
BECOME POLICY THEY BECOME FIXED
AND RIGID AND INAPPLICABLE
DESPITE GOOD INTENTIONS THAT MAY
HAVE INFORMED THEIR CREATION IN
THE FIRST PLACE.
I RUN INTO THIS MANY TIMES IN
TRYING TO FUNNEL, IF YOU WILL,
OUR WORK WITH TRIBAL COMMUNITIES
THAT IS OPEN, EXPANSIVE,
EVOLVING, GROUNDED IN CULTURAL
CONTEXTS AND RIGID SYSTEMS AND
STRUCTURES WITHIN OUR ACADEMIC
INSTITUTIONS, IN MY CASE.
AS WE KNOW THINGS DON'T FIT WHEN
THE RUBBER HITS THE ROAD AT THAT
LEVEL.
WHEN WE TALK ABOUT FREE AND
INFORMED CONSENT I'M THINKING
CONCRETELY HERE ABOUT CONSENT
FORMS AND YOU HAVE TO INCLUDE
THE LANGUAGE EXACTLY AS WRITTEN
AND AGAIN I'M SURE IT CAME FROM
A GOOD PLACE WITH GOOD
INTENTIONS BUT ONCE IT BECOMES
FIXED AND RIGID TO ME IT'S
ALMOST NO LONGER INFORMED
CONSENT I THINK AND I'VE DONE
WORK AND ONE OF THE MOST
INSTRUCTIVE THINGS AT THE
COMMUNITY LEVEL WAS A LARGE
NATIONALLY REPRESENTATIVE STUDY
OF TRIBALLY RUN HEAD START
PROGRAMS.
WE RECRUITED AT RANDOM 20 TRIBAL
HEAD START PROGRAMS AND HAD TO
GO THROUGH THE REVIEW PROCESSES
IN THOSE 20 COMMUNITIES.
AND MAKING IT IN PLAIN HUMAN
LANGUAGE UNDERSTAND WHAT YOU'RE
DOING AND AS A RESEARCHER YOU
HAVE TO VERY MUCH UNDERSTAND THE
NATURE OF THE RESEARCH YOU'RE
DOING.
IT'S LIMITATIONS, IT'S
POSSIBILITIES, WHAT IT IS, WHAT
IT ISN'T, IMPLICATIONS FOR THE
LONG-TERM THAT A TRIBE MIGHT
WANT TO CONSIDER AND SAYING YES
OR NO AND YOU JUST -- YOU HAVE
TO NOT USE THAT IRB-ESE YOU'RE
GIVEN.
WITHIN THE INDIGENOUS DATA
SOVEREIGNTY POLICY I THINK
GIVING PERMISSION AND THE COMMON
THREAD OR THE HEARTBEAT OF THE
POLICY IS THERE'S SPACE AND THE
ASSOCIATED SPACE AND TIME AND
RESOURCES TO TAKE THAT TIME TO
MEET COMMUNITIES AND PEOPLE
WHERE THEY ARE AND NOT FORCED
INTO FIXED LANGUAGE FOR
STRUCTURES AND AGAIN WE'RE
SPEAKING OF CONSENT BUT I THINK
IT APPLIES MORE BROADLY.
DEF SEF
>> MY NOTES RESOLVE AROUND WHAT
DR. HARRY HAS SAID AND WHAT WAS
DEVELOPED BY DR. CARROLL'S
OFFICE AND WHAT YOU'RE SAYING
THE PRINCIPLES DEVELOPED AND
PEOPLE STOP THINKING WHAT DOES
THE ACRONYM MEAN.
WHO SHOULD BE PROVIDED AND
REVIEW FINAL APPROVAL AND THAT'S
DEPENDENT ON HOW THIS TRIBAL
GOVERNMENT IS SET UP.
IF THAT TRIBAL GOVERNMENT HAS
FEDERAL RECOGNITION AND IS EVEN
CONSIDERED AS A TRIBE.
SO THAT PART I DON'T ENVY YOU IN
TRYING TO DEVELOP A
COMPREHENSIVE POLICY BUT ONE
THING THAT I FEEL STRONGLY ABOUT
IS THAT THE PEOPLE WHO ARE WITH
THE TRIBES IF IT'S DONE IN A
COMMUNITY-ENGAGED WAY, THE
PEOPLE DOING THE ACTUAL CONSENT
PROCESS WHO ARE INVOLVED IN THE
DATA COLLECTION AND THE ONES ON
THE GROUND DOING IT BECAUSE
SOMETIMES AN IRB AS A DESIGNEE
OR HIERARCHICAL GOVERNMENT MAYBE
FORGOT WHAT IT WAS LIKE TO DO
THE CONSENT PROCESS.
>> THERE'S ABOUT 500,000 PLUS OF
US AND THEY'RE ALL DIFFERENT AND
I'M NOT GOING TO TAKE ADVICE
FROM HER.
SHE'S NOT GOING TO TAKE ADVICE
PERFECT ME AND WE'RE GOING TO
COLLABORATE AND FIGURE OUT WHAT
WORKS.
GUARANTEED NOT ALWAYS GOING TO
WORK AND I CAN'T TALK FOR MY
NEIGHBORS BECAUSE THEY'RE IDEA
OF RESEARCH AND THEY MAY NOT
EVEN UNDERSTAND WHAT OUR
RESEARCH IS.
SO JUST EDUCATION ON WHAT
RESEARCH IS WAS THE GAME CHANGER
FOR MY COMMUNITY AND WE BROUGHT
THE POINT OF RESEARCH TO THE
TABLE IN 2017 AND EVERYBODY WAS
PRESENT.
WE DECIDED WE ARE GOING TO FARM
A FRAMEWORK TO START THE PROCESS
OF RESEARCH.
AND IT'S GOING TO FIT THOSE
PRESENT AT THE TABLE.
THAT'S STEP ONE BECAUSE WE DON'T
HAVE THAT RECOGNITION.
I'M NOT LOOKING FOR IT.
I SAW IT IN MYSELF AND THE SORT
OF THAT I EXUDE IS THE SAME
STYLE OF RESEARCH, BIAS OR
WHATEVER YOU WANT TO CALL IT I
PROMOTE IN MY OWN COMMUNITY.
>> I WANT TO TALK HOW IT'S AN
EVOLVING PROCESS AND SOMETHING
THAT POLICIES CAN BE RIGID AND
CAN CAUSE US TO BE SILOED AND
FIXATED ON SPECIFIC THING BUT
HAVING TO BALANCE THAT WITH THE
EVER EVOLVING CONSENTED PROCESS
BASED ON THE RESEARCH QUESTIONS
WE'RE ASKING.
HOW DO WE BALANCE THOSE TWO AND
HOW CAN RESEARCHERS AND THE NIH
ENSURE TRIBAL INDIGENOUS CONSENT
IS ONGOING THROUGHOUT THE COURSE
OF THE RESEARCH PROJECT AS IT
EVOLVES AND CHANGES.
THAT CAN BE OPEN TO ANYONE WHO
WANTS TO START.
>> OUR WORK IS GROUNDED IN
RELATIONSHIP AND THOSE HAVE A
HISTORY, A PRESENT AND A FUTURE.
I THINK THAT THAT'S JUST
FOUNDATIONAL.
IT'S HARD SOMETIMES TO MAINTAIN
RELATIONSHIPS LIKE WITHIN A CON
OF A RESEARCH PROJECT WHEN THOSE
PROJECTS ARE ONLY FUNDED FOR A
FINITE PERIOD OF TIME.
I DON'T REALLY KNOW HOW TO GET
AROUND THAT.
BUT I CAN SAY THAT FOR MYSELF AS
AN INDIVIDUAL FOR COMMUNITIES
HAVE ENDURED BEYOND THE COMINGS
AND GOINGS OF VARIOUS GRANTS.
I WOULD SAY I DON'T NECESSARILY
HAVE A SOLUTION FOR HOW THOSE
RELATIONSHIPS CAN BE
MEANINGFULLY SUSTAINED BECAUSE
IT DOES TAKE TIME AND RESOURCES
AND FUNDING TO KEEP
RELATIONSHIPS GOING BUT THE
EXTENT TO WHICH IT CAN BE ARE
UNDER SCORED THE COVERINGS
HAPPEN IN THE CONTEXT OF
RELATIONSHIPS ONE INDIVIDUAL S
TO COMMUNITY PARTNERSHIPS AND
THE RELATIONSHIP AS AN
ENTERPRISE OVER TIME.
I GUESS RELATIONSHIPS.
>> THAT'S INTERESTING YOU SAY
THAT IF I CAN GO NEXT BECAUSE
YOU'RE THINKING OF THE RESEARCH
AND ONGOINGNESS OF RELATIONSHIP
AND I'M THINKING ON A TECHNICAL
LEVEL WHAT CAN BE DONE.
SO I NOW REALIZE THIS MIGHT
BECOME LIKE VERY CONCRETE AND
OPEN TO INTERPRETATION.
BUT ONE OF THE THINGS I THOUGHT
ABOUT AS A COMPONENT REQUIRED
FOR THE RESEARCH CONSENT IS THAT
WITHIN THE LERT OR RESOLUTION OR
WHATEVER IS GIVEN TOO NIH THE
IRB IS THE ONGOING PREVENTION IS
SPELLED OUT.
THE TRIBES HAS A RIGHT TO ASK
FOR A NEW CONSENT AT FUNDING.
TRIBE AS A RIGHT TO ASK FOR NEW
CONSENT AT DISSEMINATION OR
WHATEVER THE APPROVAL STAGES
ARE.
THE SOONER THEY CAN START THE
BETTER EVEN BEFORE THE RESEARCH
PROJECT.
AND TRIBES YOU HAVE INTERESTING
IN WORK WITH YOU GET TO KNOW THE
COMMUNITY AND FOLKS THERE AND
WHAT THE HEALTH PRIORITIES IN
THIS PARTICULAR CASE IS FOR NIH.
I THINK THE RELATIONSHIPS NEED
TO START EARLY, EARLY, EARLY.
UNFORTUNATELY THE GRANT
MECHANISMS AREN'T SET UP FOR THE
DEVELOPING THOSE RELATIONSHIPS
BECAUSE THE FINDINGS AND YOU
HAVE SIX WEEKS TO GET IT DONE
AND IT'S LIKE OKAY YOU DON'T
WANT TO SHOW UP WITH IT FUNDED
AND ARE YOU WILLING TO DO THAT.
I THINK THAT'S AN IMPORTANT
PIECE THAT NEEDS TO BE ADDRESSED
AND RIGHT NOW I'M ON A TRIBAL
NATIONS ADVISORY COMMITTEE FOR
THE NIH PROJECT CALLED THE
DISCOVERY PROJECT AND I BELIEVE
IT'S NIDDK.
AND IT WAS FUNDED AND I'M HAVING
A HARD TIME WRAPPING MY HEAD
AROUND THIS AND IT WAS FUNDED
AND IN THE FIRST YEAR IT'S
SETTING UP RELATIONSHIPS.
IT'S LIKE WOW THE PLANNING IS
GOING ON IN THE FIRST YEAR.
NOTHING IS SET IN STONE.
THERE'S THREE -- IT'S A NATIONAL
STUDY.
THREE OF THE SITES ARE WORKING
WITH A LOT OF FIRST AMERICAN
PEOPLE AND THIS IS GIVEN IN TIME
TO REACH OUT TO THE CHEROKEE AND
SAY WHAT KIND OF ISSUES DO YOU
HAVE WITH THIS AND WE'RE HAVING
THE CONVERSATIONS BEFORE.
AS WE'RE DIFFERENT INTEREST
TRIBE TO TRIBE AND ECHOING GOOD
LUCK WITH THIS.
I LOVE THE MECHANISM WHERE
THERE'S RELATIONSHIP WITH TRIBES
INTERESTED IN PARTICIPATING
WORKING OUT THESE THINGS IN
ADVANCE LISTENING TO EACH TRIBE
AND SAYING OKAY, WE CAN WORK
WITH THAT.
I HOPE IT'S A MECHANISM BECAUSE
IT SETS A FOUNDATION FOR A
SUCCESSFUL PROJECT.
IT'S BENEFICIAL SO THANK YOU.
>> I'LL MY AGREEMENT TO WHAT'S
BEEN SAID SO FAR TO THE PLANNING
STAGES AND THE LUCK INVOLVED.
I ALSO HAD -- MY MIND WENT TO A
CONCRETE PROCEDURAL SUGGESTION
THAT COULD BE INCLUDED AS WELL
AND YOU THINK WITH CAREFUL
CONSIDERATION YOU CAN BUILD IN
FLEXIBI
FLEXIBILITY AND THE ON THE
GROUND REALITY AND THE
MECHANISMS WE ALREADY HAVE FOR
ONGOING REVIEW FOR LIKE AN RPGR
FOR AGREEMENTS WITH TRIBES I
COULD SEE A SITUATION WHICH
YOU'RE IN A RELATIONSHIP IN
RESEARCH IN A COMMUNITY AND YOU
HAVE THE DUTY TO PROVIDE THAT
SAME LEVEL OF INFORMATION
ANNUALLY TO YOUR COMMUNITY
PARTNERS AND I THINK THAT MIGHT
BE A MECHANISM OF KEEPING THAT
RELATIONSHIP PERMEATING THROUGH
THE PROCESS.
AND STRONG EYES ABOUT THE
REPORTING RPIs YET AGAIN.
>> THERE'S MANY FORMS
>>
I FEEL LIKE OKAY WE NEED TO MAKE
SURE AND NAVAJO NATION HUMAN
RESEARC
RESEARCHER.
AS A NAVAJO NATION WE HAVE AN
IRB AND THINKING ABOUT IT AND
MAKING SURE THEY'RE UP TO DATE
ON WHAT THEY'RE PARTICIPATING
AND MAY MENTIONED COMMUNITY
TRAINING AND UNDERSTANDING THE
WHOLE PROCESS MY MOM RECENTLY
PARTICIPATED AND DOESN'T
UNDERSTAND AND THE PARTICIPANTS
A WHOLE VIEW OF THE PROCESS AND
FOR ME I WAS A STUDENT AND IT'S
AN INFORMED CONSENT PROCESS AND
MAKING SURE THEY UNDERSTAND THE
ACTION GOES IS HELPFUL.
>> I AGREE WITH EVERYTHING SAID.
THIS AN OVERSIGHT QUESTION.
IT'S RELATED TO CAPACITY
BUILDING.
I WANT TO FOCUS ON THE CONCEPT
OF BEING FULLY INFORMED BECAUSE
THAT TO ME IS THE CHALLENGE.
A COMMUNITY HAS THE TIME TO
FULLY ENGAGE IN ALL OF THE RISK
AND BENEFITS OF POTENTIAL
RESEARCH AND ARE ABLE TO MAKE
FULLY INFORMED DECISIONS ABOUT
THAT.
THAT REQUIRES SOME ABILITY TO
HAVE OVERSIGHT OVER THE RESEARCH
AND NOT EVERYBODY IS LIKE THE
NAVAJO NATION WITH FULLY FORMED
IRBs AND CODIFIED LAW.
THAT KIND OF THING.
SOME COMMUNITIES ARE VULNERABLE.
HOW DO YOU MAKE SURE THEY ALSO
HAVE THE SAME LEVEL OF
PROTECTION AND OVERSIGHT AND
MAYBE IT REQUIRES ADDITIONAL
TRAINING.
MAYBE IT REQUIRES PARTNERSHIPS
WITH FULLY FORMED COMMITTEES OR
REVIEW BOARDS AND THAT KIND OF
THING.
FINALLY SOME PEOPLE HAVE TALKED
ABOUT RESEARCH AGREEMENTS AND I
FULLY SUPPORT THE USE OF
RESEARCH AGREEMENTS BUT ALSO
GOING BEYOND THAT TO
ESTABLISHING CODIFIED LAW AT THE
TRIBAL LEVEL.
>> SO LIKE WE DON'T HAVE AN
ESTABLISHED IRB BUT DO HAVE OUR
RESEARCH MODEL AND THE SHARK
TANK SO IF THERE'S SOMEONE THAT
WANTS TO DO SOME KIND OF
RESEARCH PROJECT YOU HAVE TO
PARTICIPATE IN OUR MEETINGS
THREE MONTHS BEFORE THE SHARK
TANK SO IT FORCES YOU TO BE IN
RELATIONSHIP WITH THE COMMUNITY.
OUR COMMUNITY IS MADE UP OF AGE
GROUPS.
I LIVE ON THE STREET ON THE PATH
OF THE WARRIOR AND THEY DIDN'T
KNOW WHAT RESEARCH WAS BEFORE
BUT AFTER SEVEN YEARS OF
LEARNING THEY'RE VERY AWARE OF
WHAT THUR RIGHTS ARE AND THE
ONLY ONES THAT CAN VOTE.
ONLY THE PEOPLE FROM OUR
COMMUNITY.
THERE'S PEOPLE WHO SHOW UP THAT
HAVE THE GRANT AND THINK THEY'RE
DOING US A FAVOR.
WELL, PARDON ME YOU'RE [BLEEP]
OUT OF LUCK.
>> I WANTED TO COMMENT ON
DR. HARRY'S FULLY INFORMED
CONSENT STATEMENTS BECAUSE IT'S
SO TRUE IT'S HARD TO GET FULL
GETTING FULL CONSENT.
WE HAVE AN IRB AND WE'VE HAD IT
SINCE 1998 AND I'M THE CHAIR.
BUT IT'S LIKE A PART-TIME GIG.
I DO THAT ON THE SIDE BECAUSE I
LOVE THAT WORK.
AND I'M REALLY INVESTED IN THAT
WORK AND WHAT I LIKE TO DO.
I DO IT HALF ASS SOMETIMES AND
SHOULD DO A BETTER JOB BUT WE
NEED STAFF AND THERE'S AN NIH
MECHANISM TO ESTABLISH OR EXPAND
IRBs IN TRIBES AND SO THAT'S A
GREAT STEP RIGHT THERE BECAUSE I
WOULD LOVE TO HAVE DEDICATED
STAFF TO DO THIS WORK.
THE OTHER ISSUE I HAVE WITH
FULLY INFORMED CONSENT IS DATA
REPOSITORIES, BIG DATA SETS THE
BIGGER THEY GET AND SECONDARY
USE OF DATA.
THE FOURTH YOU GET FROM FULLY
INFORMED CONSENT.
I DON'T KNOW HOW YOU CAN HAVE
FULLY INFORMED CONSENT IN A
REPOSITORY.
YOU MAY AGREE TO PUT YOUR
SPECIMENS IN A DATA REPOSITORIES
BUT I DON'T KNOW HOW IT WILL BE
USED.
WE THESE TO LOOK AT THAT BECAUSE
YOU CAN'T HAVE FULLY INFORMED
CONSENT IF YOU ARE NOT PUTTING
YOUR INFORMATION IN A REPOSITORY
AND THE BIGGER THAT GETS THE
FURTHER YOU GET FROM TRIBAL DATA
SOVEREIGNTY.
THANK YOU.
AND I'LL ASK ABOUT THE MAIN
STRENGTHS AND BARRIERS AND HOW
CAN THEY ADDRESS AND LOOK AT
WHAT OFTEN FACED.
>> RELATIONSHIPS TAKE TIME AND
THERE'S TIME AND SPACE TO THE
PROJECT AND RESOURCES CAN BE
DEDICATED TO HAVING THE TIME AND
THE SPACE TO ENGAGE IN AUTHENTIC
CONVERSATION GROUNDED IN
RELATIONSHIP THAT INVOLVES
DIALOGUE AND BACK AND FORTH.
I KNOW I'VE CONSULTED WITH BOBBY
ON SOME THINGS.
I'VE APPRECIATED THE ABILITY TO
SHARE PERSPECTIVES AND TURN
IDEAS AROUND AND LOOK AT THEM
FROM DIFFERENT ANGLES AND COME
TO CONSENSUS OPINION HOW
SOMETHING SHOULD PROCEED.
AND WHAT WE ARE LOOKING AND YOU
TALKED ABOUT THIS IS THE TIME
AND SPACE TO DO THIS WORK IN THE
WAY THAT IT NEEDS TO BE DONE AND
THAT'S GROUNDED IN RELATIONSHIP
AND HAVING DIALOGUE AND TO THE
CHANCE TO ARRIVE AT SOME SHARED
UNDERSTANDING THAT YOU
CO-CONSTRUCT TOGETHER.
>> IT COMES DOWN TO TRUTH TO
SPEAK THE TRUTH.
>> SO TWO THINGS THAT CAME TO
MIND THAT HAVE BEEN MENTIONED.
IT WAS MENTIONED THE WAYS
INDIGENOUS SCHOLARS CAN BE
IMPACTED BY DOING WITH THEIR
COMMUNITIES.
I'VE SEEN WITH MY OWN TRIBE
INDIGENOUS SCHOLARS GOING
THROUGH THE PROCESS, MAINTAINING
RELATIONSHIPS AND IN
NON-INDIGENOUS SCHOLARS GETTING
A GRANT AND SAYING THEY'RE GOING
TO WORK WITH THE TRIBE AND THEN
THEY COME IN AND BECAUSE THEY
HAVE MONEY THE TRIBE IS KIND OF
ALMOST FORCED TO TAKE ON THESE
RESPONSIBILITIES.
THAT LEADS TO THE SECOND POINT
IS CAPACITY BUILDING IS THAT
TRIBES WET -- HAVE GOTTEN FORCED
TO TAKING ON GRANTS WITHOUT THE
CAPACITY TO EXECUTE THEM.
SOME SCHOLARS WHO MAY NOT BE
TRAINED IN THE RELATIONSHIP
INDIGENOUS OR NOT LOOK AT THE
CO-DEVELOPMENT OR EXECUTION WITH
THE SIZE OF THE BUDGET AND IF
THE TRIBE HAS A LARGE BUDGET
THEN THEY CAN HAVE EQUAL
DECISION MAKING WHERE THEY DON'T
HAVE THE CAPACITY TO DO THOSE
THINGS WHERE THE TRIBES SHOULD
HAVE EQUAL DECISION MAKING
REGARDLESS OF THE SIZE OF THE
BUDGET AND THEY'RE DOING THE
EXECUTION ITSELF OR NOT.
>> OKAY.
WE WANTED TO OPEN IT UP FOR
COMMENTS FROM THE PANEL.
I APPRECIATE YOUR RESPONSES SO
FAR AND STARTED A GREAT
CONVERSATION ON WHAT CONSENT
LOOKS LIKE AND WHAT THESE
POLICIES COULD LOOK LIKE AND
SOME BEST PRACTICES BUT BEFORE
WE OPEN IT UP FOR ANY QUESTIONS
FROM THE REST OF THE GROUP, DO
YOU HAVE STATEMENTS OR FINAL
THOUGHTS?
>> I HAVE A THOUGHT.
IT'S HALF FORMED SO HOPEFULLY IT
CAN GENERATE MORE THOUGHT AND
DISCUSSION.
IN PARTICULAR THINKING ABOUT THE
DIFFICULTIES AROUND WHOLE
INFORMED CONSENT THAT GO BEYOND
INDIGENOUS UNT XHOOS.
AS -- COMMUNITIES AND SOMETIMES
IT TAKES A LONG TIME TO GET TO
INFORMED CONSENT FOR THOSE WHO
DISAPPOINT UNDERSTAND NEURO
IMAGING AND HOW DATA WILL GET
STORED AND THOSE CONVERSATIONS
TAKE A LONG TIME IN ADDITION TO
THE IDEA OF STORING DATA
LONG-TERM IN THE LARGE DATA
REPOSITORIES AND HOW SOMEHOW WE
DEFINED SOMETIMES BIO SPECIMENS
AS NON-HUMAN SUBJECTS DATA
DOESN'T COMPUTE IN MY MIND.
THIS IS NOT IDENTIFIABLE DATA
THOUGH IT'S POSSIBLY THE MOST
IDENTIFIABLE DATA.
THOSE ISSUES ARE LARGER THAN
DATA FOR PEOPLE IN RESEARCH AND
THERE'S A DYNAMIC WHERE THE
ATTENTION WE'RE PAYING TO THIS
MAY GIVE LARGER CONSIDERATIONS
TO SOME OF THESE DYNAMICS WHERE
PERHAPS WE AS INDIGENOUS PEOPLE
OR PEOPLE WORKING IN INDIGENOUS
COMMUNITIES MAY HAVE DIFFERENT
IDEALS THAT GO BEYOND WHAT
TRADITIONAL OR CONVENTIONAL NIH
WISDOM MAY BE AROUND INFORMED
CONSENT AND IF IT'S MORE FAR
REACHING IT SHOULD BE CONSIDERED
AS WELL.
>> I THINK WE CAN THINK OF IT AS
A FUNDAMENTAL RIGHT OF
INDIGENOUS PEOPLES AND NATIONS.
PEOPLE USE THE TERM SOVEREIGNTY
I USE SELF-DETERMINATION AS AN
INTERNATIONAL RIGHT COVERING ALL
PEOPLES AND NATIONS.
THE ISSUE AROUND FPIC I BELIEVE
IS WE GET A LIST OF QUESTIONS
YOU TALKED ABOUT NON-HUMAN
MATERIALS AND THOSE KINDS OF
THINGS.
AT THE INTERNATIONAL LEVEL
STATES INCLUDING THE UNITED
STATES DON'T CONSIDER INDIGENOUS
PEOPLES AS HAVING THE
SELF-DETERMINATION AND IF YOU
READ THE DEPARTMENT OF STATE'S
10 PAGE MEMO ON
SELF-DETERMINATION AND WHEN THEY
SUPPORT THE RIGHTS OF U.N.
PRINCIPLES PEOPLE HAVE A
DIFFERENT TYPE OF
SELF-DETERMINATION BUT NOT THE
INTERNATIONALLY KNOWN STANDARD
AS SELF-DETERMINATION.
TO ME I THINK WE HAVE A
CHALLENGE BECAUSE WHAT WE'RE
TALKING ABOUT IS WHEN AN
INDIGENOUS PEOPLE ASSERT THEIR
FULL RIGHT OF SELF-DETERMINATION
OVER RESEARCH AND WHEN IT COMES
PUSH TO SHOVE.
SO IF YOU'RE NOT PROTECTING YOUR
RIGHT OR KNOWLEDGE OR BIOLOGICAL
MATERIAL USING WESTERN
INTELLECTUAL PROPERTY LAW,
WHAT'S YOUR BACK UP?
IF YOU'RE TRYING TO PROTECT YOUR
RIGHTS UNDER THE UMBRELLA OF
SELF-DETERMINATION SOVEREIGNTY
WILL IT PASS THE TEST?
WILL IT PASS THE JURISDICTIONAL
LEGAL TEST?
I DON'T HAVE THE ANSWER TO THAT
JUDGING BY THE POSITION OF
SELF-DETERMINATION I THINK WE
MIGHT LOSE ON THAT ARGUMENT.
ON THE OTHER HAND, I THINK IT'S
OUR ONLY POPULATION AS
INDIGENOUS PEOPLES IS TO STAND
FIRM ON THE RIGHT OF
SELF-DETERMINE NATION AND TO
PROTECT EVERYTHING THAT'S OURS
UNDER OUR OWN RULES AND LAWS AND
SO ON.
SO I JUST THINK THAT THAT'S
REALLY REALLY IMPORTANT AND THE
PUSH IS ALWAYS GOING TO BE TO
FORCE TRIBES TO USE WESTERN
INTELLECTUAL PROPERTY, TO USE
PATENTS AND COPYRIGHT AND SO ON.
BUT THOSE THINGS COME WITH AN
EXPIRATION RATE AND WHAT HAPPENS
WHEN THE PROTECTIONS EXPIRE GOES
INTO PUBLIC DOMAIN AND NO LONGER
BELONGS TO ANYBODY SO IT'S
AVAILABLE AS FREE AND OPEN USE.
THAT'S A DOUBLE-EDGED SWORD.
I DON'T KNOW IF WE WANT IT USE
THAT.
I DON'T KNOW HOW WE USE THE DATA
DOWN THE LINE.
>> DOES ANYONE HAVE QUESTIONS
FOR THE PANELISTS?
>> I LIKE WHAT THEY'RE TRYING TO
DO AT CHICKASAW AND THE PROBLEM
OF HAVING DEDICATED STAFF TO
THESE KINDS OF ISSUES.
AS DATA GETS BIGGER OR RESEARCH
QUESTIONS GET MORE EXPANSIVE AND
YOUR DATA SET GETS INTO THIS
DATA SET OR IS USED FOR QUALITY
CONTROL OR LAWSUIT OR WHATEVER
YOU CAN'T LOGISTICALLY IN AN
EFFICIENT MANNER TELL AN
INDIVIDUAL HOW THEIR DATA IS
BEING USED AND OUR PRESIDENT OF
DATA SAYS THERE ISN'T INDIGENOUS
DATA SOVEREIGNTY OR JUST
SOVEREIGNTY AND
SELF-DETERMINATION AND THE
ABILITY TO DO THOSE THINGS.
I APPRECIATE DEBORAH HARRY'S
COMMENTS WHETHER TRIBES ARE
TRULY SOVEREIGN BECAUSE I HEAR
DIFFERENT ASPECTS WHICH IS
YOU'RE NOT REALLY SOVEREIGN
WHICH IS AN INSULT.
THE IDEA THERE'S AN ALTRUISTIC
REASON TO COLLECT THIS DATA IS
DIFFICULT TO DEMONSTRATE AND
THEY DIDN'T CARE BEFORE A
CERTAIN TIME AND NOW THEY WANT
THE DATA AND IT CAN BE USED BY
SURVEILLANCE OR 23 AND ME OR
WHATEVER.
AND IN THAT CONTEXT BY
PRIORITIZING INDIVIDUAL CONCEPT
OVER TRIBAL CONSENT YOU PUT THE
TRIBE CITIZENS IN OPPOSITION TO
THEIR OWN GOVERNMENT.
IF YOU'RE LIVING IN A TRIBAL
COMMUNITY THAT'S WRONG.
WROOUR -- YOU'RE SAYING IN THIS
PARTICULAR PROJECT BECAUSE THE
TRIBE IS NOT LOOKING OUT FOR
YOU.
I'VE HAD PEOPLE TELL ME HOW DARE
THEY AND BY PRIORITIZING THE
ETHICS BECAUSE I HEARD THIS TOO,
THE DATA'S ALREADY COLLECTED.
BY NOT PUTTING INTO PRACTICE OR
SHARING OR UTILIZING THE DATA
YOU'RE ETHICALLY HURTING YOUR
OWN TRIBE.
THEY FRAME THESE THINGS IN VERY
CONTENTIOUS AND OPPOSITIONAL WAY
TO SELF-DETERMINATION AND HAVE
TO KEEP THEM IN
SELF-DETERMINATION IN TALKING
ABOUT PRE AND PRIOR INFORMED
CONSENT LIKE BOBBY SAID YOU HAVE
TO WEIGH THAT AGAINST THE
WELFARE OF THE WHOLE GROUP.
THANK YOU.
>> INFORMED CONSENT FORMS
SWITCHED FROM THINKING ABOUT THE
WELFARE OF PARTICIPANTS AND
SWITCHED TO A LEGAL CONTRACTUAL
DOCUMENT.
I WANT TO SHARE OUR BRIEF
SCENARIO BECAUSE IT HIGHLIGHTS
SOME CHALLENGES THAT HAVE BEEN
RAISED FROM A SINGLE IRB MANDATE
AND THE LACK OF RECOGNITION OF
AUTHORITIES AND THEIR OWN
INFORMED CONSENT LANGUAGE.
A NUMBER OF YEARS AGO NOT TOO
LONG AGO I CREATED A STUDY WITH
INTERVIEW AND APPROACHES.
BECAUSE WE HAD TO PARTNER WITH A
MEDICAL SCHOOL OUR SIMPLE 1-2
PAGE INFORMED CONSENT BALLOONED
TO 10 PAGES AND HAD CLINICAL
JARGON AND THE IRB REFUSED TO
CEDE AUTHORITY TO TRIBAL IRBs
STEAMROLLED THE TRIBAL RESEARCH
REVIEW PROCESSES AND WE ALSO
HAVE ACKNOWLEDGED NOT ALL
PROCESSES ARE IDENTICAL.
THERE'S HETEROGENEITY AND IF
IT'S NOT A FORMAL IRB WITH
FEDERAL ASSURANCE TIED TO IT IT
GIVES AUTHORITY TO UNIVERSITIES
TO NOT ACKNOWLEDGE IT.
SO THIS IS WHERE NIH CAN
RE-EDUCATE BECAUSE WE HAD TO
FIGHT WITH LAWYERS TO UPHOLD
TRIBAL SOVEREIGNTY.
I TEACH A PAPER TO A CLASS THAT
RESEARCH PARTICIPANTS WERE
UNAWARE OF ADDITIONAL RISK WHEN
PARTICIPATING AND 70% DIDN'T
UNDERSTAND THE FULL CONTEXT OF
THE LANGUAGE.
NOW, WE'RE TALKING ABOUT
INDIGENOUS COMMUNITIES FOR WHOM
ENGLISH IS NOT THE FIRST
LANGUAGE AND THIS IS ALSO
DOCUMENTED THAT MINORITIZED
COMMUNITY MEMBERS WILL TRUST
SOMEONE IN A WHITE COAT AND
CAN'T DIFFERENTIATE RISKS FOR
BEING A RESEARCH STUDY
PARTICIPANT VERSUS CONCEPT TO
CARE.
THESE ARE POWER IMBALANCES
ENTRENCHED IF YOU'LL PERMIT ME
ONE MORE IN RESPONSE TO JOE'S
COMMENT.
THERE IS AN ISSUE WHEN WE START
TREATING INFORMED CONSENT FORMS
AS CONTRACTUAL DOCUMENTS AND
FORGETTING THERE'S HARMS
GENERATED AT THE COMMUNITY LEVEL
TOO.
LANGUAGE MAY STATE SOMETHING
LIKE BENEFITS MAY BE DIRECTLY TO
THE INDIVIDUAL AND GENERAL
ADVANCES THAT MAY BENEFIT I
DON'T KNOW THE GREATER GOOD, ALL
OF HUMAN KIND, WORLD PEACE BUT
THERE MAY BE A SMALL CHANCE TO
YOUR PERSPECTIVE COMMUNITIES AND
SOMETIMES A COLONIAL IRB MAY BE
OVERLY EMPOWERED TO USE THAT
LANGUAGE TO PUSH FOR THE
APPROVAL OF RESEARCH THAT MAY BE
STIGMATIZING WITHOUT THE
CONSULTATION OF COMMUNITY AND
THAT'S A PERVERSION BY WHICH
IRBs ARE CREATED AND IT HAS
SHIFTED TO THIS LEGAL PROTECTION
FOR FEDERALLY SPONSORED
RESEARCH.
ONE QUESTION THOUGH, WE KEEP
TALKING ABOUT BROAD INFORMED
CONSENT AND WE HAVE SEEN
ESPECIALLY WITH UNIVERSITY
PROJECTS AND THE INSTITUTION AT
ARIZONA STATE UNIVERSITY AND THE
ARIZONA BOARD OF REGENTS WHICH
WAS SUED BY THE TRIBE THAT WE
MOVED FROM BROAD CONSENT TO
THINKING ABOUT MORE TAILORED
FORM OF CONSENTS AND WHEN WE
START COLLECTING DATA WENT BACK
TO BROAD CONCEPT.
I LOOKED AT OUR LESSONS IN THE
PAST AND WE KIND OF FORGOT.
THE OTHER THING I THINK IS
INTERESTING IS I WORK WITH
RESEARCHERS ALL THE TIME WHO
KEEP CONSTANTLY STATING WE NEED
BROAD CONSENT WE NEED TO
CONSIDER DEIDENTIFIED DATA AND
ALL THE RESEARCHERS NEED TO BE
ABLE TO PULL IT FOR ANALYSES.
WE LIVE IN A MACHINE LEARNING
ERA.
WE HAVE TECHNOLOGY TO PREVENT
EVERYONE HAVING ACCESS TO
EVERYTHING IN A PUBLIC DOMAIN.
WHY AREN'T WE PUSHING FOR A MORE
ADAPTIVE FORM OF CONSENT OR
PUSHING MORE FOR DYNAMIC CONCEPT
OR BLOCK CHAINING OR FEDERATED
APPROACHES TO GIVE LOCAL
GOVERNANCE TO UNT COMMUNITIES TO
TAILOR THESE APPROACHES AND
THAT'S THE REALITY I'D LIKE TO
SEE AND SEE INDIGENOUS PEOPLE
AND COMMUNITIES SELF-DETERMINE
THAT USE OF THE TECHNOLOGIES IN
THAT WAY.
>> THANK YOU, ANNIE.
>> BUILDING OFF KRYSTAL'S
COMMENT AND NOT DOING HARM AND
WE'VE SEEN PRESENTING LEGAL
DOCUMENTS TEND TO BE A DR
TRIGGERING ACT AND TRAUMATIC TO
COMMUNITIES WHO HAVE VERY MUCH
HISTORICAL CONSEQUENCES THAT
HAVE BEEN SUFFERED.
AND SO IT REALLY DOES REQUIRE A
LOT OF TALKING THROUGH THE
PROCESS AND WHAT YOU ARE
AGREEING TO OR NOT AGREEING TO
OR SIGNING AWAY AND THAT IS
SOMETHING THAT IS AT THE
INDIVIDUAL LEVEL AND FALLS ON
THE RESEARCHER AND ALIGNED WITH
THE BIGGER ISSUE OF WHAT WE'RE
DOING WHEN WE PUT CONTRACTS IN
FRONT OF PEOPLE WHO ARE ALL
RIGHT HAVING A LOT OF STRESSORS
AND SUFFERING AND NOT DOING OUR
DUE DILIGENCE AS INSTITUTIONS TO
VET PROPERLY SOME OF THE
PROCESSES SO WE'RE NOT I MEAN
THIS IS A BIGGER PICTURE ISSUE
AND PUTTING STRAIN ON
COMMUNITIES THAT FRANKLY CANNOT
SUPPORT THE DEMANDS AND
REQUIREMENTS WE'RE ASKING OF
THEM JUST TO HAVE ACCESS TO
SCIENCE.
THAT'S FUNDAMENTALLY A PROBLEM
AND IT'S AGAIN COMES TO THE
CONCENTRATION OF POWER WITHIN
PLACES THAT DON'T ALWAYS HAVE
THE CONNECTIVITY TO KNOW THIS IS
PERPETUATING A PROCESS ENACTED
WHEN PEOPLE CAME HERE AND
STARTED TO KILL US.
NOW WE'RE IN THE SPACE AND THIS
IS ONE OF OUR ELDERS WHO SAID
THIS.
WE'RE FEELING LIKE WE'RE HAVING
TO PROTECT OURSELVES TO DEATH.
AND WE'RE PROTECTING OUR CULTURE
TO DEATH NOW.
THAT'S COMING FROM AN ELDER
TALKING ABOUT THE FACT THAT
WE'RE UNABLE TO ACCESS OUR
CULTURAL WAYS BECAUSE WE'RE SO
BUSY PROTECTING THAT INFORMATION
FROM OUTSIDE ENTITIES WHO HAVE
HISTORICALLY USED THAT AGAINST
US.
AND USED OUR INDIGENOUS
KNOWLEDGE IN MANY CAPACITIES TO
PROFIT FROM.
THERE'S SO MANY EXAMPLES OF THAT
ASPIRIN AND ALL THESE
MEDICATIONS.
PART OF WHY I STARTED TO WORK
WITH MY COMMUNITY BECAUSE IT'S
SO ONEROUS FOR NATIVE PEOPLE TO
TRY TO NAVIGATE THIS REGARDLESS
OF THEIR PERSPECTIVALITY AND THE
POWER DIFFERENTIAL BECAUSE OUR
UNIVERSITIES HAVE CAPITALIZED ON
THIS AND HIRE ATTORNEYS.
THEY LAWYER UP TO RECHARGE THEIR
FINANCIAL BATTERIES THROUGH OUR
SUFFERING.
I DON'T KNOW HOW MANY WAYS I
NEED TO SAY THAT BUT IS
FUNDAMENTALLY AN UNETHICAL
PROCESS WHEN WE HAVE PEOPLE NOT
BENEFITING FROM THE WORK WE'RE
DOING.
AND THAT'S SOMETHING WE SHOULD
ASK QUESTIONS ABOUT AND AS
NATIVE RESEARCHERS IT'S
DIFFERENT BECAUSE TYPICALLY WE
AREN'T THE ONES COMING IN WITH
THE FUNDED PROJECT TELLING
PEOPLE AFTER THE FACT IN A
COERCIVE FRANKLY WAY THEY HAVE
TO SIGN ON OR THEY DON'T GET
ACCESS TO THE MONEY WHICH IS
TYPICALLY WHAT'S HAPPENING.
NOT PEOPLE IN THE ROOM BUT AT
OUR INSTITUTION WE HAVE $83
MILLION COMING THROUGH OUR
CAMPUS AND A FRACTION OF THAT I
GUARANTEE YOU IS GOING TO OUR
COMMUNITIES.
IT'S CERTAINLY NOT GOING THROUGH
ME BECAUSE IT'S GOING THROUGH
PEOPLE WHO ARE WORKING THROUGH
PEOPLE TO HELP THE
NATIVE-AMERICAN WE'VE BEEN TOLD
TIME AND TIME BEEN AND HAS
DIMINISHED AND DEMEANED OUR
COMMUNITIES.
TO BE A PERPETUATION OF THAT
SAYING THIS IS THE PROCESS BY
WHICH YOU'RE GOING TO SIGN AWAY
YOUR RIGHTS IN PERPETUITY TO
YOUR DATA OR IS IT PROBLEMATIC?
IT COMES BACK TO THE FUNDAMENTAL
QUESTION I HAVE ANSWERED FOR
MYSELF BY LIKE NOT DOING THIS.
I KNOW YOU'VE TRIED TO DO THE
WORK IN A GOOD WAY AND THAT'S
DIFFICULT AND YOU GO HOME AT
NIGHT WORRYING ABOUT PEOPLE AND
YOU HAVE PEOPLE WHO CANNOT READ.
EVERY TIME I'VE DONE A STUDY
I'VE WORKED WITH PEOPLE WHO
CANNOT READ AND HAVE TO SIT WITH
THEM AND TALK THROUGH THE
INFORMED CONSENT.
THAT'S THE LEVEL SOMETIMES
THAT'S A DISCONNECT TO ME
BECAUSE WE HAVE THESE BIGGER
PRACTICES WHERE WE'RE TALKING
ABOUT THE NUANCE AND WE'RE
DEALING WITH COMMUNITY AND ILLIT
RASE IS AT A -- ILLITERACY AND
IT'S FRUSTRATING AND THE PEOPLE
WHO HAVE POWER IN OUR
COMMUNITIES HAVE TYPICALLY NOT
THE ONES HELPING.
SOMETIMES IT HAPPENS BUT IT
DOESN'T ALWAYS HAPPEN THAT WAY.
I THINK WE NEED TO THINK ABOUT
THAT CAREFULLY.
>> TWO IN REASON TO YOUR
COMMENTS YOU KNOW TO ACHIEVE
INFORMED CONSENT IF YOU HAVE
ILLITE
ILLITERAL RAT LANGUAGE YOU
HAVE -- ILLITERATE LANGUAGE YOU
HAVE TO PICK INFORMED CONSENT
AND ONE OF THE PROBLEMS WITH
FPIC OR CONCEPT IS THAT IT'S
JUST CONSIDERED AN ETHIC.
IF YOU VIOLATE AN ETHICAL
STANDARD THERE'S NOT NECESSARILY
A LEGAL REMEDY YET AND HOW DO
YOU CREATE YOUR LEGAL REMEDY TO
UPHOLD THE STANDARD?
>> TO SPEAK TO THAT I WOULD NOT
FEEL OKAY TURNING SOMEONE AWAY
FOR THE FACT THEY HAVEN'T HAD
THE OPPORTUNITY TO LEARN TO
READ.
WE HAVE TAKEN THE TIME AND WE
HAVE GONE THROUGH THE PROCESS.
SAME THING FOR THOSE NOT
ENROLLED IN THE TRIBE.
IT'S THE SAME ISSUE.
PEOPLE COME TO US AND WANT THEIR
VOICE TO BE HEARD AND IT'S OUR
RESPONSIBILITY TO HELP TRANSLATE
A SYSTEM THAT IS NOT BUILT FOR
THEM.
IT'S UNJUST AND SEEKING FAIR
CONTINUED SERVITUDE TO THE
LARGER SYSTEM.
AND PROFITING AS HUMAN BEINGS
NOT AS NATIVE PEOPLE.
WHEN WE'RE STUDYING THAT WE HAVE
TO MAKE PEACE WITH THAT AND AS
CLINICIANS WE DON'T FEEL OKAY
WITH THAT.
WE KNOW WHAT WILL NOT TRANSLATE
AND HAVE TO START LOOKING AT
SMALLER SAMPLE SIZES AND
COMMUNITIES THAT HELP HEALING.
THAT'S MY OWN SOAPBOX.
IN TERMS OF GRANULARITY, WE HAVE
TO STRUGGLE TO PAY OUR ELDERS TO
COME IN TO DO PRAYERS AND
THINGS.
WE HAVE TO GO THROUGH YOU WILL
THESE DIFFERENT.
AND AT OUR INSTITUTION THEY'VE
TAKEN MONEY FROM THE CHECKS AND
THEY'RE SMALL HONORARIUMS NOT
COMMENSURATE WITH THEIR TRAINING
AND OUR MEDICINE PEOPLE AND
THEY'RE GETTING THEM SIX MONTHS
LATER AND IF THEY WORK FOR THE
STATE THEY TAKE TAXES OUT AND
CONSIDER THEM A PART-TIME
EMPLOYEE AND THESE ARE
FUNDAMENTALLY UNETHICAL AND
NOBODY IS POLICING THAT.
IT'S A LITTLE DIFFICULT AND
PEOPLE GIVE UP AND IT'S NOT AN
UNREASONABLE REACTION FROM WHAT
I'VE SEEN AND THAT'S MY OWN TWO
CENTS.
WE WORK WITH PEOPLE FOR SURE.
NOW THERE ARE LEADING THE
IMPORTANT DISCUSSIONS I'VE
LEARNED IN THE SESSION AND I
APPRECIATE ALL THE INSIGHT AND
WISDOM AT THE TABLE.
I'LL PASS IT TO KARINA.
>> THAT WAS GOOD.
WE'RE JUST GETTING GOING.
BUT I ALSO WANT TO MAKE SURE I'M
FEEDING PEOPLE.
SO WE ARE GOING TO TAKE A LITTLE
BREAK.
IF YOU ORDERED FOOD IT'S OUTSIDE
THE DOOR.
WE'LL HAVE AT LEAST A 35, 40
MINUTE BREAK IF YOU WANT TO WALK
AROUND, STRETCH, EAT IN HERE IF
YOU WANT TO GO OUTSIDE THERE'S
TABLES OUT SIDE OF NIH BUILDING
1.
FOR THOSE WHO DIDN'T ORDER FOOD
AND WANT TO GO TO THE CAFETERIA
YOU CAN GO WITH DR. CALDWELL.
THIS IS A RICH DISCUSSION AND I
KNOW WE'RE LAYERS UPON LAYERS
UPON LAYERS.
IT'S ALL IMPORTANT AND WE'RE NOT
ALWAYS GOING TO -- WE DON'T ALL
HAVE TO BE OF ONE MIND BUT HAVE
TO BE ABLE TO FIELD IT'S A GOOD
PLACE TO PUT OUR THOUGHTS OUT
THERE TO SHARE WITH EACH OTHER
AND GROW.
I'M HOPING WE CONTINUE TO HAVE A
GREAT CONVERSATION THIS
AFTERNOON BECAUSE I THINK WE'RE
JUST GETTING REVVED UP NOW.
THAT'S GOOD.
ALL RIGHT.
SEE YOU GUYS AT WHAT TIME?
1:40.
THANK YOU, EVERYBODY.
HERE WE GO.
WE ARE READY FOR OUR PANEL 3.
THANK YOU, EVERYBODY.
I HOPE YOU GOT A CHANCE GET
OUTSIDE A LITTLE BIT AND GET
OUTSUED -- OUTSIDE OF A
BUILDING.
HOPEFULLY YOU GOT DOWN TO THE
STREAM AND SEE THE STREAM.
I MADE IT MY MISSION TO FIND IT
AND IT DOES EXIST.
THERE'S A STREAM ON CAMPUS.
WE'RE ON TO OUR THIRD PANEL.
DR. CATHY ETS WILL BE LEADING
THAT AND ADDRESSING DATA SHARING
AND PRINCIPLES AND PRACTICES AND
CHALLENGES.
SO WHAT WE'RE GOING TO FOCUS ON
DISCUSSING NOW IS HOW DATA CAN
BE STEWARD AND MANAGED
RESPONSIBLY AND ETHICALLY AND
ALIGNING WITH COMMUNITY
GUIDELINES AN SOVEREIGNTY
PRINCIPLES.
WE WANT TO THINK OF THIS FOR
PRIMARY DATA CLICK AND FOR
SECONDARY USE OR RE-USE OF DATA
AND HOPING TO IDENTIFY SOME OF
THE CHALLENGES FACED AND ALSO
PROPOSING SOLUTIONS FOR TRUST
AND DATA SHARING AGREEMENTS.
I'M GOING TO TAKE THE QUESTIONS
A LITTLE BIT OUT OF ORDER AND
AND I'LL POSE ONE OF THE
QUESTIONS YOU ALL HAVE
CONSIDERED ALREADY AND ASK FOR
WHOM EVER WANTS TO ANSWER IT AND
IF PEOPLE WANT TO ADD QUESTIONS
IF THAT WORKS FOR EVERYBODY.
SO THE FIRST QUESTION THAT I
WOULD POSE FOR CONSIDERATION IS
WHAT ARE BEST PRACTICES FOR
ETHICAL DATA SHARING
REPOSITORIES AND SECONDARY DATA
USE?
SO JUST WHAT ARE SOME OF THE
BEST PRACT PRACTICES.
>> I KNOW THERE'S SOME ANSWERS.
>> I HAVE A QUESTION THOUGH.
BEST PRACTICE FOR WHO?
I JUST WANT TO -- YOU KNOW, SOME
PEOPLE SAY LIKE THE BEST
PRACTICE IS ALREADY BEING
PRACTICED.
I GUESS MY PERSONAL RESPONSE TO
THAT QUESTION AND I'LL OPEN THAT
UP TO THE PANEL IS BEST
PRACTICES FOR COMMUNITY BUT I
THINK WE DO HAVE TO THINK ABOUT
THE AUDIENCE AND BRIDGING GAPS
BUT YEAH I WOULD POSE THAT
QUESTION TO THE PANEL AND NOT TO
ME.
>> I'M LIKE THE RESIDENT RADICAL
TODAY BUT I LOVE YOUR QUESTION.
>> I THINK YOU ARE.
>> OKAY.
I MEAN, I DO THINK THE
POSITIONALITY IS REALLY A
CRITICAL COMPONENT OF THAT.
I THINK FOR FUNDING AGENCIES OF
COURSE WANT TO SEE THEIR MONEY
IS USED AND MANAGED IN
FINANCIALLY RESPONSIBLE WAYS AND
THOSE SORTS OF THINGS ARE
IMPORTANT AS FAR AS DATA USE AND
SHARING BUT I THINK OF EQUAL
IMPORTANCE IS HOW THIS
INFORMATION CAN BE SHARED WITH
THE COMMUNITY MEMBERS WHO NEED
THE INFORMATION AND THAT COULD
BE FOR STATE OR LOCAL OR LIKE
PRIVATE FOUNDATION,
PHILANTHROPIC USES.
I'LL BE HONEST IN MY OWN
COMMUNITY RESEARCH IS FRANKLY
FROWNED UPON BECAUSE IT'S HAD
THIS EXTRACTIVE HISTORY I'VE
TALKED ABOUT TODAY BUT I ALSO
THINK WE ALL SEE THE NECESSITY
FOR FRAMING OUR HEALTH
CONDITIONS AND PROBLEMS IN THE
LANGUAGE THE FEDERAL GOVERNMENT
SEEMS TO VALUE.
I DON'T THINK IT'S SOMETHING
THAT IS SUSTAINABLE AND BECAUSE
A LOT OF THE TRIBES HAVE
ACTUALLY BEGUN TO LOOK ELSEWHERE
FOR HELP FOR INSIGHT AND THE
REALITY IS OUR INDIGENOUS WAYS
OF KNOWING ARE INCREDIBLY
POWERFUL.
WHEN WE TALK ABOUT THE PROBLEMS
WITH SUICIDE WE KNOW A LOT OF
THAT TIES TO OUR IDENTITY AND
HOW WE VIEW OURSELVES.
IF YOU HAVE DATA THAT REPLICATES
A STORY THAT'S BASED ON
PATHOLOGY, THAT IS WHAT
PERPETUATES WITHIN THE
COMMUNITY.
AND SO I DON'T THINK A
RESPONSIBLE USE AND SHARING OF
DATA ESPECIALLY IF IT'S SERIOUS
SIGNIFICANT TOPIC LIKE MENTAL
HEALTH OR STIGMATIZED CONDITION
IS SHARED WELL WITHIN OUR
COMMUNITIES.
FREQUENTLY I'VE HAD FRIENDS WHO
ARE TEACHERS WHO HAVE OVERHEARD
CONVERSATION BY CHILDREN WITHIN
OUR COMMUNITIES WHO SAY DON'T
YOU KNOW X, Y OR Z NEGATIVE
THING ARE PART OF OUR CULTURE.
WE HAVEN'T HAD ACCESS TO OUR
CULTURE AND COMMUNITY.
WE HAVE UNIVERSITIES THAT SORT
OF PREY UPON FOR BETTER OR FOR
WORSE, USUALLY WELL INTENTIONED,
BUT OUR LACK OF ACCESS AND MANY
OF US INTEREST TRYING TO CHANGE
THAT BUT IT'S AN INCREMENTAL
CHANGE I GREW UP ON THE
RESERVATION AND WAS NOT ALLOWED
TO SPEAK OUR LANGUAGE OR LEARN
IN THE WAY WE TRADITIONALLY
LEARN.
WE ARE ONLY NOW MANY OF US ABLE
IT DO THESE THINGS.
IT'S BECAUSE WE'VE TAKEN IT UPON
OURSELVES AND BROUGHT OUR
CEREMONIES BACK AND REPATRIATED
OUR WAYS AND A LOT OF THAT HAS
BEEN DONE WITHOUT FEDERAL
FUNDING.
SOME OF THE WORK THAT MATTERS
THE MOST IN OUR COMMUNITY
FRANKLY.
I DON'T THINK PEOPLE ARE LOOKING
TO CLINICAL TRIALS TO TELL THEM
HOW TO LOVE EACH OTHER BETTER
AND HOW TO BE BETTER COMMUNITY
MEMBERS.
I THINK THERE'S A LOT OF DANGER
IN THAT.
WHEN WE DO INCORPORATE CULTURE
IN MEANINGFUL WAYS THOSE WHO ARE
NATIVE SCHOLARS ONE OF THE
DANGERS IS IF IT DOESN'T WORK
THE SAME ERROR WITHIN OUR
METHODS.
I DON'T PRETEND TO HAVE THE
ANSWER BUT THINK WE KCAN MAKE TE
FINDINGS MATTER AND WHEN WE TALK
ABOUT USING DATA UNWAYS THAT
ULTIMATELY BENEFITS THE
COMMUNITY WE INCLUDE THAT.
I'VE BEEN A MEMBER OF OUR TRIBAL
IRB AT THE BLACK FEET NATION AND
WYOMING TRIBAL LEADERS IN THE
PAST AND LOOK WHETHER IT
BENEFITS THE COMMUNITY AND
FRANKLY IT DOESN'T.
IT'S KIND OF HEDGED IN WAYS
WHERE IT CAN BENEFIT LIFE IN
GENERAL ON THE PLANET BUT WE TO
THE THINGS THAT DO WORK AND
WE'RE A STORY TELLING CULTURE
AND THAT'S WHAT WE SHOULD INVEST
IN IS TELLING STORIES THROUGH
DATA AND SCIENCE AND DO SO IN
WAYS THAT ENGAGE IN AND HEAL
COMMUNITIES IF THIS IS WHAT THE
GOAL IS.
ONE OF OUR ELDERS TALKED TO I
-- A STUDENT IN CANADA AND HAD
BEEN REMOVED FROM A HOME AND AS
PART OFF THE INTERVENTION THEY
PROVIDED CULTURAL HEALING
THROUGH THE PROCESS.
YOU HAVE TO VET YOUR ELDERS SO
NOT PREDATORY IN DIFFERENT WAYS
AND THAT'S IMPORTANT BUT THIS
ELDER WORKS WITHIN CHILE
PROTECTIVE SERVICES AND THE --
CHILD PROTECTIVE SERVICES AND
THE CHILD SAID I FINALLY FEEL
LIKE I'M HOME.
THAT IS PLACE-BASED KNOWLEDGE.
IT'S PLACE-BASED COMPASSION AND
LOVE WITHIN OUR COMMUNITIES AND
WAYS AND THOSE ARE THINGS SHARED
WITHIN OUR CREATION STORIES AND
WITHIN OUR CEREMONIES THAT ARE
ACTIVE AND OUR LANGUAGES ARE
ACTIVE AND VERB BASED NOT NOUN
BASED BECAUSE THAT'S WHAT WE
HEAL OUR COMMUNITIES WITH.
WE ASK ABOUT DATA AND
DISSEMINATIONAL STEWARDSHIP
RELIES ON HUMAN SYSTEMS AND WHEN
THEY'RE SUBJECT TO MANY THINGS
WE'RE SUBJECT TO, GREED,
CORRUPTION, HUNGER FOR POWER,
THOSE THINGS CAN BECOME
CORRUPTED AND WE SEE SYSTEM
FAILURES WHEN THAT HAPPENS.
WE SEE THOSE MOST VULNERABLE
HURTING MORE.
WHEN WE HAVE REINFORCED SYSTEMS
WORSHIPPING DATA WE'VE BEEN
DESCRIBING TODAY, WE HAVE TO
THINK ABOUT WHAT OUR ANCESTORS
WOULD HAVE DONE IN THESE
SITUATIONS AND HOW THEY WOULD
HAVE FIXED THESE CONDITIONS AND
PROBLEMS AND IT'S PROBABLY NOT
TO BRING IN A TEAM OF LAWYERS TO
HAVE BETTER FORMS FOR THEM TO
COMPLETE.
IT WOULD BE TO HELP OUR CHILDREN
SEE THEMSELVES AS WAYS THAT ARE
COMPASSIONATE AND KIND.
WHEN WE HAVE CEREMONIES THOSE
ARE THINGS WE TEACH.
YOU DON'T SLAP AROUND YOUR
BUNDLE OR SOMETHING LIKE THAT.
YOU KISS THE ITEMS IN YOUR
BUNDLE.
YOU TALK TO THE THINGS IN YOUR
LIFE AND SHARE WITH THEM YOU
LOVE THEM.
YOU WERE TALKING ABOUT INANIMATE
LIKE OUR MOUNTAINS ARE PEOPLE.
WE PREY TO OUR MON MOUNTAINS.
THESE ARE DIFFERENT FUNDAMENTAL
WAY OF VIEWING OUR SOCIETIES AND
WORLDS THAT ARE RELATIONAL.
THOSE ARE THINGS I'VE SEEN AS A
PERSON TO BE VERY HELPFUL TOO.
YOU WANT TO LOOK AT READABILITY
AND COMMUNICATING.
EVERYONE'S ON FACEBOOK NOW AND
THROUGH MEDIA AND THINGS LIKE
THAT.
I HAVE CHILDREN WHO ARE IN
TELEVISION AND FILM AND THAT'S
BEEN HELPFUL.
PEOPLE LIKE LILLY GLADSTONE AND
LAST NIGHT THE EMMYS WE SAW MORE
NATIVE PEOPLE BEING REPRESENTED.
THOSE THINGS ARE IMPACTFUL AS
FAR AS PUBLIC HEALTH
INTERVENTION AND GOOD TO SUPPORT
PEOPLE WHO ARE TELLING OUR
STORIES IN COMPELLING WAYS THAT
MAY OR MAY NOT ALLOW FOR OTHER
PEOPLE TO CARE ABOUT OUR LIVES.
HISTORICALLY IT'S NOT BEEN THE
CASE.
PEOPLE HAVE NOT CARED ABOUT OUR
LIVES OR WANTED TO DOCUMENT OR
DEDICATE RESOURCE TO THE
PRESERVATION OR PROMOTION OF OUR
LIVES OR CULTURE.
IT DOES MATTER WHO IS ASKING THE
QUESTION.
>> STORIES ARE TOWARDS
IMPLEMENTATION OR DEDICATION AND
THAT'S THE PART THAT'S HARD.
AT NATIVE BIO, THERE'S
PRINCIPLES AND ONE OF THE
VERSIONS OF CARE IS OCAP.
WE USE IT LIKE CANADA THE
OWNERSHIP CONTROL ACCESS AND
POSSESSION.
IT'S THE POSSESSION THAT IS THE
BASIS FOR DATA SHARING
AGREEMENTS AND FOR BEST
PRACTICES BECAUSE IN THE FEDERAL
WORLD YOU HAVE FDA AND HIPAA AND
THE COMMON RULE PUBLIC HEALTH
LAW AND SOME ARE LAWS AND SOME
ARE POLICIES.
YOU HAVE DIFFERENT THINGS AND
WE'VE BEEN IN A STEP WISE MANNER
TRYING TO GET THE TRIBES WE WORK
FOR OR AT AND WE TALKED TO THEM
AND THEY TOOK THE IRB AS THE
FLOOR NOT THE CEILING.
THEY STARTED WITH HUMAN SUBJECT
AND ADDED FOSTER CARE AND RICE
BEDS AND CULTURAL STORIES AND A
BUNCH OF THINGS.
THEY'RE WAY AHEAD OF WHERE WE
ARE AND BECAUSE OF LOTS OF
TRIBES ARE IN DIFFERENT PLACES
WITH THE UNDERSTANDINGS AND
WHETHER OR NOT THEY'RE GOING TO
GET IN TROUBLE WITH THE FEDS BY
DOING THINGS WE'VE BEEN
GRADUALLY WORKING ON THE ISSUES
SOMETIMES IN CONSULTATION WITH
THE TRIBES, SOMETIMES OUR OWN.
WE HAD THE HELP OF BIG FIRE LAW.
IT WAS ONE OF THE FIRST
ALL-FEMALE LED LEGAL FIRMS IN
THE COUNTRY ALL NATIVE ALL LEGAL
WITH THE SUPPORT AND BACKING OF
LANCE MORGAN FROM A NATION OF
NEBRASKA AND THEY HELPED
TREMENDOUSLY.
THERE'S LAWS IN THE AMERICAN
COMPETE ACT AND OTHER LAWS THAT
COMPEL DATA SHARING AND GIVE THE
THIRD OF INTELLECTUAL PROPERTY
HOLDINGS OVER DATA TO
UNIVERSITIES AND THEY DO THAT
WITHOUT EXCEPTION OR CHALLENGE
AND WE'VE HAD TO CHALLENGE THEM
ESPECIALLY IF YOU'RE A
UNIVERSITY OR RESEARCHER OR LIKE
US A NONPROFIT ON THE
RESERVATION WE CAN'T SIGN ANY
CONTRACT.
THAT BELONGS TO THE TRIBE AND
SOME UNIVERSITIES SAY YOU HAVE
TO.
LIKE THE STORY ABOUT CDC SAYING
WE CAN'T COMPEL STATES ABOUT THE
DATA THEN TRIBES ARE SAYING WHY
YOU CAN'T COMPEL US.
IF YOU CAN'T COMPEL A STATE WHY
CAN YOU COMPEL A TRIBE?
THE SAME THING LAND WITH THE
FIELDS AND THEY SAID WE'RE THE
NIH.
THEY SAID IT'S BETWEEN THE TRIBE
AND UNIVERSITY TO NEGOTIATE.
THE TRIBE ISN'T HERE AND THEY
SAID YOU HAVE TO SIGN BECAUSE
YOU'RE RECEIVING THE FUNDING AND
THERE'S THE PROBLEM.
WE'RE RECEIVING THE FUNDING AND
CARRYING OUT THE WORK AND WANT
US TO SIGN OVER TRIBAL DATA AND
THE NIH SAID WE CAN'T HELP YOU.
WE HAD TO GO TO A LAW FIRM TO
HELP US AND GOT SOME OF WHAT WE
WANT AND THE REST WE'RE RELYING
ON CROSSED FINGERS AND TRIBAL
SOVEREIGNTY.
THE SHORT ANSWER ABOUT BEST
PRACTICES THEY DON'T EXIST YET
BECAUSE OF THE COMPLICATION
BETWEEN HOW THINGS ARE FUNDED
AND WHAT FEDERAL LAWS AND
POLICIES ARE AND WHAT TRIBES
KNOW AND DON'T KNOW AND WHAT
TRIBES HAVE IN TERMS OF
INFRASTRUCTURE OR THE WHERE
WITH ALL TO TAKE THEM TO COURT.
>> I RANDOMLY HAVE A LAW DEGREE.
NEVER PRACTICED LAW.
I'M NOT LICENSED TO PRACTICE LAW
BUT HAVE TRAINING IN LAW AND
TALKED ABOUT BEING A NARCH
COORDINATOR AT THE TRIBAL
COUNCIL OF ARIZONA.
EVERYBODY WANTED TO DO THE
RESEARCH AT THE SAME TIME WAS
ENLIGHTENING FOR ME AS SOMEBODY
WHO HAD JUST COME OUT OF LAW
SCHOOL.
IN NEGOTIATING THAT AGREEMENT
WITH THE UNIVERSITY OF ARIZONA
THERE WERE KIND OF TWO STICKING
POINTS.
ONE WAS WITH THE OWNERSHIP OF
THE DATA, WHERE WOULD THE DATA
GO AT THE END OF THE PROJECT AND
THE OTHER WAS THE INTELLECTUAL
PROPERTY AND ACADEMIC
RESEARCHERS PART OF THE NARCH.
AND THEY WERE TOLD YOU CAN SIGN
AWAY YOUR RIGHT TO PUBLISH AND
THEY WORKED WITH TRIBAL PARTNERS
IN COMMUNITY FOR MANY MANY YEARS
AND THEY ALREADY HAD AN EXISTING
TRUSTING RELATIONSHIP WITH THOSE
PARTNERS AND ALREADY KNEW HOW
IT'D PLAY OUT AND SO IT WORKED
OUT REALLY WELL.
FOR ME AS A NATIVE RESEARCHER
THAT WAS FOUNDATIONAL MOVING
FORWARD BECAUSE I KNEW WHAT TO
SAY TO THE UNIVERSITY'S
ATTORNEYS OFFICE SAYING WAIT A
MINUTE THE TRIBE CAN'T OWN THE
DATA.
THE TRIBE DOES OWN THE DATA.
THAT'S WHERE THE DATA COMES
FROM.
AUTHOR SHARING IT WITH ME, I'M
NOT SHARING IT WITH THEM.
WE HAD A TOTALLY DIFFERENT
CONVERSATION AND FLIP THINGS 180
DEGREES BECAUSE OF THAT
EXPERIENCE.
I DO THINK THE POLICIES ARE
HELPFUL BECAUSE EVERY TIME
THERE'S A NEW PROJECT YOU HAVE
NEGOTIATE A BRAND NEW DATA
OWNERSHIP AGREEMENT.
THERE ARE SOME PARTICULARS WITH
CERTAIN PROJECTS THAT YOU NEED
TO CERTAINLY TEASE OUT NUANCES
AND DETAILS AROUND.
I CAN'T PRETEND TO KNOW ANYTHING
ABOUT BIO SAMPLES AND SPECIMENS.
I DO SOCIAL BEHAVIORAL RESEARCH
BUT I DO GET COMMONALITIES
ACROSS THE BOARD THAT CAN BE
ESTABLISHED THROUGH POLICY THAT
CAN HELP TO SORT OF BE
GUARDRAILS FOR RESEARCHERS WHO
DON'T HAVE A DRAW DEGREE WHO ARE
NOT FAMILIAR WITH TRIBAL
SOVEREIGNTY.
I WAS TRAINED AT THE UNIVERSITY
OF ARIZONA BY TWO LAWYERS AND I
SEE TRIBAL SOVEREIGNTY AS A HUGE
BENEFIT FOR TRIBES.
IT'S AN OPPORTUNITY FOR TRIBES
TO SAY EXACTLY WHAT THEY WANT TO
DO AROUND THEIR DATA AND
ESTABLISH SPECIFIC BOUNDARIES
AND REQUIREMENTS AND RULES AND
REGULATIONS THAT UNIVERSITIES
ARE OBLIGATED TO FOLLOW IF THEY
WANT TO DO RESEARCH WITHIN THAT
PARTICULAR COMMUNITY.
THERE ARE LEGAL SCHOLARS OUT
THERE LIKE REBECCA SOSSI WHO
ARGUED IN DOING RESEARCH WITH
TRIBAL INDIAN COMMUNITIES.
IF THEY'RE TAKING DNA FROM
TRIBAL MEMBERS THEN THEY SHOULD
BE REQUIRED TO GO TO THOSE
TRIBES AND BE ABLE TO OR SHOULD
HAVE TO SEEK PERMISSION IN ORDER
TO DO THAT.
SO THERE ARE I THINK DISCUSSIONS
OUT THERE THAT ARE CONTEMN
POLITICALING FROM A TRIBAL
SOVEREIGNTY PERSPECTIVE --
CONTEMPLATING FROM TRIBAL
SOVEREIGNTY PERSPECTIVE
PROTECTING THE DATA.
THOSE ARE PROBABLY IN EFFECT
SOMEWHERE AND TRIBES DOING
GENETIC RESEARCH ACROSS THE
U.S. IN THEIR OWN JURISDICTIONS.
I THINK IT WOULD BE AN
INTERESTING INVESTIGATION AND AN
OPPORTUNITY FOR THE REST OF US
TO LEARN THE PARAMETERS FOR
DOING THAT RESEARCH AND
POSSIBILITY OF SETTING
PROTECTIONS AND PUTTING THOSE IN
PLACE AT THE SAME TIME LEARNING
WHAT THE RESEARCH CAN DO FOR
COMMUNITIES.
I'M CURRENTLY WORKING WITH
TRIBAL COLLEGES ALONG WITH
COLLEAGUES AT THE AMERICANS FOR
INDIAN OPPORTUNITY.
THEY HAVE AN INDIGENOUS
COLLECTIVE AND WE'RE FUNDED BY
THE FDA AND WE'RE ACTUALLY DOING
QUALITATIVE DATA RESEARCH WITH
TRIBAL COMMUNITIES AND COLLEGE
COMMUNITIES AROUND WHAT ARE SOME
OF THE EXPECTATIONS OF COMMUNITY
MEMBERS AROUND BIOMEDICAL
RESEARCH AND EXPECTATIONS.
THERE'S BEEN FEAR AND HARM AND
PEOPLE ARE WORRIED ABOUT THAT
AND AT THE SAME TIME PEOPLE WANT
TO HAVE THE CONVERSATION.
FROM A POLICY PERSPECTIVE HOW DO
WE HOLD THE SPACE TO HAVE THAT
CONVERSATION?
WHERE'S THE FUNDING TO DO THAT?
IT'S CHALLENGING TO BRING THAT
TOGETHER AND PEOPLE HAVE
COMMITMENTS.
HOW DO WE ENSURE WE HAVE ALL THE
RESOURCES WE NEED TO HEAR FROM
COMMUNITY AND UNDERSTAND HOW TO
GET THIS RIGHT?
WHAT ARE SOME THINGS PEOPLE NEED
TO HAVE IN PLACE IN ORDER FOR
THEM TO RESEARCH AS A VIABLE
OPPORTUNITY AND SOMETHING TO
ENGAGE WITH?
I THINK THERE ARE WAYS TO DO IT.
THE CHALLENGE IS IN SOME DETAILS
AND CHARACTERISTIC OF THE
RESEARCH AND WHAT EXPECTATIONS
ARE OF THE COMMUNITY.
IT'S EXCITING FOR ME TO
DR. POODRY'S POINT EARLIER
THERE'S CERTAINLY A NEED TO
PROVIDE MORE TRAINING BECAUSE
WE'RE ALWAYS HAVING THIS
CONVERSATION.
I'VE BEEN DOING THIS 20 YEARS
NOW.
I CAN'T BELIEVE I JUST SAID
THAT.
SEEMS LIKE A BLINK OF AN EYE.
THIS CONVERSATION HAS COME UP SO
MANY TIMES AND IF WE'RE ABLE TO
DEVELOP TOOL KITS AND MANY HAVE
BEEN CREATED IN THE PAST THOSE
ARE TO BE REVISITED AND EXPANDED
AND HAVE MORE DETAILS BECAUSE
THE NATURE OF DATA IS CHANGING.
PEOPLE ARE TALKED ABOUT BIG DATA
SETS AND WHAT ABOUT DATA IN THE
CLOUD.
AS LONG AS YOU LOG INTO AN APP
YOU'RE SIGNING AWAY YOUR DATA.
IF YOU'RE TRACKING HEALTH
INFORMATION LIKE BLOOD PRESSURE
ON YOUR PHONE YOUR INFORMATION
IS GOING SOMEWHERE AND SOME
TRIBES ARE LOOKING AT THE RISK
OF OVERDOSE USING PHONE DATA AND
THAT COULD BE SUPER HELPFUL.
HOW DO WE PROTECT THE
INDIVIDUALS WHOSE INFORMATION
WE'RE USING TO PROJECT DATA FOR
RISK YEAR COMMUNITIES.
I DON'T KNOW I HAVE ANSWERS BUT
THERE'S POSSIBILITIES AND SHOULD
EXPLORE THEM IN MORE DETAIL AND
PASS THEM TO THE NEXT GENERATION
OF RESEARCHERS TO CONTINUE TO
BUILD ON THAT.
>> ARE YOU MOVING ON TO THE NEXT
QUESTION OR CAN I SAY SOMETHING?
WHEN I SAW THE QUESTION I WAS
THINKING AND I APPRECIATE THE
INPUT FROM OTHER PEOPLE LIKE WE
SHOULD HAVE AN ATTORNEY.
ANYWAY, I WAS THINKING ABOUT IT
IN TERMS OF SOME OF THE THINGS
WE'RE DOING AND I THINK
DEFINITELY A POLICY WOULD BE
HELPFUL SO EACH OF THESE GROUPS
DON'T HAVE TO DO AN INDIVIDUAL
NEGOTIATION WITH WHOEVER.
TALKING ABOUT A DATA SHARING
POLICY YOU HAVE TO AGREE TO WHEN
YOU SUBMIT YOUR GRANT AND ITS IT
GETS AWARDED.
I WAS THINKING IN THE CONTEXT OF
THAT.
WHEN YOU HAVE A PROPOSAL JUST
BECAUSE IT HASN'T BEEN DONE IN
YOUR TRIBE OR NATIVE HAWAIIANS
IS NOT JUSTIFICATION ENOUGH.
YOU HAVE TO DO BETTER THAN THAT
IF YOU WANT TO GET OUR DATA AND
BEFORE WE RELEASE IT AND THAT
WOULD BE EXPECTED OF EVERYBODY.
YOU THINK THE INVESTIGATOR HAS
TO EXPLAIN WHAT THEY PLANT TO DO
WITH THE DATA YOU'RE SHARING BY
NIH POLICY IN THE CONTEXT OF
INDIGENOUS COMMUNITY.
HOW WILL IT HELP THE TRIBE AND
COMMUNITY, WHAT HAVE YOU AND
EXPLAINS THE INTENT AND
EXPECTATION OF WHAT THEY MAY
FIND.
THAT WOULD BE CONSISTENT WITH
WHAT PEOPLE SHOULD BE DOING
ANYWAY.
SO THAT SHOULD BE DONE PRIOR TO
GEKT ACCESS TO THE DATA, PRIOR
TO THE PAPER BEING SUBMITTED AND
ALSO HAVE A PLAN FOR HOW THIS
DATA WILL BE SHARED WITH THE
COMMUNITY.
SO IF YOU'RE ASKING TO ANALYZE A
SUBSET OF THEIR DATA YOU HAVE TO
EXPLAIN HOW IT WILL BE SHARED
WITH THE COMMUNITY IDEALLY
BEFORE IT GETS SUBMITTED AS A
PAPER.
AND ALL OF THAT SOUNDS SIMPLE
ENOUGH BUT DOES TAKE TIME AND SO
THE REGULATOR NEEDS TO THINK
ABOUT PLANNING AHEAD BECAUSE
WE'RE NOT GOING TO RUSH IT
THROUGH JUST BECAUSE THE GRANT
CYCLE'S COMING UP OR WHATEVER.
THE SAME QUESTION WAS GETTING
SECONDARY APPROVAL AND RECONSENT
ALWAYS REQUIRED.
I THINK KARINA YOU SAID YES.
OKAY, DONE.
>> GOING BACK TO BEST PRACTICES
DEPENDS ON WHOSE ETHICS AND THE
BELMONT REPORT AND IT'S OUTDATED
BECAUSE IT WAS MEANT FOR A
TISSUE TYPE AND A LITTLE BIT ON
DATA WITH THE DOCUMENT NOW WE
CAN REIDENTIFY A NUMBER OF US
AND TALK ABOUT FAIRNESS AND
ETHICS TO DATA WAS NOT
REFLECTIVE OF INDIGENOUS ETHICS
THE MINUTE IT WAS EXTRACTED.
IN TERMS OF COMMUNITIES WHO
PROVIDE THE DATA RESPONSIBLE FOR
BRINGING INNOVATION OF RESEARCH
WE AS NATIVE PEOPLES ARE SHUT
OUT AND IT FIELD LIKE NIH
RESEARCHERS SEEM TO ONLY RESPECT
DATA SOVEREIGNTY WHEN CODIFIED
BY LAW AND WE DON'T HAVE ENOUGH
LAWYERS AND EXPERTISE OF BIO
MEDICAL SCIENTISTS BUT SEEMS
WE'RE CONSTANTLY BRINGING IN THE
TRIBAL BIG LEAGUES EVERY TIME WE
NEED TO HAVE A STOP GAP MEASURE
WHEN WE FIND A LOOPHOLE THAT
NEED TO BE CLOSED.
GOING BACK TO STEWARDSHIP AND
RELATIONALITY, THE CONCEPTS MAKE
MORE SENSE WHEN YOU SEE HOW
RELATIONAL THE DATA IS AND I
HAVE 60 FIRST COUSINS ALONE.
I'M SCARED EVERY TIME I THINK
ONE WILL CONTRIBUTE TO DATA WITH
ANCESTRY.
WHEN I THIS UP AS SOMETHING WE
NEEDED TO ACKNOWLEDGE THE
FEEDBACK I GOT WAS PEOPLE DIDN'T
ACKNOWLEDGE RISK WAS A THING IN
THE ROOM AT THE ALL OF US
PROGRAM.
AND WE NEED AN ACKNOWLEDGEMENT
THAT EXISTS ACROSS THE NIH
RECOGNIZED AND RELATIONALITY
MAKE SENSE ACROSS DATA TYPES AND
STEWARDSHIP ON THE FRONTIER OF
A.I.
WE TALKED ABOUT ORGANIZATIONS
UPENDING NOTIONS OF OWNERSHIP
FOR TWO DECADES AND LOOKING TO
MODELS OF INDIGENOUS
STEWARDSHIP.
I THINK IT'S LOW ON BATTERY.
>> CAN YOU START OVER?
>> SOMETHING, SOMETHING,
SOMETHING, ALL OF US.
WHEN THE DATA CONSORTIUM STARTED
AS A NONPROFIT ONE THING WE HAD
TO STATE WAS A CLAUSE OF
DISSOLUTION.
WHAT HAPPENS TO OUR ASSETS WHEN
THE NON-PROFIT ENDS.
WE CITED WE'D ACT AS STEWARDS OF
THE DATA BECAUSE WE DIDN'T WANT
AUTHORITY OVER DNA AS AN ASSET
SINCE THEY CAN HAVE A COMMERCIAL
VALUE AND THAT'S UP TO TRIBES TO
RECONCILE FOR THEMSELVES BUT
THERE'S ALSO A DANGEROUS
QUESTION HERE ON ATTACHING A
DOLLAR VALUE ON SOMETHING
ETHICALLY HUMAN AND THEY DIDN'T
WANT TO TOUCH BUT COMMERCIAL
COMPANIES DO IT ALL THE TIME.
AND WHEN WE LOOK AT DATA
REPOSITORIES RESEARCHERS ARE
FINDING IT PROBLEMATIC
INDIGENOUS PEOPLE ARE TAKING
STEWARDSHIP OF THE DATA.
THEY SAID TIME AND TIME AGAIN IT
REMOVES OUR ACCESS TO DATA THEY
SAY NOT ACKNOWLEDGING THEIR OWN
HIP -- HYPOCRISY AND I
MENTIONED EARLIER THE DYNAMIC
CONSENT SHOULD BE THE NORM LOOK
AT METHODS ROOTED IN SMART
CONTRACTS WHICH ARE DIGITAL
CONTRACTS EXECUTED WHEN SOME PRE
DETERMINED AGREED UPON TERMS AND
CONDITIONS ARE MET AND PLACE
WHEN WE HAVE INDIGENOUS PEOPLES
CREATING SERVERS THAT WORK UNDER
TRIBAL JURISDICTIONS AND PLACE
COMMUNITY MEMBERS WITH ACCESS TO
THE DATA AND EVERY YEAR MORE AND
MORE TRIBAL NATIONS ARE BECOMING
LET IGGOUS AND WE NEED TO THINK
AT DATA TRANSFER, OWNERSHIP USE
AND ACCESS AGREEMENT IN WHICH
TRIBAL NATIONS ARE THE AGENT OF
AUTHORITY BY DEFAULT OPPOSED TO
HAVING TO CONSTANTLY REDRAFT THE
CONTRACT TERMS SO WE'RE
WRESTLING AWAY THE AUTHORITY FOR
UNIVERSITIES WHO PROBABLY
COLLECT DATA IN AN UNCONSENTED
FASHION TO BEGIN WITH.
WE HAVE TO RECOGNIZE GENOMIC
DATA IS VIABLE ESPECIALLY FOR
AND INDIVIDUALS ARE NOT
CONTRIBUTING TO CELL LINES, THE
LEGACY BIO ELECTIONS ARE EVEN
MORE VALUABLE.
THEY'RE BEING BOUGHT AND SOLD
LIKE BASEBALL CARDS.
THERE'S A SHADOW INDUSTRY OF
THIS OCCURRING.
IT FEELS LIKE I'M TRYING TO
ENCOURAGE THEM TO DO THE RIGHT
THING AND IT JUST GETS SHARED TO
A CORPORATION.
ANYWAY, HOPEFULLY WE CAN STOP
THAT.
>> I WANTED TO TALK ABOUT KEY
INGREDIENTS AND SEEMS LIKE
THERE'S SO MANY COMPONENTS AND
I'M APPRECIATE OF THE
OPPORTUNITY TO THINK OF BEST
PRACTICES AND HOW TO DESCRIBE
THAT AND MAKE THAT AVAILABLE FOR
EVERYONE.
AGAIN, I THINK SO MANY TIMES
WE'RE STARTING NEW AND HAVING
GUIDELINES IS HELPFUL.
THERE'S DATA INTERPRITAT PRPRPR
IT'S IMPORTANT TO HAVE MEMBERS
AT THE TABLE HAVING DISCUSSIONS
ABOUT FIRST WHAT KIND OF DATA DO
WE WANT TO COLLECT AND THEN HOW
DO WE GO ABOUT DOING THAT IN A
CULTURALLY RESPECTFUL WAY AND
HOW DO WE INTERPRET IT THAT IS
STRENGTH BASED RATHER THAN AND
SOME REQUIRE A DISSEMINATION
PLAN AS PART OF THEIR
APPLICATION.
THAT'S IMPORTANT TO THINK ABOUT
FROM THE BEGINNING.
HOW IS THIS INFORMATION GOING TO
BE DISSEMINATED BACK TO THE
COMMUNITY AND WIDELY AND
ENSURING COMMUNITY MEMBERS ARE
APART OF THAT PROCESS AND RIGHT,
FRONT AND CENTER MAKING
DISSEMINATION OF THAT
INFORMATION TOO.
>> I'M NOT GOING TO SAY THIS AS
ARTICULATE AS THE PEOPLE WHO
ALREADY SAID THIS BECAUSE YOU
TRAINED ME AND I READ YOUR
PAPERS.
I FEEL EXCITED TON A PART OF THE
PANEL.
I DON'T WORK WITH NATIVE TISSUES
BECAUSE I'M NOT PROPERLY TRAINED
TO WORK WITH PROPERLY TISSUES.
I DON'T WANT TO MISUSE OUR
SAMPLES OR WANT SOMEBODY ELSE TO
COME UP TO ME AND SAY HEY, CAN I
USE YOUR TISSUE SAMPLES TO
ANSWER THIS GREAT QUESTION I
HAVE.
OPEN SCIENCE AND DATA IS GREAT
FOR OTHER SYSTEMS.
IT'S NOT GREAT FOR NATIVE TISSUE
SAMPLES OR DATA.
WE CAN'T TRAIN PEOPLE ENOUGH TO
USE THE DATA RESPECTFULLY AND
WITH CULTURALLY APPROPRIATE
QUESTIONS AND WAYS TO TO HANDLE
DATA.
EVERY TRIBE HAS A DIFFERENT
LEVEL AND WE HAVE A DIFFERENT
RELATIONSHIP TO THE OTHER
TRIBES.
I DON'T THINK OR KNOW I CAN
TRAIN THE NEXT GENERATION.
IN MY MIND IF YOU'RE GOING TO
TAKE SAMPLES FROM TRIBES AND
SHOULD HAVE SAY WHETHER THE DATA
WILL BE USED IN ANOTHER WAY OR
WHETHER THE SAMPLES WILL BE USED
FOR A SPECIFIC QUESTIONS.
EVERYTHING SHOULD BE RAN THROUGH
THE TRIBES BECAUSE ME AS AN
OUTSIDER RESEARCHER IS NOT GOING
TO KNOW EXACTLY HOW CO WORK WITH
THEM.
I SAY UNTRAINED.
I'M LITERALLY TRAINED.
KRYSTAL TAUGHT ME ABOUT ETHICS
AND CONSENT.
NOT EVERYBODY IS TRAINED IN THAT
WAY AND I THINK OF THE PEOPLE
WHO SAY I GOT NIH FUNDING SO I
SHOULD BE ABLE TO ASK THE
QUESTION.
PEOPLE NOT TRAINED IN THE
HISTORY AND LAW AND DON'T KNOW
ABOUT THE WAYS OUR TISSUES HAVE
BEEN MISUSED OR NO BUT DON'T
UNDERSTAND HOW IT IMPACTS OUR
COMMUNITIES WILL MISUSE SAMPLES
AND MAY NOT DO IT MALICIOUSLY
BUT WILL MISUSE THEM AND IT'S
GOING TO HURT OUR TRIBES.
I DON'T SEE ALLOWING THAT TO
HAPPEN.
SEE, NOT ARTICULATE.
>> THAT WAS VERY ARTICULATE.
A LOT OF CAME FROM AND THAT AND
HEARD ABOUT TRAINING PROTECTIONS
AND WANTED TO FOLLOW-UP WITH ONE
QUESTION WHICH IS THERE ANYTHING
UNIQUE OR IN ADDITION FOR
REPOSITORIES AND ARE WE EVEN
THERE TO THINK ABOUT HOW ARE WE
THINKING ABOUT REPOSITORIES
BECAUSE THERE'S SO MUCH THAT
NEEDS TO BE DONE IN TERMS OF
TRAINING AND ALL OF THESE OTHER
THINGS?
JUST TRYING TO UNDERSTAND IF
THERE'S ANYTHING IN ADDITION TO
WHAT'S BEEN SHARED THAT RELATES
TO REPOSITORIES.
I KNOW EVERYTHING SAID RELATES
TO REPOSITORIES BUT TRYING TO
PULL ANYTHING IN IN ADDITION.
>> ONE OF THE THINGS IN TERMS OF
THE SOLUTIONS WOULD BE AND WE
TRIED THIS AT OUR UNIVERSITY
WHERE WHEN PEOPLE WRITING
PROPOSALS IF THEY'RE REQUIRED TO
EDUCATE WHETHER OR NOT THEY
INCLUDE AMERICAN ALASKAN PEOPLE
TO CHECK A BOX AND THAT REQUIRES
AT LEAST SOME TRAINING BULL THE
REASON PARTLY IS IT HASN'T TIED
TO RESOURCES.
AND SO ONE OF THE THINGS A LOT
OF US ADVOCATED FOR IS IF THE
PROPEOSAL OR DOESN'T SEEM TO HEP
RESEARCH TO GO THINGS THAT HAVE
DATA REPOSITORY QUESTIONS AND
RESOURCES TO BUILD RESOURCES
WITHIN OUR LOCAL TRIBES.
ONE THING WE HAVEN'T SPOKEN TOO
A LOT IS VERY MUCH A REALITY FOR
TRIBAL COMMUNITIES IS USUALLY
RESEARCH THE ONUS OF THE WORK
GOES ON THE TRIBAL COMMUNITY.
THAT'S NOT A PRACTICAL OR
SUSTAINABLE PRACTICE.
WE NEED CLEAR DELINEATED WAYS OF
FUNDING MONEY AND PEOPLE AND
SOCIAL CAPITAL GOES TO HELP OUR
TRIBAL COMMUNITIES HAVE THE
CAPACITY TO DO THESE THINGS.
HAVE THE TRIBAL ATTORNEYS TO BE
ABLE TO VET THESE DIFFERENT
DOCUMENTS AND ALSO TO HAVE THE
SCIENTIFIC INFRASTRUCTURE TO
HOUSE REPOSITORIES IF THEY SO
CHOOSE TO DO SO.
THE SAME IS TRUE FOR SOCIAL
SCIENCE RESEARCH.
HAVING AND WE HAVEN'T BEEN ABLE
TO PUT TEETH INTO IT AND WE HAVE
AN OFFICE OF RESEARCH THAT A LOT
OF FUNDS GO INTO AND DON'T COME
BACK OUT.
OR IT'S SEIZED AND IT HAPPENED
DURING THE PANDEMIC AND FUNDING
AND THAT WAS DIFFICULT FOR ME
WAS TO SEE THE MONEY THAT'S
SUPPOSED TO GO TOWARDS A
PARTICULAR COMMUNITY REALLY BE
TAKEN UP BY THE MACHINE OF OUR
UNIVERSITY.
AND IT'S NOT UNIQUE FOR OUR
INSTITUTION BUT IF WE COULD FIND
A WAY TO CONNECT THE TWO THERE'S
A DISCONNECT BETWEEN THE
RESOURCES AND HOW THE RESOURCES
ARE DISTRIBUTED AND THE NEEDS.
AND THAT'S TRUE AT A SCIENTIFIC
LEVEL AS WELL AS SOME WAYS THAT
WARE -- WAYS WE'RE TALKING
ABOUT HEALTH AND PART OF THE
POTENTIAL SOLUTION.
>> SO I APPRECIATE WHAT YOU'RE
SAYING AND ACADEMIC INSTITUTIONS
ARE NOT PERFECT.
FAR FROM IT.
I THINK WITH THE DEVELOPMENT OF
OUR NEW COHORT OF 10,000 WE HAVE
NEGOTIATED AND IN SOME WAYS
DEMANDED BUT PRETTY FIRM ON THE
IDEA THAT WE NEED TO BE ABLE TO
HAVE A DECISION MAKING
CHECKPOINT FOR THE STORAGE AND
USE AND ACCESS AND SO ON AND SO
FORTH.
THIS IS LIKE WE JUST TALKED
ABOUT IT ON THURSDAY.
WE'VE BEEN STRATEGIC IN
PROVIDING A JUSTIFICATION FOR
WHY IT'S NEEDED.
I THINK NIH KNOWS ABOUT ALL THE
BAD THINGS THAT HAVE HAPPENED TO
A LOT OF INDIGENOUS POPULATIOS
ACROSS THE WORLD AND THEY'RE
LIKE WELL, WHAT DO YOU WANT TO
DO IT AND HOW MUCH WILL THE
COST, HOW MUCH TIME DO YOU NEED?
THAT'S A DIFFERENT CONVERSATION.
MANY THANKS TO ALIK AND OTHERS
ON THE TEAM WHO HAVE EXPERIENCE
WORKING WITH NATIVE HAWAIIAN
SAMPLE AND HAVE SEEN THINGS WE
LEARNED AND TRYING TO CORRECT
THEM QUICKLY.
WE'RE ASKING FOR DUPLICATE
SAMPLE TO BE STORED IN HAWAI'I
AND THERE'S A COORDINATING
CENTER SAMPLE AND OUR SAMPLE.
WE'D LOVE 50/50 BREAKDOWN.
WE'LL HAVE A CHECK BOX TO HAVE A
COMMUNITY REVIEW BOARD THAT
EVERYTHING TO DO WITH NATIVE
HAWAIIAN PACIFIC ISLANDER DATA
WILL HAVE TO BE REVIEWED AND US
AS NPIs IS AN EXTRA WORK WE'LL
HAVE TO DO TO TRIAGE AND SEE IF
THE WHOLE COMMUNITY REVIEW BOARD
NEEDS TO LOOK AT THIS AND DECIDE
IF IT'S APPROVED, NOT APPROVED,
REVISED AND RESUBMIT IF YOU
WANT.
IT HAS TO HAVE STRONG
JUSTIFICATION AND OTHER
PARAMETERS AND GUARDRAILS MANY
HAVE TALKED ABOUT ALREADY.
WE HAVE EXPLAINED IT THAT IT'S
VERY IMPORTANT FOR THEM TO KNOW
WHERE THEIR SAMPLES ARE GOING
AND ASK A GROUP DO YOU WANT TO
BRING YOUR GROUP TO THE BIO
REPOSITORY STORAGE UNIT IN
MINNESOTA AND THEY'RE OPEN TO US
BRINGING A GROUP AND SEEING
WHERE THEIR KINSHIP WILL BE
STORED.
I CAN SEE IN THE FUTURE
INVESTIGATORS WHO ARE HAWAIIAN
OR IN OUR COMMUNITY FOR A LONG
TIME TO START ASKING QUESTIONS
RELEVANT FROM THE GROUND.
WE CAN START ASKING OUR
QUESTIONS.
THAT'S REALLY IMPORTANT.
A LIKA HAS DONE A LOT WITH THE
EXPERTISE AND WHAT WE BRING TO
THIS COHORT THEY'RE BEGINNING TO
SEE WE KNOW WHAT WE'RE TALKING
ABOUT.
I THINK THAT'S WHY WE'RE MAKING
HEADWAY.
DO YOU KNOW THE CULTURAL
PROTOCOL FOR THE SAMPLES IF
SOMEONE DECIDES THEY DON'T WANT
THEIR SAMPLES TO BE THERE
FOREVER AND THEIR LIKE, NO.
WE NEED TO FIND A WHY TO SEND IT
BACK TO US TO DO THE KWUL TURL
PROTE -- CULTURAL PROTOCOL AND
THESE ARE QUESTIONS TO ASK
COLLEAGUES NATIVE AND
NON-NATIVE.
I'VE BEEN IN NON-NATIVE COHORTS
BEFORE.
WE NEVER ASK THE QUESTIONS
BECAUSE WE DIDN'T HAVE ENOUGH
INVESTIGATORS WHO WERE NATIVE
HAD IT TIED TO THE CULTURE AND
COMMUNITY.
I THINK WITH THE POLICY THE
OFFICE IS GOING TO CREATE IT
GIVES US AN OPPORTUNITY TO
WHEREVER YOU ARE IN THE PROCESS
OF BEING EMPOWERED TO STEWARD
THESE SAMPLES AS YOUR KINSHIP.
YOU CAN START TO DO IT BUT I
HAVE TO SAY I'VE BEEN AT THIS
FOR A LONG TIME THAT IT TOOK A
WHILE FOR THIS TO HAPPEN BUT IT
CAN HAPPEN AND LAST WEEK I WAS
SO PLEASED TO HEAR WE GOT IT.
WE UNDERSTAND THE WHY.
WE JUST WANT TO KNOW THE HOW.
SO WE HAD ALREADY ANTICIPATED
THAT AND WE HAD ALREADY COME UP
WITH A BUDGET AND TIME LINE AND
THE ACCEPTANCE FOR THE
PARAMETERS AND EVERYBODY KNOW
NOW AND IT'S NOT JUST THE NATIVE
HAWAIIAN STUDY BUT WITH OTHER
ASIAN AMERICANS WHICH I KNOW WE
HAVE AN AGGREGATION ISSUE.
IT'S FAR FROM PERFECT.
IT CAN BE BETTER BUT AT LATEST
SOMETHING IF YOU WANT TO
UNDERSTAND BEST PRACTICES AND I
DON'T KNOW IF ANYBODY'S FROM
STRONG HEART BUT THEY VISITED
WHERE THEIR BIO SPECIMENS WOULD
BE STORED.
THEY WALKED THROUGH THE LAB,
THEY SAW THIS BACK UP GENERATORS
AND HOW IT WAS GOING TO TO BE
HANDLED AND SO ON AND SO FORTH
AND FOR A LOT OF PEOPLE JUST
BEING IN A LABORATORY SPACE OF
AN INDUSTRIAL SIZED UNIT IT WAS
EYE OPENING FOR THEM.
>> THE REMARK ABOUT THE BELMONT
REPORT AND THERE WAS A PAPER
ABOUT AN INDIGENOUS BELMONT
REPORT BECAUSE WHEN MOST PEOPLE
THINK ABOUT DATA THEY THINK
ABOUT IT AS GOLD OR A SYSTEM
WHERE EVERYBODY GETS TO DRAW OUT
WATER FOR IRRIGATION BUT THEY
NEVER PUT ALL THREE THINGS
TOGETHER LIKE NATIVES DO.
IT IS GOLD.
IT IS AN OPEN RESOURCE LIKE
WATER BUT ALSO A RELATIVE.
IT'S LIKE A FOSTER CHILD.
YOU'RE NOT GOING TO GIVE YOUR
FOSTER CHILD A WAY TO THE SYSTEM
YOU DON'T KNOW WHAT WILL HAPPEN
IN THE FUTURE.
YOU WON'T GIVE THEM AWAY BUT
THAT'S WHAT THEY'RE ASKING
INDIGENOUS PEOPLE TO DO IS JUST
TO TRUST IN THE PROCESS.
I'M SORRY FOR GOING AWAY FROM
NIH POLICY BUT RIGHT NOW THESE
ARE THE ARENAS THESE ARE TALKED
ABOUT.
YOU DON'T HEAR HOW GOOGLE IS
PROTECTING THEIR DATA OR
REGENERON IS PROTECTING THEIR
DATA OR HOMELAND SECURITY BUT
IT'S RELEVANT TO THE
CONVERSATION BECAUSE THE
INDIGENOUS GROUPS ARE LIKE THOSE
ENTITIES.
THEY HAVE A RIGHT TO PROTECT
THEIR DATA.
THEY DON'T HAVE TO PUT IT INTO
THE COMMENTS.
SOMEHOW NATIVE PEOPLE BECAME BIO
PROPERTY.
LIKE WITH THE IDEA ABOUT PUBLIC
HEALTH DATA BEING MANDATED BY
LAW TO SHARE BUT THE STATES
WON'T COMPLY IS A LENS AND
CRYSTAL AND I WERE TALKING ABOUT
THIS, WHAT THEY PRESENT IS
ETHICAL FROM A CERTAIN LENS BUT
NOT FROM A NATIVE LENS.
NAY SAID IF -- THEY SAID IF YOU
DATA FOR SYPHILIS YOU HAVE TO
GIVE YOUR ENTIRE ENROLLMENT LIST
AND THEY DON'T WANT TO TO GET
BACK THEIR DATA AND DOESN'T
SCIENTIFICALLY MAKE SENSE
BECAUSE NON-NATIVES COME TO THE
RESERVATION AND IT'S A LENS
NON-NATIVES PUT ON DATA IN TERMS
OF THEIR OWNERSHIP OR CONTROL OR
RIGHTS COMPARED TO WHAT TRIBES
DO.
AS CRYSTAL ALLUDED TO WITH ML
AND AI OTHER TYPES OF DATA LIKE
THE MICROBIOME, LIKE PUBLIC
HEALTH DATA AND ENVIRONMENTAL
DATA AND A.I. WILL BREAD CRUMB
TO A HUMAN RESOURCE.
IF YOU DON'T BELIEVE ME CRYSTAL,
MATT AND KAYLA WERE IN A PAPER
LAST WEEK TALKING ABOUT AND
CREATING AN INDIGENOUS ETHICS
FOR MICROBIOME BECAUSE THAT'S
HOW IMPORTANT MICROBIOME IS TO
INTERROGATING THE PRIVACY OF
INDIGENOUS PEOPLE.
AND THERE'S A THING WHERE IF
THEY CAN'T GET IT FROM HAWAI'I
OR NEW ZEALAND THEY'LL GO TO
SAMOA OR IF THEY CANT GET IT
FROM OTHER GROUPS THEY'LL GET IT
FROM MEXICANS.
THIS SHELL GAME TO TRY TO GET
THE DATA.
THERE'S ALL KINDS OF PEOPLE
TRYING TO GET THIS DATA ALL THE
TIME.
AND GOOD LOOK BECAUSE PEOPLE ARE
TRYING TO CIRCUMVENT AND KRYSTAL
AND I HAVE BEEN VICTIMS OF
PEOPLE SAYING WE GOT IT BEFORE.
WE HAVE LEGACY SAMPLES BEFORE
THEY WERE PROTECTED.
IT'S AN UNKNOWN LOCATION BUT WE
HAVE THEM.
THAT'S THE SATE OF PLAY WE'RE IN
TODAY.
>> ALL RIGHT.
THIS ON THEME TALKING ABOUT
DISSOLUTION OF THE SECTION AND I
WANT TO CONTINUE THE THEME.
WHEN WE TALK ABOUT WHAT HAPPENS
TO CORPORATE ENTITIES WHEN THEY
END AND THE INFORMED CONSENT
FORMS AND TREATMENTS PEOPLE WHO
CONTRIBUTED DATA AND DNA WHAT
HAPPENS?
THIRD PARTY PLATFORM PROMISED
THINGS AND IT WAS SOLD RECENTLY
IT WAS QUIET NEWS.
NOBODY ASKED.
RIGHT NOW WE HAVE A TOPIC OF THE
STRONG HEART STUDY IN WHICH HAS
BEEN A LONG TERM STUDY ON A
GRANT BASIS AND DUE TO CONCERNS
AND LIMITED ENGAGEMENT IS ON A
CONTRACT BASIS AND SOME HAVE
PREEMPTIVELY REMOVED THEMSELVES
FROM THE PROGRAM.
WHAT'S GOING TO HAPPEN IF THIS
PROJECT ENDS?
WHERE WILL THE DATA GO?
IT'S A CONCERN TRIBAL NATION
HAVE AND IF THEY DON'T HAVE,
SHOULD HAVE.
RECENTLY THERE'S BEEN A NUMBER
OF AWARDS TO CREATE BIO
REPOSITORIES FOR A.I. AND POINT
OF CARE ISLANDERS.
WHERE WILL THE SUPPORT BE IN THE
FUTURE IF AND WHEN THEY CUT
SUPPORT FOR THE ENTITIES THEY
CREATED?
IS IT GOING TO BE DISSOLVE?
WILL IT BE ABSORBED INTO
EXISTING OTHER PROGRAMS THAT
TRIBAL NATIONS DON'T HAVE TRUST
IN?
IF WE TALK ABOUT THE DATA CYCLE
MOST THE DATA SITS FOR LONG
PERIOD OF TIME IN THE STORAGE
AND REUSE PART.
WE NEED TO START THINKING ABOUT
THE LONG TERM AND SEVEN
GENERATIONS FORWARD.
>> THANK YOU.
I THINK WE WILL GO AHEAD AND
WRAP UP BUT I WANT TO THANK THE
PANEL FOR THE COMMENTS AND I
THINK WE'RE IN THE RIGHT ROOM
BECAUSE THESE ARE THE DIFFICULT
QUESTIONS DR. WALTERS' OFFICE IS
GOING TO HAVE TO TAKE ON.
KRYSTAL, I THINK YOU PERFECTLY
SUMMED UP THE NEXT PANEL WHICH
WILL CONSIDER SOME QUESTIONS
ABOUT WHAT HAPPENS TO SAMPLES IN
THE LONG-TERM TERM.
THANKS SO MUCH TO EVERYBODY.
>> WE'LL TAKE JUST THREE OR FOUR
MINUTES FOR FOLKS TO STRETCH
THEIR LEGS AND REFRESH THEIR
COFFEES PLAY MUSICAL CHAIRS
AGAIN AND GO INTO OUR LAST PANEL
BECAUSE WE'RE A LITTLE SHORT ON
TIME WE'RE GOING TO TRY TO
BREEZE THROUGH THE LAST PANEL
AND DO OUR ENDING REMARKS BUT
PLEASE EXCUSE YOURSELF IF YOU
NEED TO.
>> SO YOU GUYS KNOW BEFORE WE
SCATTERED THIS AFTERNOON, TWO
QUICK ANNOUNCEMENTS WE WANTED TO
MAKE THE DINNER OPTIONAL BECAUSE
WE KNOW PEOPLE HAVE DIFFERENT
LEVELS OF TRAVEL FATIGUE.
BETWEEN 6:30 AND 6:45 PEOPLE ARE
GOING TO MEET AT TRUE FOOD
WITHIN WALKING DISTANCE PEOPLE
WILL BE THERE.
THERE'S NO RESERVATIONS.
SOME WILL MEET AT THE HOTEL
LOBBY SOME MAY LEAVE -- IF YOU
WANT TO MEET AT 6:30 AT THE
LOBBY TO WALK OVER AT THE LATEST
IF YOU'RE INTERESTED IN GOING.
TRUE FOOD.
THE OTHER IS DON'T SCATTERED
AFTER WE'RE DONE BECAUSE WE WANT
A PICTURE WITH EVERYBODY ON THE
FRONT STEPS OF BUILDING 1.
THAT'S IT.
CARRY ON.
[OFF-MIC]
STRATEGIES AND INDIGENOUS
RESEARCH AND OUR PANELIST ARE
DR. BEANS, DR. HIRATSUKA AND
DR. SCHULTZ AND ANDERSON FOR OUR
FIRST QUESTION AND SOMEWHAT
SELFISH FOR US WE'VE BEEN
TALKING ABOUT THE POLICY.
ON THE NIH SIDE WE RECOGNIZE OUR
WORK AND DR. WALTERS MENTIONED
IT WILL BE TEACHING OUR NIH
COLLEAGUES AND HOW TO IMPLEMENT
THIS POLICY WHAT SHOULD NIH
PROGRAM OFFICERS UNDERSTAND
ABOUT DATA SHARING AND POLICY
SHOULD UNDERSTAND WHEN WORKING
WITH INDIGENOUS POPULATIONS AND
TRIBES?
IT'S OKAY TO SAY WHAT YOU NEED
TO SAY.
>> THAT'S A GOOD START.
WE HAVE BEEN CIRCLING AUTO THAT
WE'RE TALKING ABOUT A PROCESS OF
CONSENTING AND ESTABLISHING
RESEARCH QUESTIONS FROM OUR OWN
COMMUNITIES OR IN LONG STANDING
PARTNERSHIPS AND COMMITMENTS
THAT CONTINUES THROUGH
PUBLISHING.
IN GENERAL THE PRACTICE AND
BEING IN THE GOOD RELATIONSHIP
WE'RE TALKING ABOUT PUBLISHING
WOULD NOT BE THE END GOAL AND I
DON'T LIKE THE TERM
DISSEMINATION BUT AT THAT POINT
YOU'RE REALLY SHARING AND GIVING
BACK.
WHAT YOU'RE SETTING UP ARE THE
STRATEGIES AND WAYS YOU'LL BE
DOING THAT.
THAT'S WHAT I'D SHARE FOR OVER.
I'LL GO FROM THERE.
THANK YOU.
>> A COUPLE THINGS.
THIS IS WRONG.
THIS IS UNCOMFORTABLE.
>> WE'RE AT THAT POINT.
WHEN YOU TALK ABOUT HOW LONG THE
PROJECTS TAKE AND THE ITERATIVE
POINT THE EXPECTATION OF
CONTINUANCE OF PROJECT AND GOING
BACK TO P.O.s AND STUDY SECTION
TO GET RENEWAL.
IF WE LOOK AT THE WAY RENEWALS
ARE JUDGED BEING ON A PERMANENT
STUDY SECTION IT'S ALL BASED ON
PRODUCTIVITY.
BASED ON PAPERS AND POSTERS.
IF THERE'S QUOTE, UNQUOTE
TANGIBLE OUTCOMES OF THE
PROJECTS ARE NOT GOING TO BE AND
CLEAR TO EVERYBODY ON THE STUDY
SECTION.
AND THERE'S JUDGMENT.
THERE NEEDS TO BE TRAINING FOR
ANYBODY SITTING ON THE STUDY
SECTION SO THEY UNDERSTAND WHAT
THE PROCESSES LOOK LIKE TO JUDGE
THEM IN A WAY THAT'S FAIR
OTHERWISE ANY WORK DOING IT IN A
WAY THAT IS USING BETTER AND
LESS EXPLOITIVE PROCESSES IS
GOING TO BE AT AN INHERENT
DISADVANTAGE WHICH MEANS THE
WORK WILL GET CULLED.
>> I WANTED TO ADD THAT THERE
NEEDS TO BE A LOT OF FLEXIBILITY
TO ALLOW FLEXIBILITY FOR TRIBES
TO DECIDE HOW THINGS CHANGE OVER
TIME AND FIND OUT AS MORE
INFORMATION IS REVEALED OVER
TIME WE SHOULDN'T BE GIVING
POINTS AGAINST A TRIBAL NATION
FOR CHANGING THEIR MIND
ESPECIALLY WHEN TRIBAL LEADERS
CHANGE.
YOU NEED TO ALLOW FOR THE
FLEXIBILITY TO HAPPEN.
>> RELATED LY THAT POINTS TO DAA
SOVEREIGNTY AND WHAT I HEARD IS
FUNCTIONING IN THESE TRIBES AND
THE FEDS AND THERE'S A THIRD
SPACE A LOT OF US LIVE IN WHICH
ARE ACADEMIC INSTITUTIONS OR
RESEARCH INSTITUTIONS.
ISSUES AROUND DISSEMINATION AND
IT TALKS ABOUT DATA OWNERSHIP
AND HOW WE USE IT AND TO YOUR
POINT REALLY EMPHASIZES
PUBLICATIONS.
YOU'RE TALKING TO AN UNTENURED
FACULTY MEMBER WHOSE PACKET IS
IN AND FOR THOSE WHO KNOW THAT,
PUBLICATIONS ARE CURRENCY AND
HOW DO WE NAVIGATE THAT AND
THERE ARE THINGS ABOUT BEING
TRANSPARENT WITH TRIBAL PARTNERS
ABOUT WHAT HAPPENS AT THE END.
WHAT I NEED TO DO TO KEEP MY JOB
KIND OF THING.
AS SOMEONE WHO IS THERE WITH
PROJECTS THINKING ABOUT CAPACITY
BUILDING EVEN WITH TRIBAL AND
COMMUNITY PARTNERS AND FOR A
LONG TIME WE TALKED ABOUT
COMMUNITY ENGAGEMENT AND HAVE
MOVED TOWARDS RECOGNIZING THE
FIRST PART TO BOBBY'S POINT
FUNDING TIME TO DEVELOP
RELATIONSHIPS OR TO GIVE SPACE
TO PRIORITIZING HOW THINGS WILL
I HAVEN'T SEEN US HAVE THE
CONVERSATION AROUND THE LATER
PART AND FUNCTIONALLY CREATE
SPACES TO ALLOW FOR TIME TO WORK
WITH PARTNERS ABOUT WHAT TO DO
WITH DATA.
AS SOMEONE TRYING TO FIGURE THAT
OUT AND PROJECTS ARE OVER AND
THINKING ABOUT PUBLISHING YOU
FEEL LIKE THE ETHICAL PACE THAT
DOESN'T ALWAYS GET ADDRESSED IS
ASKING PARTNERS TO DO THE WORK
TOO THAT IT DOESN'T HAVE AN
IMMEDIATE BENEFIT FOR THEM AND
HOW DO WE THINK OF BRINGING
PARTNERS ON AS AUTHORS OR
DEVELOPING USABLE PRODUCTS
OUTSIDE OF ACADEMIC PUBLISHING.
IT TAKES TIME AND WORK AND
CAPACITY BUILDING EVEN WITHIN
COMMUNITIES.
FOR THOSE WHO DO THIS KIND OF
WORK YOU HAVE TO TALK TO THAT
ONE PERSON IN COMMUNITY AND THAT
ONE PERSON IS ASKED 20 MILLION
THINGS AND ASKING SOMEONE TO
COME ON AND HELP FIGURE OUT HOW
TO USE THE FINDINGS OR GET THEM
OUT IS SOMETHING I STRUGGLE WITH
IN TERMS OF THAT.
I WOULD HOPE WE CAN THINK A
LITTLE BIT AND IF THE QUESTION
IS TO NIH IT'S NOT IMMEDIATELY
CLEAR TO ME IF THIS IS A TRIBAL
CAPACITY PROBLEM, IF THIS IS AN
NIH CAPACITY PROBLEM OR A
RESEARCHER CAPACITY PROBLEM.
WHAT IS NIH'S RESPONSIBILITY TO
TRIBES TO BUILD CAPACITY IN
DOING THIS WORK ARE SOME OF THE
THINGS I'VE BEEN THINKING ABOUT.
>> I'VE BEEN SPENDING THE DAY
THINKING THROUGH VARIOUS
RESPONSES AND SAW THE QUESTIONS
PUT BEFORE US AND THOUGHT
CLEARLY LEASE A ONE BOOK IF NOT
ANTHOLOGY OF THE DIFFERENT
QUESTIONS EACH PANEL HAS BEFORE
US.
A COUPLE THOUGHTS.
ONE IS WHAT SHOULD A PROJECT
OFFICER KNOW MADE ME ASK THE
QUESTION OF WHAT TO PROJECT
OFFICERS KNOW CURRENTLY?
WHO ARE THE PROJECT OFFICERS?
WHAT ARE THEIR ROLES AND
RESPONSIBILITIES CURRENTLY?
I'VE BEEN TO RECEIVING AWARD
TYPES AS A P.I.
AND EACH PROJECT OFFICER HAS
ENGAGED WITH ME IN DIFFERENT
MANNERS.
SOME HAVE NOT ENGAGED AT ALL
THROUGHOUT THE FIVE YEARS OF THE
FUNDING OR EIGHT YEARS OF THE
FUNDING.
SOMETIMES THE ENGAGEMENT HAS
BEEN CASUAL.
WE CHECK IN WITH ONE OTHER AS
PEOPLE BUT NOT ON THE SCIENCE.
WE DON'T TALK ABOUT MY RPPRs
I'VE SUBMITTED.
WE DON'T NECESSARILY SPEAK ON
WHERE ARE WE AT IN THE PROJECT
AND WHAT DO THE FINDINGS MEAN TO
OUR COMMUNITIES?
THEY HAVEN'T BEEN THOSE TYPES OF
CONVERSATIONS SO WHEN I SAW WHAT
SHOULD PROJECT OFFICERS KNOW I
THOUGHT, DAMN, I SHOULD KNOW
WHAT PROJECT OFFICERS DO AS WELL
BECAUSE I FEEL UNINFORMED AS A
CENTER INVESTIGATOR, AN RO1
INVESTIGATOR AS TO WHAT I SHOULD
BE EXPECTING OF THE INDIVIDUAL
THAT'S IN THAT POSITION.
AND THAT'S ON ME FOR NOT KNOWING
THAT.
I HAVE ATTEMPTED TO ENGAGE AND
IT'S BEEN ONCE SIDE OF
COMMUNICATION IN SOME RESPECTS
AND IT'S BEEN DANDY BUT I DID
THINK AS I SAW THE QUESTION AT
LEAST THE FIRST PORTION OF THAT
QUESTION IT MADE ME GO, HMM,
THERE'S AGAIN HIGH VARIABILITY
AS FOR ANY OF US AT ANY JOB
TYPE.
SO, ARE THERE MINIMUMS IN RULES
AND RESPONSIBILITIES AT ALL FOR
ALL OF THE TYPES OF WORK BY THE
PROJECT OFFICERS AND IF THAT'S
NOT MET HOW DO WE TACK ON THE
ADDITIONAL COMPONENT FOR
POPULATIONS THAT WE'RE SPEAKING
TO?
TO ME I WOULD WANT TO SEE BOTH
DONE.
IF THE MINIMUM OF COMMUNICATION
CURRENTLY IS OCCURRING BROADLY
THEN I JUST DON'T SEE IT
HAPPENING DISCREETLY.
OKAY.
THAT'S THE FIRST THING I WANTED
TO GET OFF MY CHEST.
THE SECOND THING I WHAT I SPEAK
ABOUT MY TEAMS FREQUENTLY IS
THINKING ABOUT THE LIFE CYCLE OF
A PROJECT AND BEING PREPARED TO
RESPOND.
PEOPLE THAT WORK WITH ME WILL
PROBABLY BE IRRITATED WITH THE
TERM TO RESPOND.
IT'S KEY IN THE TITLE OF THIS
PANEL MANAGING THE END OF
PROJECT DATA.
HOW SAD.
YOU BETTER HAVE A PLAN TO MANAGE
THE END OF IS JUST AS FOR
ENGAGEMENT AND CONVERSATION.
IF YOU'RE IN A PLACE WHERE
YOU'RE BLESSED TO TALK TO
SOMEBODY INDIVIDUALLY ABOUT NFK
YOU MUST HAVE TOLD THEM ON AN
INDIVIDUAL LEVEL WHAT YOUR PLAN
WAS FOR THAT INFORMATION WHILE
YOU WERE COLLECTING IT AND WHAT
DOING NEXT.
IF YOU DIDN'T THAT'S PROBLE
PROBLEMATIC.
I ALWAYS TALKS TO MY TEAMS IN
THINKING WHERE SHOULD THIS PAPER
GO AND WHERE SHOULD THE TOPIC BE
LOOK BACK AT YOUR PROPOSAL AND
EVERYBODY HAS A VOICE OF HOW
YOU'RE DOING THIS AND HOW DO YOU
HAVE PROMISES FOR AND THE WE, I
TALK ABOUT LOCKING DOWN
PRONOUNS.
WHO IS THE WE IN THE STATEMENT
AND IN THE CONVERSATIONS TODAY
WE'VE HAD MANY ECOLOGICAL LEVELS
WE'VE BEEN SPEAKING TO.
THERE'S A TEAM MEMBER OR
PARTICIPANT OR DOING INFORMED
CONSENT VIA A SURVEY.
SOMETIMES YOU HAVE THE BLESSING
AND SOMETIMES YOU HAVE A TEAM
SCIENCE THAT'S HAPPENING.
THEY'RE ALL INVESTIGATORS.
THERE'S DIFFERENT LEVELS BETWEEN
AGENCIES OR NATION TO NATION.
WE'VE BEEN USING ALL THESE
DIFFERENT WES TODAY AND OTHER
DAYS.
I FEEL LIKE SOMETIMES WE'RE
PASSING EACH OTHER IN THESE
CONVERSATIONS BECAUSE WE HAVEN'T
LOCKED DOWN THE PRONOUN OF WHAT
WE MEAN BY THE WES.
AS I'VE BEEN MAKING CHRISTMAS
ORNAMENTS I WANT TO ASK THE
FOLLOW-UP QUESTION AS AN
INDIVIDUAL SPEAKER ON THE PANELS
OR SOMEBODY IN OUR ROOM ASKED A
QUESTION OR MADE A STATEMENT,
WHAT LEVEL ARE YOU SPEAKING TO
OR MULTIPLE LEVELS ARE YOU BEING
SPOKEN AT?
WHICH PORTION OR ALL THE
PORTIONS WITHIN THE LIFE CYCLE
OF THE RESEARCH PROJECT ARE WE
SPEAKING?
ARE WE TALKING ABOUT SECONDARY
DATA OR WHAT'S CONSIDERED HUMAN
SUBJECTS ACCORDING TO NATIONAL
LAW VERSUS WHAT A REASONABLE
PERSON WOULD CONSIDER HUMAN
SUBJECTS MEANING INFORMATION
THAT CAME FROM A HUMAN BEING.
AND FOR MYSELF I DON'T CONSIDER
HUMAN BEINGS TO BE ALL, END ALL
AND INFORMATION FROM A MICRO
ORGANISM WITHIN MY GUT HAS VALUE
AND SHOULD BE CONSIDERED TOO NOT
JUST IF IT CAME FROM A HUMAN
BEING.
AGAIN, ALL THESE THINGS AND
CLEAR IN OUR NUMBERS AND DATA
AND WORDS AND I'VE BEEN LEFT
BEHIND I SUPPOSED BECAUSE I'M
NOT SURE WHAT PARTICULARS WE'RE
SPEAKING TO AND WHEN WE TALK
ABOUT THIS DATA POLICIES WE'RE
SPEAKING OF ALL DATA TO ALL
TYPES.
WHEN WE SPEAK OF INDIGENOUS WITH
NOT JUST FEDERALLY RECOGNIZED
PEOPLE MOST BROADLY BUT WITHOUT
A DEFINITION OF TERMS I'M A
LITTLE LOST AS TO HOW TO
RESPOND.
>> I'M JULIE BEANS MPH NOT
Ph.D. AND HAVE BEEN LISTENING TO
THE CONVERSATIONS AN HEARING THE
QUESTION WHAT SHOULD P.O.s KNOW
IN THE CONTEXT OF THIS WORK.
SOMETHING THAT'S DIFFICULT AND
CHALLENGING FOR ME TO GRASP IS
THE CONVERSATION SEEMS TO BE
AROUND TRIBES AND FEDS AND HOW'S
IT TRANSLATE AND IT'S IMPORTANT
FOR P.O.s AND IN MY EXPERIENCE A
LOT OF THEM DO AND ARE OPEN TO
HEARING MORE ABOUT IT OF WHAT
OUR EXPERIENCES HAVE BEEN AND
IT'S BEEN CHALLENGING TO
UNDERSTAND WHEN YOU SAY
COMMUNITY, WHO IS THE COMMUNITY?
A TRIBAL COMMUNITY WITHIN A
PARTICULAR BOUNDS IS VERY
DIFFERENT THAN A COMMUNITY
WITHIN AN URBAN CONTEXT THAT'S
FROM MANY BACKGROUNDS.
THAT CAN BE MAYBE A LITTLE MORE
FLUIDS.
THAT'S IMPORTANT TO BE AWARE OF.
TO REMIND OURSELVES.
>> I APPRECIATE THE COMMENT ON
TRYING TO BE SPECIFIC AND I'LL
TRY TO DO THAT ESPECIALLY WITH
THE NEXT POINT.
ONE THING THAT'S IMPORTANT THAT
WAS DISCUSSED IN THE LAST
SESSION BUT WORTH REALLY GEARED
TOWARD IS AND LOOK AT PROPOSAS
THERE'S A MANAGEMENT PLAN THAT
INDICATES A PUBLIC AVAILABLE
ACCESS AND THIS IS SOMETHING WE
OFTEN DON'T GET TOLD AND IS
EXPLICITLY LEFT OUT.
I WOULD ARGUE EVERY INVESTIGATOR
WORKING WITH EVERY COMMUNITY
WITH IDEAS AROUND DATA
SOVEREIGNTY CAN BE DEMONSTRATED
CLEARLY.
IT CAN BE URBAN COMMUNITIES AS
WELL.
YOU CAN HAVE THE REQUIREMENT
DOCUMENT AND IT WILL GO THROUGH
P.O.s DECISION BECAUSE IT'S A
NOT-DISCUSSED ITEM.
P.O.s NEED TO UNDERSTAND THAT UP
FRONT.
IT'S IMPORTANT TO KNOW THE ROLE
OF THE NATIONAL INSTITUTES OF
HEALTH IN THE BEGIN.
AS RESEARCHERS I STOPPED MYSELF
WITH THE PRONOUN.
AS RESEARCHERS WE'RE OFTEN
PUTTING IN GRANTS FOR FEDERAL
FUNDING.
IF THE GOAL OF THE NIH IS TO
PROVIDE PUBLIC EN BENEFIT IN
HEALTH AND THE METRIC FOR WHO
GETS THE MARK IS OFF THE MARK A
LOT OF TIMES.
>> OUR NEXT QUESTION IS CAN YOU
SHARE EXAMPLES OF SUCCESSFUL
DATA DESTRUCTION RE-CONSENT OR
RETURN THAT RESPECTS INDIGENOUS
DATA SOVEREIGNTY WHAT CULTURAL
FACTORS SHOULD GUIDE END OF
PROJECT RETURN OR DESTRUCTION
AND FEEL FREE TO SPEAK TO DIRECT
EXPERIENCE OR HYPOTHETICAL.
>> I HAVE A LITTLE EXPERIENCE
STORING THE DATA WITHIN THE
TRIBE AND IT STAYED THERE.
THERE IS SOME TENSION NOW WITH
CURRENT STUDIES WITH WHAT YOUR
UNIVERSITY OR STATE REQUIRES AND
WHAT YOU GO INTO TREATMENT WITH
TRIBAL PARTNERS.
OR REQUIRING WHOLE DATA FOR A
PERIOD OF TIME.
WE HAVEN'T BEEN IN THIS
SITUATION WHERE WE'VE BEEN ASKED
TO DESTROY IT BUT HAD THE
CONVERSATIONS ABOUT BALANCING
THAT REQUIREMENT WITH THE STATE.
>> DATA DESTRUCTION.
SO I'VE HAD THE BLESSING OF
BEING A WORKER FOR VARIOUS
TRIBAL HEALTH ASSOCIATIONS OVER
THE YEARS AND ONE TIME WE HAD
DATA RETURNED TO OUR TRIBAL
HEALTH ORGANIZATION AS THE
TRIBAL AUTHORITY FOR THAT
PARTICULAR RESEARCH AND IT WAS
DATA RETURNED.
WE CHECKED IN WITH WE BROKE THE
CV INTO PIECES AND THAT WAS THE
DATA DESTRUCTION.
WE DIDN'T HAVE A PLAN.
WE LOOKED AT THE THING AND WENT
HMM.
THIS IS ALL OF IT AND THEY SAID
YES.
THE PAPERS IN THE FILE FOLDER AS
WELL AS THE CD THAT WAS SOCIAL
BEHAVIORAL RESEARCH.
I'LL PUT THREES IN THE SHEDDER
AND ROY IN THE ME TO DESTROY
THIS?
YES.
WE BEGAN THE PROCESS RIGHT THERE
IN THE MEETING.
THAT BEING SAID HOW DIFFICULT IT
CAN BE TO DO DATA DESTRUCTION
AND THREE YEARS AFTER THE DATE
OF LAST PUBLICATION AND THE
PROTOCOL APPROVED I HAD IT ON MY
CLFR --
AND MY SIMPLE STATEMENT DIDN'T
INCLUDE ALL THE DIFFERENT
THINGS.
SO WE NEEDED TO THEN SUS OUT
WHAT WOULD BE THE PROCESS.
THERE'S POLICY AND PROCEDURE AND
TO ME THEY'RE LINKED ANIMAL BUT
SEPARATE.
NEED TO BE IN PLACE.
IT'S SOMETHING WE KEEP OUR EYE
ON AS INVESTIGATORS AND THE ONUS
WAS ON ME AS THE INVESTIGATOR.
IF I DIDN'T PUT THE MESSAGE IN
MY OUTLOOK CALENDAR AFTER THE
STUDY WAS COMPLETED AFTER THE
LAST DATE OF PUBLICATION, NO ONE
WAS WATCHING ME OR HOLDING ME
ACCOUNTABLE AND HOLDING MYSELF
ACCOUNT
ACCOUNTABLE.
CAN YOU TRAIN ACCOUNTABILITY?
I DON'T KNOW.
I HAVEN'T SEEN THAT FREQUENTLY
WITH THE PEOPLE I'VE TRAINED TO
SEE THAT KIND OF ACCOUNTABILITY
IN ACTION.
MAYBE I'M NOT THE BEST MENTOR
BUT I THINK ABOUT POLICY AND
PROCEDURE.
WE HAVE PROCEDURE AND HOW IT
FOLLOWED UP ON?
AFTER STUDIES ARE COMPLETE THERE
NEEDS TO BE PERSONAL DEVELOPMENT
FROM THE INVESTIGATOR AND
ORGANIZATIONS TO SEE IT THROUGH
TO THE END.
AND THE END IS WHAT WAS THE
INTENTION OF THOSE THAT HAD BEEN
PARTICIPATING AND WHEN I SAY
THOSE AGAIN, WHO DO WE CONSIDER
THOSE?
BOTH THE INDIVIDUAL PARTICIPANTS
AS WELL AS THE AGENCIES,
ORGANIZATIONS PARTICIPATING.
AND ONLY WAY TO KNOW IS
INQUIRING.
SO THAT WAS PART OF THE THING.
WE ASKED FOR OTHER PROJECTS
APPROPRIATE FOR BIOLOGICAL
SPECIMENS.
AND AGAIN THIS IS A BE PREPARED
TO RESPOND AND WHAT'S THE LEVEL
OF INQUIRY IN PREPARATION OF THE
DATA THAT MIGHT BE HAPPENING
THREE DAYS AFTER THE LAST
PUBLICATION OR THREE YEARS AFTER
THE LAST PUBLICATION AND BEING
PREPARED AND DILIGENT IN
FOLLOWING THROUGH.
AS WE'RE TALKING ABOUT THE
MANAGING THE DATA I FEEL IT'S
HOLDING ONE SELF ACCOUNTABLE AND
OTHERS AS WELL TO FIGURING OUT
WHAT THAT WOULD BE AND THEN
FIGURING OUT HOW TO GET THERE
AND STICKING TO IT.
>> IT'S HARD FOR ANY INDIVIDUAL
TO ENFORCE UPON THEMSELVES.
SOMETHING WE'RE ENACTING I THINK
HELPS AND NOT WAITING UNTIL THE
STATUTE OF DATA AVAILABILITY
EXPIRES.
WE USE RESOURCES LIKE NATIVE BIO
TO STORE ALL OF OUR DATA.
ONCE WE'RE COMPLETED WITH THE
ANALYSIS WE'VE TALKED ABOUT WHAT
SOME OF THE RESULTS ARE,
PUBLICATION IF THERE IS ONE AND
IF THE DATA LEAVES ALL OF OUR
SERVERS AND GOES DOWN AND IF WE
WANT TO BE ABLE TO DO ANYTHING
AGAIN WITH ANY INFORMATION THAT
WAS PART OF THE STUDY WE HAVE TO
GO BACK OUT AND ASK FOR
PERMISSION TO BE ABLE TO USE
THAT DATA EVEN THOUGH IT EXISTS
WITHIN THE FRAMEWORK OF WHAT WAS
ALLOWED AND REMOVES THE ABILITY
TO ENGAGE WITH THE DATA IN A WAY
THAT MAYBE DOESN'T LOOK EXACTLY
WHAT WAS INTENDED UNUSUALLY AND
THAT WAY HOLDS US ACCOUNTABLE TO
SOMEBODY ELSE.
THAT'S SOMETHING THAT MADE OUR
LIVES EASIER IN THIS PROCESS.
>> IN THE ORIGINAL CONTEXT YOU
PROPOSED WITH RESEARCHERS IT'S
ALWAYS EASY TO THINK OF THAT
NEXT QUESTION RELATED TO YOUR
HYPOTHESIS.
I'M CURIOUS IF YOU COULD SPEAK
MORE TO HAVE THE CONVERSATION
WITH COMMUNITY AND WHERE YOU
DRAW THE LINE IN THE PERSONAL
WORK ON WE HAVEN'T EXPLICITLY
TALKED ABOUT ANALYZING THE DATA
IN THIS WAY THOUGH WE'VE SEEN
THE TREND.
IF YOU COULD SPEAK MORE TO
EXAMPLES OF HOW YOU'VE HANDLED
THAT.
>> PEOPLE WERE OUT WITH OUR
COMMUNITY PARTNERS TALKING ABOUT
DIFFERENT S GOING ON.
WE'RE ABLE TO TALK ABOUT WHAT
EXACTLY WE HAD DONE AND WHAT THE
NEXT QUESTION TO US LOOK LIKE
WITH THE HOPE THAT THEY'LL BE
ABLE TO COME BACK TO US SAYING,
YES, GO AND WE'LL BE ABLE TO
RECOVER THE DATA WITH OUR OWN
SERVER TO RE-ANALYZE IT AND LOOK
AT THE QUESTION, ANSWER THE
QUESTION AND REPEAT THE PROCESS
ONCE WE'VE BEEN ABLE TO OBTAIN
INFORMATION AND IF WE'RE GOING
TO ANSWER ANOTHER QUESTION IT
WILL BE THE SAME THING.
GOING BACK OUT TO THE COMMUNITY
AND TALK TO COMMUNITY
REPRESENTATIVES TO GET
AUTHORIZATION AT THE TRIBAL
LEVEL AND RECOVER THE DATA AND
REANALYZE.
IT TAKES MORE TIME PUT THEN WE
KNOW EVER TIME WE'RE ANSWERING A
QUESTION THE QUESTION IS VALUE
TO THE COMMUNITY WHICH IS THE
MOST IMPORTANT PIECE.
IN A SIMILAR EXPERIENCE AND ONE
EXAMPLE WE HAD AND AS
RESEARCHERS WE THOUGHT THAT WAS
RELATED TO THE RESEARCH QUESTION
AND POSE THAT BACK TO OUR TRIBAL
PARTNERS.
THEY SAID, YEAH WE COULD SEE
THAT BUT STILL WANT TO PUT THE
QUESTION TO THE FULL BOARD.
WE HAD TO WRITE AN AMENDMENT AND
PUT IT THROUGH TO THE BOARD AND
COMPLETELY FINE BUT WE HAD TO
ASK.
A LOT OF IT IS LEARNING THROUGH
CONVERSATION AND NOT HAVING THIS
BLANKET STATEMENT BUT IT
DEPENDS.
HAVING THE CONVERSATIONS IS
HELPFUL.
>> WHERE DO TRAINEES FALL INTO
THE DIFFERENT PARTS AND HOW DO
YOU SUPPORT THEM?
UNRECONNECTING WITH COMMUNITIES
OR SHARING DATA OR PUBLICATIOS
AND AS A TRAINEE HOW DO YOU
SUPPORT THEM?
>> FULL TIME EMPLOYEE WITH
BENEFITS MEMBER OF MY TEAM,
DON'T REQUIRE AS MUCH AS I CAN
WHEN I HAVE THE AUTHORITY AND MY
AGENCY DOESN'T I WOULD PUT THEM
AT THE HIGHEST LEVEL OF
EXPERTISE AND PROVIDING
COMMUNITY EXPERTISE OTHER TYPES
OF TRAINING AND EDUCATION.
AND SO THINKING ABOUT THAT AS
THE TEAM SCIENCE WE TEND TO DO
IN MY AGENCY LITERALLY AT THE
SAME TABLE IN DISCUSSION ON
THESE THINGS.
WE'RE HAVING DISCUSSION BUT THE
WAY WE LEAD OUR PROJECTS IS MORE
DISCUSSION BASED AND NOT JUST
JUST WHAT WE'RE DOING.
HERE'S THE PROTOCOL.
DID YOU READ THE ANNUAL
OPERATIONS.
IT'S ON THE SHARE DRIVE.
LOOK AT SLACK, WOULD YOU?
NO, INSTEAD IT'S DISCUSSION
BASED BUT ALSO HOW I TALK AROUND
MY DINNER TABLE AND HOW THINGS
WORK IN GENERAL FOR ME.
I WOULD SAY EVERY INVESTIGATOR
HAS THEIR OWN WAY OF DOING THESE
THINGS.
CHRIS YOU'VE WORKED WITH ME, YOU
KNOW HOW WE CHAT ABOUT S AND
WHAT WAS -- LET'S GO BACK TO
WHAT THE RESEARCH QUESTION WAS
AND LOOK AT THE INSTRUMENT AND
LOOK AT THE INFORMED CONSENT AND
MAKE SURE WE'RE DOTTING Is AND
CROSSING Ts, IN THE WEB WE'RE
WEAVING DID WE PULL IT ALL THE
WAY THROUGH IF NOT, HOW DO WE
TIE IT UP.
THOSE ARE QUESTIONS YOU GET TO
THE SPACE WHERE YOU CAN ASK.
EVERYBODY CAN ASK THE QUESTION
AND EVERYBODY'S DIALOGUING.
NO MATTER WHO ASKED THE QUESTION
WHEN IT WAS ASKED IN THE PROCESS
IT'S NEVER TOO LATE.
YOU CAN MOVE FORWARD AND HAVE
THOSE DISCUSSIONS.
WE CAN CHECK IT OUT.
AND ALL OF US IS PEOPLE THAT
WANT TO USE THE RESTROOM, HEY,
LET ME GET BACK TO YOU ON IT AND
THEN DO IT.
IN TRAINING IT'S SHADOWING, ROLE
MODELLING, WALKING ALONG SIDE
AND YOU COME WITH ME WITH
WHATEVER WE'RE DOING AND THE
NEXT DAY OR WHATEVER MEETING.
WHATEVER.
THAT'S THE MODEL WE TEND TO USE
WITHIN OUR ORGANIZATION AND WE
ALSO DON'T SAY WITH VERY A LAG.
THERE'S NEVER BEEN A LAB.
IT'S JUST NOT THAT WAY IN THE
WAY MY GROUP TENDS TO WORK.
SO THERE'S NOT THAT HIERARCHY, I
GUESS.
I'M SURE ALL OF US AS DIFFERENT
ADVOCATORS FOLLOW DIFFERENT
FORMS AND WAYS OF BEING.
AS AN INVESTIGATOR I'M ALWAYS
CURIOUS WHAT ARE YOUR NEEDS AND
HOW DO YOU GO ABOUT MAKING YOUR
DECISIONS AND WHAT'S THAT LOOK
LIKE?
IT DOESN'T STOP HAVING SOMETHING
TO LEARN AND TO GIVE.
>> I CAN JUMP IN WITH ANOTHER
DATA SHARING AND DISSEMINATION
QUESTION.
THINKING VERY PRACTICALLY AS FAR
AS IF YOU'RE AN INVESTIGATOR
APPLYING FOR ANYONE -- NIH FU
FUNDING WHAT SHOULD BE AGREED
UPON BEFORE ACOLLECTING DATA AND
THINKING ABOUT AN INDIGENOUS
DATA SOVEREIGNTY POLICY, WHAT
SHOULD NIH BE LOOKING FOR IN
WRITING BETWEEN AN INVESTIGATOR
AROUND TRIBE AND INDIGENOUS
COMMUNITY ABOUT PUBLICATION AND
DISSEMINATION?
>> SOMETHING I SHOULD HAVE
TAGGED ON TO THE LAST PART.
THE WAY WE THINK ABOUT
DISSEMINATION IS VERY LIKE
PUBLICATIONS OR LIKE FINDINGS
FROM THE STUDY.
SOMETHING THAT STRUCK ME IN THE
LAST YEAR IS WE COMPLETED A
STUDY AND WE WERE LOOKING AT THE
DATA SET AND WANTED TO USE
PRELIM DATA FOR THE NEXT SECTION
GRANT.
WE WENT TO PARTNERS AND SAID
WE'RE THINKING ABOUT THE NEXT
PROJECT.
IS IT OKAY TO USE THE DATA TO
WRITE THE SECTION.
IT'S NOT GOING UP TO THE PUBLIC
BUT FOR THE GRANT APPLICATION.
THIS WAS A TRIBAL PRART NER WHO
HAS WORKED WITH INVESTIGATORS
FOR DECADES AND THEY SAID NOBODY
EVER ASKED US THAT BEFORE.
THAT WAS STRIKING TO ME AND
THOSE MOMENTS HELP MAKE ME PAUSE
SO HAVING THE BROADER VIEW OF
WHAT IS SHARING FINDINGS MEAN
AND MAY BE IT'S NOT BROADLY BUT
ASKING THE QUESTION.
AND TRYING TO KEEP ASSUMPTION
TO A MINIMUM.
AND YOU CONTEXT FROM THERE OR
NOT AND POSING THE QUESTIONS AND
MAKE SURE NOT JUST THE WE IS.
I -- IS PINNED DOWN BUT WHAT
DOES SHARING AND DISSEMINATION
MEAN.
>> I'M GOING TO JUMP ON BOARD
AND KAYLA, SORRY, NOT ANSWER
YOUR QUESTION BUT I THINK OF
DATA REPOSITORIES AND WORK WITH
SPECIFIC TRIBES ON SPECIFIC
QUESTIONS ON CULTURAL AND
COMMUNITY CONTEXT AND
QUALITATIVE DATA AND AT BEST I
WORK WITH A TRIBE AND THEY TAKE
THE DATA BACK AND I DON'T KNOW
THEY KNOW WHAT TO DO WITH IT
EITHER.
DO I WORK IN ALASKA OR URBAN
COMMUNITIES THAT DON'T HAVE A
BODY THAT WOULD STORE THAT DATA
A
AND WHETHER WHAT OPPORTUNITIES
ARE OUT THERE AND WHETHER
THERE'S A RULE AND HOW DO WE
COLLABORATE ON THINKING WHAT DO
WE DO WITH THE SMALLER DATA SETS
THAT CAN SOMETIMES GO TO THE
SIDE AND WHEN YOU THINK ABOUT
TRAINEES OR THINK ABOUT
SECONDARY DATA ANALYSIS,
DOCTORAL STUDENTS COMING IN AND
WANTING DATA SETS AND HOW COULD
WE MAKE THOSE -- THOSE ARE
IMPORTANT AND THEN I START TO
THINK ABOUT HOW DO WE UNDERSTAND
ACROSS THE BOARD WHAT THE
CULTURALLY SPECIFIC MEASURES
AND/OR INVENTIONS LOOK LIKE.
WHEN WE THINK OF MOVING SCIENCE
FORWARD WHERE ARE OPPORTUNITIES
TO SAY WHERE DID IT WORK AND
WHERE DID IT NOT.
THAT'S THE HARD THING TO TALK
ABOUT AND HARD THING TO TALK
ABOUT WITH TRIBES.
AN CONSTRUCTS OF COMPLEX LIVED
EXPERIEN
EXPERIENCES AND HOW THAT POPS IN
A MODEL AND WHERE ARE THERE
OPPORTUNITIES TO HAVE SOME
REPOSITORIES OR CHANCES TO SHARE
WITH SOME SMALLER PROJECTS OR
DATA SETS WE COULD THINK
COLLECTIVELY HOW WE'RE MOVING
SOME QUESTIONS AND SCIENCE
FORWARD OF MEASURING OR
UNDERSTANDING AND UTILIZING
THESE THINGS.
>> I'VE BEEN THINKING ABOUT THAT
AS A BEHAVIORAL SCIENTIST AND
THE USE OF METALABELS AND MOU TO
DO REPOSITORIES OF SMALLER
SAMPLES AND HOW IMPORTANT IT CAN
BE AND THE WORK FROM LOCAL
CONTEXT MAY BE ABLE TO SUPPORT
AND HAVE CONVERSATIONS AND BUILD
THAT INTO OUR PROCESSES AND IT'S
FOR THE ROOM TO DISCUSS BECAUSE
IT'S A COMMUNITY PROCESS YOU
CREATE THOSE ONE WILL THE
COMMUNITY.
IT'S A WAY OF HAVING THAT LEGACY
CONTINUE AND IT CAN BE BUILT
UPON.
I THINK IT'S AN INTERESTING
HOPEFULLY BENEFICIAL
CONVERSATION.
>> I'LL ADD TO MY THEME OF BEING
FLEXIBLE IS MAKING SURE THE
CONVERSATIONS ARE CONTINUOUS.
THE FINDINGS FROM THE DATA CAN
CHANGE BY THE QUESTION WE'RE
ASKING AND THE COMMUNITY MAY
HAVE THE QUESTION MAYBE EVOLVING
OVER TIME AS THE DATA IS
COLLECTED.
WHEN A FINDING IS FOUND MAYBE
THE QUESTION MAYBE THE QUESTION
BECOMES SOMETHING DIFFERENT
AFTER THAT TYPE OF FINDING.
HAVE THAT CONTINUOUS
CONVERSATION AND REANALYZING,
ASKING DIFFERENT QUESTIONS
ALLOWS FOR THE COMMUNITY AND
RESEARCH PARTICIPANTS TO DECIDE
WHAT THEIR DATA IS ACTUALLY
CONTRIBUTING TO.
I THINK MAKING SURE THE
CONVERSATIONS DON'T END AFTER
THE MAIN QUESTION IS ANSWERED
BECAUSE I THINK THE QUESTIONS
ARE ALWAYS EVOLVING.
>> FOR THE PANELISTS IF ANYONE
WANTS TO GIVE A LAST WORD ON THE
TOPIC WE'LL HOLD SPACE TO DO
THAT AND IF NOT WE'LL GIVE FOLKS
A CHANCE TO WEIGH IN ON THE
SUBJECT.
BEYOND THAT WHILE HAVE A GENERAL
DISCUSSION ON KEY TAKEAWAYS OR
NEW THOUGHTS THAT FORMED AND
BRING TO THE TABLE AS WE DIGEST
THE INFORMATION AND
CONVERSATION.
>> THERE'S ONE THING I WANTED TO
REITERATE.
JOE MENTIONED IN THE LAST
SESSION THE IDEA THAT WE'VE
BECOME VERY FIXATED ON HUMAN
ASSOCIATED MATERIALS AS BEING A
POINT OF IDENTIFICATION.
THEY'RE FUNDING A LARGE FORCE OF
FUNDAMENTAL BIOLOGY THAT NIGHT
TO BE PART OF THE CONVERSATION.
THE MICROBIOME IS AN EASILY
IDENTIFIABLE MARKER FOR CERTAIN
POPULATIONS AND THAT'S TRUE
WITHIN NATIVE NATIONS IN THE
U.S. BASED ON THE STUDY WE'RE
JUST WRAPPING UP NOW.
ISOLATED AND THE PROXY DATA CAN
INFORM HUMAN SUBJECTS.
AND SO THINKING ABOUT
APPLICATION OF THESE IDEAS
BROADLY INCLUDING GMS WHERE IT'S
LIKE, IT DOESN'T APPLY TO ME
BECAUSE I'M DOING X, THAT IDEA
NEED TO BE PUSHED BACK AGAINST.
ALL RIGHT.
WE'LL OPEN UP TO FOLKS GENERALLY
WHO WANT TO WEIGH IN ON THE
TOPIC OF ETHICAL DISSEMINATION
STRATEGIES FOR PUBLICATION.
>> ONE QUICK THING.
IN MONTANA IT'S DIFFERENT.
MOST NATIVE PEOPLE STILL LIVE ON
RESERVATIONS.
IT'S VERY IMPORTANT FOR PEOPLE
TO WORK WITH THE TRIBAL
PRESERVATION OFFICES ESPECIALLY
BECAUSE IT'S WITH IN THE
CATEGORY OF NECRA AND HUMAN
REMAINS FOR SOME TRIBES.
ALSO AS A MEMBER OF CERTAIN
CULTURAL SOCIETIES YOU AN
INTERACTS WITH OBJECTS OR ITEMS
INCLUDING DECEASED PEOPLE AND I
UNDERSTAND THE LEVEL OF
SPECIFICITY SAYING WE BUT DON'T
THINK AN ISSUE OF SOCIAL
SCIENTISTS IS WE HAVE BECOME
TRAINED TO BE AFRAID IN SPEAKING
WE MICROMANAGE WHAT WE'RE
TALKING ABOUT.
I THINK WE'RE ALL COMING TO A
SPACE RECOGNIZING WE COME FROM
POSITIONALITIES WITHIN OUR
IDENTITIES.
I THINK WE CAN TALK ABOUT WHAT
IS COMMON.
AND GO TO ISSUES THAT HAVE
STRONG STANCES TAKEN BY SOME
TRIBES AND THERE'S ISSUES AND
REASONS FOR THAT BEYOND MY
UNDERSTANDING.
AND I HAVE TO SAY THAT.
WHAT DO WE DO WHEN SOMEBODY
MISUSES TISSUES AND SAMPLE.
IS THERE A WAY TO ENSURE WHO
MISUSES ENVIRONMENTAL OR HUMAN
SAMPLE IS THERE A WAY TO ENSURE
THAT NIH NO LONGER FUNDS THEM OR
HAS THEM GO THROUGH A PROCESS
BEFORE THEY CAN BE FUNDED BEFORE
IT'S TRAINING OR TRIBAL
CONSULTATION OR SOMETHING WE
COULD DO.
>> FIRST AND FOREMOST IS TO BE
TRANSPARENT AND WORK WITH THE
TRIBES TO LET THEM KNOW WHEN
IT'S HAPPENED.
APOLOGIES IT'S NOT OKAY.
ACTION HAS TO BE FOLLOWED BY AN
ACTION.
USUALLY THERE'S DEPENDING ON
TRIBAL INPUT USUALLY IT'S MIG
FROM FURTHER TRAINING OR
DEVELOPMENT OR FURTHER SPEAK
WITH THE TRIBES AND LETTING THEM
KNOW TOE MAKE DECISIONS IF THE
TRIBES WANT THEIR SAMPLES BACK.
WE'VE TAKEN A DIRECT APPROACH
WITH THE SUPPORT OF THE NIH
DIRECTOR IN CERTAIN SITUATIONS.
>> GOING BACK TO THE HISTORY OF
PUBLICATIONS WE TALKED A LITTLE
BIT ABOUT.
I KNOW THAT IN MY EXPERIENCE
THAT HARMS THAT ARE INFLICTED
UPON TRIBAL COMMUNITIES IS AT
THE PUBLICATION STAGE.
SO THAT'S WHEN THE DATA IS
PRESENTED, PUBLISHED IS WHEN THE
HARM OCCURS.
AND BECOME AWARE.
AT CHICKASAW NATION WE HAVE A
POLICY TO REVIEW AND APPROVAL OF
THE PUBLICATION OF PRESENTATION
BEFORE IT'S MADE PUBLIC.
I KNOW OTHER TRIBES HAVE THAT
IRB REVIEW OF WHAT THE MECHANISM
MIGHT BE.
I THINK IF I'M NOT MISTAKEN
THERE'S AN NIH SUPPLEMENT THAT
THERE'S MENTION ABOUT
RESEARCHERS NEED TO BE AWARE AND
SOMETHING THEY MAY NEED TO DEAL
WITH BEFORE THE RESEARCH STARTS
BUT I'M NOT SURE THAT'S ENOUGH.
JUST TO BE AWARE.
PERHAPS IT NEEDS TO BE A
REQUIREMENT.
BEFORE YOU IN TER INTO THIS
PROJECT WITH THE TRIBE THAT
THOSE MANUSCRIPTS, PRESENTATIONS
WILL BE REVIEWED AND WE GET
EDITING RIGHTS AS WELL.
IT'S NOT ENOUGH TO REVIEW IT BUT
MAKE CHANGES IF THERE'S
SOMETHING YOU DISAGREE WITH IN
OUR MANAGEMENT POLICIES.
THAT'S A DEAL BREAK SOMETIMES.
AND TO ME HAVING THAT AS A
POSSIBILITY OR NEED ABBE AWARE
IS PERHAPS NOT STRONG ENOUGH AND
SOMETHING THAT NEED TO BE MADE
MORE OFFICIAL IN THE NIH
GUIDANCE.
>> THAT'S HELPFUL.
WE AGREE WE HAVE IT'S NOT ENOUGH
TO GO TO DISPOSAL BUT
DISSEMINATION IS WHERE THE HARMS
COME TO LIGHT.
IT WOULD BE CRITICAL TO HAVE
MORE TEETH IN THAT POLICY FOR
SURE.
>> I WANTED TO SHARE AN EXAMPLE
OF THE DATA DESTRUCTION PROCESS.
I WAS AN INVESTIGATOR WITH
BONNIE DURAN ON A NATIONAL
PROJECT.
IN THE DATA SHARING AND
OWNERSHIP AGREEMENT WE HAD
PROVISIONS THAT INCLUDED THE
PROCESS FOR DESTRUCTION OF THE
DATA.
IN WINDSHIELD WE HAVE TO RETAIN
THE DATA FOR SEVEN YEARS AFTER
THE END OF THE PROJECT PERIOD.
SO WE DE-IDENTIFIED IT AT THE
INDIVIDUAL AND TRIBAL COLLEGE
LEVEL AND ALSO THE TRIBAL LEVEL.
WE MAINTAINED IT FOR THE SEVEN
YEARS AND ABOUT EIGHT MONTHS
BEFORE THE END OF THAT
SEVEN-YEAR PERIOD ANOTHER
CO-INVESTIGATOR IN THE PROJECT
STARTED THE PROCESS OF GOING
BACK TO A CATALOG OF THE DATA WE
HAD AND SYSTEMATICALLY IN
POSSESSION WE LOOKED ATE THIS
DATA AND TURNED IT BACK TO THE
TRIBAL COLLEGES.
WE AND WE START DELETING THE
FILES WE HAD AND DESTROYING ALL
THE HARD COPY PAPER FILES WE HAD
AS WELL.
SO THE POINT IS THE AGREEMENT
THAT WE HAD IN PLACE IS REALLY
HELPFUL BECAUSE IT SET FORWARD
THE PROCESS OF HOW WE'D GO ABOUT
THAT.
THANK YOU FOR THAT EXAMPLE.
>> TO ADD TO BOBBY'S COMMENT,
I'M NOT THAT CONFIDENT UP IRBs
BUT PERHAPS AN IRB COULD BE A
THIRD-PARTY REVIEWER OF THAT
PARTICULAR POLICY BECAUSE IN
CHICKASAW THEY DO THEIR OWN
DOCUMENT REPRESENTATION REVIEW
BUT NOT ALL TRIBES HAVE THAT BUT
ONE STUDY THEY SNUCK INTO THE
FINE PRINT IS THE TRIBE DOESN'T
RESPOND IN 60 OR 90 DAYS THEY GO
AHEAD AND PUBLISH ANYWAY AND TO
ME THAT'S AN ETHICAL VIOLATION.
IF THE TRIBE'S IN THE PAYING
ATTENTION, SOMEBODY SHOULD.
>> NO OPT-OUT PROCESS.
>> NO PASSIVE APPROVAL.
MAYBE WHAT HAPPENS WITH MISUSE.
AND WE LOOK AT EQUITY HERE AND
ANYTHING THAT COMES FORWARD WITH
RESPECT TO MISCONDUCT OR THERE'S
A REVIEW PROCESS HERE FOR THEM
BUT MOST PEOPLE AREN'T AWARE OF
THAT.
[OFF-MIC]
>> WE GET IT.
BASICALLY, YEAH.
>> I DIDN'T KNOW AS A
RESEARCHER -- I MEAN I KIND OF
HEARD BUT I DIDN'T KNOW AT THE
INSTITUTES THIS WAS SUCH A
MASSIVE PLACE, HONESTLY BUT
THERE ARE FORMAL LEGALISTIC
THINGS IN PLACE.
SOME WILL NOT ADDRESS SOME
THINGS YOU'RE WANTING TO ADDRESS
THAT'S WHY A POLICY IS SO
IMPORTANT AND A BASELINE OF WHAT
SHOULD BE HAPPENING.
AND LOOK AT THE CONSEQUENCES AND
AND JUST KNOW THAT RIGHT NOW
WHEN WE GET CALLED INTO A
SITUATION ASKED TO WEIGH IN WE
LET THE TRIBAL ADVISORY
COMMITTEE KNOW THERE'S AN
INVESTIGATION IS ONGOING AND
GIVE A BRIEFING AND GIVE A STACK
OF DEBRIEFING AND UP THE COMMAND
AND A CONSULTATION WITH THE
DIRECTOR OF INTEGRITY AND UP THE
CHAIN IN SOME SITUATIONS.
IT DEPENDS ON THE SITUATION AND
SOME ASPECTS OF LEGALITY.
IN ALL CASES IF IT'S INVOLVING
TRIBES ONE OF MY FIRST GO TO IS
WE LET THE TRIBES KNOW AND TALK
TO THE TRIBES DIRECTLY.
I WANT FULL TRANSPARENCY THAT'S
THE ONLY WAY TO BUILD SOME TRUST
INTO THE PROCESS.
>> KARINA, I WONDER IF YOU'RE
ALSO THINKING ABOUT BECAUSE
JOURNALS ALSO AND THERE'S A MORE
ACTIVE ROLE THAT JOURNALS ARE
PLAYING IN TERMS OF FALSE
FICTION OF DATA BUT ALSO IT'S A
REAL BLACK MARK ON THE AUTHORS
OF THE PAPER FOR MISINTERPRETING
DATA AND I THINK IT'S A NEW
FIELD.
I'M NOT AWARE OF IT BUT IN MY
FIELD I'VE BEEN IN LIKE PEOPLE
MAKE UP DATA OR GRAPHS AND
THINGS LIKE THAT AND IT'S A
PROBLEM AND IF YOU USE NIH DATA
YOU'RE POSTED.
IT WOULD BE A COOL THING TO HAVE
A POLICY IN PLACE THAT WOULD
CALL OUT THAT THERE WAS AN
AGREEMENT WITH A TRIBE OR
COMMUNITY OF INDIGENOUS ANCESTRY
AND THESE INDIVIDUALS FAILED TO
MEET THAT EXPECTATION.
AND NOWADAYS YOU CAN GET
ANYTHING OUT AND FOR VAURS
PEOPLE TO KNOW SO IN A WAY --
VARIOUS PEOPLE KNOW THERE'S THE
THING WE CAN DO GOOD AND BAD
SOCIAL MEDIA CAN BE BAD AS WELL
BUT YOU DON'T NECESSARILY NEED
TO HAVE -- AND IT WOULD TELL
OTHER PEOPLE THINKING OF WORKING
WITH THIS GROUP OR WHATEVER T
THAT, YEAH.
>> AND THAT'S WHAT I HAD IN MIND
NOT SO MUCH SOCIAL MEDIA OR
ANYTHING BUT SOME ACCESSIBLE
MECHANISM SO COMMUNITY MEMBERS
CAN SAY I THINK OF IT LIKE WHEN
YOU DO A PHONE CALL TO CUSTOMER
SERVICE AND THEY SAY IN THIS
CALL WE'LL GIVE YOU A SURVEY AND
LET ME KNOW HOW WELL I'VE SERVED
YOU SO COMMUNITY MEMBERS CAN SAY
THIS PERSON CAME AND PROMISED X,
Y AND Z AND DIDN'T DELIVER OR
WHATEVER.
AND I FEEL LIKE THAT LEVEL OF
ACCOUNTABILITY IS IMPORTANT TOO.
I DON'T KNOW THE CHECKS ON THAT.
>> I SUPPOSE WHERE I WISH TO GO
WITH THAT IS TO MENTION WITHIN
OUR FEDERAL GRANT PROCESSES ANY
TYPE OF PROCUREMENT GOES THROUGH
OUR SYSTEM FOR AWARD MANAGEMENT.
TO ME IT'S AMAZING THAT IF I
HAVE A VENDOR I'M TRYING TO USE
TO PURCHASE PIPETTES OR PENCILS
I NEED TO HAVE MY PROCUREMENT
OFFICE CHECK WITH SAM TO SEE IF
THEY'RE AN APPROPRIATE VENDOR
BUT THERE ISN'T SOMETHING
SIMILAR TO SEE IF AN
INVESTIGATOR IS APPROPRIATE FOR
DOING THE WORK INSTEAD THEY'RE
VETTED OR WITH AN AGENCY.
MY SUGGESTION IS IF WE HAVE SAM
FOR PROCUREMENT OF ITEMS WOULD
WE HAVE A CONSIDERATION FOR
INVESTIGATORS NOT JUST IN TRIBAL
COMMUNITIES FOR ALL HUMAN
SUBJECTS WORK AND THOSE THINGS
ARE TECHNICALLY NOT HUMAN
SUBJECTS BUT COMING FROM HUMANS
AND LOOK AT AREAS FOR DEBARMENT
AND SUSPENSION AND CONSIDERED ON
AN ANNUAL BASIS AND IF WE CAN DO
IT AROUND PENCILS AND SIGNS AND
WHO GETS TO SELL NAME BADGES IT
SEEMS WE SHOULD BE ABLE TO DO
THIS FOR SOMETHING OF MORE
MEANING.
>> I DON'T KNOW IF THIS WILL BE
EARTH SHATTERING AND MORE ABOUT
SAMPLES.
ONE OF THE SITES FOR THE ABCD
PROJECT AND THERE'S AN EXTENSION
IN RESPONSE TO COLLECTING
ADDITIONAL BLOOD SAMPLES VIA A
CLIP AND THE CHEROKEE NATION AND
IRB AND WORKED TO DEVELOP A
PROCESS FOR HOW DO WE RE-CONSENT
PEOPLE TO GATHER THIS DATA AND
DO WITH THE SAMPLES WHEN WE'RE
DONE AND A LOT OF BACK AND FORTH
AND THEY IDENTIFIED SPECIFIC
COMMUNITY MEMBERS TO HELP INFORM
THAT PROCESS AND EVENTUALLY
LANDED ON WITHIN THE PLAIN
LANGUAGE OF THE CONSENT OFFERING
A SPECIFIC AGREEMENT TO EVERY
PARTICIPANT THAT AGREED SAYING
THERE WAS NOT AN OPT-OUT
DECISION.
THEY HAD TO DECIDE DO YOU WANT
US TO DESTROY THIS SAMPLE AS WE
WOULD WITH TYPICAL BIO SAMPLES
FROM JUST OUR LAB-BASED
PROTOCOL?
DO YOU WANT US TO SEND THIS BACK
FOR CHEROKEE NATION FOR THEIR
IDENTIFIED CULTURAL PROTOCOL FOR
DISRUPTION OR RETURN THE SAMPLE
DIRECTLY TO YOU?
SO EVERY PARTICIPANT SIGNED THAT
AND WE AS AN INSTITUTE PUCKED UP
THE -- PICKED UP THE FUNDING FOR
THE MEETINGS AND PROCESS TO HAVE
THE FLEXIBILITY.
IN ADDITION TO ALL THESE PANELS
EACH DECISION POINT IS WE NEED
MORE TIME AND MONEY.
JUST TO BE DIRECT ABOUT SOME OF
THE RESOURCES THAT MIGHT NEED TO
BE AVAILABLE BUT THAT ALSO
BRINGS UP A QUESTION FOR WHEN
THE POLICY IS IMPLEMENTED, HOW
WILL THIS AFFECT SOME ONGOING
LARGER STUDIES THAT INVOLVE
NATIVE COMMUNITIES AND THEIR
SAMPLES BECAUSE I KNOW EARLIER
IN THE OPENING YOU DESCRIBED
VARIOUS DEFINITIONS VERSUS RULE
AND NON-RESERVATION.
SOME LARGER STUDIES ONGOING
WHETHER ALL OF US, ABCD, HBD AND
SO ON, HAD A MIXTURE AND I'M
CURIOUS WILL THE POLICIES BE
RETROACTIVE OR CLINICAL TRIALS
EXPECTED TO UPLOAD DATA TO
THINGS OF THAT NATURE.
>> SORRY.
>> I JUST WANTED TO JUMP BACK
FOR A SECOND ON THE QUESTION ON
THE RESEARCH THERE ARE THREE
TYPES THAT NIH PRIMARILY FOCUSES
ON THOUGH I THINK THERE'S OTHER
KINDS OF THINGS IN THE BALLPARK
BUT DIFFERENT.
THERE'S FABRICATING, FALSIFYING
OR PLAGIARIZING IN PERFORMING OR
REPORTING RESEARCH RESULTS IS
THE OFFICE OF ORI.
IT DOESN'T ADDRESS FABRICATION
OF PERSONAL IDENTITY OR DEAL
WITH -- I'M TRYING TO THINK OF
AN EXAMPLE NOT GIVING DATA BACK
WHEN DATA NOT PROPERLY
DISPOSING.
THAT MAY FALL UNDER SOMETHING
ELSE BUT YOU RAISED AN IMPORTANT
POINT TO THINK WHAT IS IN PLACE
RIGHT NOW AND HOW DOES THIS IDS
POLICY CONNECT OR NOT DISCONNECT
WITH POTENTIAL CONSEQUENCES AND
ACTIONS AND WHAT'S THAT LOOK
LIKE?
THAT'S SOMETHING WE'LL FOLLOW UP
ON.
LOOK AT NIH OR ORI IF
INTERESTED.
>> TO EVAN'S POINT IN THINKING
ABOUT THE POLICY WOULD PRIMARILY
APPLY TO NEW RESEARCH PROPOSALS
OR RESEARCH INFERENCE TO AN
INDIGENOUS POPULATION OR TRIBE
OR DIRECTLY WORKING WITH THEM.
THAT SAID, THERE ARE MANY OTHER
THINGS GOING ON AT NIH AND HHS
LOOKING RETROSPECTIVELY.
SO WE'VE BEEN HAVING
CONVERSATIONS WITH OUR TRIBAL
COMMITTEE ON BIO SPECIMEN RETURN
AND WHAT THAT LOOKS LIKE AND
WE'RE STARTING THAT CONVERSATION
ON THAT FIRST WHETHER IT GOES
ANYWHERE ELSE.
THERE'S ALSO ONGOING
CONVERSATIONS AND UPCOMING
TRIBAL CONSULTATION ON OCTOBER 1
WHERE HHS IS PROPOSING TRIBAL
DATA SHARING POLICY THAT WOULD
APPLY TO ALL AGENCIES UNDER HHS
THAT HOLD AGENCIES ACCOUNTABLE
TO PROVIDING THE SAME LEVEL OF
ACCESS TO DATA TO TRIBES THAT
THEY WOULD A STATE FOR EXAMPLE.
THAT'S ONE WAY THAT WILL
DRAMATICALLY SHAKE UP SOME OF
THIS ACCOUNTABILITY ON DATA
RETROSPECTIVELY AND FRANKLY
THERE'S WORK TO DO ON THE NIH
SIDE.
WE ALLUDED TO UNDERSTANDING
WHERE THE DATA SITS IN BIO
REPOSITORIES FUNDED BY NIH RIGHT
NOW.
WE DON'T HAVE A GRASP ON THAT
AND WILL HAVE A CHALLENGE IN
UNDERSTANDING WHERE THE DATA IS
AND TO BE ACCOUNTABLE SO IF
ANYONE IS CONTACTED BY A TRIBE
WE CAN HELP GUIDE THEM TO THE
RIGHT PLACE.
RIGHT NOW THE WAY THAT'S BEING
THOUGHT THROUGH AND THIS IS ALL
PRELIMINARY IS THAT WE WOULD AT
LEAST DIRECT TRIBES TO THE SAME
LEVEL OF ACCESS IN THE PUBLIC
DATA REPOSITORIES ANY
INVESTIGATOR STATE WOULD HAVE
ACCESS TO.
SO IF A TRIBE COMES AND WANT TO
APPLY FOR ACCESS TO DATA
REPOSITORY MAYBE IT'S THE ALL OF
US RESEARCHER WORK BENCH, MAYBE
ANOTHER BIO REPOSITORY HELD BY
NIH WE'D DIRECT THE TRIBE TO
APPLY TO ANYBODY ELSE AND THEY'D
HAVE ACCESS TO THE DATA.
THAT'S ONE WAY WE'RE THINKING
ABOUT THAT BUT THAT'S GOING
THROUGH TRIBAL CONSULTATION.
I IMAGINE IT WILL BE A LIVELY
DISCUSSION WITH HHS AND TRIBAL
LEADERS WHO HAVE COME TO THAT
CONVERSATION.
>> WE'VE SAID MYSELF AND OTHER
COLLEAGUES, TRIBES ARE GOING TO
CRUSH YOU ON THIS.
THERE'S A REAL PROBLEM HERE.
THERE'S SOME THINGS THAT NEED TO
BE REWORKED.
JUST TO SAY THE CONVERSATION IS
HAPPENING AND INTENDED TO SET UP
ALL AGENCIES ON BE RESPONSIVE TO
SHARING DATA WITH TRIBES.
I HIGHLY RECOMMEND FOLKS LISTEN
INTO THE TRIBAL CONSULTATIONS
ARE PUBLIC NIH AND HHS AND
YOU'RE ABLE TO LISTEN IN.
>> I WANTED TO ACKNOWLEDGE WE DO
HAVE TRIBAL DATA THAT I KNOW HAS
RESTRICTED ACCESS.
THAT'S ALREADY COORDINATED WITH
THE TRIBES IN TERMS OF
RESTRICTED ACCESS.
WE HAVE PROCESSES IN PLACE WHERE
THERE'S RESTRICTED ACCESS AND
WE'RE IN THE PROCESS OF TALKING
WITH OUR POLICY PEOPLE ON THE
GENOME SIDE AS WELL TO MAKE SURE
EVERYTHING'S ALIGNED WITH THE
POLICY WE HOPE TO SET.
>> MINE IS THREE INTERRELATED
QUESTIONS.
I KNOW IN THE PAST SOME RESEARCH
DATA HAS BEEN USED AGAINST
TRIBES THROUGH A FOYA REQUEST
ESPECIALLY IF THEY KNOW THE DATA
IS GOING TO BE DESTROYED SOON.
CERTIFICATES OF CONFIDENTIALITY
FROM WHAT I CAN GATHER IS
UNTESTED IF SOMEBODY IS
QUESTIONED BY THE CIA OR FBI OR
HOMELAND SECURITY.
IF THE DATA IS DESTROYED, DOES
NIH HAVE A POLICY OF HOW LONG
THE CERTIFICATES OF
CONFIDENTIALITY HANG AROUND?
SOMETIMES PEOPLE PUT A FLASH
DRIVE IN THEIR POCKET OR GETS
LOST IN THE DESK DRAWER AND THE
DATA SHOWS UP SOMEWHERE.
IF IT GETS RELEASED --
>> THAT'S A VIOLATION.
IF THAT HAPPENS THAT PERSON WILL
BE IN BIG TROUBLE.
>> SOMETIMES IT'S AN ACCIDENT
IT'S A GRADUATE STUDENT OR
SOMETHING.
WHAT IS NECESSARY IS THE
CERTIFICATE NEEDS TO BE THERE.
>> IT'S AUTOMATIC NOW.
YOU USED TO HAVE TO APPLY FOR
CERTIFICATES OF CONFIDENTIALITY
AND ISSUED FOR ANY NIH FUNDED
RESEARCH AND USES IDENTIFIABLE
SENSITIVE INFORMATION.
THAT'S BEEN IN PLACE A LITTLE
BIT.
IT'S NOT A PHYSICAL CERTIFICATE.
I THINK PEOPLE THINK THAT'S
WHAT'S GOING TO HAPPEN.
YOU DON'T NEED TO REQUEST IT.
HOW LONG THAT'S IN PLACE I DON'T
KNOW AND WE CAN LOOK INTO THAT.
>> MY LAST ONE IS WE'VE BEEN
GETTING INCREASINGLY NON
DESCRIPT REASONS FOR NOT GETTING
TRIBAL DATA BACK.
THEY'LL GIVE IT BACK AND THEN
SAY HERE'S YOUR COPY BUT IT'S
STILL ON OUR DATABASE.
WE CONSEQUENT REMOVE IT FOR
TECHNICAL REASONS BUT NO LONGER
PUBLICALLY FACING.
>> WE'D EXPECT IT TO BE
DESTROYED AND IF IT'S AN HIP --
NIH STUDY WE GET A CALL AND WE
FOLLOW-UP.
IT'S IMPORTANT TO MAKE SURE THIS
IS ALL IN TO NOT HAVE TO BACK
TRACK AND DEAL WITH THAT BUT
THAT'S AN ISSUE TOO.
>> THE FOYA REQUEST.
>> WHAT WAS YOUR QUESTION?
>> I LOOKED AT THE 1975
SELF-DETERMINATION ACT SAYS NO
DATA FROM THE TRIBE CAN BE
FOIBLE.
>> I KNOW THIS IS A TOPIC OF
CONVERSATION AT THE WHITE HOUSE
COMMITTEE ON INDIGENOUS FROTH
AND SUBCOMMITTEE WE SIT ON AND
RECOGNIZED ACROSS THE FEDERAL
GOVERNMENT FOYA IS A BARRIER TO
BEING ABLE TO PROTECT INDIGENOUS
KNOWLEDGE AND I THINK NIH
THERE'S A LIST OF CONDITIONS
UNDER WHICH A FEDERAL AGENCY CAN
DECLINE TO RESPOND TO THE DATA.
THERE ARE THINGS I KNOW FOLKS IN
OSP AND I'VE TALKED TO OTHERS
ABOUT THIS.
THIS IS AN AREA OF FOCUS.
I DON'T HAVE A GOOD ANSWER
EXACTLY HOW IT'S BEEN PLAYED OUT
IN PRACTICE.
I DON'T NO THERE'S BEEN PRESS IN
THE FOYA.
IT'S ON THE RADAR NOW.
IT'S BEING TALKED ABOUT MULTIPLE
AGENCIES.
>> SO THERE'S SOMETHING ABOUT
WHETHER IF THE TRIBE RETAINS THE
RECORD IT'S NOT FOYABLE.
>> BOBBY.
>> I HAD A QUICK QUESTION
PERHAPS CONSIDER FOR TOMORROW OR
WHEN EVER I KNOW THERE'S
INSTANCES WHERE NIH PARTNERS
WITH INDUSTRY FOR RESEARCH S AND
I THINK OF NCI OR WHATEVER, HOW
ARE YOU GOING TO ENSURE INDUSTRY
COMPLIES WITH THE NIH POLICY
BECAUSE THEY'RE A WHOLE
DIFFERENT ANIMAL.
THEY'RE ON THEIR OWN AND DO
THEIR OWN THING.
HOW ARE WE GOING TO ENSURE THEY
ABIDE BY DATA OWNERSHIP AND
ACCESS AND ALL THOSE THINGS
WE'RE TALKING ABOUT IN THE
POLICY?
THANK YOU.
>> GREAT QUESTION.
I THINK THAT'S THE FOURTH LEG OF
THE STOOL TALKING ABOUT
UNIVERSITY AND INDUSTRY'S THE
OTHER ONE AND ANOTHER AREA WE
NEED TO THINK ABOUT IN TERMS OF
AN NIH-FUNDED PROJECT.
WE'D HAVE EXPECTATIONS FOR THAT
CONSENT PROCESS AND COLLECTIVE
CONSENT TO BE ALREADY IN PLACE.
IF THE TRIBE WANTS TO PARTNER
THAT'S THE TRIBAL'S SOVEREIGN
DECISION.
WE DON'T EXPECT SOMEONE TO
TRANSFER IT TO INDUSTRY AND HAVE
THE RECORDS.
NOTHING CAN BE DONE WITHOUT
TRIBAL APPROVAL.
>> THAT'S COMPLEX.
>> THERE'S DATA THAT LIVES IN
THE REPOSITORIES PUBLICALLY
FACING.
THE POLICY IF I'M UNDERSTANDING
DIRECTLY FROM THE NIH'S
PERSPECTIVE IS ANY FEDERAL HI
FUNDED, NIH FUNDED RESEARCH THAT
HANDLES OR COLLECT DATA ON HUMAN
SUBJECTS THAT INFORMATION
ESPECIALLY GENOMIC AND OTHER
OMICS DATA HAS TO BE PUBLICALLY
DEPOSITED INTO A PUBLICALLY
FACING DATA REPOSITORY AND FOR
THE SCIENTIFIC COMMUNITY IS THE
INTENT.
ONCE IT GETS TO THAT POINT AND
LIVES IN THE PUBLIC DOMAIN OR
VOICES ARE LOST COMPLETELY.
OUR OWNERSHIP OVER OR
PERSPECTIVES ON THAT INFORMATION
IN THE PUBLIC DOMAIN IS
BASICALLY WE'RE NOT' AT THE
TABLE.
TO ACHIEVE SOME DEGREE OF
PROTECTIONS HOW THAT INFORMATION
OF THE DATA USED IN THE ACCESS
THERE'S SOME LIMITED PROTECTIONS
AND THERE'S A FEW EXAMPLES FOR
BEST PRACTICES.
AT THE LARGEST COHORT TO INCLUDE
THE LARGEST HAWAIIAN INDIVIDUALS
IN DATA SETS AND BIO SPECIMENS
AND INDIVIDUAL AND GENOMIC DATA
IS DEPOSITED TO DB GAP.
WE'RE CREATING A PROCESS WITHIN
DB GAP AMENABLE TO RECOGNIZE
THAT ANY INVESTIGATOR OR
INDIVIDUAL THAT'S SEEKING ACCESS
TO THAT INFORMATION THE DATA,
METADATA, GENOMIC DATA FOR
HAWAIIAN INDIVIDUALS BE VETTED
FIRST THROUGH OUR NATIVE
HAWAIIAN BOARD AT THE UNIVERSITY
OF HAWAI'I.
THAT REQUEST INCLUDES NOT JUST
AN OVERSIGHT OF THE
JUSTIFICATION FOR SCIENTIFIC
RIGOR ABOUT WHAT THE INFORMATION
IS GOING TO PROVIDE BUT NUANCED
COMMUNITY CONTACT AND
PERSPECTIVES FROM INDIVIDUALS
AND OTHER COMMUNITY MEMBERS
SITTING ON IN THE BOARD.
THAT AT LEAST GIVES A SECOND
PROCESS BY WHICH THE REQUEST IS
VETTED THROUGH AND THE REVIEWERS
ARE LOOKING FOR SPECIFIC THINGS
IN THE PROCESS.
SOME WE'VE ALREADY DISCUSSED
TODAY.
IT GOES BACK TO THE INVESTIGATOR
FOR REVISED RESUBMISSION IF
THERE'S ISSUES BUT THAT INCLUDES
RIGOROUS DISSEMINATION PLAN AS
WELL AS HOW THE INFORMATION WILL
BE RELEASED TO THE COMMUNITY AND
WHERE THE DATA LIVES AND THE
CHECK POINTS ARE IN PLACE.
THERE'S SOME GUIDANCE FOR DATA
LIVING IN THAT PUBLICALLY FACING
DOMAIN AND SOME DIALOGUE AND
COMMUNITY REPRESENTATION ON THE
TABLE FOR THOSE NOT FEDERALLY
RECOGNIZED ENTITIES.
THERE ARE STRATEGIES WE CAN PUT
IN PLACE FOR DATA IN THAT SPACE
AND ONCOMING DATA COLLECTED FROM
RESEARCHERS IN THE PROCESS.
AND THE SECOND THING I WANTED TO
ADD WAS ABOUT THE SAMPLES IN THE
BIO REPOSITORIES AND SIMILAR
PROCESS IN PLACE FOR WHEN WE'RE
EXPECTING THE USE OF ACCESS TO
SAMPLES NOT JUST THE DATA SETS
BUT THE SAMPLES THAT CAN BE USED
FOR SECONDARY ANALYSES OR OTHER
EXPERIMENTS REQUEST S IN THE
ADVISORY GROUP AND ALLOW SOME
DIALOGUE.
>> WE'RE GOING TO WORK WITH
FOLKS IN DB GAP AND GENOMICS AND
THERE'S CONTROLLED ACCESS FOR
DATA SHARING FOR TRIBAL DATA IN
PLACE BUT IT WOULD BE BETTER TO
HAVE A MORE CLEAR POLICY IN
PLACE AND ANOTHER REASON TO HAVE
A POTENTIAL INVESTIGATE
OPPORTUNITY TO WHERE HOW THE
NATIVE IRB MAY BE PART OF THAT
OR NOT.
IF ANYONE HAS AN INTERESTING TO
DEVELOP IT BECAUSE WITH NEED AN
EXTENSIVE LIST.
IT'S NOT GOING TO BE A SHORT
LIST LIKE A GROUP OF EXPERTS
CALLED FOR PANEL SITUATIONS THAT
MAY COME UP.
WE'LL LOOK TO EXAMPLES WHERE
IT'S BEEN SUCCESSFUL.
LET US KNOW BECAUSE WE'LL LOOK
AT THAT HERE.
>> TOTALLY CHANGING THE SUBJECT.
ON TRAINING, I MENTIONED
TRAINING EARLIER.
IT'S HARD TO TRAIN PEOPLE IN HOW
TO WORK WITH INDIGENOUS SAMPLES
AND WE NEED TO DO RESEARCH ON
INDIGENOUS SAMPLES.
WHAT TRAINING ARE PEOPLE WHO
WORK WITH INDIGENOUS SAMPLES
WHAT DO THEY HAVE TO GO THROUGH?
WE HAVE AN NIH ETHICAL TRAINING
AND WHAT'S THE PLAN TO TRAIN
INDIGENOUS SCIENTISTS TO HAVE
MORE PEOPLE TO SPEAK ON THESE?
>> BOTH GOOD QUESTIONS.
>> I DON'T HAVE AN ANSWER.
>> PROTOCOL GOES TO ANY HUMAN
SUBJECTS RESEARCH WE'RE
REQUIRING INVESTIGATORS TO TAKE
COMMUNITY-BASED COURSE TO LEARN
ABOUT OUR COMMUNITY AND PROVIDE
EXPERIENCES FOR INVESTIGATORS TO
LEARN FROM OUR COMMUNITY
PARTNERS.
SO WE EMBED THAT IN THE PROCESS
OF ENGAGING OUR COMMUNITY
PARTNERS.
BECAUSE INVESTIGATORS BRING
VALUABLE EXPERTISE AND KNOWLEDGE
TO OUR INVESTIGATORS.
IT'S A MAJOR WE TRY TO MATCH
MAKE AND PROVIDE GUIDANCE
LEARNING THE CONTEXT AND HISTORY
AND CULTURE AND ALL THAT IS
IMPORTANT AND WE HAVE A
STRATEGIC PROTOCOL IN PLACE FOR
THAT TO HAPPEN AND THAT'S GOING
EXTRA BEYOND THE SCOPE OF WHAT
IS REQUIRED BY US FROM THE NIH'S
PERSPECTIVE.
AND I THINK IN SOME SENSE THAT
CAN BE BAKED INTO THE PROCESS
AND POLICY THERE'S AN
EXPECTATION OF INVESTIGATORS TO
UNDERSTAND THAT CONTEXT AND
INFORMATION AND HOW TO WORK WITH
THE COMMUNITY PARTNERS.
>> INITIATIVES LIKE AN IRB.
>> I ALMOST WISH WE HAD
SOMETHING SIMILAR FOR REVIEWERS.
OFTEN TIMES IT'S MISSED.
WE ARE REQUIRED TO HAVE TRAINING
FOR IMPLICIT BIAS.
WHEN WE DISSEMINATE OUR DATA
SHARING POLICY IT'S ENOUGH TO
COMPLY WITH CURRENT NIH POLICY.
WE KNOW WHEN WE WORK WITH OUR
COMMUNITY THAT EXTRA NEEDED AND
PROVIDE A STRUCTURED APPROACH
HOW TO DISSEMINATE AND ENGAGE
OUR COMMUNITY PARTNERS IN THIS
DIALOGUE.
IT REQUIRES A LOT OF OUR BUDGET
AND BUDGET ACCORDINGLY ON OUR
GRANT.
THERE'S EXAMPLES WHERE MORE THAN
60% OF THE BUDGET IS
DISSEMINATED DIRECTLY BACK TO
COMMUNITY INVESTING IN COMMUNITY
AND IT'S TO HELP WITH THE
RESEARCH AND BUILD CAPACITY IN
THE RESEARCH FOR THE ENGAGEMENT
AND EDUCATION AND THINGS THAT
KNEAD TO HAPPEN AS PART OF THAT
PROCESS.
I DON'T THINK THAT'S WELL
RECOGNIZED IN THE RFA IN THE
INITIAL LANGUAGE AND THE REVIEW
PROCESS.
WE NEED A BIT MORE STRUCTURED
APPROACH FOR THE TYPICAL
PRACTICES WITH EXPECT TO SEE
FROM THE INVESTIGATORS THAT ARE
ENGAGING IN OUR INDIGENOUS
COMMUNITIES AND PROVIDE THAT
SPACE AND BUDGET THAT'S REQUIRED
IN THE PROCESS TO HAPPEN.
>> WE HAVE THINGS MOVING IN THE
CORRECT DIRECTION AND FUNDING
SOME OPPORTUNITIES AND THERE'S A
HUGE AMOUNT OF TIME FOR
INFRASTRUCTURE DEVELOPMENT SO
PEOPLE ARE STARTING TO GET WITH
THAT IN A GOOD WAY IN NIH AND ON
THE REVIEWERS SIDE MAKING
POLICIES IN PLACE BUT WE NEED TO
MAKE SURE EVERYBODY'S ON THE
SAME PAGE AND TIDYING UP SOME
THINGS.
WE'LL HAVE GUIDANCE DOCUMENTS
AND SUPPLEMENTAL THINGS WITH
POLICY DEVELOPED IN THE FIRST OF
THE YEAR.
>> I WANTED TO ANSWER THE
QUESTION, KAYLA I DON'T KNOW IF
YOU GOT AN ANSWER ABOUT PROGRAM
OFFICERS.
IN OUR NEW COHORT IN UNDER
REPRESENTED POPULATIONS THEY
FELT THE PROGRAM OFFICERS WERE
ILL EQUIPPED TO UNDERSTAND THE
CULTURAL PROCESS FOR THE
POPULATIONS THEY'RE OVERSEEING
AND WAS GOING TO ASK PEOPLE
AROUND THE ROOM WHETHER THEY
HAVE A CULTURAL HUMILITY PROGRAM
FOR THE TRIBES AND COMMUNITIES
YOU'RE WORKING WITH CULTURAL
HUMILITY.
>> HAS THERE BEEN TRAINING
ONLINE OR WEB BASED OR SOMETHING
LIKE THAT?
>> WE HAVE CULTURAL TRAININGS ON
OUR CAMPUS AN ONE BASED OFF A
COUPLE UNIVERSITIES AND TRIBAL
NATIONS ON IRB REGULATORY BUT
HAVEN'T BEEN SUCCESSFUL IN
PEOPLE COMPLETING THE TRAINING
BECAUSE IT'S NOT TIED TO A
REQUIREMENT BY THE UNIVERSITY.
>> IN OUR INDIVIDUAL PROGRAMS WE
REQUIRE MULTI-CULTURAL EDUCATION
AND THAT'S USUALLY WITH ISSUES
INVOLVED IN IT BUT I THINK IT'S
SOMETHING WE WOULD NEED TO
PROVIDE RESOURCES TO SCALE UP OR
CROSS-WISE ANY EDUCATIONAL
CURRICULA BECAUSE IT IS THE ONE
THING WE ASKED AS NATIVE PEOPLE
RESEARCHERS OR SCHOLARS ALL THE
TIME.
IT'S ON TOP OF EVERYTHING ELSE
WE'RE THEY'RE ASKING US TO
EDUCATE THE ENTIRE EDUCATION.
THAT HAS TO BE COMPENSATED.
THAT THE BEEN MY THING IS THERE
HAS TO BE EQUITY.
THIS IS GOING TO BE MY COMMENT
ABOUT THE IRB.
HAVING BEEN ON TWO DIFFERENT
IRBs IT'S A REALLY IMPORTANT
ISSUE.
IT'S A LARGER TOPIC BUT WITH
INDIGENOUS SOVEREIGNTY WE LOOK
TO THE TRIBES TO SEE WHO SITS ON
THE IRB BOARDS BUT PRONE TO
CORRUPTION.
WHAT YOU SEE IS THAT PARTICULAR
UNIVERSITIES UNDERSTAND THAT AND
GO AND GROOM WHEREVER THAT IRB
IS IT'S NOT A NICE TERM BUT
THERE'S BEEN CORRUPT THINGS THAT
HAVE HAPPENED AND GOTTEN RID OF
PEOPLE ESTABLISHED REVIEW EERS D
PEOPLE GETTING THE PRIMARY
FUNDING AND THOSE ARE THE ONLY
PROPOSALS THAT GET REVIEWED UP A
TIMELY MANNER.
THERE'S HOLES IN THESE SYSTEMS
VERY MUCH -- IT'S DIFFICULT AND
COMPLEX BECAUSE THESE ARE TRIBAL
ENTITIES THAT ARE GOVERNMENTAL
ORGANIZATIONS.
IT DOES GO TO THE QUESTION OF
TRAINING.
I DO THINK IT'S A VERY SPECIFIC
NEED THROUGHOUT.
>> THIS IS FOR NIH PROGRAM
OFFICERS.
>> WE DON'T HAVE ANYTHING FOR
PROGRAM OFFICERS.
WE'RE TRYING TO START WITH OUR
RESEARCHERS.
THIS IS THROUGH OUR RESEARCH
OFFICE BUT I AGREE WITH YOU
COMPLETELY.
I THINK IT WOULD BE SOMETHING
THAT ALL OF US COULD SCALE TO BE
HELPFUL FOR THAT BECAUSE EVERY
INDIGENOUS COMMUNITY AND TRIBE
OR VILLAGE HAS THEIR OWN STORY
AND NATIVE P.I. THEY THINK IT'S
MO
MONOLITHIC.
>> THIS IS IS IMPORTANT FOR THE
WORKFORCE DEVELOPMENT PIECE ON
OUR END.
MATT AND JULIE AND BE THE WE
HAVE TO WRAP UP TO CATCH THE
BUS.
IN TALKING ABOUT DATA REUSE, DB
GAP WAS A PLACE TO THINK OF
SETTING EXPECTATIONS.
I WOULD STRONGLY URGE AN
EXPANSION TO THE ENTIRE SRA
COLLECTION.
REASON I SAY THAT IS EVEN WITH
NIEHS SAMPLES TAKEN FROM
DEPOSITS THERE'S HUMAN MATERIAL
IN THERE.
YOU CAN SCRAPE 1% OF THE DNA AS
HUMAN AND IF YOU PICK CERTAIN
SITES YOU GET CERTAIN PEOPLE.
>> GOOD POINT.
>> THERE'S AN EASY TECHNICAL
TRICK TO DO IT.
>> THANK YOU.
THAT'S WHY WE HAVE YOU GUYS HERE
AS EXPERTS IN THE AREA.
THAT'S VERY HELPFUL.
>> ON THE NIH SIDE OF THESE
RESTRICTED DATA SETS AND DB GAP,
WHO OR HOW ARE TRIBES ENSURED
IT'S FOLLOWED ON THAT SIDE?
IT'S GREAT TO HAVE POLICIES BUT
HOW DO WE KNOW THEY'RE BEING
ENFORCED OR WHO IS
RESPONSIBILITY DOES THAT LIE
WITH?
>> THERE'S ISSUES AND DATA
HOUSED HERE AND EXTRAMURAL
RESEARCHERS DOING THEIR OWN
THING ACCORDING TO THE
UNIVERSITY AND MAY HAVE SHARED
THEIR DATA AND WE DON'T KNOW AND
THAT'S A MAJOR ISSUE.
WE CAN LOOK MORE CLOSELY -- WE
HAVEN'T TURNED OUR FOCUS YET TO
FOR EXAMPLE DB GAP AND WE TO THE
GENERALLY WHEN WE HAVE A POLICY
IN PLACE SOMETHING CAN'T BE
RELEASED WITHOUT PERMISSION FOR
ANYTHING CONTROLLED OR
RESTRICTED ACCESS.
>> DO YOU HAVE INFORMATION ON
DAB GAP IN TERMS OF CONTROLLED
ACCESS?
>> I CAN SHARE MY PERSPECTIVE
FROM THE NATIONAL HUMAN GENOME
INSTITUTE WHICH IS NOT THE ONLY
INSTITUTE THAT FUNDS OR
GENERATES OR STORES GENOMIC
DATA.
A LOT OF OTHER INSTITUTES DO AS
WELL BUT I SIT ON OUR INSTITUTE
HAS A GOVERNANCE COMMITTEE THAT
MEETS MONTHLY TO DISCUSS
IMPORTANT DEVELOPMENTS OUTSIDE
OUR USUAL DAY TO DAY STUFF
RELATED TO EXCEPTIONS TO DATA
SHARING, COMPLICATED REQUESTS.
THERE'S A DATA ACCESS COMMITTEE
THAT'S APPOINTED SPECIFICALLY TO
APPROVE ACCESS TO DATA AND
ENFORCE DATA USE LIMITATIONS
ASSIGNED PARTICULAR DATA SETS
INCLUDING RESTRICTIONS ON ACCESS
TO TRIBAL DATA IF THEY'RE
DEPOSITED.
I DON'T KNOW THAT WE HAVE IN
NHGRI A LOT OF DATA THROUGH THE
STUDIES THAT INCLUDE TRIBAL DATA
ACTUALLY BUT TO GIVE YOU AN OVER
ALL PICTURE HOW IT'S HANDLED
THERE'S A DATA ACCESS COMMITTEE
A DATA GOVERNANCE STRUCTURE AND
OPERATIONS COMMITTEE THAT EVERY
SEES THE DAY IT DAY FUNCTIONING
OF THESE THINGS FOR ONE
INSTITUTE.
THERE'S MULTIPLE STRUCTURES
ACROSS THE INSTITUTES WHICH
DRIVES HOME THE POINT OF SILOS
AND SEPARATE WAYS OF DOING
BUSINESS BUT RECENTLY THERE'S A
LOT OF MORE XAURG NOTES AND
EXPERIENCES ACROSS THE DIFFERENT
INSTITUTES SO THERE'S A GROUP
THAT MEETS MONTHLY TO ENSURE
BEST PRACTICES.
I KNOW WE HAVE A REPRESENTATIVE
FROM OUR INSTITUTE.
IT'S A COMPLICATED BUREAUCRACY.
>> WE'RE HEARING WE NEED CLEAR
PROCESSES IN PLACE SO THINGS
DON'T FALL THROUGH THE CRACKS IN
A BUREAUCRATIC STRUCTURE.
WE NEED NOT ONLY A POLICY BUT
CLEAR GUIDANCE AND STEPS IN
PLACE SO THINGS DON'T GET LOST
OR PEOPLE DON'T SIDE STEP THE
PROCESSES AND THAT'S GOING TO BE
CRITICAL.
>> THAT WOULD HAVE BEEN A
QUICKER WAY TO ANSWER THE
QUESTION.
>> BACK TO THE OCTOPUS.
>> THANK YOU IT LEADS TO WHAT
QUESTIONS WE NEED TOFIDE IN OUR
SOVEREIGNTY DEVELOPMENT AND I'M
APPRECIATIVE.
[OFF-MIC]
>> IN TERMS OF IF THE TRIBE
DOESN'T RETAIN THE RECORD AND
IT'S SOMETHING THAT THE
GOVERNMENT NOW HAS THAT CAN BE
FOYAED.
IF THERE ARE LAWS THAT PROHIBIT
PROTECTIONS THERE'S REASONS IT'S
EXEMPT FROM FOYA.
THERE'S ALSO WORTH NOTING STATE
LAWS ANALOGOUS AND THOSE OPERATE
DIFFERENTLY.
THOSE ARE THINGS TO NOTE.
ALSO IN THE 21st CENTURIES CURES
ACT THERE'S A PROVISION IN
SECTION ABOUT THE EXEMPTION OF
HUME ANPROTECTION AND DATA.
>> WHILE GO OVER BRIEFLY THE
SCHEDULE FOR TOMORROW.
IT'S BEEN A VERY FRUITFUL DAY
FOR US.
I HOPE YOU GET A GREAT NIGHT
REST AND NOT THINK DATA
SOVEREIGNTY BUT IF YOU HAVE
INSPIRED PLEASE TELL US.
WE NEED YOUR VOICE AND NEED TO
HEAR YOUR THOUGHTS AND QUESTIONS
LIKE I SAID ARE JUST AS
IMPORTANT EVEN IF WE DON'T KNOW
THE IMMEDIATE ANSWER BECAUSE
THAT GUIDES US TO WHAT WE SHOULD
BE DOING NEXT AND IF YOU HAVE A
PARTICULAR AREA OF EXPERTISE WE
HAVE A RANGE OF DIFFERENT TYPES
OF EXPERTISE AT THE TABLE.
WE'VE GOT OUR TRIBAL LEADERS AND
ELDERS AND BIOLOGISTS AND FOLKS
WHO DO BEHAVIORAL HEALTH AND THE
BIG RANGE.
WE LOOK FORWARD FOR YOUR
EXPERTISE TO GUIDE US AS WE
CONTINUE TO HAVE THIS UNFOLD.
ANY LAST THINGS YOU WANT TO SAY?
>> JUST A COUPLE OF REMARKS
ABOUT TOMORROW AND WHAT WE'LL BE
GETTING INTO.
TOMORROW WE'LL START WITH THE
BUS PICKING YOU UP AT 7:30 AND
PLAN TO START AT 9:00 OR A
LITTLE BIT EARLIER AND GIVE
OPENING REMARKS AND INSTRUCTIONS
AND TALK MORE IN DEPTH ABOUT THE
EXACT POLICY FRAMEWORK FOR AN
INDIGENOUS SOVEREIGNTY POLICY
AND HEARD COMMENTS TODAY AND WE
HAVE TO WRITE SOMETHING DOWN FOR
RESEARCHERS TO ABIDE BY AND
WOULD LOVE TO HAVE YOUR INPUT
AND EXPERTISE ON THAT.
THERE'S A LOT OF WIGGLE ROOM AND
NUANCE BUT WE NEED TO HAVE A
DOCUMENT.
NOT TO SAY THERE'S NOT WRIGGLE
ROOM OR OPTION TO ATTEND AND
CHANGE DOWN THE ROAD, THERE ARE,
BUT WANT TO DRAW ON ALL OF YOUR
EXPERTISE.
TOMORROW WE'LL BE FOCUSSED ON
DIRECT INPUT FROM THE POLICY
DRAWING ON THE CONFERENCES THAT
WE'VE HAD TODAY.
WE'RE GOING TO BREAK EVERYONE UP
INTO GROUPS AFTER THE INITIAL
DISCUSSION AND CHARGE YOU WITH
WORKING TOGETHER FOR ABOUT AN
HOUR WITH WRITING DOWN KEY
RECOMMENDATIONS YOU WOULD LIKE
TO GIVE TO THE NIH.
SO THINK ABOUT THOSE TONIGHT.
WE'LL SHOW YOU WHO YOUR GROUPS
ARE TO START TO KIND OF THINK
ABOUT WHO YOU WANT TO MAYBE
PARTNER UP WITH OR SIT WITH AT
DINNER.
AND WE LOOK FORWARD TO HEARING
FROM YOU TOMORROW.
WE'LL PROVIDE AN OPPORTUNITY FOR
EVERYONE TO REPORT OUT THEIR KEY
RECOMMENDATION.
WE HAVE A WRITER AND HAVE A
FINAL REPORT TO DISSEMINATE TO
EVERYONE, THE RECORDING OF
TODAY'S CONVERSATION WILL BE
ARCHIVED ON LINE.
IT TAKES ABOUT A WEAK TO GET THE
CLOSED CAPTIONING DONE BUT
ONLINE FOR LATER VIEWING IF
ANYBODY WANTS TO COME BACK OR
SHARE IT OUTSIDE, PLEASE DO.
IT'S AVAILABLE TO THE PUBLIC.
I ALSO WANT TO REMIND EVERYONE A
COMMENT MADE EARLIER TODAY THAT
WE HAVE COMPLICATED QUESTIONS.
WE ASKED ALL OF YOU TODAY.
IF YOU'RE THINKING ABOUT IT OR
SOMETHING YOU WISHED YOU'D SAID
OR COMMUNICATE FEEL FREE TO
E-MAIL ME YOUR ANSWERS.
WE'RE HAPPY TO TAKE THOSE IN
WRITING AS THE QUESTION COMES TO
MIND YOU WANT TO FURTHER
DISCUSS.
PLEASE REACH OUT TO US.
WE WANT TO CONTINUE THE
CONVERSATION.
WE'RE OPEN TO HOLDING ADDITIONAL
VIRTUAL MEETINGS WITH FOLKS WHO
WANT TO CONTINUE THE
CONVERSATION AS WE CONTINUE TO
WORK THROUGH THIS AS WELL.
OPEN TO YOUR INPUT HOW TO
PROCEED.
HERE'S YOUR GROUPS FOR TOMORROW.
TAKE A QUICK LOOK.
>> SCREEN SHOT.
>> I CAN ALSO SEND THIS OUT
TONIGHT.
ALL RIGHT.
>> GATHER ON THE STEPS TO GET A
QUICK PICTURE OR WAIT UNTIL
TOMORROW?
OKAY.
>> FEEL FREE TO LEAVE YOUR TENT
CARDS.
WE'LL USE THEM AGAIN TOMORROW.