>> WELL, WELCOME, EVERYBODY.
TO THE TRIBAL HEALTH RESEARCH
OFFICE AT THE NATIONAL
INSTITUTES OF HEALTH FOR OUR
NATIVE AMERICAN HERITAGE MONTH
EVENT.
OUR DISTINGUISHED PANEL THAT
WE'RE EXCITED TO SHARE WITH THE
WORLD TODAY.
MY NAME --
[SPEAKING INDIGENOUS LANGUAGE]
MY NAME IS KARINA WALTERS, I AM
THE DIRECTOR OF THE TRIBAL
HEALTH RESEARCH OFFICE HERE AT
THE NATIONAL INSTITUTES OF
HEALTH.
AND I WANT TO EXTEND MY DEEPEST
GRATITUDE FOR ALL OF YOU JOINING
US TODAY FOR THIS VIDEOCAST.
OUR THEME THIS MONTH AND FOR
THIS YEAR IS I AM THE DATA, THE
DATA IS ME! I AM THE DATA, THE
DATA IS ME! THIS IS REALLY
RELEVANT BECAUSE IN A LOT OF OUR
TRIBAL TRADITIONS, WE HAVE
PROVERBS AND SAYINGS LIKE I AM
THE LAND, THE LAND IS ME, AS
OPPOSED TO I OWN THE LAND, THE
LAND IS MINE.
SO WE THOUGHT A PARALLEL PROCESS
IS AT HAND HERE, AND WE WANT TO
ACKNOWLEDGE IN LIGHT OF THE
IMPORTANCE OF INDIGENOUS DATA
SOVEREIGNTY THAT WE ALSO I AM
THE DATA, THE DATA IS ME! I AM
THE DATA, THE DATA IS ME!, AND
IT'S NOT ABOUT I OWN THE DATA,
THE DATA IS MINE, AND THAT WE
WANT TO REALLY CENTER AND HONOR
INDIGENOUS RIGHTS TO TRIBAL
SOVEREIGNTY WITH RESPECT TO
DATA, AND SO WE HAVE OUR FIRST
DISTINGUISHED PANEL WHO'S GOING
TO KIND OF TACKLE SOME OF THE
ISSUES, ESPECIALLY FROM A
GENETIC AND GENOMIC PERSPECTIVE,
AND SO OUR LECTURE TODAY IS ON
CENTERING CULTURE AND INDIJNESSD
THE HONOR AND PRIVILEGE OF
SITTING WITH THESE THREE
DISTINGUISHED GUESTS AT THE
BANBERRY CENTER MOST RECENTLY
WHERE THEY SHARED SOME OF THEIR
INSIGHTS AROUND -- FROM AN
INTERNATIONAL INDIGENOUS
PERSPECTIVE AROUND THE ETHICS
AND INDIGENOUS PRINCIPLES IN
ADDRESSING INDIGENOUS GENOMIC
PRACTICES AND REFERENCE GENOMES.
SO I DON'T WANT TO STALL ANY
LONGER BUT I WANTED TO GIVE AN
OPPORTUNITY FOR EACH OF THE
SPEAKERS TO INTRODUCE
THEMSELVES.
I'M GOING TO FIRST SHARE A
LITTLE ABOUT THEIR BIO, AND THEN
WHEN THEY GO IN ORDER, THEY'RE
GOING TO HAVE AN OPPORTUNITY TO
INTRODUCE THEMSELVES MORE FULLY.
SO OUR THREE SPEAKERS TODAY,
FIRST IS -- WILL BE DR. CRYSTAL
TSOSIE, A GENETIC EPIDEMIOLOGIST
AND BIOETHICIST AND ASSISTANT
PROFESSOR IN THE SCHOOL OF LIFE
SCIENCES AT ARIZONA STATE
UNIVERSITY, ALSO ASSOCIATE
DIRECTOR OF THE BIODIVERSITY
KNOWLEDGE INTEGRATION CENTER AT
ASU AND SHE CO-FOUNDED THE DATA
BIODATA CONSORTIUM IN A 501C3
TRIBAL RESEARCH NON-PROFIT
ORGANIZATION.
HER RESEARCH AREAS ARE SPECIFIC
TO INDIGENOUS COMMUNITIES AND
PEOPLE IN HE HEALTH, SHE'S GOINO
BE FIRST, BECAUSE SHE WILL BE --
SHE WILL ACTUALLY HAVE TO LEAVE
A LITTLE EARLY FROM OUR
PRESENTATION.
FOLLOWING DR. TSOSIE WILL BE DR.
HE IS AN ASSOCIATE PROFESSOR AND
HAS TRIBAL AFFILIATIONS ARE --
I'LL SEE IF I GET THIS RIGHT,
NGATI RAKAIPAAKA, I'M GOING TO
STOP THERE BECAUSE I THINK I'M
REALLY GOING TO MESS THE REST
UP, BUT WE'RE HONORED TO HAVE
HIM HERE.
HE'S BASED IN THE UNIVERSITY OF
OTAGOS DEPARTMENT OF MATHEMATICS
AND STATISTICS AND HAS
EXPERIENCE IN APPLIED GENOMICS,
AS WELL AS ENDWAIJMENT WITH
INDIGENOUS COMMUNITIES REGARDING
GENE TECHNOLOGIES.
HE'S ALSO AN AFFILIATE OF THE
UNIVERSITY OF OTAGOS BIOETHICS
CENTER AND CURRENT MEMBER OF
MAPNED, GENE MAPPING SCIENTISTS
AND LED THE VIRTUAL INSTITUTE
FOR STATISTICAL GENETICS FROM
2008 TO 2013.
AND OUR THIRD SPEAKER IS
DR. ALEX BROWN.
HE IS A PROFESSOR OF INDIGENOUS
GENOMICS AND AUSTRALIAN NATIONAL
UNIVERSITY.
HE'S AN INTERNATIONALLY RENOWNED
LEADER, LEADING ABORIGINAL
CLINICIAN AND RESEARCHER WHO HAS
WORKED HIS ENTIRE CAREER IN
ABORIGINAL HEALTH AND IN THE
PROVISION OF PUBLIC HEALTH
SERVICES, INFECTIOUS DISEASES
AND CHRONIC DISEASE HEALTHCARE
POLICY AND A RESEARCH.
HE HAS FAMILY CONNECTIONS ON THE
FAR SOUTH COAST OF NEW SOUTH
WALES, AND HE'S FROM THE U.N.
NATION AS WELL.
SO WELCOME, DISTINGUISHED
PANELISTS.
IT'S AN HONOR AND PRIVILEGE TO
HAVE YOU HERE, AND IF YOU WANT
TO TAKE A FEW MINUTES AND
BRIEFLY INTRODUCE YOURSELVES OR
RIGHT BEFORE YOU CAN SPEAK, WE
CAN GO WITH WHAT WILL BE BEST
FOR YOU.
SO WHAT IS YOUR WISH?
>> INTRODUCE RIGHT BEFORE WE
SPEAK?
>> SOUNDS GREAT.
OKAY.
DR. TSOSIE, YOU'RE UP FIRST.
>> ONE LITTLE HOUSEKEEPING NOTE,
SORRY.
>> THANK YOU, DR. CALDWELL.
>> IF THERE ARE QUESTIONS, THERE
IS A LIVE FEEDBACK FEATURE ON
THE VIDEOCAST THAT YOU'LL BE
ABLE TO SUBMIT QUESTIONS TO, AND
WE HAVE SOMEBODY MONITORING THAT
AND WE'LL BE ABLE TO PROVIDE
THAT TO THE PANELISTS AT THE END
OF THEIR TALKS.
THANK YOU.
>> GREAT.
>> ALL RIGHT.
I ASSUME YOU CAN SEE THE PROPER
MAIN SLIDE?
THANK YOU.
[SPEAKING INDIGENOUS LANGUAGE]
THANK YOU SO MUCH FOR ATTENDING
THIS WONDERFUL PANEL, AND I'M SO
HONORED TO BE IN COMMUNITY WITH
EVERYONE HERE, PARTICULARLY ALSO
DR. ALEX BROWN AND DR. PHIL
WILCOX, WHO I'VE KNOWN AND
ADMIRED FOR MANY YEARS AND SO
GRATEFUL THEY'RE ABLE TO JOIN US
FROM ACROSS HEMISPHERES.
SO I'M GOING TO TRY TO CRAM AS
MANY SLIDES AS POSSIBLE.
I WANT TO START WITH SOME
DISCLOSURE STATEMENTS, ONE, THAT
I'M LEADING THE DEMO ANALYSIS OF
GENOMICS DATA GENERATED FROM
AMERICAN INDIANS AND ALASKA
NATIVES FROM THE ALL-OF-US
RESEARCH PROGRAM.
THIS IS NOT A RESPONSIBILITY I
TAKE LIGHTLY.
IT IS WITH A LOT OF
INTROSPECTION, ESPECIALLY
CONSIDERING I WAS ON AND STILL
AM KIND OF CRITICAL OF THE
PROGRAM, BUT ALSO I THINK IT'S
IMPORTANT THAT WE HAVE
INDIGENOUS GENOMICISTS LEADING
THESE TYPES OF EFFORTS SO THAT
WE CAN PROPERLY FRAME THE
INTERPRETATION OF THIS DATA,
ESPECIALLY SINCE WE ACKNOWLEDGE
AND REALIZE THAT GENOMICS DATA
IS, HAS BEEN AND WILL BE
COLLECTED FROM INDIGENOUS
PEOPLES WITHIN -- SOMETIMES
WITHOUT COMMUNITY CONSENT AND
SOMETIMES ONLY FROM A WESTERN
INDIVIDUAL SENSE OF YO AUTONOMYD
AGENCY.
AND ALSO COFOUNDED THE NATIVE
BIODATA CONSORTIUM WHICH I'M SO
PROUD TO TALK ABOUT A LITTLE BIT
MORE.
I'M ALSO REALLY HAPPY TO STATE
THAT IN MY YEAR AND A HALF AS A
FACULTY MEMBER AT ARIZONA STATE
UNIVERSITY, WHICH I'M JUST NOW
FORTUNATE TO LEAD A GROUP OF 12
MEMBERS FOR THE LAB FOR
INDIGENOUS EQUITY AND JUSTICE
AND 75% OF WHOM ARE INDIGENOUS
AND THIS ARTICLE JUST LANDED
YESTERDAY OR THE DAY BEFORE ON
ASU NEWS, BASICALLY STATING THAT
WE NOW HAVE THREE INDIGENOUS
FACULTY MEMBERS, TWO OF WHO ARE
GOING TO BE JOINING AS FACULTY
SOON, SO THE ASU CONSTITUTES THE
LARGEST POTENTIALLY
R01 INSTITUTION WITH THE AMOUNT
OF INDIGENOUS GENOMICISTS AND
THAT'S IMPORTANT WHEN WE THINK
ABOUT POLICY AND IMPACT FOR
GENOMICS RESEARCH FOR HUMANS AND
NON-HUMANS.
MY AREAS OF RESEARCH RELATE TO
EPIDEMIOLOGY, SPECIFICALLY
LOOKING AT VARIATIONS -- GENE
VARIATION CONTRIBUTING TO HEALTH
DISPARITIES, BUT ALSO THINKING
ABOUT COMMUNITY ENGAGEMENT TO
BUILD TRUST AND ALSO DATA TRUST
IN TERMS OF INFRASTRUCTURE, AND
ALSO THINKING ABOUT BUILDING
RESEARCH CAPACITY AND TRAINING
WITH MACHINE LEARNING
TECHNOLOGIES AND ALSO DATA --
INDIGENOUS LAB BIOREPOSITORIES
TO REALLY THINK ABOUT BUILDING
DATA CENTERED BIOECONOMIES THAT
ARE INDIGENOUS OWNED AND
ORIENTED.
I WANTED TO REMIND THAT EVEN
WITH THE RECENTLY EXPANDED PANEL
OF 74 MEDICALLY ACTUAL GENES BY
ACMG, ONLY A FEW, A HANDFUL
ACTUALLY HAVE INFORMATION
SPECIFIC TO INDIGENOUS PEOPLE SO
OF COURSE A QUESTION IS, HOW
DOES THIS AFFECT CLINICAL
UTILITY AND EQUITY?
AND DESPITE OVER NOW 20 YEARS OF
EFFORTS TO TRY TO INCREASE THE
NUMBERS OF INDIGENOUS
PARTICIPANTS IN RESEARCH
STUDIES, INDIGENOUS PEOPLE STILL
CONSTITUTE LESS THAN 1% OF
RESEARCH PARTICIPANTS IN
GENOMICS RESEARCH.
I WANT TO REMIND YOU THIS IS NOT
LIKE AN AIM TO GET MORE
INDIGENOUS PEOPLES INVOLVED IN
GENETICS RESEARCH, BECAUSE THAT
ALONE IS A VERY COERCIVE AND
UNIDIRECTIONAL RESEARCH AIM.
IT'S NOT A MATTER OF SELLING
ENGAGEMENT OR RECRUITMENT AS A
MEANS OF JUST IMPROVING NUMBERS
OF INDIGENOUS PEOPLES IN
GENOMICS RESEARCH.
WE ALSO HAVE TO THINK ABOUT
OVERCOMING MISTRUST,
PRIORITIZING BENEFIT SHARING AND
ALSO EMPOWERING DATA
DECISION-MAKING EQUITY.
I ALSO WANT TO REMIND ABOUT
SELLING THE NEXT INNOVATIONS IN
PRECISION MEDICINE AS A BENEFIT
DOES NOT WORK FOR INDIGENOUS
COMMUNITIES WHO DO NOT HAVE
EQUITABLE ACCESS TO PREVENTIVE
HEALTH.
WE HAVE A LOT OF STRUCTURAL
INEQUITIES RELATED TO FEDERALLY
SPONSORED HEALTHCARE FOR
INDIGENOUS PEOPLES.
WE HAVE TIME AND TIME AGAIN A
FAILURE AND JUST ALSO GROSS
INADEQUATE FUNDING FOR OUR
TRIBAL HEALTHCARE FACILITIES.
THIS WAS EVEN PERSISTENT BEFORE
THE PANDEMIC AND HAS PROBABLY
EVEN BEEN EXACERBATED SINCE THE
PANDEMIC.
SO IN ARE REASONS WHY INDIGENOUS
PEOPLES DO NOT PARTICIPATE IN
GENOMICS RESEARCH AND THESE ARE
STRUCTURAL AND EMBEDDED RELATED
AND ROOTED IN CONFLICT ISSUES
RELATED TO CULTURAL AND
POLITICAL FACTORS RELATED TO
HEALTH, BUT ALSO THERE ARE
EXISTENT POWER IMBALANCES, SOME
RELATED TO RESEARCH HARMS AND
MISCONDUCTS, AND THOSE ALSO HAVE
TO BE SHIFTED, A POWER SHIFT HAS
TO OCCUR BEFORE WE JUST TELL
INDIGENOUS PEOPLES THAT THEY'RE
GOING TO MISS OUT ON THE
BENEFITS OF PRECISION HEALTH IF
THEY DO NOT ENGAGE.
BECAUSE THAT ALONE, THAT
MESSAGING ALONE COULD BE
COERCIVE AND ACTUALLY A FORM OF
VICTIM-BLAMING IF WE'RE NOT
CAREFUL.
I ALSO WANT TO BRING THIS QUOTE,
IT'S ACTUALLY FROM A REAL
ESTEEMED COLLEAGUE OF MINE, A
MENTOR, DINE, WHO STATED FAIRLY
RECENTLY THAT GENETICS MEDICINE
WILL NEVER BE A BENEFIT OF TO
INDIGENOUS PEOPLE.
THIS IS FROM THE FRAMING OF
ACTUALLY BEING A RURAL MEDICAL
PRACTITIONER IN THE AMERICAN
SOUTHWEST.
SO SHE'S SEEN THAT IN PEOPLE
LIVING IN INDIAN COUNTRY, OUR
HEALTHCARE CLINICS ARE
CHRONICALLY UNDERFUNDED, WE HAVE
OUTDATED EQUIPMENT, WE HAVE
LIMITED ACCESS TO PREVENTIVE
HEALTHCARE.
NONETHELESS, ACCESS TO MORE
ADVANCED FORMS OF PRECISION
MEDICINE AND HEALTHCARE AND ALL
THESE OTHER STRUCTURAL BARRIERS
RELATED TO HEALTH.
AND THIS IS AGAIN EXACERBATED
DURING COVID, WHERE IT WAS LIKE
THE SURGE OF RESEARCHERS WHO
WANTED TO RESEARCH COVID WAS
MORE -- HAD HIGHER INCIDENCE
RATES IN OUR COMMUNITIES, EVEN
THOUGH THOSE DISPARITIES WERE
NOT DUE TO INHERENT BIOLOGICAL
DIFFERENCES BUT DUE TO THE
STRUCTURAL BARRIERS.
AND DURING THE PANDEMIC, A LOT
OF TRIBAL RESEARCH REVIEW BOARDS
WERE CONSIDERED NON-ESSENTIAL
COMPARED TO THE HEALTH OF TRIBAL
MEMBERS, AND SO MANY OF THE
RESEARCH OVERVIEW PROCESSES AND
IN-DEPTH LOOK TO INPROVE
PROTOCOLED RELATED TO RESEARCH
WERE EITHER HALTED OR FAST
TRACKED.
THIS ALSO HIGHLIGHTS THE
IMPORTANCE OF HAVING INDIGENOUS
LED STRUCTURES.
WHAT HAPPENED IS DURING THE
PANDEMIC, INDIGENOUS NATIONS
TRADED THE SHORT TERM NEED FOR
COVID TESTING SURVEILLANCE AND
VACCINATION WITH THE LONG TERM
UNRESTRICTED ACCESS TO
INDIGENOUS PEOPLES, GENOMES AND
DATA.
ABSENT LOCAL TESTING CENTERS,
TRIBAL NATIONS WERE RELIANT ON
NON-TRAVEL RESOURCES THAT ALSO
LED TO UNPRECEDENTED COLLECTION
OF TRIBAL HEALTH DATA OUTSIDE
TRIBAL OVERSIGHT.
IT ALSO LED TO ESPECIALLY AT THE
START OF LIKE -- OR IN
CONSIDERING BRINGING OUT A
ROLLOUT OF A VACCINE, THE U.S.
GOVERNMENT INVESTED THIS ALL-IN
COMMERCIAL INVESTMENT OF
OPERATION WARP SPEED THAT
BROUGHT CONCERNS THAT VACCINE
COMPANIES WERE RUSHING TRIBAL
APPROVAL PROCEDURES OR EVEN
RECRUITING TRIBAL CITIZENS
RESIDING OUTSIDE OF THEIR TRIBAL
JURISDICTIONS, SO JUST TRYING TO
PERHAPS SURPASS COMMUNITY
ENGAGEMENT PROCESSES OR END UP
REVIEW BY TRIBES JUST TO GET
VACCINES TO COMMUNITIES.
AND ALSO WHAT ENDED UP HAPPENING
IS, DURING THIS ERA, SOME PEOPLE
WHO HAD PARTNERED WITH SOME OF
THE VACCINE COMPANIES STATED
THAT THEY WERE ABIDING BY TRIBAL
DATA SOVEREIGNTY AND RESPECTED
TRIBAL DATA SOVEREIGNTY BY
PUTTING A MOBILE VAN TO RECRUIT
RESEARCH PARTICIPANTS OUTSIDE OF
THE BORDERS OF TRIBAL NATIONS.
SO THIS IS NOT REALLY RESPECT,
IT'S ACTUALLY DISRESPECTFUL, BUT
IT'S INTERESTING, LIKE THIS
DYNAMIC OF REALLY JUST
EXACERBATING OR FALLING INTO A
LOOPHOLE OF REGULATION.
AND IN TERMS OF LIKE THE
CLINICAL SPACE, MANY INDIGENOUS
PEOPLES DON'T -- YOU KNOW, THEY
HAVE A CATCH 22.
THEY MAY DECIDE NOT TO
CONTRIBUTE DATA DNA FOR CLINICAL
TESTING BECAUSE THEY CAN'T
AFFORD IT OR THEY'RE CONCERNED
ABOUT DATA USAGE, OR IF THEY DO
AGREE TO CONTRIBUTE THEIR DNA
FOR TESTING, THEY ALSO BROADLY
IMPLICITLY BROADLY CONSENT TO
ANY SECONDARY DATA USAGE AND
OWNERSHIP BY TESTING COMPANIES,
AND YET STILL DERIVE LITTLE TO
NO CLINICAL UTILITY.
THIS ALSO MEANS THAT COMMERCIAL
GENETIC COMPANIES CAN CO-AUTHOR
OR CLAIM OWNERSHIP OF PEOPLE'S
GENETIC DATA.
WHAT HAPPENS WHEN THIS IS
DEPOSITED INTO PUBLIC DATABASES
LIKE CLINVAR, WHERE THERE'S NO
OPT-OUT PROCESSES.
THERE'S ALSO A CONCERN ABOUT
URBAN TERTIARY CARE CENTERS,
ESPECIALLY CANCER CARE CENTERS,
THAT ALSO BIOBANK SAMPLES AND
DATA WITHOUT EXPLICIT TRIBAL
NATION APPROVAL, WHICH ALSO
RAISES CONCERNS ABOUT THE
CONFLATION OF RESEARCH CONSENT
VERSUS CONSENT TO CARE FOR
MINORITIZED COMMUNITIES.
AND ALSO WE'VE HAD MANY DRUG
COMPANIES TELL US THAT IT'S NOT
PROFIT-GENERATIVE TO USE
INDIGENOUS PEOPLE'S DNA TO
SPECIFICALLY CREATE THERAPEUTICS
THAT IMPACT INDIGENOUS PEOPLE
BECAUSE WE ARE TOO SMALL OF A
PROFIT SHARE FOR THE MARKET TO
SUPPORT THOSE TYPES OF
INNOVATIONS.
SO RECRUITING MORE PEOPLE INTO
DATASETS IS NOT GOING TO SOLVE
THIS PROBLEM, NEITHER IS
DROPPING GENETIC TESTS IN OUR
COMMUNITIES.
SO WHERE DOES THE DATA COME
FROM, FROM EXCLUSIVELY
INDIGENOUS POPULATIONS?
IT ACTUALLY COMES FROM
INDIGENOUS GROUPS OUTSIDE THE
U.S.
THIS IS FROM THE HUMAN GENOME
DIVERSITY PROJECT.
IF YOU NOTICE IN THE SORT OF
PINKISH COLOR, MOST OF THESE
GROUPS ARE IN MEXICO AND FURTHER
SOUTH, POTENTIALLY IN COUNTRIES
THAT DON'T HAVE EQUAL
ACKNOWLEDGMENT OF INDIGENOUS
PEOPLES' RIGHTS WHICH MEANS THAT
THEY WOULD POSSIBLY BE EXPLOITED
OR DATA EXTRACTED WITHOUT
PERMISSION.
THESE ARE THE SAME DATASETS THAT
ARE USED BY GENETIC COMPANIES TO
CREATE TESTS THAT ARE MARKETED,
BUT SOME OF THESE ONLY HAVE AS
FEW AS 30 INDIVIDUALS WHERE
OTHER REFERENCE POPULATIONS HAVE
MORE THAN 10,000, AND YES
BECAUSE THESE ARE THE ONLY ONES
THAT ARE PUBLICLY AVAILABLE,
IT'S USED FOR GENETIC ANCESTRY
FOR ALL U.S. INDIGENOUS PEOPLES.
SO IF WE THINK ABOUT LIKE A
STANDARD PCA PLOT, PRINCIPAL
COMPONENTS ANALYSES, MOST OF
THESE WORKFLOWS ARE
INAPPROPRIATE FOR INDIGENOUS
PEOPLES, BECAUSE IT DEFAULTS TO
THIS PAN INDIGENOUS NOTION OF
WHO IS NOT OR IS INDIGENOUS BY
BLOOD AND POSSIBLY CATEGORIZING
INDIGENOUS PEOPLES AS BEING
GENETICALLY HOMOGENEOUS
IDENTITY.
THESE TYPES OF SAMPLING
APPROACHES ARE NOT APPROPRIATE
FOR SMALL INDIGENOUS GROUPS
BECAUSE YOU HAVE THESE
ASSUMPTIONS RELATED TO
HARDY-WEINBERG EQUILIBRIUM.
IF WE'RE TRYING TO REMOVE
OURSELVES AWAY FROM THIS EUGENIC
PAST, THIS IS NOT THE WAY TO DO
IT, BUT IT ALSO IGNORES LIVED
EXPERIENCES RELATED TO
STRUCTURAL DETERMINANTS OF
HEALTH AND ALSO RELATES TO THE
POOR MODELING OF PHENOTYPES THAT
ARE POORLY REFLECTED IN EHR
RECORDS.
THERE HAVE BEEN MANY EFFORTS TO
CREATE INDIGENOUS-SPECIFIC
REFERENCE GENOMES.
THESE ARE SOME OF THEM, BUT
THEY'RE ALL ALSO WEIRDLY FALLING
INTO THESE TRAPS OF CREATING A
GENOMIC NARRATIVE OF ALL
INDIGENOUS PEOPLES BEING SIMILAR
AS PART OF THIS GENTLEMAN
NETICALLY HOMOGENEOUS HOLE, AND
SOME OF THEM ARE ALSO INCREDIBLY
COLONIAL HOW THEY NAMED
INDIGENOUS GROUPS BY THEIR
COLONIAL NAME AND NOT PROPERLY
ATTRIBUTING TO THEIR CULTURAL
NAME.
ALEX BROWN IS GOING TO SPEAK
MORE ABOUT EXACTLY WHAT A
REFERENCE GENOME IS, AND IT'S
IMPORTANT TO UTILITY, BUT THERE
ARE EMERGING PROJECTS ABOUT
CREATING A HUMAN PAN GENOME
REFERENCE CONSORTIUM, AND THE
CHALLENGE HERE IS TO ENSURE THAT
THIS PROJECT JUST DOESN'T
REPLICATE THE SAME PROBLEMS OF
THE PAST AND TRYING TO AVOID
EXPLOITATION.
DR. KEOLU FOX IS ANOTHER GENOMIC
SCIENTIST THAT SAYS WE CREATE AS
MANY LABELS AS WE WANT BUT AT
THE END OF THE DAY, WHO IS DOING
THE LABELING?
RESEARCHERS SHOULD DEFER TO
COMMUNITIES INVOLVING THEM AND
CONDUCTING SCIENCE THAT WOULD
TRULY ADDRESS DISPARITY.
SO THERE'S A HUGE QUESTION ABOUT
POPULATION DESCRIPTORS AND ALSO
WHETHER OR NOT WE SHOULD EVEN
USE THEM IN RESEARCH, BUT SIMPLY
REMOVING LABELS DOES NOT REMOVE
THE ABILITY TO REIDENTIFY OR
STIGMATIZE DATA FROM INDIGENOUS
PEOPLES.
YOU CAN REALLY DO CLUSTER
ANALYSES SO THAT CAN ALSO
CONTRIBUTE TO SOME OF THESE
PROBLEMATIC GENOMIC STATEMENTS
THAT WE'RE TRYING TO MOVE AWAY
FROM.
THIS GETS ME TO A DEFINITION FOR
INDIGENOUS GENOMIC DATA
SOVEREIGNTY WHICH IS THE RIGHT
OF INL DIJ NUSS NATIONS AND
PEOPLE TO EXERCISE AUTONOMY
RELATE THE TO THEIR I DYNAMIC D.
WE STARTED WITH THE SAME PREMISE
OF RETURNING DATA BACK TO
COMMUNITIES AND LETTING THEM
DETERMINE WHAT SHOULD OR SHOULD
NOT BE DONE WITH THEIR DATA, AND
THIS INVOLVES A LOT OF COMMUNITY
DIRECTED GOVERNANCE AND THIS
ALSO INVOLVES QUITE A BIT OF
POLICY AND LEGAL INFRASTRUCTURES
THAT NEEDED TO BE CREATED AT THE
TRIBAL RESOLUTION LEVEL IN ORDER
TO BE ABLE TO BE PROTECTIVE OF
THE TYPE OF RESEARCH THAT MAY BE
INVOLVING INDIGENOUS PEOPLES.
SO IT'S NOT JUST A MATTER OF
COLLECTING DATA.
IT'S ALSO A MATTER OF CREATING
THESE POLICY AND LEGAL
INFRASTRUCTURES TO EVEN BE ABLE
TO CONSIDER THE TYPES OF
RESEARCH QUESTIONS THAT MIGHT
ORIGINATE FROM COMMUNITY
MEMBERS.
THIS ALSO MEANS BUILDING DATA
INFRASTRUCTURES THAT ADVANCE ON
THESE -- LIKE WHO GETS ACCESS TO
DATA, ADVANCES HOW WE REGULATE
AND CONDUCT CONSENT AS ROOTED IN
MACHINE LEARNING PROCESSES.
MY OWN LAB, WE ARE DOING OUR OWN
URBAN INDIGENOUS COHORT WITH
STARTING FIRST FROM DEMOCRATIC
DELIBERATIONS OR COMMUNITY
ENGAGED APPROACH TO REALLY
SPECIFICALLY LOOK AT WHAT ARE
THE FACTORS THAT WERE MISSING
WHEN WE ONLY FOCUS ON GENOMICS
DATA OR ELECTRONIC HEALTH RECORD
DATA, AND IT INVOLVES THE
CREATION OF CULTURALLY VALIDATED
SURVEYS TO GET AT THOSE THINGS
THAT ARE MISSING WHEN WE ONLY
FOCUS ON THOSE TWO DATA TYPES.
WHEN WE'RE TALKING ABOUT
BUILDING INDIGENOUS DATA
SOVEREIGNTY, WE'RE TALKING ABOUT
POLICY LONG GOVERNANCE BUT ALSO
NEED TO THINK ABOUT DIGITAL
SOVEREIGNTIES AND ACTUALLY
BUILDING DATA INFRASTRUCTURE,
DATA REPOSITORIES, DATA TOOLS
AND POTENTIALLY CLOUD SOLUTIONS
THAT WORK FOR INDIGENOUS
PEOPLES.
THIS ALSO IS AN OPPORTUNITY FOR
INDIGENOUS PEOPLES TO EXERCISE
THAT CONTROL OVER GENOMIC DAY DA
TO MAKE IT BENEFICIAL FOR THEM
BUT IT ALSO INCLUDES CHANGES IN
THE STRUCTURAL SYSTEMS.
SO RECRUITMENT IS NOT
ENGAGEMENT.
WE NEED TO IMPLEMENT RESPONSIBLE
DATA ACCESS AND DATA SHARING
PRACTICES, WE NEED TO RE-THINK
INFORMED CONSENT THAT'S
CULTURALLY CONSISTENT, AND ALSO
RECONSIDER WHO'S ETHICS ARE
BEING PRIORITIZED AND ENSURE
INNOVATIONS ARE ALIGNED WITH
EQUITY.
I REALLY WANT TO THANK ALL THE
INDIVIDUALS THAT JOINED US FOR
THIS RECENT MEETING AT THE
BANBURY INSTITUTE IN COLDSPRING
HARBOR.
IT WAS A MONUMENTAL EVENT IF YOU
CONSIDER THAT THE HISTORY OF
COLDSPRING HARBOR AND ITS ROLE
IN SORT OF PERPETUATING THIS
EUGENICS HISTORY THAT WAS
PERVASIVE IN THE FIELD OF
GENOMICS RESEARCH, TO HAVE AN
EVENT THAT IS INDIGENOUS LED AND
INDIGENOUS -- HUGE NUMBER OF
SCIENTISTS AND SCHOLARS AND
MEDICAL PRACTITIONERS AND OTHERS
COMING TOGETHER TO TALK ABOUT
THIS ISSUE, AND TALK ABOUT
POTENTIAL WAYS FORWARD IF THERE
ARE ANY.
THIS IS LIKE AN AMAZING
BEGINNING OF MULTIPLE
CONVERSATIONS ROW LA RELATED TO
HISTORICAL, ETHICAL, TECHNICAL
QUESTIONS AND INVOLVING BOTH
RECOGNIZED AND UNRECOGNIZED
SOVEREIGN NATIONS.
AND AT THE CENTER OF THIS, WE
FOUND THAT WE NEED TO THINK
ABOUT CULTURAL PROTECTION AND
POLICY SAFEGUARDS.
SORRY, THAT WAS REALLY LONG, BUT
THERE WAS A LOT.
>> YOU ENDED RIGHT ON TIME.
IT WAS FANTASTIC.
THANK YOU SO MUCH, DR. TSOSIE.
WE ARE GOING TO HOLD OUR
QUESTIONS, WE ARE ON VIDEOCAST,
WE WILL HAVE QUESTIONS AFTER ALL
THREE PRESENTERS SPEAK.
SO THANK YOU FOR THAT GREAT
PRESENTATION, AND NOW I'M
THINKING ABOUT INDIGENOUS
GENOMIC DATA SOVEREIGNTY AS
WELL.
SO VERY EXCITING.
OUR NEXT SPEAKER IS DR. WILCOX,
AND THE FLOOR IS YOURS.
>> I'M JUST CHECKING TO SEE WHAT
YOU CAN SEE, MAKE SURE THAT MY
SCREEN IS VIEWABLE?
>> IT'S VIEWABLE.
YEP.
THANK YOU.
>> GREAT.
THANKS VERY MUCH.
WELL,
[SPEAKING INDIGENOUS LANGUAGE]
THAT'S JUST A QUICK GREETING TO
YOU ALL, FIRST OF ALL TO ALL OF
THE INDIGENOUS PEOPLES OF WHAT
WE CALL THE TURTLE ISLAND, WE'RE
REFERRING TO MAINLAND NORTH
AMERICA, AS WELL AS EVERYBODY
WHO'S ATTENDING TODAY.
AND OF COURSE I JUST WANTED TO
ACKNOWLEDGE NATIVE AMERICAN
HERITAGE MONTH AND THE
CELEBRATIONS AND THANK KARINA
AND HER TEAM FOR INVITING ME
ALONG TO TALK TO YOU TODAY ABOUT
EXPERIENCES IN NEW ZEALAND.
SO THIS IS PEPEHA, A TRADITIONAL
FORM OF INTRODUCTION AND THEN
I'LL DRAW AN ANALOGY TO GENETICS
CONCEPTS USING THIS PEPEHA, AN
EXAMPLE OF A PEPEHA.
SO HERE WE GO.
[SPEAKING INDIGENOUS LANGUAGE]
SO WHAT WE'RE LOOKING AT HERE,
THE FIRST PART IS THE
ENVIRONMENT OR THE PLACE THAT I
COME FROM.
AND THE SECOND PART OF THAT IS
MY TRIBAL AFFILIATIONS.
AND OUR TRIBES ARE NAMED AFTER
ANCESTORS, SO WE ARE DE16 DEBTSS
OF
WE ARE DESCENDANTS OF THESE
PEOPLE.
SO WHAT YOU'RE LOOKING AT THERE
IS SOMETHING THAT DESCRIBES THE
ENVIRONMENT I COME FROM AS WELL
AS MY GENEALOGY.
SO FOR THOSE OF YOU WHO HAVE A
BACKGROUND IN GENETICS, THAT'S
THE VERY FIRST EQUATION WE WILL
SEE IN QUANTITATIVE GENETICS
WITH A PHENOTYPE, SOME OF THE
GENOTYPE AND THE ENVIRONMENT.
SO PEPEHA IS THE CONCEPTUAL
EQUIVALENT OF THIS.
THE ONLY DIFFERENCE REALLY IS
THE TIMING OF WHEN THOSE
CONCEPTS OR EQUIVALENTS WERE
ACTUALLY PUT INTO PRACTICE.
THIS PARTICULAR FORM OF PEPEHA,
I'M NOT EXACTLY SURE WHEN IT
FIRST AROSE AMONGST OUR
ANCESTORS MANY HUNDREDS TO
THOUSANDS OF YEARS AGO, BUT I
CAN ASSURE YOU THAT IT'S WELL
AND TRULY SUBSTANTIVELY BEFORE
THE LATE VICTORIAN ERA, BIOMET
CAL GENETICISTS WHO BEGAN
WORKING IN QUANTITATIVE GENETIC
THEORY VERY, VERY EARLY IN THE
PACE FROM A MODERN GENETICS
SCIENCE PERSPECTIVE.
PEOPLE HAD SIMILAR CONCEPTS BUT
WELL BEFORE.
THESE CONCEPTS WERE FIRST AR
ARTICULATED IN THE WESTERN
SCIENCE CONTEXT, SO JUST A
LITTLE BIT MORE ABOUT MYSELF.
WE'RE AT THE INTERFACE OF GENE
TECHNOLOGIES AND MAORI PEOPLES
FOR OVER 20 YEARS NOW, INCLUDING
WORKING FOR MY OWN TRIBE, AS
WELL AS A WHOLE BUNCH OF OTHER
ACTIVITIES THAT I'LL GO INTO IN
TERMS OF ADVISORY AS WELL AS
EDUCATION, ROLES, DEPARTMENT
ROLES THAT ARE MAORI-SPECIFIC.
INCLUDING AT THE UNIVERSITY OF
OTAGO WHERE I WORK, I HAVE A
ROLE THAT BRINGS IN THESE
CONCEPTS OF HEREDITARY -- IN
GENETICS PAPERS AND WE ASSIST
THEM, TO WORK WITH MAORI
COMMUNITIES BASED ON SOME OF THE
FRAME WORKS THAT I'LL TALK ABOUT
TODAY.
SOME OTHER THINGS THAT I WORK
ON, I'LL TALK ABOUT -- AS WELL
AS A GENETICS PLATFORM THAT'S
GOVERNED BY -- THERE'S
INDIGENOUS GOVERNMENTS BUILT
INTO THAT PLATFORM WHERE
ANALYSES OF DATA ARE TRANSPARENT
TO COMMUNITY MEMBERS WHO HAVE
GOVERNMENTS' RIGHTS.
AND ALSO INVOLVED FOR MOLECULAR
DISCOVERY WHERE I'M DEPUTY
DIRECTOR, AND THAT HAS A
SUBSTANTIVE AMOUNT OF WORK NOW
WORKING ON DISEASES THAT IMPACT
OUR PEOPLE IN TERMS OF
PARTICULARLY METABOLIC CANCER
AND INFECTIOUS CONDITIONS.
SO WHAT I'LL TALK ABOUT, I'LL
GIVE SOME BACKGROUND INTO THE
MAORI WORLD, I'LL TALK ABOUT
THESE THINGS, TIKANGA MAORI,
WHAT THOSE THINGS ARE, HOW
THEY'RE RELEVANT AND HOW WE
APPLY THEM AND STUDY DESIGN AND
TO DEVELOP YEE KNOW MIBG
RESOURCES.
AND THEN I TALKED ABOUT -- OR AN
EXAMPLE OF THAT WHEN I GAVE MY
PAPER HERE, HOW DOES IT INFORM
GENETIC CO-DEVELOPMENT, AND
PARTICULARLY HOW WE'RE USING
THAT TO IMPROVE OUR ABILITY TO
ESTIMATE DISEASE RISK.
AND I'LL FINISH OFF ON THAT
POINT.
SO A LITTLE BIT OF BACKGROUND.
MAORI FIRST PEAKED WHERE THE
FIRST HUMANS TO ARRIVE AROUND
800 YEARS AGO, AND I'LL SAY IT
WAS THE LAST SIGNIFICANT LAND
MASS TO BE OCCUPIED BY HOMO SAIP
YENS.
MOST PEOPLE WERE OUR ANCESTORS
WHO CAME FROM POLYNESIA, AND
THOSE IN TURN IT MY GREATED OUT
MIGRATED TOPLACES TO EASTERN POA
WHERE THEY RADIATED AROUND THE
PACIFIC OCEAN AND EVEN INTO THE
AMERICAS.
THEY BROUGHT WITH THEM AN
EASTERN POLYNESIAN CULTURE AND
LANGUAGE THAT WENT THROUGH A
PERIOD OF EVOLUTION IN THIS
COUNTRY.
SUBSEQUENT TO THOSE ORIGINAL
RIVALS, AND IT HAS EVOLVED INTO
WHAT WE NOW REFER TO AS THE
CLASSIC MAORI MULTICULTURE AND
FAST FORWARD TO THE LATE
1700s, EARLY 1800s WITH THE
ARRIVAL OF PEOPLE OF EUROPEAN
DECENT, AND THAT CREATED
TENSIONS, WHEN THEY ARRIVED,
THEY BROUGHT FIREARMS AND NEW
METHODS TO BE ABLE TO KILL EACH
OTHER, AND AS A RESULT OF THAT,
WE HAD THE SIGNING OF THE TREATY
OF WAITANGI BACK IN 1840 BETWEEN
TRIBAL LEADERS AND
REPRESENTATIVES OF THE BRITISH
GOVERNMENT AS IT WAS BACK THEN.
THAT OPENED THE DOOR TO A LARGE
INFLUX, AND I HAVEN'T FINISHED
THESE WORDS HERE, BUT LARGE
INFLUX OF COLONISTS FROM
BRITAIN.
IN THE 1860s, THEY
UNDERTOOK -- THE GOVERNMENT --
THE COLONIAL GOVERNMENT
UNDERTOOK A SUSTAINED PERIOD OF
LAND CON CONFISCATION, ALONG WH
THE DISEASES THAT THEY BROUGHT,
ALONG WITH THE FIREARMS, ET
CETERA, ET CETERA, TO SPICE
PEOPLE FROM THEIR LANDS, AND
THIS CAUSED QUITE A SUBSTANTIVE
DISRUPTION TO THE MAORI WORLD.
AND TODAY, WE HAVE ALMOST A
MILLION PEOPLE OF MAORI DESCENT
IN THIS COUNTRY, IT HAD
BOTTLENECKED TO AROUND 40,
50,000 PEOPLE OF THE EARLY
1900s.
THE POPULATION HAS GROWN
SUBSTANTIALLY AND IS CONTINUING
TO GROW, MOST OF THOSE PEOPLE
ARE IDENTIFIED CULTURALLY AS
BEING MAORI.
THEN IN THE LAST 25 TO 30 YEARS,
WE'VE UNDERGONE A PERIOD OF
QUITE STRANG PARALLELLED WITH
TRIBAL BASED SET EMMENTS,
LITIGATION ARISING FROM THE
HISTORIC BREECHES OF THE
TERRITORIY OF TAITANGI, STILL
GIVING RISE TO TEMPORARY
GRIEVANCES, BUT AT LEAST THEY'RE
TRYING TO ADDRESS SOME OF THOSE
HISTORIC GRIEVANCES.
SO WE'VE SEEN AN INCREASED
PRESENCE OF MAORI IN THEIR
PRIMARY -- WE HAVE SOMETHING
LIKE THE MAORI ECONOMY IS
SOMETHING LIKE $70 BILLION WORTH
OF ASSETS BUT ABOUT A THIRD OF
THAT IS TIED UP IN PRIMARY
SECTOR, AND OF THAT $70 BILLION
OF ASSETS THAT GENERATE
SOMETHING ABOUT $10 BILLION PER
ANUM TO GROSS DOMESTIC PRODUCT.
HEALTH STATUS IS GENERALLY POOR,
NOT UNUSUAL.
SADLY, THERE'S A LOT OF
PARALLELS BETWEEN HEALTH STATUS
OF NATIVE PEOPLES AND THE UNITED
STATES AND TERRITORIES.
AND I'LL ALSO POINT OUT THAT WE
ARE CLOSELY RELATED TO
HAWAIIANS, WHO ARE ALSO EASTERN
POLYNESIANS IN THE HAWAIIAN
ISLANDS AND WERE POPULATED BY
EASTERN POLYNESIAN NAVIGATORS
AROUND ABOUT THE SAME TIME.
SO WE SHARE A LOT IN TERMS OF
ANCESTRY, AND OUR SOCIAL AND
BIOLOGICAL DETERMINANTS OF
HEALTH.
SO WE DO HAVE HERITABLE
CONDITIONS.
YOU PROBABLY READ THE WORDS
THERE, CARDIOVASCULAR DISEASES,
TYPE 2 DIABETES, AS WELL AS SOME
MENDELIAN CONDITIONS WHICH TEND
TO BE MORE PREVALENT IN THOSE
CONDITIONS WITHIN FAMILIES.
OVERREPRESENTED AND VIRTUALLY
ONE OF THE NEGATIVE HEALTH
STATISTICS, AND I'VE ALSO
MENTIONED THAT WE DO HAVE
MENDELIAN CONDITIONS.
ELSEWHERE IS THIS UNIQUE GENETIC
ARCHITECTURE THAT WE SHARED WITH
POLYNESIANS INCLUDING
HAWAIIANs.
THEY HAVE AN SES TREA-SPECIFIC
ALLELES OR ETIOLOGIES, WHICH
SOMETIMES IT'S UNIQUE GENES OR
UNIQUE VARIANTS AND GENES
ASSOCIATED WITH THESE VARIOUS
CONDITIONS.
SO I'LL TALK ABOUT IT. IKANGA
MAORI, BASICALLY BIOETHICS.
SO THOSE ARE THE CULTURAL NORMS
THAT GOVERN OUR BEHAVIOR, CUSS
TOE MARE VALUES AND PRACTICES,
FROM WHICH WE DERIVE SOCIAL
CONTROL, AS WELL AS THOSEST CAL
AND MORAL PRACTICES, WHICH
INCLUDE THINGS LIKE RESEARCH AND
HOW GENOMIC RESEARCH IS
UNDERTAKEN.
THOSE ETHICAL FRAME WORKS, WELL,
MAORI BIOETHICS ESSENTIALLY IS
UNDERPINNED BY THIS THING CALLED
TIKANGA, CULTURAL CONCEPTS AND
VALUES THAT ARE FUNDAMENTAL TO
RESEARCH AND GENES, THINGS LIKE
MODI, WHI -- MAURI, WHICH TALKST
LIFE ESSENCE, MANA,
POWER/AUTHORITY, AND THE OTHER
IS ENVIRONMENTAL GUARDIANSHIP
AND MANAGEMENT FOR SUSTAINED
MANAGEMENT FOR FUTURE
GENERATIONS.
SO THOSE CULTURAL CONCEPTS ARE
THE CUES THAT PROVIDE AN
UNDERPINNING CULTURAL LOGIC.
IT DICTATES HOW WE SHOULD ENGAGE
AS RESEARCHERS, HOW WE SHOULD
ENGAGE WITH OUR INDIGENOUS
COMMUNITIES OR REMOTE MAORI
COMMUNITIES IN A CULTURALLY
ACCEPTABLE MANNER, AND THOSE
QUOTES WERE TAKEN FROM A
GUIDELINE THAT WE DEVELOPED A
NUMBER OF YEARS AGO WHILE
WORKING WITH KIN SPECIES DNA,
SPECIES OF EMOTIONAL VALUE WHICH
ARE TYPICALLY THOSE SPECIES,
FROM THE TIME THEY ARRIVED IN
NEW ZEALAND, 800 OR SO YEARS
AGO, BUT THERE'S THIS TERM, AND
IT'S NOT A SWEAR WORD WHEN I
PRONOUNCE IT, SO PLEASE DON'T BE
PUT OFF BY THAT, BUT IT'S THE
TERM OF WHAKAPAPA AND IT
BASICALLY REFERS TO GENE YOLG
ANGENEALOGYAND THE STORY OF THOE
COME BEFORE US BUT ALSO TALKS
ABOUT RELATIONSHIPS BETWEEN
HUMAN AND NON-HUMAN, ANIMATE AND
NON-ANIMATE AND IS ALSO A
METAPHOR FOR CREATION IN SOME
WAYS.
I'LL TALK ABOUT THEM IN A LITTLE
MORE DETAIL A BIT FURTHER ON,
BECAUSE IT IS A PRACTICE, IT
TALKS ABOUT A PRACTICE OF
MAINTAINING KNOWLEDGE ANCESTORS,
ANCESTORS' NAMES AND THE STORIES
THAT CAME WITH THEM.
THESE OTHER TERMS, I'VE ALREADY
TALKED ABOUT THE SECOND SET OF
THREE ON THAT LIST, BUT
MATAURANGA IS INDIGENOUS
KNOWLEDGE.
SO THINGS LIKE THIS TERM TAPU,
SACRED OR RESTRICTED, THEY HAVE
HEALTH INFORMATION, AS WELL AS
GENOMIC INFORMATION, AND THE TOP
MEANS IT'S PUBLICLY AVAILABLE
BUT IS SOMETHING THAT IS KEPT
PRIVATE, AND ACCESS TO IT IS
UNDER STRICT CONDITIONS.
SO WE HAVE THESE TIKANGA-BASED
ETHICAL FRAME WORKS IN A
RESEARCH CONTEXT TO ENSURE THAT
THIS CULTURALLY APPROPRIATE
CONTEXTUALIZATION AND GUIDANCE
FOR ACTIVITIES SUCH AS RESEARCH
BUT NOT ONLY RESEARCH, A WHOLE
BUNCH OF OTHER ACTIVITIES, THEY
PROVIDE US WITH A FRAMEWORK TO
UNDERTAKE AN EVALUATION OF STUDY
DESIGN AS WELL AS CONDUCT OF
STUDY THAT ARE ROOTED IN OUR VAL
OVALUES, PRINCIPLES AN CUSTOMS.
IF THOSE TIKANGA SHOULD BE
APPLIED VERY MUCH AT THE
RESEARCH CON ACCEPT
SEWELLIZATION PHRASE AND LAST
THROUGHOUT THE LONGEVITY OF A
RESEARCH PROJECT AND THEN
BEYOND.
MAORI KNOWLEDGE, MODERN FOR
COMBINED KNOWLEDGE OF OUR POLL
KNEE SHAB AN SES FORES.
MAORI, LIVING IN THE ENVIRONMENT
INCLUDE THINGS LIKE OUR
LANGUAGE, KNOWLEDGE OF CULTURAL
PRACTICE, HEALING, FISHING,
CULTIVATION, AND MAORI WERE
EXTREMELY GOOD AGRICULTURALISTS
AND THE PERIOD IMMEDIATELY AFTER
THE EUROPEANS JUST ARRIVED WERE
ABLE TO ADEPT, USE SPECIES AND
BECOME AND EXPORT CROPS.
THEY WERE THE FIRST PEOPLE WHO
ACTUALLY -- ANCESTORS OF THE
FIRST PEOPLE WHO ESTABLISHED NEW
ZEALAND AS AN AGRICULTURAL
NATION, WE WERE ABLE TO EXPORT
PRODUCE AROUND THE WORLD AND
PARTICULARLY TO AUSTRALIA.
SO THAT COMPOSES PART OF MAORI
LANGUAGE, AND IT INCLUDES AND IS
UNDERPINNED BY VALUES OF AND
CULTURE.
THIS SLIDE JUST REALLY REFLECTS
THE FACT THAT MAORI IS WRAPPED
WITHIN TIKANG, TIKANGA IS HOW TO
APPLY IT AND THE KNOWLEDGE
ITSELF SITS WITHIN THAT
FRAMEWORK AROUND HOW TO
APPROPRIATELY UTILIZE IT.
I JUST WANT TO POINT OUT THIS
QUOTE HERE WH FROM MAZZOCHI, CAT
EXTRACT JUST THOSE PARTS OF
TRADITIONAL KNOWLEDGE THAT SEEM
TO MEASURE UP TO SCIENTIFIC
CRITERIA AND IGNORE THE REST.
YOU CAN'T EXTRACT JUST THOSE
PARTS OF TRADITIONAL KNOWLEDGE,
THAT SAME TO MEASURE UP TO SEE
OUR SCIENTIFIC CRITERIA AND --
SO WE HAVE DEVELOPED TIKANGA
FRAME WORKS OVER 20 YEARS
WORKING IN THAT SPACE, AND THEN
APPLYING THEM, PARTICULARLY
INVOLVING GENE TECHNOLOGIES.
HERE ARE SOME OF THE FRAME
WORKS.
MOST OF THESE ONES, I'VE WORKED
ON, SOME I HAVEN'T, BUT WE
DEVELOPED A FRAMEWORK IN 2008,
WE PUBLISHED THE AROTURUKI
FRAMEWORK WHICH IS REALLY AROUND
MODIFICATION WORKING IN
INDIGENOUS COMMUTES.
ABOUT THE SAME TIME, A
WELL-KNOWN ACADEMIC AND
INTELLECTUAL -- THERE'S A BUNCH
OF OTHER FRAME WORKS.
I'LL TALK ABOUT THE TE MATA IRA
FRAMEWORK IN A LITTLE BIT OF
DETAIL HERE.
THAT WAS A PROJECT LED BY MAUI
HUDSON, BUT IT INVOLVED A NUMBER
OF OTHER TRIBAL LEADERS, BOTH
CHIEFS OF THEIR TRIBES, THEIR
RESPECTED TRIBAL GROUPS, BUT
ALSO WELL-KNOWN NATIONALLY FOR
THEIR BE ACTIVISM AND PROMOTION
OF MAORI CULTURE.
AS WELL AS THE GRAND OLD LADY
HERE, DR. WAIORA PORT WHO WORKED
IN THE AREA OF GENETIC
COUNSELING AND DEVELOPING
MULTI- -- THE CHAIM WORK SORT OF
LOOKS ESSENTIALLY MODELS THE
RESEARCH PRACTICE.
AN IDEA IS CONCEIVED,
PREPARATION FOR DIALOGUE WITH
THE MAORI COMMUNITIES, INTO A
CONSULTATION PHASE, AND THEN
DURIDOING RESEARCH, AND AFTER TE
RESEARCH IS COMPLETED,
TRANSLATING THE RESULTS BACK TO
COMMUNITIES.
SO EACH ONE OF THOSE PROPOSAL,
WE HAVE TO CONSIDER QUESTIONS
THAT PERTAIN TO EACH ONE OF
THOSE PHASES.
SO FOR EXAMPLE, IN THE
CONSULTATION PHASE, THERE'S ONE
ASPECT WE CALL KAWA, WHICH IS
THE WAY WE DO THINGS, WHAT TYPE
OF RESEARCHERS NEED TO ANSWER
THESE OR ADDRESS THESE QUESTIONS
WHATEVER TYPE OF RELATIONSHIP
THEY'RE LOOKING FOR, WHAT
PRINCIPLES INFORM THE RESEARCH
PROJECT, AND HOW -- THEN TRUST
TO BE -- AS PART OF INTELLECTUAL
PROPERTY, THAT INCLUDES RIGHTS,
INDIGENOUS A AND DATA
SOVEREIGNTY RIGHTS, ET CETERA,
ET CETERA.
GOVERNANCE IS ANOTHER ONE, WHAT
GOVERNMENT ARRANGEMENTS ARE IN
PLACE, HOW CAN TRIBES BEING
INVOLVED IN THE GOVERNANCE OF
SAMPLES, SOMETHING THAT CRYSTAL
HAD REFERRED TO IN HER
PRESENTATION, TO ESTABLISH THAT,
WE ARE ESTABLISHING A SIMILAR
ENTITY, WE'RE GOING DOWN A VERY
SIMILAR PATH, WHICH IS AROUND
INDIGENOUS GOVERNMENTS OVER
INDIGENOUS INFORMATION.
SO OTHER THINGS TO THINK ABOUT,
IS THERE DYNAMIC CONSENT OR
RE-CONSENT, WHAT ARE THE
BENEFITS ARISING FROM THE
STUDIES, AND HOW WILL THEY BE
RETURNED TO PARTICIPANTS IN
THEIR COMMUNITIES.
SO THESE FRAME WORKS HAVE BEEN
APPLIED IN A NUMBER OF DIFFERENT
PROJECTS.
MOST OF THESE, I'VE BEEN
INVOLVED IN.
I'LL TALK ABOUT ONE IN
PARTICULAR IN A SECOND, BUT --
WE'LL GO INTO THAT ONE, ABOUT
ONE OF THESE PROJECTS, OUR VERY
OWN PROJECT AND HOW WE'VE USED
MAORI KNOWLEDGE TO DEVELOP THIS
VERY OWN TOOL.
SORE IT'S CALLED HE KAKANO,
WHICH MEANS THE SEED OR GENETIC
INHAINHERITANCE.
WE RECRUITED ABOUT -- JUST OVER
AHOW PROJECT, AND THE PROJECT
WAS DESIGNED -- PART OF THAT WAS
WE ASKED EVERY PARTICIPANT TO
TELL US WHAT -- ESSENTIALLY WHAT
THEIR GENEALOGY IS SO THAT WE
COULD DETERMINE WHETHER OR NOT
WE'VE GOT -- DEVELOPED A
RESOURCE THAT IS WIDELY SUITABLE
TO USE ACROSS THE MAORI WORLD.
IT'S BOTH A GENETIC AND SOCIAL
CONSTRUCT, IT REFERS TO THE
NAMES OF AN SE TORES SO THEY CAN
BEING FILLED WITH THE BONES AND
THE STORIES WHO GO WITH THEM.
MAORI HAVE OVER 30 GENERATIONS
OF AN SES INVENTORIES AND THAT'S
REALLY QUITE STUNNING, HOW THAT
WAS ACTUALLY ACHIEVED.
BUT THERE WERE A NUMBER OF
DIFFERENT CULTURAL PRACTICES
THAT ENABLED KNOWLEDGE OF
ANCESTORS, THEIR NAMES TO BE
RECORDED, AND THEN TO BE
VALIDATED AND PASSED ON TO EACH
SUBSEQUENT GENERATION.
SO WE'VE USED THAT INFORMATION
IN DEVELOPING OUR VERY OWN, AND
OUR FIRST ROUND OF RECRUITS IN
THE FIRST 125, I THINK, WE
RECRUITED FROM THE EAST COAST
REGION -- THE NORTHEAST COAST
REGION HERE, AND IN THE NORTH
ISLAND, AND WHAT WE FOUND WAS
THERE WAS AN OVERREPRESENTATION
NOT SURPRISINGLY OF THE TRIBES
FROM THAT AREA, SO WE HAD TO
CHANGE OUR RECRUITMENT STRATEGY
AND MOVE TO RECRUITING IN
DIFFERENT PLACES AND SPACES
AROUND THE COUNTRY TO ENABLE US
TO HAVE A MORE REPRESENTATIVE
SAMPLE OF MAORI FROM AROUND
AOTEAROA.
THIS ON THE RIGHT-HAND SIDE HERE
SHOWS THE DISTRIBUTION OF
DIFFERENT TRIBAL GROUPS, AND
THERE'S OVER A HUNDRED
RECOGNIZED TRIBES.
WWHAT WE WERE ABLE TO DO AFTER E
HAD RELOCATED OUR CENTERS OF
RECRUITMENT, WHAT WE WERE ABLE
TO DO WAS SEE A LOT MORE
DIVERSITY AND A LOT CLOSER
REPRESENTATION TO THE RELATIVE
PROPORTIONS OF TRIBES AS THEY
WERE IN THE 2013 CENSUS WAS
ACHIEVED BY CHANGING OUR
RECRUITMENT STRATEGY.
AND SO NOW WE HAVE A RESOURCE
THAT MORE ADEQUATELY REFLECTS
THE BROAD LEVEL OF VARIATION
THAT OCCURS WITHIN THIS
ALMOST -- OVER A MILLION MAORI,
SO THAT WORK WAS UNDERTAKEN BY
ONE OF MY MASTER STUDENTS, BEN
RANGIHUNA, WHO FROM HIMSELF IS
FROM THE TRIBE ON THE EAST
COAST.
SO WE'VE ALSO USED MATAURANGA
INFORMATION TO LOOK AT HOW DO WE
CALCULATE DISEASE RISK.
WHY WOULD WE NEED TO DO THAT?
POLYGENIC RISK SCORES, WHICH ARE
TYPICALLY USED TO CALCULATE
DISEASE RISK DO NOT PERFORM AS
WELL FOR POPULATIONS WHERE THOSE
POPULATIONS ARE NOT REPRESENTED
IN THE DATABASES USED TO
GENERATE THOSE RISK SCORES.
SO WE HAVE TO LOOK AT OTHER
METHODS.
POLYGENIC RISK SCORES COME FROM
GENOME WIDE ASSOCIATION STUDIES
THAT TYPICALLY INVOLVE OVER 1000
RESOURCES IN THIS COUNTRY TO RUN
A STUDY OF THAT SIZE, AND
THERE'S WIDESPREAD RELUCTANCE
AMONGST MAORI TO PARTICIPATE FOR
ALMOST EXACTLY THE SAME RENS
THAT -- NATIVE AMERICANS TO
PARTICIPATE IN THESE SORTS OF
STUDIES.
SO WE HAVE TO LOOK AT OUR
ALTERNATIVE METHODS, AND I'LL
JUST FINISH ON THIS.
THIS COMBINES I GUESS MY
KNOWLEDGE OF OUR PEOPLES'
CULTURE, AS WELL AS THE
STATISTICAL METHODS TO CALCULATE
DISEASE RISK.
AND WHAT WE'VE DONE AND I'LL
JUST CREATE -- THESE TWO GUYS UP
IN THE UPPER RIGHT SIDE, THIS IS
VERY PRELIMINARY AT THE MOMENT,
BUT IF WE USE THIS WITHOUT ANY
DNA OR GENOTYPIC INFORMATION,
WHAT WE FIND IS OUR PREDICTION
ACCURACY, OF AROUND ABOUT .6,
AND IT NOT TOO DIFFERENT TO
PUBLISH ESTIMATES OF POLYGENIC
RISK SCORE ACCURACIES FOR
CONDITIONS LIKE TYPE 2 DIABETES.
OF COURSE IF WE DIDN'T HAVE ANY
INFORMATION, WE'D HAVE ZERO
PREDICTION ACCURACY.
SO THIS GIVES US QUITE A LOT BY
ITSELF.
IF WE WERE GOING TO COMBINE THAT
WITH GENETIC INFORMATION, WHAT
WE CAN SEE IS IF WE GENOTYPED
50% OF OUR COHORTS AND COMBINED
IT WITH OUR INFORMATION ON THOSE
WHERE THE OTHER 50% WERE NOT
GENOTYPED, WHAT WE CAN SEE IS
PREDICTION ACCURACIES NOT FAR
LESS THAN EVERYBODY BEING
GENOTYPED.
NOW WHAT'S THE POINT HERE?
THE POINT IS SO -- WE DON'T NEED
TO GENOTYPE EVERYBODY.
WE'RE GENOTYPING EITHER FOR A
STUDY OR FOR ROUTINE CLINICAL
PURPOSES, YOU NEED TO SPEND
SOMEWHERE BETWEEN 300 AND $600
U.S. TO GENOTYPE THOSE PEOPLE.
IF YOU COMBINE -- IF WE'RE GOING
TO DO THAT ACROSS OUR ENTIRE
MAORI POPULATION IN THIS
COUNTRY, THAT'S ESSENTIALLY
500,000 PEOPLE THAT WE DON'T
NEED TO GENOTYPE, MULTIPLY THAT
BY $600 U.S., THAT'S A VERY,
VERY LARGE AMOUNT OF MONEY THAT
THE TAXPAYER DOES NOT HAVE TO
SPEND FOR VERY LITTLE LOSS IN
PREDICTION ACCURACY.
SO IT HAS REAL BENEFITS, NOT
ONLY FINANCIALLY BUT ALSO IN
TERMS OF OUR ABILITY TO CONDUCT
STUDIES AS WELL.
BEFORE WE ONLY HAD THE RESOURCES
FOR WIDESPREAD GENOME WIDE
ASSOCIATION STUDIES, BUT IF WE
WERE ABLE TO UNDERTAKE THESE
STUDIES WITH -- SIMILAR STUDIES
BUT WITH FAR FEWER PEOPLE
WITHOUT A LOSS OF ACCURACY, THEN
THAT HAS BENEFITS EVEN FOR
RESEARCH PROJECTS.
SO I'LL END THERE.
JUST BY STATING THAT BOTH
TIKANGA AND MATAURANGA MAORI
HAVE CONTRIBUTED TO IMPROVED
OUTCOMES, GREATER LEVELS OF
PARTICIPATION BY MAORI, MORE
EFFECTIVE STUDY DESIGN AND
CONDUCT, WE HAVE BETTER
RESOURCES, THEY ARE A LOT BETTER
THAN THEY WOULD HAVE BEEN
OTHERWISE IF WE DIDN'T UTILIZE
THIS.
AND IT'S POTENTIALLY GOING TO
LEAD TO MORE COST-EFFECTIVE AND
ACCURATE DISEASE RISK AND
ESTIMATION.
AND ALL OF THOSE OUTCOMES ARE
NOT JUST GOOD FOR OUR PEOPLE,
BUT THEY'RE GOOD SCIENTIFICALLY,
SO HE CAN DO GOOD SCIENCE BY
COULDDOING THINGS ETHICALLY AND
APPROPRIATELY UTILIZING
INDIGENOUS KNOWLEDGE.
AND THAT KNOWLEDGE AND THOSE
FRAME WORKS CAN, THEREFORE, ALSO
BE ABLE TO POTENTIALLY REDUCE
EQUITY GAPS.
AND I THINK THAT THAT'S A REALLY
IMPORTANT LESSON FOR AN
INDIGENOUS REFERENCE GENOME.
WE NEED TO -- WE NEED TO
INCORPORATE HOW ETHICAL
PRACTICES AS WELL AS
UNDERSTANDINGS OF OUR CONCEPTS
OF HEREDITARY INHERITANCE.
EVEN THOUGH THOSE THINGS MIGHT
BE LOCALIZED, THEY NONETHELESS
CAN PROVIDE DOING SCIENCE IN A
MUCH BETTER WAY THAN ACTUALLY TY
DELIVERS OUTCOMES FOR OUR
COMMUNITIES.
IN OUR NE KAKANO, WE HAVE A FEW
PEOPLE INVOLVED, PROFESSOR
STEVEN ROBERTSON, LEADERSHIP
GROUP, WHO ALMOST ALL BUT ONE
ARE MAORI AND HUTI WATSON IS THE
CHAIR OF THAT GROUP.
SO MY FINAL COMMENT,
[SPEAKING INDIGENOUS LANGUAGE]
THE BIRD THAT EATS THE FRUIT OF
THE MIRO TREE WILL HAVE THE
FOREST AS ITS DOMAIN, BUT THE
BIRD THAT EATS THE TREE OF
KNOWLEDGE WILL INHERIT THE
EARTH.
ALL FINISHED.
>> THANK YOU SO MUCH,
DR. WILCOX.
REALLY APPRECIATE THAT.
WE'LL TURN NEXT TO OUR NEXT
SPEAKER, OUR THIRD SPEAKER,
DR. BROWN.
>> THANK YOU.
AND WHAT A GREAT PRIVILEGE AND
PLEASURE IT IS TO BE ABLE TO
JOIN YOU ALL TODAY.
MY NAME IS ALEX BROWN.
I'M JUST TRYING TO BRING UP MY
SLIDES HERE.
I THINK -- HERE WE GO.
YOU SHOULD BE ABLE TO -- VERY
GOOD.
I HOPE YOU CAN NOW SEE THAT.
IT'S A GREAT PRIVILEGE TO BE
JOINING YOU DURING NATIVE
AMERICAN HERITAGE MONTH.
KARINA, THANK YOU SO MUCH FOR
THE INVITATION, AND IT'S A GREAT
PRIVILEGE AS ALWAYS TO SHARE THE
VIRTUAL NOOR W FLOOR WITH CRYSTD
PHIL, WHO I'VE ENJOYED WORKING
WITH FOR NOW SOME TIME.
WHAT I THOUGHT I WOULD DO IS
JUST GIVE YOU A LITTLE BIT OF
INFORMATION FROM WHERE I'M FROM.
I'M FROM THE SOUTH COAST OF NEW
SOUTH WALES, FOR THOSE OF YOU
PARTICULARLY IN THE U.S. WHO
DON'T KNOW WHAT AUSTRALIA LOOKS
LIKE, WE'VE GOT A MAP THERE, I'M
FROM THE BOTTOM LEFT-HAND
CORNER, AND MY GRANDMOTHER'S
COUNTRY IS THIS PLACE ON THE
RIGHT CALLED WALLAGA LAKE.
IN THE BACKGROUND IS OUR
ANCESTORS' PLACE, OUR MOUNTAIN,
IT WAS NAMED BY CAPTAIN COOK,
BECAUSE HE THOUGHT IT LOOKED
LIKE A CAMEL.
WE HAVE ANOTHER NAME FOR THAT
PLACE AS IT HAS BEEN FOR TENS OF
THOUSANDS OF YEARS, AND IT'S THE
BIRTHPLACE OF MY ANCESTORS.
YOU CAN OBVIOUSLY TELL THE
BOTTOM LEFT-HAND SIDE WHERE I
GET MY VERY HANDSOME LOOKS FROM,
MY DAD AND MY GRANDFATHER.
WHAT I THOUGHT I'D DO TODAY IS
JUST LAY OUT SOME OF THE
COMPLEXITIES AND QUESTIONS WE
NEED TO ASK OURSELVES AND THE
WAY IN WHICH GENOMICS RESEARCH
HAS BEEN CONDUCTED.
OUR STARTING POINT UNFORTUNATE
NATTILY IS THE HISTORY OF
SCIENCE, CERTAINLY IN OUR
COUNTRY, WHERE SCIENCE WAS NOT
JUST AN INNOCENT BYSTANDER TO
THE PROCESS OF COLONIZATION, IT
BECAME A TOOL OF OPPRESSION, IT
WAS A FORM OF CONFLICT AND HARM
AND VIOLENCE AGAINST INDIGENOUS
INTERESTS.
IN A WAY TO DEMONSTRATE THAT
WILL INDIGENOUS AUSTRALIANS,
DESPITE HAVING LIVED O IN THIS
COUNTRY FOR OVER 60,000 YEARS,
WERE SOMEHOW LESS HUMAN THAN THE
REST OF THE GLOBE.
AND THIS WAS CREATED AS A METHOD
OF DISPOSSESSING INDIGENOUS
AUSTRALIANS OF THEIR RIGHTS AS
THE ORIGINAL INHABITANTS OF THIS
LAND.
AND I POSE TO YOU A SET OF
CONSIDERATIONS ABOUT HOW IF
WE'RE ABLE TO PROGRESS OUR
AGENDA ON OUR TERMS,
PARTICULARLY IN THE CONTEXT OF
GENETICS, THAT WOULD MAKE A
SIGNIFICANT DIFFERENCE.
NOW WE KNOW THAT MOST OF THE
AGENDA PLAYING OUT IN THE GLOBAL
GENOMICS RESEARCH COMMUNITIES
THAT IS A REQUIREMENT FOR A
WHOLE BUNCH OF INDIGENOUS FOLK
AND OTHER ANCESTRALLY DIVERSE
COMMUNITIES TO BE INVOLVED IN
THIS GENOMICS AGENDA.
AND WHILE THERE IS A STRONG CASE
FOR INCLUSION, THERE IS CLEARLY
SIGNIFICANT ADDITIONAL
CONSIDERATIONS TO BE PLAYED
THROUGH.
INCLUSION AT THIS STAGE, A STAMP
COLLECTING EXERCISE AS VIEWED BY
MANY WILL NOT DELIVER THE EQUITY
AND, MORE IMPORTANTLY, THE
SOVEREIGNTY THAT INDIGENOUS
PEOPLES DESERVE AND ASPIRE TO IN
THE CONDUCT OF THIS WORK, AND
I'LL GO THROUGH SOME OF THAT.
WE KNOW, AS HAS ALREADY BEEN
TOUCHED ON BY CRYSTAL IS THERE
ARE VERY FEW INDIGENOUS PEOPLE
INVOLVED IN GENOMICS AGENDAS
ACROSS THE GLOBE AND THAT
DOESN'T LOOK LIKE CHANGING IN
THE NEAR FUTURE.
WE MIGHT SAY WELL, OKAY,
INDIGENOUS PEOPLE HAVE CHOSEN
NOT TO PLAY AND THAT'S CERTAINLY
BEEN THE CASE IN AUSTRALIA.
BUT THE CHALLENGE FOR US IS THAT
ALL OF THE TOOLS TO BE
DEVELOPED, AS PHILIP TOUCHED ON,
WILL BE BIASED IN THEIR
APPLICABILITY IN THE CONTEXT OF
HEALTHCARE AND RESEARCH IN RE
VANS TO US AS INDIGENOUS
PEOPLES.
THERE WAS ALSO A CONVERSATION
THAT WE PROBABLY NEED TO HAVE AS
A GLOBAL COMMUNITY ABOUT OUR
HETEROGENEITY.
NOT JUST IN TERMS OF LABELING OF
INDIGENOUS PEOPLES WITH COLONIAL
CONSTRUCTS OF WHO WE ARE AND
WHAT WE REPRESENT, BUT WE
PUBLISHED RECENTLY DATA TO SHOW
THAT THERE IS DISTINCT GENETIC
ARCHITECTURE WITHIN INDIGENOUS
AUSTRALIANS.
THIS DATA PUBLISHED IN NATURE
LAST YEAR SHOWED THAT ABOUT 25%
OF THE VARIATION WE SAW IN
INDIGENOUS COMMUNITIES IN
AUSTRALIA WAS UNIQUE TO US AND
NOT SEEN IN ANY EUROPEAN
POPULATIONS.
BUT MORE IMPORTANTLY, PERHAPS,
AS 25% OF OUR VARIATION WAS
UNIQUE BETWEEN COMMUNITIES.
AND THIS WAS NOT SURPRISING THAT
CULTURAL AND HISTORICAL
REALITIES OF INDIGENOUS
COMMUNITIES ACROSS AUSTRALIA, WE
WERE SOVEREIGN, INDEPENDENT
NATIONS THAT HAD VERY CLOSELY
MONITORED WAYS OF
INTERCONNECTING WITH OTHER
LANGUAGE GROUPS OR OTHER TRIBES,
AND THIS IS DEMONSTRATED IN THE
GENOMICS STRUCTURE WE SEE WITHIN
INDIGENOUS COMMUNITIES.
AND THIS HAS ENORMOUS RELEVANCE
FOR OUR QUESTIONS OF HOW WILL
THE TOOLS THAT NEED TO BE
DEVELOPED TO ASSIST IN REDUCING
HEALTH INEQUALITIES CONTEND WITH
THESE CHALLENGES, AND ALSO
RELEVANCE TO THE QUESTION OF
WHAT IS AN INDIGENOUS REFERENCE,
WOULD BE ENOUGH TO CAPTURE THE
UNIQUE VARIATION IN
HETEROGENEITY ACROSS OUR
COMMUNITIES BOTH IN TERMS OF OUR
CULTURE, OUR BACKGROUNDS ABOUT
BU ALSO OUR GENOMIC PICTURE.
AND IN OUR CONVERSATIONS WITH
COMMUNITIES, THERE ARE ALSO
ADDITIONAL CHALLENGES.
FOR JUST THINKING WE CAN ROLL UP
OUR SLEEVES AND RECRUIT A WHOLE
BIBUNCH OF INDIGENOUS PEOPLE INO
RESEARCH EFFORTS MORE BROADLY.
QUESTIONS COMING FROM INL DIJ
NUSS AUSTRALIANS ARE QUESTIONS
ABOUT TRUST, THEIR CONCERN IS
HOW WILL GENOMICS ACTUALLY BE
USED AGAINST US?
LARGELY BASED ON OUR HISTORICAL
REALITY OF -- THE TOOL OF A
PERSON.
SCIENCE AS I MENTIONED BEFORE
HAS NOT TRADED INDIGENOUS PEOPLE
OR THEIR INTERESTS OR
PROTECTIONS OF THEIR RIGHTS, AND
SOVEREIGN ABILITY TO DECIDE
THEIR OWN FUTURE.
PARTICULARLY WELL.
QUESTIONS ABOUT CONTROL, WHO'S
MAKING ALL OF THESE DECISIONS?
WHO HAS ACCESS TO THE DATA?
IS THERE A DEGREE OF
EXPLOITATION AT PLAY HERE?
ARE YOU STEALING OUR CULTURE,
OUR STORY, OUR HISTORY, OUR
PEOPLE, OUR NARRATIVES, OUR ORAL
AND CULTURAL TRADITIONS?
AND ONE OF THE IMPORTANT
QUESTIONS, COMMUNITIES, ARE
STILL GRAPPLING WITH AND I THINK
THE GENOMICS COMMUNITY HAS YET
TO ANSWER, IS HOW WILL THESE
BENEFIT COMMUNITY SPECIFICALLY,
HOW WILL IT HELP THE NEXT
GENERATIONS OF INDIGENOUS
PEOPLES AND OUR COMMUNITIES?
AND I FEEL THERE'S STILL
ENORMOUS WORK TO BE DONE TO
ANSWER THESE QUESTIONS IN A WAY
THAT WOULD GIVE COMFORT IN SOME
WAY TO THE PROTECTION OF
INDIGENOUS RIGHTS AND INTERESTS.
YOU MIGHT ASK IF YOU'VE GOT ALL
THESE PROBLEMS WITH GENETICS,
ALEX, WHY THE HELL ARE YOU DOING
IT?
WELL, IT TOOK A LONG TIME TO
NEGOTIATE CONVERSATIONS WITH
COMMUNITIES ABOUT HOW GENOMICS
COULD BE USED TO ANSWER SOME
FUNDAMENTAL QUESTIONS WE HAVE,
AND OUR STARTING POINT WAS
ACTUALLY AROUND THE
INVESTIGATION OF THE AMOUNT OF
TYPE 2 DIABETES THAT WE SEE IN
OUR COMMUNITIES.
ABOUT 50% OF ADULTS OVER THE AGE
OF 50 WILL HAVE TYPE 2 DIABETES
IN MANY OF OUR COMMUNITIES.
SO WE HAVE THIS EXTREMELY HIGH
BURDEN.
WE SEE VERY EARLY ONSET OF TYPE
2 DIABETES IN OUR COMMUNITIES,
MUCH OF WHICH IS NOT EXPLAINED
BY TRADITIONAL RISK FACTORS FOR
TYPE 2 DIABETES AS WE CURRENTLY
KNOWN AS THIS COMMONLY REFERS
TO, AND THIS ONSET IS UP TO TWO
DECADES EARLIER IN INDIGENOUS
AUSTRALIANS.
WE SEE A VERY HIGH BURDEN OF
AGGRESSIVE COMPLICATION AND WE
SEE A PHENOTYPE THAT PROGRESSES
VERY RAPIDLY TO COMPLICATIONS,
PARTICULARLY WITHIN FAMILY
GROUPS.
THOSE COMPLICATIONS BEING END
STAGE KIDNEY DISEASE, BLINDNESS
FROM RETINOPATHY, HEART DISEASE
AND STROKES.
WE KNOW THAT WE WANT AS A
HEALTHCARE SYSTEM TO IMPROVE OUR
ABILITY TO PREDICT WHO'S GOING
TO HAVE TROUBLE, AND THE
QUESTION IS WHETHER OR NOT
GENETICS OFFERS US TOOLS WHEN
EXISTING APPROACHES DON'T DO THE
BUSINESS.
AND WHETHER OR NOT WE CAN
INCREASE ACCESS AND IMPROVE
OUTCOMES IN OUR COMMUNITIES.
SO THIS WAS A NEGOTIATION
PROCESS THAT TOOK OVER THREE
YEARS TO START WITH.
WHAT THAT'S LED US TO IS TWO
FUNDAMENTAL APPROACHES MORE
BROADLY BEYOND A SPECIFIC
PROJECT OF INTEREST TO AGENDAS,
ONE AROUND EMPOWERING
COMMUNITIES IN DECISION-MAKING
ABOUT INVOLVING THEMSELVES IN
GENOMICS IF THEY SO CHOOSE, AND
THE SECOND IS ENSURING THAT WE
HAVE VERY CLEAR LINE OF SIGHT OR
ROAD MAPS TO THE DELIVERY OF
BENEFIT AS DEFINED BY
COMMUNITIES THEMSELVES RATHER
THAN HOW GOOD RESEARCHERS ARE AT
SELLING THE DREAM OF WHAT THEIR
WORK WILL SOLVE.
AND WE'VE GOT A LARGE SCALE
NATIONAL PROJECT RESEARCH
FOCUSED ABOUT EMPOWERING
COMMUNITIES.
IT STARTS WITH INDIGENOUS
KNOWLEDGE SYSTEMS AND I THINK
WE'VE GOT A LOT TO LEARN AND
HOPEFULLY MODEL ON THE WORK
THAT'S BEING LED BY PHIL AND
COLLEAGUES ABOUT THIS FRAME OF
REFERENCE THAT IS FUNDAMENTALLY
INDIGENOUS AND HOW WE USE THAT
AS THE FOUNDATIONS OF OUR WORK
MOVING FORWARD.
A STRONG FOCUS ON DATA SCIENCES,
OUR INTERESTING MULTI-YOE MIX OF
COMPLEX DISEASE, OUR ABILITY TO
CAPTURE AND UNDERSTAND AND WORK
THROUGH THE IMPLICATIONS OF OUR
UNIQUE GENETIC VARIATION.
INCLUDING THE DEVELOPMENT OF PAN
GENOMIC RESOURCES, ASSEMBLIES
AND THE ABILITY TO UTILIZE THOSE
AS A FOUNDATION FOR GENETICS
INFORMED HEALTHCARE DELIVERY.
NOTING THAT IMPORTANT JOB TO DO
TO INCREASE CAPACITY ACROSS THE
SYSTEM, AND OUR WILLINGNESS TO
COLLABORATE WITH HEALTHCARE
SYSTEMS THEMSELVES, RESEARCHERS
ACROSS THE NATION AND INDUSTRY
PARTNERS, ALL OF WHICH AS YOU
CAN IMAGINE IS AN ENORMOUS
CHALLENGE AND WHY I HAVE GREY
HAIR DESPITE BEING A VERY YOUNG
PERSON IN MY MID 20s.
THAT'S NOT TRUE, BY THE WAY.
WE ALSO DECIDED IT WAS TIME TO
BRING TOGETHER EXPERTISE ACROSS
THE NATION AND ESTABLISH AN
ALLIANCE IN INDIGENOUS GENETICS,
WHICH I LEAD.
IT WAS REFLECTIVE REALLY OF THE
EMERGENCE OF INDIGENOUS GENETICS
AS A FIELD IN AND OF ITSELF,
I'LL TOUCH ON THAT IN A LITTLE
WHILE.
THEY HAD FRAGMENTATION ACROSS
THE NATION IN SMALL SCALE
ISOLATED EFFORTS AND WE THOUGHT
IT WAS TIME TO BRING TOGETHER
THOSE PIECES OF THE PUZZLE.
WE WANTED TO COMPLEMENT EACH
OTHER IN TERMS OF THE SKILL,
EXPERTISE THAT WE HAD, WE WANTED
TO MAKE SURE THERE WAS OVERSIGHT
OF SUSTAINABLE NATIONAL EFFORTS.
WE WANTED TO TAKE THIS SORT OF
MORAL AND ETHICAL IMPERATIVE OF
MAKING SURE IF THIS PRECISION
MEDICINE AGENDA IS HURDLING DOWN
THE TRAIN TRACKS AT A ZILLION
MILES AN HOUR THAT WE HAD
SOME - SOME SAY IN HOW THAT WAS
DONE.
THE TRACKS DON'T COME ANYWHERE
NEAR US, THE TRAIN DOESN'T
SHOWDOWN ENOUGH FOR US TO JUMP
ON OR EVEN IF WE WERE, WE'RE NOT
ABLE TO BUY A TICKET.
IF HE WITH COULD BUY A TICKET,
THERE'S NO CARRIAGE FOR US AND
AS A CONSEQUENCE, THE TRAIN
HURDLES ON WITHOUT US IN ANY
WAY, SHAPE OR FORM AND WE WANT
TO CHANGE THAT DYNAMIC.
THIS NATIONAL NETWORK, THE
ALLIANCE, THE AUSTRALIAN
ALLIANCE FOR INDIGENOUS GENETICS
CALLED ALIGN, THE JOB WAS REALLY
TO ESTABLISH THIS NETWORK, WE
NOW HAVE NODES OF EFFORT RIGHT
ACROSS THE COUNTRY.
WE HAVE 45 INDIGENOUS PEOPLE IN
POSITIONS OF INDIGENOUS
GOVERNANCE ACROSS ALL
JURISDICTIONS.
THE JOB IS TO ENHANCE ABORIGINAL
SENSE OF CONTROL OVER HOW THIS
WORK GETS DONE AND WHAT THEY
CHOOSE TO BE INVOLVED IN OR NO.
OUR JOB AS A NETWORK IS TO
IDENTIFY THE KEY POLICY MANNERS,
HOW DO WE RESPOND, WHAT ARE THE
ELEMENTS OF BEST PRACTICE THAT
EXIST OR NEED TO BE DEVELOPED
AND COMMUNICATED, HOW DO WE
BUILD CAPACITY AT NATIONAL SCALE
FOR WHAT'S REQUIRED HERE AND AS
I SORT OF TOUCHED ON EARLIER
BEFORE, HOW DO WE DEFINE IN
PARTNERSHIP WITH COMMUNITIES
WHAT THEY SEE AS POTENTIAL
BENEFITS OF GENETICS ENABLED
HEALTHCARE SYSTEM OF THE FUTURE,
AND ACCORDING TO SOME USER CASE
SCENARIO, WHERE GENOMICS IS MORE
PROXIMAL IN ITS APPLICATION TO
HEALTH AND HEALTHCARE DELIVERY
IN THIS NATION, WHAT'S THE PLAN
TO ENSURE THAT IT DELIVERS THE
BENEFIT THAT COMMUNITIES DEFINE
THEMSELVES AND THOSE TARGET
AREAS OF PHARMACOGENOMICS, OUR
QUEENS LAND NODE, PRECISION
MEDICINE, OUR GENOME BIOLOGY AND
WORK LED OUT OF THE NATIONAL
CENTER FOR INDIGENOUS GENOMICS,
OUR IMMUNOGENOMICS FLAGSHIP IS
LED OUT OF VICTORIA, AND OUR
WESTERN YOU A STRAIL YAL AUSTRAS
LEAD EFFORTS AROUND RARE DISEASE
AND WHAT THAT MEANS FOR
INDIGENOUS COMMUNITIES.
WHERE WE'RE HEADING IN TERMS OF
WHAT WE THINK IS SORT OF A
RESEARCH AGENDA FOR GENOMICS AT
NATIONAL SCALE, IMPORTANTLY A
FOCUS ON PEOPLE AND DEVELOPING
THE NEXT GENERATION OF
INDIGENOUS GENETICS SCIENTISTS,
SO THAT IS OUR PRIMARY FUNCTION,
BUT IN ORDER FOR US TO DO THIS,
WE UNDERSTAND THERE IS A JOB TO
DO TO INFORM AND EDUCATE AND
GUIDE OR USE THE WORD GUIDE
DIPLOMATICALLY HERE,
NON-INDIGENOUS INTERESTS IN
THEIR APPLICATION TO INDIGENOUS
HEALTH AS WELL.
HE WITH WWE WANT TO ENSURE WE HA
PICTURE OF GENOMIC VARIATION SO
TOOLS CAN BE DEVELOPED AND CAN
BE DEPLOYED AND APPLIED TO
HEALTH OF OUR COMMUNITIES, OUR
WAY.
WE WANT TO DEVELOP GENOMIC
RESOURCES INCLUDING T2 T
ASSEMBLIES AND REFERENCE
GENOMES, BUT HAS TO ALSO BE
CONSIDERING OF THE TOOLS AND
RESOURCES REQUIRED TO INFORM AND
ENGAGE AND SUPPORT COMMUNITIES
IN THEIR DECISION-MAKING AROUND
INVOLVEMENT IN GENOMICS.
WE HAVE A LOT OF INTEREST AND
EFFORT ALREADY IN PLAY AROUND
PRECISION MEDICINE APPLICATIONS
AND OUR AMBITION IS TO TARGET
THE CONDITIONS THAT DRIVE THE
GREATEST DEGREE IN EQUALITY AND
HEALTH OUTCOMES FOR OUR
COMMUNITIES, SO THAT WOULD BE
HEART DISEASE, DIABETES, AND
CANCER AT THIS STAGE.
AND THINKING THROUGH WHAT IT'S
GOING TO TAKE TO DELIVER TOOLS
THAT COULD BE DEPLOYED IN
HEALTHCARE SYSTEMS FOR OUR
COMMUNITIES INTO THE FUTURE.
AND IN THE ABILITY TO BEND THE
WILL OF GENETICS TO APPLY IN OUR
BIODIVERSITY ECOLOGICAL HEALTH
AND WELL-BEING AND THAT
INTERRELATIONSHIP WITH HEALTH OF
OUR POPULATIONS GIVEN A
SYMBIOTIC RELATIONSHIP BETWEEN
COMMUNITIES AND PLACE.
I'LL NOW POSE TO YOU A FEW
QUESTIONS TO SORT OF GET YOU
THINKING MAYBE ABOUT WHERE WE'RE
AT AND WHERE THE FUTURE MAY TAKE
US AT LEAST IN TERMS OF GENOMICS
EFFORTS MORE BROADLY.
I'LL TOUCH ON THE FOUR THAT WE
ARE SEEING THE BIRTH OF
INDIGENOUS GENOMICS AS A
MOVEMENT AS WELL AS I FEEL AS A
SCIENTIFIC FIELD.
WE NOW HAVE INTERNATIONALLY
CONNECTED PARTNERS IN THE SAME
CONSORTIA, THE SUMMER INTERNSHIP
FOR INDIGENOUS PEOPLES AND
GENOMICS STARTED IN THE U.S. AND
REALLY QUICKLY SPREAD TO -- AND
OTHER COMMUNITIES ACROSS THE
GLOBE TO BUILD CAPACITY AND
ENGAGEMENT AND PLACE TO DISCUSS
MATTERS OF INDIGENOUS GENOMICS.
THE IMPORTANT REALITY HERE IS
IT'S NOT JUST, OKAY, HOW DO WE
TAKE ALL THESE APPROACHES AND
DEPLOY THEM IN INDIGENOUS
COMMUNITIES.
THE METHODS THAT WE'RE GOING TO
NEED TO DEVELOP, OUR
UNDERSTANDING OF CULTURE AND
CONTEXT IN PLACE OVER TIME WILL
HAVE IMPORTANT IMPLICATIONS FOR
THE WAY IN WHICH WE DO GENETICS,
AND THAT SHOULD BE INFORMED BY
INDIGENOUS PEOPLE AND INDIGENOUS
KNOWLEDGE SYSTEMS, I THINK
IMPORTANTLY AS PHIL IN
PARTICULAR GAVE A FEW CRITICAL
EXAMPLES.
THE OTHER QUESTION WE NEED TO
POSE IS REALLY WHAT IS DRIVING
THIS DIVERSITY AGENDA IN
GENOMICS.
NOW IF WE WERE TO SPEAK TO MOST
OF THE SORT OF BROAD GENETICS
COMMUNITY, IT'S ALL ABOUT
ALTRUISM BECAUSE THEY WANT TO
MAKE SURE THAT THEY'RE DOING
GOOD THINGS FOR INDIGENOUS
INTERESTS BUT THERE ARE OTHER
FORCES AT PLAY THAT MIGHT IN
FACT BE INFLUENCING THAT AGENDA,
IS IT A SENSE OF GUILT, IS IT
UNBRIDLED AMBITION, IS IT A
SEARCH FOR POWER, OR IS
INDIGENOUS GENOMICS JUST THE
NEXT BIG THING ALONG THE
PIPELINE OF CREATING
LONG-STANDING CAREERS AND
AGENDAS AND RESOURCE ALLOCATION
FOR LARGE GROUPS WHO HAVE
PREVIOUSLY IGNORED INDIGENOUS
INTERESTS BUT NOW WANT TO FIND A
WAY TO CONNECT.
NOW I KNOW THAT SOUNDS A LITTLE
CYNICAL, BUT IT'S CERTAINLY A
QUESTION WE SHOULD MAINTAIN AS
WE ENGAGE WITH BROADER
COMMUNITIES WHO WANT TO NOW WORK
WITH INDIGENOUS PEOPLES AND
COMMUNITIES.
THE OTHER CHALLENGE IS
RESEARCHERS ARE REALLY GOOD AT
SELLING BENEFIT, AND I KNOW THIS
BECAUSE THAT'S WHAT I DO FOR A
LIVING.
MY JOB IS TO CONVINCE PEOPLE OF
ANY PERSUASION THAT OUR APPROACH
IS GOING TO BE BETTER THAN WHAT
ANYONE ELSE DID AND WE CAN
DELIVER NIRVANA WITH A PAPERCLIP
AND A SMALL BIT OF GAFFER TAPE.
THE REALITY IS MOST OF THOSE
BENEFITS AREN'T ACTUALLY
DELIVERED TO COMMUNITIES AND
CRYSTAL TOUCHED ON THIS EARLIER.
THE CHALLENGE IS HOW DO WE
NEGOTIATE BENEFIT WITH
COMMUNITIES WHO ARE SEEKING TO
ENGAGE WITH, SHOULDN'T THEY BE
THE ULTIMATE ARBITER OF WHAT
BENEFITS THEY CAN EXPECT AND
WHAT BENEFITS THEY CAN HOLD
RESEARCHERS TO ACCOUNT FOR IN
THE EVENT THEY ARE NOT
DELIVERED.
THIS IS A MUCH HARDER SET OF
CONVERSATIONS.
IT'S SOMETHING THAT RESEARCHERS
ARE NOT PARTICULARLY SKILLED AT
DOING.
AND WE THINK THERE NEEDS TO BE A
REAL SHIFT IN THE POWERBALL ANS
OF WHO DECIDES WHAT BENEFIT IS
AND HOW IS THAT DELIVERED ACROSS
TIME.
I THINK THE OTHER QUESTION IS,
INCLUSION ISN'T GOOD ENOUGH, AND
IT WON'T DELIVER EQUITY IN
OUTCOMES FOR OUR COMMUNITIES,
AND IF WE'RE TO THINK ABOUT WHAT
EQUITY SHOULD LOOK LIKE, IT'S
GOING TO BE A LOT MORE THAN
INCLUSION.
THE OTHER REALITY IS,
UNFORTUNATELY ALL OF THE KEYS TO
THE DOORS TO EQUITY ARE STILL
HELD IN THE HANDS OF OPPRESSORS,
AND THIS IS AN ENORMOUS
CHALLENGE FOR THE WAY IN WHICH
GENOMICS CAN BE MOVED FORWARD.
WE THINK THERE'S A BROADER SET
OF CONSIDERATIONS ABOUT
DELIVERING AN EQUITY AGENDA IN
GENETICS GENOMICS THAT WILL BE L
BASED.
THESE PRINCIPLES IN EMPOWERMENT,
RESPECT, TRUST, CULTURE, AND
BENEFIT BUT THEY COULD BE
APPLIED SPECIFICALLY FROM THE
VIEW OF COMMUNITIES THEMSELVES.
THERE ARE CLEAR FOUNDATIONS THAT
NEED TO BE IN PLAY, DEDICATED
RESOURCES, THE RIGHT WORKFORCE,
THE RIGHT INFRASTRUCTURE THAT
ENABLES US TO DO THIS WORK AND
MAKE ACCEPTS SENSE OF IT, COLLED
CURATE AND PROVIDE CUSTODIANSHIP
OF APPROPRIATE DATA.
WE NEED TO BEND THE WILL OF
GENETICS TO THE THINGS THAT
MATTER MOST TO US AS INDIGENOUS
PEOPLES.
OUR CHOICE IN AUSTRALIA HAS BEEN
TO FOCUS GENOMICS EFFORTS TODAY
ON THE CONDITIONS THAT DRIVE THE
MOST INEQUITY.
SO THAT'S AN IMPORTANT
CONSIDERATION, AND PARTICULARLY
COMMUNITIES WANT US TO USE
GENOMICS FOR PREVENTING DISEASE
IN THE FIRST PLACE.
WHICH IS AN IMPORTANT SET OF
CONSIDERATIONS.
THEN HOW DO WE DELIVER THIS?
HOW DO WE IMPLEMENT AT SCALE,
HOW DO WE HOLD THE SYSTEM TO
ACCOUNT, HOW DO WE HARMONIZE THE
EFFORTS ACROSS THE BOARD.
THE QUESTION WILL PRECISION
MEDICINE REDUCE HEALTH
INEQUALITIES, THIS IS AN
IMPORTANT QUESTION.
WE KNOW IT COULD, BUT WILL IT?
CAN WE PERSONALIZE PREVENTION?
CAN WE COME TO TERMS WITH THE
ETHICAL LEGAL SOCIAL AND
CULTURAL CONSIDERATIONS THAT ARE
REQUIRED FOR US TO WORK THROUGH
TO SEE THIS HAPPEN.
WHO'S IN CONTROL?
CAN WE IDENTIFY TARGETS FOR
TREATMENTS AND THEN ACCESS THOSE
TREATMENTS FOR OUR COMMUNITIES.
DO WE HAVE THE RIGHT MODELS OF
CARE, HAVE WE TRAINED THE RIGHT
WORKFORCE, CAN WE SHIFT THE LENS
OF GENETICS GENOMICS TO THE REDF
HEALTH INEQUALITIES.
AND ANOTHER KEY CONSIDERATION
FOR US IS CAN GENOMICS CONTEND
WITH THE PRIMARY DRIVERS OF
HEALTH INEQUALITIES IN THE FIRST
PLACE, WHICH ARE THE SOCIAL
DETERMINANTS AND THE ST STRUCTUL
INEQUALITYS THAT WE IN OUR
COMMUNITIES FACE.
NOW WE MAY BE ABLE TO DO THAT,
BUT IT'S GOING TO TAKE AN
ENORMOUS AMOUNT OF COLLECTIVE
EFFORT AND VISION AND WISE
COUNSEL FROM OUR COMMUNITIES,
AND THE APPROPRIATE PLACEMENT OF
GENOMICS WITHIN A BROADER AGENDA
TO IMPROVE HEALTH AND SOCIAL
OUTCOMES FOR OUR COMMUNITIES.
GENOMICS WILL NOT DEAL WITH THE
STRUCTURAL DRIVERS OF
INEQUALITIES, AND THE QUESTION
IS, IS THAT FAIR TO INVEST WHAT
WE KNOW IS REQUIRED WHEN THERE
ARE FAMILIES STILL TRYING TO
STRUGGLE TO PUT FOOD ON THE
TABLE EVERY DAY FOR THEIR
CHILDREN.
AS IT CURRENTLY STANDS, AND
CRYSTAL TOUCHED ON THIS, THIS
ELEMENT OF EQUITY GAS LIGHTING,
I THINK SHE FRAMED IT AS
COERCIVENESS.
WE'RE NOT GETTING THESE
NARRATIVES IN AUSTRALIA THAT BY
JUST ASKING FOR APPROPRIATE
INFORMED CONSENT, AN INDIGENOUS
GOVERNANCE BY THE WAY OVER HOW
WORK GETS DONE AND HOW IT'S
IMPLEMENTED AND TRANSLATED, THAT
WE ARE NOW FUNDAMENTALLY RYE F Y
RESPONSIBLE FOR DRIVING
INEQUALITIES FOR OUR COMMUNITIES
BECAUSE WE'RE GETTING IN THE WAY
OF THE MARCH OF SCIENCE AND
GENOMICS.
AND THIS IS A HIGHLY PROBLEMATIC
SPACE AND SOMETHING THAT WE
REJECT REPEATEDLY, BUT IT STILL
MAINTAINS STRONG MOMENTUM IN THE
RESEARCH AND GENOMICS COMMUNITY
WITHIN AUSTRALIA.
AND I WONDER IF WE WERE TO LOOK
AT GENOMICS, RACISM AND
DISCRIMINATION WHAT WE MIGHT
FIND, AND WHETHER OR NOT THE
GENOMICS COMMUNITY IS READY FOR
THAT.
THE OTHER CONNECTION IS THAT
PRECISION MEDICINE IS NOT NEW,
NOR IS OUR UNDERSTANDING OF
INHERITANCE.
WE HAVE 65,000 YEARS OF
KNOWLEDGE HERE IN AUSTRALIA, AND
WE MAINTAIN HEALTH AND
WELL-BEING ACROSS THOSE 65,000
YEARS LED BY INDIGENOUS
KNOWLEDGE SYSTEMS OF HEALTH, OF
WELL-BEING, OF PRESCRIBED
INTERRELATIONSHIP AND OUR
UNDERSTANDING OF INHERITANCE.
THE OTHER QUESTION WE HAVE IS
THAT -- HOW DO WE APPLY DATA
PROTECTIONS IN THE CONTEXT OF
INDIGENOUS GENOMICS.
OUR CONTENTION HERE IN AUSTRALIA
IS THAT WE CAN'T BE FAIR AND
COMPLIANT WITH THE FAIR
PRINCIPLES UNLESS WE CARE, AND
THOSE CARE PRINCIPLES BECOME THE
MOST IMPORTANT STARTING POINT
FOR US RATHER THAN THE OTHER WAY
AROUND.
THE FAIR PRINCIPLES, NO MATTER
HOW IMPORTANT, THEY ARE SEEN BY
THE GENOMICS COMMUNITIES, THERE
ARE ELEMENTS OF THOSE THAT WE
PROBABLY CAN'T SEE OURSELVES
BEING ADHERENT TO IN THE NEAR
FUTURE, AND THERE ARE QUESTIONS
TO ASK ABOUT HOW, IF
APPROPRIATELY, INFORMATION IS
SHARED AND ON WHOSE TERMS.
SO AS I SAID, INCLUSION IS ONE
THING, BUT WE HAVE A MUCH
STRONGER APPETITE PARTICULARLY
IN AUSTRALIA TO DELIVER A SYSTEM
OF GENOMICS THAT'S FOCUSED ON
EQUITY AND OUR ULTIMATE AGENDA
IS TO MAKE SURE WE'RE IN CONTROL
OF OUR OWN DESTINIES IN THIS
SPACE.
I'LL LEAVE IT THERE.
THANKS, KARINA.
>> OKAY, THANK YOU SO MUCH TO
ALL OF OUR SPEAKERS.
IF YOU CAN GO AHEAD AND TURN ON
YOUR CAMERAS SO WE CAN SEE YOU,
WE HAVE ABOUT 7 MINUTES AND HAVE
TIME FOR A FEW QUESTIONS.
I JUST WANT TO REMIND FOLKS ON
OUR VIDEOCAST THAT YOU CAN
SUBMIT QUESTIONS AND WE HAVE
TIME FOR A FEW.
AND FIRST I JUST WANT TO SAY
THANK YOU SO MUCH FOR YOUR
INCREDIBLE PRESENTATION.
THEY REALLY JUST BEAUTIFULLY
BUILT ON ONE ANOTHER AND WE
COULD SEE MANY, MANY PARALLEL
PROCESSES ACROSS THE GLOBE
AROUND OUR CONCERNS AROUND PRIOR
PRACTICES BUT ALSO WHAT WE NEED
TO DO FOR THE FUTURE AND MOVING
AHEAD TO ENSURE OUR SOVEREIGNTY
IN THIS PROCESS.
SO ONE OF THE QUESTIONS ASKED,
THERE SEEMS TO BE LOW INPUT FROM
INDIGENOUS COMMUNITIES ABOUT
WHETHER THEY ARE OKAY WITH THE
CREATION OF A REFERENCE GENOME.
WHAT CAN YOU ADD TO THAT
CONCERN, AND HOW ARE PEOPLE
ADDRESSING THAT?
ALEX, WOULD YOU LIKE TO TAKE
THAT SINCE --
>> I CAN CERTAINLY START AND I'M
SURE THAT PHIL AND CRYSTAL WILL
HAVE THINGS TO ADD.
I AGREE, THERE HAS NOT BEEN
SIGNIFICANT ENGAGEMENT WITH
COMMUNITIES ABOUT WHAT A
REFERENCE GENOME IS.
LET ALONE WHAT IT REPRESENTS.
AND HOW IMPORTANT IT MIGHT OR
MIGHT NOT BE IN TERMS OF
PURSUING OUR INTERESTS.
THE REFERENCE GENOME WORK
HAPPENING WITH INDIGENOUS
COMMUNITIES IN AUSTRALIA,
THERE'S PROBABLY TWO THINGS TO
CONSIDER.
THE REFERENCE GENOME IS BASED ON
SAMPLES FROM COMMUNITIES WHERE
THIS WAS DISCUSSED AND WHERE WE
HAD MULTIPLE LAYERS OF CONSENT
FROM COMMUNITIES ABOUT
PROGRESSING.
THE SECOND IS, WE'VE GOT WORK TO
DO AS A SYSTEM TO ANSWER TWO
FUNDAMENTAL QUESTIONS.
ONE IS, IS ONE REFERENCE GENOME
EVEN GOING TO BE ENOUGH, WHICH
IT MAY NOT BE, AND I THINK OUR
VARIATION ACROSS INDIGENOUS
COMMUNITIES IN AUSTRALIA WOULD
SUGGEST WE NEED TO BE CAUTIOUS
ABOUT THAT.
THE SECOND IS, HOW IS IT USED
AND HOW IS IT GOING TO MAKE A
DIFFERENCE TO OUR FUTURE HEALTH
AND WELL-BEING?
AND I THINK THERE'S STILL
ENORMOUS CONVERSATIONS TO BE HAD
WITH COMMUNITIES TO ANSWER THOSE
FUNDAMENTAL QUESTIONS.
>> THANK YOU.
PHIL OR CRYSTAL?
>> I THINK YOU'RE RIGHT, I MEAN,
THERE NEEDS TO BE MORE
PARTICIPATION ENGAGEMENT WITH
COMMUNITIES ABOUT NOT ONLY WHAT
INDIGENOUS REFERENCE GENOME IS,
BUT ALSO -- AND THERE HAVE BEEN
SOME ENGAGED ACTIVITIES TALKING
ABOUT, LAKE, SPECIFICALLY AND
TRUTHFULLY, WHAT IS HAPPENING
WITH INDIGENOUS PEOPLES' GENOMIC
DATA AFTER A PROJECT ENDS, LIKE
WHERE DOES IT GET DEPOSITED, WHO
GETS ACCESS TO THAT POINT, AND
ALSO ESPECIALLY FOR INDIGENOUS
PEOPLES THAT ARE RECRUITED,
URBAN SETTINGS, ESPECIALLY IN
CLINICAL CARE SETTINGS, THAT
DISTINCTION BETWEEN
PARTICIPATING IN RESEARCH AND
WHAT THAT ENTAILS IN ITS
ENTIRETY VERSUS PARTICIPATING OR
JUST RECEIVING CARE IN THAT
CLINICAL SETTING.
SO I THINK THE NATIONAL
ACADEMIES HAS A REPORT OUT
RECENTLY ON COMMUNITY ENGAGEMENT
AND I CONTRIBUTED A TALK
ABOUT -- WITH DR. ANDREW BUSCAL,
WE STARTED TALKING ABOUT
ENGAGEMENT WASHING.
THAT SOMETIMES WE DO LIKE THIS
ONE LITTLE CONSULTATION OR
LISTENING SESSION WITH
INDIGENOUS PEOPLES AND IT'S
LIKE, OH, THERE'S THE CONSENT.
WE GOT THEIR BUY-IN.
ALSO WE DON'T THINK ABOUT
ENGAGEMENT ACROSS THE DATA
LIFECYCLE, WE TALK ABOUT
ENGAGEMENT MAYBE AT THE POINT OF
ORIGINATION OF THAT DATA BEING
GENERATED ANEW, BUT WE DON'T
REALLY TALK ABOUT LIKE THE
SUSTAINED LIFECYCLE OF LIKE
WHERE -- AND DATA IS LONGER IN
THOSE STAGES.
SO THERE'S JUST SO MUCH MORE
THAT NEEDS TO HAPPEN.
>> I FEEL LIKE WE'RE JUST AT THE
BEGINNING OF THESE
CONVERSATIONS, HONESTLY.
PHIL, ANYTHING YOU'D LIKE TO ADD
TO THAT?
>> I THINK THERE'S A NUMBER OF
FACTORS AT PLAY.
ONE IS OUR COMMUNITIES DON'T
NECESSARILY HAVE THE CAPACITY TO
EFFECTIVE ENGAGE BECAUSE THEY'VE
GOT SO MANY OTHER ISSUES THAT
ARE PRIORITY FOR THEM.
SO HOW WE'VE ADDRESSED THOSE
PRAGMATIC ISSUES IS WORKING
THROUGH HEALTH PROVIDERS, MAORI
HEALTH PROVIDERS INCLUDING
TRIBAL HEALTH PROVIDERS BECAUSE
WE HAVE SIGNIFICANT PROPORTION
OF OUR PEOPLE LIVING IN URBAN
AREAS OUTSIDE OF THEIR
TRADITIONAL TRAIBL BOUNDARI TRIS
AND THEIR MAORI HEALTH
PROVIDERS.
THAT WE'VE ENGAGED WITH AND HAVE
HELPED US RECRUIT INTO THE VERY
OWN PROJECT.
THEY ARE CLOSER TO UNDERSTANDING
BENEFITS, THEY'RE CLOSER TO
UNDERSTANDING THE SOCIAL
DETERMINANTS, AS WELL AS THE BUY
LONGBIOLOGICAL DETERMINANTS OF
HEALTH.
SO LACKING COMMUNITY ENGAGEMENT
IS NOT NECESSARILY LACKING
MEANINGFUL ENGAGEMENT.
THE OTHER POINT TO MAKE TOO IS
THAT WE HAVE USED -- AND I
DIDN'T TALK ABOUT THIS IN MY
PRESENTATION.
THERE ARE MAORI MODELS OF
HEALTH, HEALTH FRAME WORKS, AND
WE'VE DEVELOPED OUR PROJECT IN
PART ACCORDING TO THOSE FRAME
WORKS RATHER THAN OUR STANDARD
WESTERN MEDICAL MODEL.
YES, WE'VE USED THE STANDARD
WESTERN MEDICAL MODEL BUT THOSE
HEALTH FRAME WORKS HAVE BEEN
BROADLY APPLIED UP TO TWO
DECADES AGO, BEGINNING TWO
DECADES AGO.
I THINK WHEN -- KARINA, WHEN YOU
WERE AN ALTEREO MEMBER, THE
MODEL WHICH WE APPLIED TO OUR
PROJECT AND EVALUATED OUR
PROJECT ACCORDING TO THOSE
MODELS.
SO THAT WHEN WE DO GO IN FRONT
OF COMMUNITIES OR TRIBAL LEADERS
OR EVEN THEIR POLITICIANS, WE
CAN GET UP THERE AND SAY, WELL,
ACTUALLY, WE HAVE ADDRESSED
THINGS FROM OUR CULTURAL
PERSPECTIVE, AND AS A SURROGATE
FOR EXPANSIVE COMMUNITY
ENGAGEMENT, IT'S NOT A COMPLETE
REPLACEMENT, IT'S NOT A COMPLETE
SUBSTITUTE, BUT IT'S NOT A BAD
ONE EITHER.
AND IF WE CAN POINT TO THE
PATHWAYS TO BENEFITS FROM THE
RESOURCES THAT WE DEVELOP AND
PUT THOSE -- THE DEVELOPMENT OF
THE PANGENOME INTO THEIR
CONTEXT, I THINK WE'RE A FAIR
WAY DOWN THE TRACK TO ACHIEVING
THE OUTCOMES THAT I THINK THAT
OUR COMMUNITIES WOULD LIKE TO
SEE.
>> WELL, THANK YOU SO MUCH.
WE ARE ALMOST OUT OF TIME.
THE LAST QUESTION HAS TO DO WITH
SOMEBODY WHO'S ASKING FROM THE
UNDERGRADUATE WORLD, THEY'RE
ASKING A LITTLE BIT ABOUT WHAT
ARE THE SKILLSETS THAT YOU VALUE
IN UNDERGRADUATES COMING OUT AND
WANTING INDIGENOUS
UNDERGRADUATES IN PARTICULAR
COMING INTO YOUR LABS OR INTO
YOUR SPACE, WHAT WOULD YOU LIKE
TO SEE FOR THE UP AND COMING
GENERATION?
>> SO I THINK BECAUSE I'LL BE
EVALUATING APPLICATIONS SOON,
THE DEADLINE IS IN A COUPLE
DAYS, I'LL ANSWER.
SO I THINK WHEN I'M EVALUATING A
STUDENT, I'M REALLY EVALUATING
MORE IN TERMS OF INTEREST AND
DRIVE.
AND ALSO WHAT IT IS THEY'D LIKE
TO LEARN AND DO WITH RESEARCH.
AND SO IF A STUDENT COMES UP TO
ME AND STATES OH, I WANT TO DO
RESEARCH IN MY COMMUNITY, THAT'S
GREAT, BUT WHAT DOES THAT LOOK
LIKE?
BECAUSE THERE'S SO MANY
DIFFERENT TYPES OF RESEARCH.
DO YOU WANT TO -- DO YOU SEE
YOURSELF IN LIKE A LAB, BENCH
ENVIRONMENT, DO YOU SEE YOURSELF
WORKING COMPUTATIONALLY, DO YOU
SEE YOURSELF MORE IN, LIKE,
ETHNOGRAPHIC RESEARCH METHODS OR
MORE EMBEDDED TALKING WITH
COMMUNITY MEMBERS DIRECTLY,
QUALITATIVE, QUANTITATIVE
RESEARCH APPROACHES.
IT'S NOT JUST LIKE VISUALIZING
WHAT YOUR DAY TO DAY IN THE LIFE
IS, BUT ALSO IT HELPS YOU
UNDERSTAND WHAT TYPES OF DEGREE
PROGRAMS AND WHAT TYPES OF
TRAINING YOU NEED TO DO THE
TYPES OF THINGS THAT YOU'D LIKE
TO DO.
THEN AFTER THAT, IT IS, OKAY,
HOW DO YOU ENVISION EMBEDDING
YOUR UPBRINGING OR YOUR PERSONAL
EXPERIENCES INTO THAT REALM.
BECAUSE FOR ME, I THINK THE
STRONGEST STUDENTS ARE NOT
NECESSARILY WITH THE HIGHEST TB.
PAGPAs, IT'S MORE SEEING
THEMSELVES IN THE RESEARCH
PROCESS AND HAVING BENEFIT TO
THEIR COMMUNITIES.
SOME TYPES OF RESEARCH QUESTIONS
ARE GREAT, BUT THEY MAY NOT BE
MORE PROXIMALLY IMPACTFUL TO
INDIGENOUS PEOPLES, AND
COMMUNITIES, AND IT'S IMPORTANT
THAT STUDENTS REALIZE THAT UP
FRONT IF THAT'S IMPORTANT TO
THEM.
SO THOSE ARE THE TYPES OF
QUESTIONS THAT I KIND OF
INTERROGATE ON THE PERSONAL
SIDE, JUST TO SEE, LIKE, WHERE
MY MENTORSHIP STYLE MIGHT FIT
WITH THEIR NEEDS.
>> THANK YOU.
OUR TIME IS ACTUALLY UP, AND I
WANT TO AGAIN THANK THIS
INCREDIBLE PANEL FOR THAT TAKING
THEIR TIME AND ALL OF YOU FOR
SHARING YOUR WISDOM.
THIS WILL BE -- WE WILL HAVE
THIS SO THAT OTHER FOLKS WHO
DIDN'T JOIN US TODAY, WE HAD I
BELIEVE AT LEAST 50 PEOPLE
ONLINE TO SHARE WITH US TODAY,
AND I THINK WE WILL HAVE MANY
MORE WHO ARE GOING TO HAVE THE
OPPORTUNITY TO WATCH THIS.
SO I REALLY APPRECIATE YOUR
KNOWLEDGE AND ALL THE WORK THAT
YOU ARE DOING.
IT IS SO IMPORTANT, AND I LOOK
FORWARD TO HEAR MORE ABOUT THE
WORK AND WISH YOU ALL CONTINUED
SUCCESS, ESPECIALLY BRINGING UP
THAT NEXT GENERATION OF
INDIGENOUS GENETICISTS TO BE
ABLE TO LEAD THE WAY.
SO THANK YOU SO MUCH.
THANK YOU FOR THE TIME.
WE ARE GOING TO GO OFFLINE,
AND -- RIGHT NOW.