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>> WELL, WELCOME,
EVERYBODY.

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TO THE TRIBAL HEALTH RESEARCH

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OFFICE AT THE NATIONAL

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INSTITUTES OF HEALTH FOR OUR

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NATIVE AMERICAN HERITAGE MONTH

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EVENT.

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OUR DISTINGUISHED PANEL THAT

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WE'RE EXCITED TO SHARE WITH THE

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WORLD TODAY.

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MY NAME --

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[SPEAKING INDIGENOUS LANGUAGE]

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MY NAME IS KARINA WALTERS, I AM

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THE DIRECTOR OF THE TRIBAL

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HEALTH RESEARCH OFFICE HERE AT

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THE NATIONAL INSTITUTES OF

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HEALTH.

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AND I WANT TO EXTEND MY DEEPEST

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GRATITUDE FOR ALL OF YOU JOINING

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US TODAY FOR THIS VIDEOCAST.

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OUR THEME THIS MONTH AND FOR

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THIS YEAR IS I AM THE DATA, THE

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DATA IS ME! I AM THE DATA, THE

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DATA IS ME! THIS IS REALLY

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RELEVANT BECAUSE IN A LOT OF OUR

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TRIBAL TRADITIONS, WE HAVE

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PROVERBS AND SAYINGS LIKE I AM

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THE LAND, THE LAND IS ME, AS

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OPPOSED TO I OWN THE LAND, THE

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LAND IS MINE.

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SO WE THOUGHT A PARALLEL PROCESS

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IS AT HAND HERE, AND WE WANT TO

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ACKNOWLEDGE IN LIGHT OF THE

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IMPORTANCE OF INDIGENOUS DATA

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SOVEREIGNTY THAT WE ALSO I AM

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THE DATA, THE DATA IS ME! I AM

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THE DATA, THE DATA IS ME!, AND

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IT'S NOT ABOUT I OWN THE DATA,

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THE DATA IS MINE, AND THAT WE

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WANT TO REALLY CENTER AND HONOR

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INDIGENOUS RIGHTS TO TRIBAL

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SOVEREIGNTY WITH RESPECT TO

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DATA, AND SO WE HAVE OUR FIRST

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DISTINGUISHED PANEL WHO'S GOING

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TO KIND OF TACKLE SOME OF THE

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ISSUES, ESPECIALLY FROM A

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GENETIC AND GENOMIC PERSPECTIVE,

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AND SO OUR LECTURE TODAY IS ON

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CENTERING CULTURE AND INDIJNESSD

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THE HONOR AND PRIVILEGE OF

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SITTING WITH THESE THREE

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DISTINGUISHED GUESTS AT THE

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BANBERRY CENTER MOST RECENTLY

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WHERE THEY SHARED SOME OF THEIR

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INSIGHTS AROUND -- FROM AN

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INTERNATIONAL INDIGENOUS

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PERSPECTIVE AROUND THE ETHICS

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AND INDIGENOUS PRINCIPLES IN

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ADDRESSING INDIGENOUS GENOMIC

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PRACTICES AND REFERENCE GENOMES.

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SO I DON'T WANT TO STALL ANY

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LONGER BUT I WANTED TO GIVE AN

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OPPORTUNITY FOR EACH OF THE

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SPEAKERS TO INTRODUCE

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THEMSELVES.

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I'M GOING TO FIRST SHARE A

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LITTLE ABOUT THEIR BIO, AND THEN

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WHEN THEY GO IN ORDER, THEY'RE

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GOING TO HAVE AN OPPORTUNITY TO

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INTRODUCE THEMSELVES MORE FULLY.

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SO OUR THREE SPEAKERS TODAY,

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FIRST IS -- WILL BE DR. CRYSTAL

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TSOSIE, A GENETIC EPIDEMIOLOGIST

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AND BIOETHICIST AND ASSISTANT

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PROFESSOR IN THE SCHOOL OF LIFE

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SCIENCES AT ARIZONA STATE

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UNIVERSITY, ALSO ASSOCIATE

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DIRECTOR OF THE BIODIVERSITY

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KNOWLEDGE INTEGRATION CENTER AT

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ASU AND SHE CO-FOUNDED THE DATA

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BIODATA CONSORTIUM IN A 501C3

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TRIBAL RESEARCH NON-PROFIT

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ORGANIZATION.

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HER RESEARCH AREAS ARE SPECIFIC

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TO INDIGENOUS COMMUNITIES AND

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PEOPLE IN HE HEALTH, SHE'S GOINO

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BE FIRST, BECAUSE SHE WILL BE --

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SHE WILL ACTUALLY HAVE TO LEAVE

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A LITTLE EARLY FROM OUR

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PRESENTATION.

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FOLLOWING DR. TSOSIE WILL BE DR.

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HE IS AN ASSOCIATE PROFESSOR AND

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HAS TRIBAL AFFILIATIONS ARE --

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I'LL SEE IF I GET THIS RIGHT,

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NGATI RAKAIPAAKA, I'M GOING TO

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STOP THERE BECAUSE I THINK I'M

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REALLY GOING TO MESS THE REST

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UP, BUT WE'RE HONORED TO HAVE

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HIM HERE.

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HE'S BASED IN THE UNIVERSITY OF

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OTAGOS DEPARTMENT OF MATHEMATICS

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AND STATISTICS AND HAS

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EXPERIENCE IN APPLIED GENOMICS,

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AS WELL AS ENDWAIJMENT WITH

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INDIGENOUS COMMUNITIES REGARDING

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GENE TECHNOLOGIES.

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HE'S ALSO AN AFFILIATE OF THE

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UNIVERSITY OF OTAGOS BIOETHICS

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CENTER AND CURRENT MEMBER OF

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MAPNED, GENE MAPPING SCIENTISTS

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AND LED THE VIRTUAL INSTITUTE

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FOR STATISTICAL GENETICS FROM

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2008 TO 2013.

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AND OUR THIRD SPEAKER IS

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DR. ALEX BROWN.

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HE IS A PROFESSOR OF INDIGENOUS

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GENOMICS AND AUSTRALIAN NATIONAL

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UNIVERSITY.

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HE'S AN INTERNATIONALLY RENOWNED

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LEADER, LEADING ABORIGINAL

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CLINICIAN AND RESEARCHER WHO HAS

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WORKED HIS ENTIRE CAREER IN

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ABORIGINAL HEALTH AND IN THE

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PROVISION OF PUBLIC HEALTH

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SERVICES, INFECTIOUS DISEASES

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AND CHRONIC DISEASE HEALTHCARE

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POLICY AND A RESEARCH.

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HE HAS FAMILY CONNECTIONS ON THE

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FAR SOUTH COAST OF NEW SOUTH

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WALES, AND HE'S FROM THE U.N.

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NATION AS WELL.

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SO WELCOME, DISTINGUISHED

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PANELISTS.

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IT'S AN HONOR AND PRIVILEGE TO

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HAVE YOU HERE, AND IF YOU WANT

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TO TAKE A FEW MINUTES AND

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BRIEFLY INTRODUCE YOURSELVES OR

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RIGHT BEFORE YOU CAN SPEAK, WE

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CAN GO WITH WHAT WILL BE BEST

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FOR YOU.

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SO WHAT IS YOUR WISH?

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>> INTRODUCE RIGHT BEFORE
WE

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SPEAK?

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>> SOUNDS GREAT.

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OKAY.

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DR. TSOSIE, YOU'RE UP FIRST.

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>> ONE LITTLE HOUSEKEEPING
NOTE,

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SORRY.

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>> THANK YOU, DR.
CALDWELL.

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>> IF THERE ARE QUESTIONS,
THERE

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IS A LIVE FEEDBACK FEATURE ON

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THE VIDEOCAST THAT YOU'LL BE

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ABLE TO SUBMIT QUESTIONS TO, AND

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WE HAVE SOMEBODY MONITORING THAT

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AND WE'LL BE ABLE TO PROVIDE

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THAT TO THE PANELISTS AT THE END

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OF THEIR TALKS.

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THANK YOU.

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>> GREAT.

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>> ALL RIGHT.

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I ASSUME YOU CAN SEE THE PROPER

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MAIN SLIDE?

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THANK YOU.

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[SPEAKING INDIGENOUS LANGUAGE]

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THANK YOU SO MUCH FOR ATTENDING

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THIS WONDERFUL PANEL, AND I'M SO

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HONORED TO BE IN COMMUNITY WITH

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EVERYONE HERE, PARTICULARLY ALSO

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DR. ALEX BROWN AND DR. PHIL

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WILCOX, WHO I'VE KNOWN AND

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ADMIRED FOR MANY YEARS AND SO

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GRATEFUL THEY'RE ABLE TO JOIN US

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FROM ACROSS HEMISPHERES.

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SO I'M GOING TO TRY TO CRAM AS

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MANY SLIDES AS POSSIBLE.

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I WANT TO START WITH SOME

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DISCLOSURE STATEMENTS, ONE, THAT

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I'M LEADING THE DEMO ANALYSIS OF

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GENOMICS DATA GENERATED FROM

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AMERICAN INDIANS AND ALASKA

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NATIVES FROM THE ALL-OF-US

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RESEARCH PROGRAM.

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THIS IS NOT A RESPONSIBILITY I

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TAKE LIGHTLY.

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IT IS WITH A LOT OF

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INTROSPECTION, ESPECIALLY

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CONSIDERING I WAS ON AND STILL

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AM KIND OF CRITICAL OF THE

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PROGRAM, BUT ALSO I THINK IT'S

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IMPORTANT THAT WE HAVE

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INDIGENOUS GENOMICISTS LEADING

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THESE TYPES OF EFFORTS SO THAT

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WE CAN PROPERLY FRAME THE

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INTERPRETATION OF THIS DATA,

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ESPECIALLY SINCE WE ACKNOWLEDGE

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AND REALIZE THAT GENOMICS DATA

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IS, HAS BEEN AND WILL BE

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COLLECTED FROM INDIGENOUS

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PEOPLES WITHIN -- SOMETIMES

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WITHOUT COMMUNITY CONSENT AND

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SOMETIMES ONLY FROM A WESTERN

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INDIVIDUAL SENSE OF YO AUTONOMYD

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AGENCY.

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AND ALSO COFOUNDED THE NATIVE

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BIODATA CONSORTIUM WHICH I'M SO

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PROUD TO TALK ABOUT A LITTLE BIT

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MORE.

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I'M ALSO REALLY HAPPY TO STATE

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THAT IN MY YEAR AND A HALF AS A

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FACULTY MEMBER AT ARIZONA STATE

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UNIVERSITY, WHICH I'M JUST NOW

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FORTUNATE TO LEAD A GROUP OF 12

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MEMBERS FOR THE LAB FOR

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INDIGENOUS EQUITY AND JUSTICE

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AND 75% OF WHOM ARE INDIGENOUS

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AND THIS ARTICLE JUST LANDED

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YESTERDAY OR THE DAY BEFORE ON

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ASU NEWS, BASICALLY STATING THAT

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WE NOW HAVE THREE INDIGENOUS

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FACULTY MEMBERS, TWO OF WHO ARE

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GOING TO BE JOINING AS FACULTY

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SOON, SO THE ASU CONSTITUTES THE

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LARGEST POTENTIALLY

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R01 INSTITUTION WITH THE AMOUNT

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OF INDIGENOUS GENOMICISTS AND

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THAT'S IMPORTANT WHEN WE THINK

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ABOUT POLICY AND IMPACT FOR

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GENOMICS RESEARCH FOR HUMANS AND

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NON-HUMANS.

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MY AREAS OF RESEARCH RELATE TO

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EPIDEMIOLOGY, SPECIFICALLY

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LOOKING AT VARIATIONS -- GENE

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VARIATION CONTRIBUTING TO HEALTH

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DISPARITIES, BUT ALSO THINKING

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ABOUT COMMUNITY ENGAGEMENT TO

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BUILD TRUST AND ALSO DATA TRUST

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IN TERMS OF INFRASTRUCTURE, AND

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ALSO THINKING ABOUT BUILDING

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RESEARCH CAPACITY AND TRAINING

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WITH MACHINE LEARNING

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TECHNOLOGIES AND ALSO DATA --

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INDIGENOUS LAB BIOREPOSITORIES

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TO REALLY THINK ABOUT BUILDING

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DATA CENTERED BIOECONOMIES THAT

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ARE INDIGENOUS OWNED AND

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ORIENTED.

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I WANTED TO REMIND THAT EVEN

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WITH THE RECENTLY EXPANDED PANEL

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OF 74 MEDICALLY ACTUAL GENES BY

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ACMG, ONLY A FEW, A HANDFUL

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ACTUALLY HAVE INFORMATION

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SPECIFIC TO INDIGENOUS PEOPLE SO

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OF COURSE A QUESTION IS, HOW

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DOES THIS AFFECT CLINICAL

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UTILITY AND EQUITY?

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AND DESPITE OVER NOW 20 YEARS OF

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EFFORTS TO TRY TO INCREASE THE

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NUMBERS OF INDIGENOUS

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PARTICIPANTS IN RESEARCH

259
00:09:29,143 --> 00:09:31,212
STUDIES, INDIGENOUS PEOPLE STILL

260
00:09:31,212 --> 00:09:33,848
CONSTITUTE LESS THAN 1% OF

261
00:09:33,848 --> 00:09:35,149
RESEARCH PARTICIPANTS IN

262
00:09:35,149 --> 00:09:37,251
GENOMICS RESEARCH.

263
00:09:37,251 --> 00:09:38,986
I WANT TO REMIND YOU THIS IS NOT

264
00:09:38,986 --> 00:09:40,755
LIKE AN AIM TO GET MORE

265
00:09:40,755 --> 00:09:42,590
INDIGENOUS PEOPLES INVOLVED IN

266
00:09:42,590 --> 00:09:44,692
GENETICS RESEARCH, BECAUSE THAT

267
00:09:44,692 --> 00:09:48,729
ALONE IS A VERY COERCIVE AND

268
00:09:48,729 --> 00:09:49,330
UNIDIRECTIONAL RESEARCH AIM.

269
00:09:49,330 --> 00:09:51,232
IT'S NOT A MATTER OF SELLING

270
00:09:51,232 --> 00:09:52,767
ENGAGEMENT OR RECRUITMENT AS A

271
00:09:52,767 --> 00:09:54,969
MEANS OF JUST IMPROVING NUMBERS

272
00:09:54,969 --> 00:09:57,138
OF INDIGENOUS PEOPLES IN

273
00:09:57,138 --> 00:09:57,572
GENOMICS RESEARCH.

274
00:09:57,572 --> 00:10:01,309
WE ALSO HAVE TO THINK ABOUT

275
00:10:01,309 --> 00:10:02,610
OVERCOMING MISTRUST,

276
00:10:02,610 --> 00:10:04,278
PRIORITIZING BENEFIT SHARING AND

277
00:10:04,278 --> 00:10:06,247
ALSO EMPOWERING DATA

278
00:10:06,247 --> 00:10:06,881
DECISION-MAKING EQUITY.

279
00:10:06,881 --> 00:10:08,316
I ALSO WANT TO REMIND ABOUT

280
00:10:08,316 --> 00:10:10,151
SELLING THE NEXT INNOVATIONS IN

281
00:10:10,151 --> 00:10:11,486
PRECISION MEDICINE AS A BENEFIT

282
00:10:11,486 --> 00:10:12,887
DOES NOT WORK FOR INDIGENOUS

283
00:10:12,887 --> 00:10:14,422
COMMUNITIES WHO DO NOT HAVE

284
00:10:14,422 --> 00:10:16,057
EQUITABLE ACCESS TO PREVENTIVE

285
00:10:16,057 --> 00:10:16,290
HEALTH.

286
00:10:16,290 --> 00:10:18,960
WE HAVE A LOT OF STRUCTURAL

287
00:10:18,960 --> 00:10:20,661
INEQUITIES RELATED TO FEDERALLY

288
00:10:20,661 --> 00:10:21,529
SPONSORED HEALTHCARE FOR

289
00:10:21,529 --> 00:10:22,964
INDIGENOUS PEOPLES.

290
00:10:22,964 --> 00:10:25,600
WE HAVE TIME AND TIME AGAIN A

291
00:10:25,600 --> 00:10:31,105
FAILURE AND JUST ALSO GROSS

292
00:10:31,105 --> 00:10:32,907
INADEQUATE FUNDING FOR OUR

293
00:10:32,907 --> 00:10:34,442
TRIBAL HEALTHCARE FACILITIES.

294
00:10:34,442 --> 00:10:37,712
THIS WAS EVEN PERSISTENT BEFORE

295
00:10:37,712 --> 00:10:39,480
THE PANDEMIC AND HAS PROBABLY

296
00:10:39,480 --> 00:10:41,115
EVEN BEEN EXACERBATED SINCE THE

297
00:10:41,115 --> 00:10:43,951
PANDEMIC.

298
00:10:43,951 --> 00:10:46,687
SO IN ARE REASONS WHY INDIGENOUS

299
00:10:46,687 --> 00:10:48,222
PEOPLES DO NOT PARTICIPATE IN

300
00:10:48,222 --> 00:10:49,323
GENOMICS RESEARCH AND THESE ARE

301
00:10:49,323 --> 00:10:50,758
STRUCTURAL AND EMBEDDED RELATED

302
00:10:50,758 --> 00:10:53,694
AND ROOTED IN CONFLICT ISSUES

303
00:10:53,694 --> 00:10:55,129
RELATED TO CULTURAL AND

304
00:10:55,129 --> 00:10:56,797
POLITICAL FACTORS RELATED TO

305
00:10:56,797 --> 00:11:00,601
HEALTH, BUT ALSO THERE ARE

306
00:11:00,601 --> 00:11:02,169
EXISTENT POWER IMBALANCES, SOME

307
00:11:02,169 --> 00:11:05,406
RELATED TO RESEARCH HARMS AND

308
00:11:05,406 --> 00:11:06,374
MISCONDUCTS, AND THOSE ALSO HAVE

309
00:11:06,374 --> 00:11:08,910
TO BE SHIFTED, A POWER SHIFT HAS

310
00:11:08,910 --> 00:11:10,978
TO OCCUR BEFORE WE JUST TELL

311
00:11:10,978 --> 00:11:11,679
INDIGENOUS PEOPLES THAT THEY'RE

312
00:11:11,679 --> 00:11:12,880
GOING TO MISS OUT ON THE

313
00:11:12,880 --> 00:11:14,148
BENEFITS OF PRECISION HEALTH IF

314
00:11:14,148 --> 00:11:15,349
THEY DO NOT ENGAGE.

315
00:11:15,349 --> 00:11:16,684
BECAUSE THAT ALONE, THAT

316
00:11:16,684 --> 00:11:18,085
MESSAGING ALONE COULD BE

317
00:11:18,085 --> 00:11:21,055
COERCIVE AND ACTUALLY A FORM OF

318
00:11:21,055 --> 00:11:21,923
VICTIM-BLAMING IF WE'RE NOT

319
00:11:21,923 --> 00:11:22,156
CAREFUL.

320
00:11:22,156 --> 00:11:23,558
I ALSO WANT TO BRING THIS QUOTE,

321
00:11:23,558 --> 00:11:27,261
IT'S ACTUALLY FROM A REAL

322
00:11:27,261 --> 00:11:30,865
ESTEEMED COLLEAGUE OF MINE, A

323
00:11:30,865 --> 00:11:33,734
MENTOR, DINE, WHO STATED FAIRLY

324
00:11:33,734 --> 00:11:35,136
RECENTLY THAT GENETICS MEDICINE

325
00:11:35,136 --> 00:11:36,671
WILL NEVER BE A BENEFIT OF TO

326
00:11:36,671 --> 00:11:37,572
INDIGENOUS PEOPLE.

327
00:11:37,572 --> 00:11:39,740
THIS IS FROM THE FRAMING OF

328
00:11:39,740 --> 00:11:44,111
ACTUALLY BEING A RURAL MEDICAL

329
00:11:44,111 --> 00:11:47,381
PRACTITIONER IN THE AMERICAN

330
00:11:47,381 --> 00:11:48,115
SOUTHWEST.

331
00:11:48,115 --> 00:11:50,351
SO SHE'S SEEN THAT IN PEOPLE

332
00:11:50,351 --> 00:11:53,621
LIVING IN INDIAN COUNTRY, OUR

333
00:11:53,621 --> 00:11:55,056
HEALTHCARE CLINICS ARE

334
00:11:55,056 --> 00:11:56,457
CHRONICALLY UNDERFUNDED, WE HAVE

335
00:11:56,457 --> 00:11:58,893
OUTDATED EQUIPMENT, WE HAVE

336
00:11:58,893 --> 00:12:01,162
LIMITED ACCESS TO PREVENTIVE

337
00:12:01,162 --> 00:12:02,196
HEALTHCARE.

338
00:12:02,196 --> 00:12:03,030
NONETHELESS, ACCESS TO MORE

339
00:12:03,030 --> 00:12:05,566
ADVANCED FORMS OF PRECISION

340
00:12:05,566 --> 00:12:06,867
MEDICINE AND HEALTHCARE AND ALL

341
00:12:06,867 --> 00:12:08,936
THESE OTHER STRUCTURAL BARRIERS

342
00:12:08,936 --> 00:12:10,371
RELATED TO HEALTH.

343
00:12:10,371 --> 00:12:13,441
AND THIS IS AGAIN EXACERBATED

344
00:12:13,441 --> 00:12:17,578
DURING COVID, WHERE IT WAS LIKE

345
00:12:17,578 --> 00:12:18,913
THE SURGE OF RESEARCHERS WHO

346
00:12:18,913 --> 00:12:24,051
WANTED TO RESEARCH COVID WAS

347
00:12:24,051 --> 00:12:25,286
MORE -- HAD HIGHER INCIDENCE

348
00:12:25,286 --> 00:12:29,190
RATES IN OUR COMMUNITIES, EVEN

349
00:12:29,190 --> 00:12:30,391
THOUGH THOSE DISPARITIES WERE

350
00:12:30,391 --> 00:12:32,126
NOT DUE TO INHERENT BIOLOGICAL

351
00:12:32,126 --> 00:12:33,127
DIFFERENCES BUT DUE TO THE

352
00:12:33,127 --> 00:12:33,894
STRUCTURAL BARRIERS.

353
00:12:33,894 --> 00:12:38,165
AND DURING THE PANDEMIC, A LOT

354
00:12:38,165 --> 00:12:39,600
OF TRIBAL RESEARCH REVIEW BOARDS

355
00:12:39,600 --> 00:12:42,637
WERE CONSIDERED NON-ESSENTIAL

356
00:12:42,637 --> 00:12:44,605
COMPARED TO THE HEALTH OF TRIBAL

357
00:12:44,605 --> 00:12:46,907
MEMBERS, AND SO MANY OF THE

358
00:12:46,907 --> 00:12:51,946
RESEARCH OVERVIEW PROCESSES AND

359
00:12:51,946 --> 00:12:55,316
IN-DEPTH LOOK TO INPROVE

360
00:12:55,316 --> 00:12:56,417
PROTOCOLED RELATED TO RESEARCH

361
00:12:56,417 --> 00:12:58,152
WERE EITHER HALTED OR FAST

362
00:12:58,152 --> 00:12:58,586
TRACKED.

363
00:12:58,586 --> 00:12:59,587
THIS ALSO HIGHLIGHTS THE

364
00:12:59,587 --> 00:13:02,556
IMPORTANCE OF HAVING INDIGENOUS

365
00:13:02,556 --> 00:13:03,190
LED STRUCTURES.

366
00:13:03,190 --> 00:13:05,393
WHAT HAPPENED IS DURING THE

367
00:13:05,393 --> 00:13:11,065
PANDEMIC, INDIGENOUS NATIONS

368
00:13:11,065 --> 00:13:12,600
TRADED THE SHORT TERM NEED FOR

369
00:13:12,600 --> 00:13:14,368
COVID TESTING SURVEILLANCE AND

370
00:13:14,368 --> 00:13:16,437
VACCINATION WITH THE LONG TERM

371
00:13:16,437 --> 00:13:17,571
UNRESTRICTED ACCESS TO

372
00:13:17,571 --> 00:13:18,839
INDIGENOUS PEOPLES, GENOMES AND

373
00:13:18,839 --> 00:13:19,840
DATA.

374
00:13:19,840 --> 00:13:21,175
ABSENT LOCAL TESTING CENTERS,

375
00:13:21,175 --> 00:13:23,544
TRIBAL NATIONS WERE RELIANT ON

376
00:13:23,544 --> 00:13:25,112
NON-TRAVEL RESOURCES THAT ALSO

377
00:13:25,112 --> 00:13:27,181
LED TO UNPRECEDENTED COLLECTION

378
00:13:27,181 --> 00:13:30,451
OF TRIBAL HEALTH DATA OUTSIDE

379
00:13:30,451 --> 00:13:31,085
TRIBAL OVERSIGHT.

380
00:13:31,085 --> 00:13:32,820
IT ALSO LED TO ESPECIALLY AT THE

381
00:13:32,820 --> 00:13:35,322
START OF LIKE -- OR IN

382
00:13:35,322 --> 00:13:37,758
CONSIDERING BRINGING OUT A

383
00:13:37,758 --> 00:13:40,695
ROLLOUT OF A VACCINE, THE U.S.

384
00:13:40,695 --> 00:13:43,664
GOVERNMENT INVESTED THIS ALL-IN

385
00:13:43,664 --> 00:13:45,232
COMMERCIAL INVESTMENT OF

386
00:13:45,232 --> 00:13:47,068
OPERATION WARP SPEED THAT

387
00:13:47,068 --> 00:13:49,770
BROUGHT CONCERNS THAT VACCINE

388
00:13:49,770 --> 00:13:51,005
COMPANIES WERE RUSHING TRIBAL

389
00:13:51,005 --> 00:13:52,640
APPROVAL PROCEDURES OR EVEN

390
00:13:52,640 --> 00:13:53,941
RECRUITING TRIBAL CITIZENS

391
00:13:53,941 --> 00:13:56,777
RESIDING OUTSIDE OF THEIR TRIBAL

392
00:13:56,777 --> 00:13:59,413
JURISDICTIONS, SO JUST TRYING TO

393
00:13:59,413 --> 00:14:00,281
PERHAPS SURPASS COMMUNITY

394
00:14:00,281 --> 00:14:04,452
ENGAGEMENT PROCESSES OR END UP

395
00:14:04,452 --> 00:14:06,387
REVIEW BY TRIBES JUST TO GET

396
00:14:06,387 --> 00:14:07,288
VACCINES TO COMMUNITIES.

397
00:14:07,288 --> 00:14:09,156
AND ALSO WHAT ENDED UP HAPPENING

398
00:14:09,156 --> 00:14:15,830
IS, DURING THIS ERA, SOME PEOPLE

399
00:14:15,830 --> 00:14:17,198
WHO HAD PARTNERED WITH SOME OF

400
00:14:17,198 --> 00:14:20,334
THE VACCINE COMPANIES STATED

401
00:14:20,334 --> 00:14:24,038
THAT THEY WERE ABIDING BY TRIBAL

402
00:14:24,038 --> 00:14:26,107
DATA SOVEREIGNTY AND RESPECTED

403
00:14:26,107 --> 00:14:27,408
TRIBAL DATA SOVEREIGNTY BY

404
00:14:27,408 --> 00:14:30,678
PUTTING A MOBILE VAN TO RECRUIT

405
00:14:30,678 --> 00:14:31,479
RESEARCH PARTICIPANTS OUTSIDE OF

406
00:14:31,479 --> 00:14:34,181
THE BORDERS OF TRIBAL NATIONS.

407
00:14:34,181 --> 00:14:36,050
SO THIS IS NOT REALLY RESPECT,

408
00:14:36,050 --> 00:14:38,686
IT'S ACTUALLY DISRESPECTFUL, BUT

409
00:14:38,686 --> 00:14:41,088
IT'S INTERESTING, LIKE THIS

410
00:14:41,088 --> 00:14:46,460
DYNAMIC OF REALLY JUST

411
00:14:46,460 --> 00:14:48,095
EXACERBATING OR FALLING INTO A

412
00:14:48,095 --> 00:14:49,730
LOOPHOLE OF REGULATION.

413
00:14:49,730 --> 00:14:51,031
AND IN TERMS OF LIKE THE

414
00:14:51,031 --> 00:14:53,667
CLINICAL SPACE, MANY INDIGENOUS

415
00:14:53,667 --> 00:14:54,702
PEOPLES DON'T -- YOU KNOW, THEY

416
00:14:54,702 --> 00:14:56,403
HAVE A CATCH 22.

417
00:14:56,403 --> 00:14:58,606
THEY MAY DECIDE NOT TO

418
00:14:58,606 --> 00:14:59,940
CONTRIBUTE DATA DNA FOR CLINICAL

419
00:14:59,940 --> 00:15:00,808
TESTING BECAUSE THEY CAN'T

420
00:15:00,808 --> 00:15:02,109
AFFORD IT OR THEY'RE CONCERNED

421
00:15:02,109 --> 00:15:04,411
ABOUT DATA USAGE, OR IF THEY DO

422
00:15:04,411 --> 00:15:06,380
AGREE TO CONTRIBUTE THEIR DNA

423
00:15:06,380 --> 00:15:10,451
FOR TESTING, THEY ALSO BROADLY

424
00:15:10,451 --> 00:15:11,619
IMPLICITLY BROADLY CONSENT TO

425
00:15:11,619 --> 00:15:13,788
ANY SECONDARY DATA USAGE AND

426
00:15:13,788 --> 00:15:15,022
OWNERSHIP BY TESTING COMPANIES,

427
00:15:15,022 --> 00:15:16,991
AND YET STILL DERIVE LITTLE TO

428
00:15:16,991 --> 00:15:19,493
NO CLINICAL UTILITY.

429
00:15:19,493 --> 00:15:20,895
THIS ALSO MEANS THAT COMMERCIAL

430
00:15:20,895 --> 00:15:23,998
GENETIC COMPANIES CAN CO-AUTHOR

431
00:15:23,998 --> 00:15:25,633
OR CLAIM OWNERSHIP OF PEOPLE'S

432
00:15:25,633 --> 00:15:26,066
GENETIC DATA.

433
00:15:26,066 --> 00:15:28,102
WHAT HAPPENS WHEN THIS IS

434
00:15:28,102 --> 00:15:29,370
DEPOSITED INTO PUBLIC DATABASES

435
00:15:29,370 --> 00:15:31,639
LIKE CLINVAR, WHERE THERE'S NO

436
00:15:31,639 --> 00:15:32,339
OPT-OUT PROCESSES.

437
00:15:32,339 --> 00:15:34,275
THERE'S ALSO A CONCERN ABOUT

438
00:15:34,275 --> 00:15:36,243
URBAN TERTIARY CARE CENTERS,

439
00:15:36,243 --> 00:15:37,545
ESPECIALLY CANCER CARE CENTERS,

440
00:15:37,545 --> 00:15:40,080
THAT ALSO BIOBANK SAMPLES AND

441
00:15:40,080 --> 00:15:41,482
DATA WITHOUT EXPLICIT TRIBAL

442
00:15:41,482 --> 00:15:43,250
NATION APPROVAL, WHICH ALSO

443
00:15:43,250 --> 00:15:44,685
RAISES CONCERNS ABOUT THE

444
00:15:44,685 --> 00:15:46,754
CONFLATION OF RESEARCH CONSENT

445
00:15:46,754 --> 00:15:48,489
VERSUS CONSENT TO CARE FOR

446
00:15:48,489 --> 00:15:49,824
MINORITIZED COMMUNITIES.

447
00:15:49,824 --> 00:15:54,295
AND ALSO WE'VE HAD MANY DRUG

448
00:15:54,295 --> 00:15:56,797
COMPANIES TELL US THAT IT'S NOT

449
00:15:56,797 --> 00:15:57,998
PROFIT-GENERATIVE TO USE

450
00:15:57,998 --> 00:15:59,533
INDIGENOUS PEOPLE'S DNA TO

451
00:15:59,533 --> 00:16:01,068
SPECIFICALLY CREATE THERAPEUTICS

452
00:16:01,068 --> 00:16:01,936
THAT IMPACT INDIGENOUS PEOPLE

453
00:16:01,936 --> 00:16:03,804
BECAUSE WE ARE TOO SMALL OF A

454
00:16:03,804 --> 00:16:08,309
PROFIT SHARE FOR THE MARKET TO

455
00:16:08,309 --> 00:16:09,710
SUPPORT THOSE TYPES OF

456
00:16:09,710 --> 00:16:10,711
INNOVATIONS.

457
00:16:10,711 --> 00:16:12,112
SO RECRUITING MORE PEOPLE INTO

458
00:16:12,112 --> 00:16:13,113
DATASETS IS NOT GOING TO SOLVE

459
00:16:13,113 --> 00:16:14,982
THIS PROBLEM, NEITHER IS

460
00:16:14,982 --> 00:16:16,951
DROPPING GENETIC TESTS IN OUR

461
00:16:16,951 --> 00:16:19,653
COMMUNITIES.

462
00:16:19,653 --> 00:16:22,423
SO WHERE DOES THE DATA COME

463
00:16:22,423 --> 00:16:24,391
FROM, FROM EXCLUSIVELY

464
00:16:24,391 --> 00:16:25,259
INDIGENOUS POPULATIONS?

465
00:16:25,259 --> 00:16:26,994
IT ACTUALLY COMES FROM

466
00:16:26,994 --> 00:16:28,095
INDIGENOUS GROUPS OUTSIDE THE

467
00:16:28,095 --> 00:16:28,429
U.S.

468
00:16:28,429 --> 00:16:30,397
THIS IS FROM THE HUMAN GENOME

469
00:16:30,397 --> 00:16:30,798
DIVERSITY PROJECT.

470
00:16:30,798 --> 00:16:32,032
IF YOU NOTICE IN THE SORT OF

471
00:16:32,032 --> 00:16:33,901
PINKISH COLOR, MOST OF THESE

472
00:16:33,901 --> 00:16:37,071
GROUPS ARE IN MEXICO AND FURTHER

473
00:16:37,071 --> 00:16:38,372
SOUTH, POTENTIALLY IN COUNTRIES

474
00:16:38,372 --> 00:16:39,807
THAT DON'T HAVE EQUAL

475
00:16:39,807 --> 00:16:42,209
ACKNOWLEDGMENT OF INDIGENOUS

476
00:16:42,209 --> 00:16:44,511
PEOPLES' RIGHTS WHICH MEANS THAT

477
00:16:44,511 --> 00:16:46,580
THEY WOULD POSSIBLY BE EXPLOITED

478
00:16:46,580 --> 00:16:48,649
OR DATA EXTRACTED WITHOUT

479
00:16:48,649 --> 00:16:48,983
PERMISSION.

480
00:16:48,983 --> 00:16:51,051
THESE ARE THE SAME DATASETS THAT

481
00:16:51,051 --> 00:16:55,122
ARE USED BY GENETIC COMPANIES TO

482
00:16:55,122 --> 00:16:59,493
CREATE TESTS THAT ARE MARKETED,

483
00:16:59,493 --> 00:17:02,763
BUT SOME OF THESE ONLY HAVE AS

484
00:17:02,763 --> 00:17:04,632
FEW AS 30 INDIVIDUALS WHERE

485
00:17:04,632 --> 00:17:05,599
OTHER REFERENCE POPULATIONS HAVE

486
00:17:05,599 --> 00:17:07,568
MORE THAN 10,000, AND YES

487
00:17:07,568 --> 00:17:08,669
BECAUSE THESE ARE THE ONLY ONES

488
00:17:08,669 --> 00:17:12,273
THAT ARE PUBLICLY AVAILABLE,

489
00:17:12,273 --> 00:17:14,341
IT'S USED FOR GENETIC ANCESTRY

490
00:17:14,341 --> 00:17:15,776
FOR ALL U.S. INDIGENOUS PEOPLES.

491
00:17:15,776 --> 00:17:17,411
SO IF WE THINK ABOUT LIKE A

492
00:17:17,411 --> 00:17:19,680
STANDARD PCA PLOT, PRINCIPAL

493
00:17:19,680 --> 00:17:20,581
COMPONENTS ANALYSES, MOST OF

494
00:17:20,581 --> 00:17:22,216
THESE WORKFLOWS ARE

495
00:17:22,216 --> 00:17:24,418
INAPPROPRIATE FOR INDIGENOUS

496
00:17:24,418 --> 00:17:26,353
PEOPLES, BECAUSE IT DEFAULTS TO

497
00:17:26,353 --> 00:17:28,489
THIS PAN INDIGENOUS NOTION OF

498
00:17:28,489 --> 00:17:31,959
WHO IS NOT OR IS INDIGENOUS BY

499
00:17:31,959 --> 00:17:34,161
BLOOD AND POSSIBLY CATEGORIZING

500
00:17:34,161 --> 00:17:36,897
INDIGENOUS PEOPLES AS BEING

501
00:17:36,897 --> 00:17:37,731
GENETICALLY HOMOGENEOUS

502
00:17:37,731 --> 00:17:38,198
IDENTITY.

503
00:17:38,198 --> 00:17:40,267
THESE TYPES OF SAMPLING

504
00:17:40,267 --> 00:17:41,535
APPROACHES ARE NOT APPROPRIATE

505
00:17:41,535 --> 00:17:45,105
FOR SMALL INDIGENOUS GROUPS

506
00:17:45,105 --> 00:17:46,507
BECAUSE YOU HAVE THESE

507
00:17:46,507 --> 00:17:56,884
ASSUMPTIONS RELATED TO

508
00:17:58,185 --> 00:18:00,621
HARDY-WEINBERG EQUILIBRIUM.

509
00:18:00,621 --> 00:18:02,156
IF WE'RE TRYING TO REMOVE

510
00:18:02,156 --> 00:18:03,891
OURSELVES AWAY FROM THIS EUGENIC

511
00:18:03,891 --> 00:18:05,326
PAST, THIS IS NOT THE WAY TO DO

512
00:18:05,326 --> 00:18:09,330
IT, BUT IT ALSO IGNORES LIVED

513
00:18:09,330 --> 00:18:10,130
EXPERIENCES RELATED TO

514
00:18:10,130 --> 00:18:10,998
STRUCTURAL DETERMINANTS OF

515
00:18:10,998 --> 00:18:12,099
HEALTH AND ALSO RELATES TO THE

516
00:18:12,099 --> 00:18:14,134
POOR MODELING OF PHENOTYPES THAT

517
00:18:14,134 --> 00:18:16,704
ARE POORLY REFLECTED IN EHR

518
00:18:16,704 --> 00:18:17,338
RECORDS.

519
00:18:17,338 --> 00:18:18,772
THERE HAVE BEEN MANY EFFORTS TO

520
00:18:18,772 --> 00:18:21,275
CREATE INDIGENOUS-SPECIFIC

521
00:18:21,275 --> 00:18:22,710
REFERENCE GENOMES.

522
00:18:22,710 --> 00:18:27,414
THESE ARE SOME OF THEM, BUT

523
00:18:27,414 --> 00:18:28,849
THEY'RE ALL ALSO WEIRDLY FALLING

524
00:18:28,849 --> 00:18:30,918
INTO THESE TRAPS OF CREATING A

525
00:18:30,918 --> 00:18:34,521
GENOMIC NARRATIVE OF ALL

526
00:18:34,521 --> 00:18:35,189
INDIGENOUS PEOPLES BEING SIMILAR

527
00:18:35,189 --> 00:18:36,724
AS PART OF THIS GENTLEMAN

528
00:18:36,724 --> 00:18:39,226
NETICALLY HOMOGENEOUS HOLE, AND

529
00:18:39,226 --> 00:18:41,528
SOME OF THEM ARE ALSO INCREDIBLY

530
00:18:41,528 --> 00:18:43,397
COLONIAL HOW THEY NAMED

531
00:18:43,397 --> 00:18:44,698
INDIGENOUS GROUPS BY THEIR

532
00:18:44,698 --> 00:18:46,133
COLONIAL NAME AND NOT PROPERLY

533
00:18:46,133 --> 00:18:47,234
ATTRIBUTING TO THEIR CULTURAL

534
00:18:47,234 --> 00:18:49,303
NAME.

535
00:18:49,303 --> 00:18:51,038
ALEX BROWN IS GOING TO SPEAK

536
00:18:51,038 --> 00:18:52,573
MORE ABOUT EXACTLY WHAT A

537
00:18:52,573 --> 00:18:54,541
REFERENCE GENOME IS, AND IT'S

538
00:18:54,541 --> 00:18:56,944
IMPORTANT TO UTILITY, BUT THERE

539
00:18:56,944 --> 00:18:58,612
ARE EMERGING PROJECTS ABOUT

540
00:18:58,612 --> 00:19:00,781
CREATING A HUMAN PAN GENOME

541
00:19:00,781 --> 00:19:03,517
REFERENCE CONSORTIUM, AND THE

542
00:19:03,517 --> 00:19:05,386
CHALLENGE HERE IS TO ENSURE THAT

543
00:19:05,386 --> 00:19:06,787
THIS PROJECT JUST DOESN'T

544
00:19:06,787 --> 00:19:08,322
REPLICATE THE SAME PROBLEMS OF

545
00:19:08,322 --> 00:19:11,058
THE PAST AND TRYING TO AVOID

546
00:19:11,058 --> 00:19:15,429
EXPLOITATION.

547
00:19:15,429 --> 00:19:19,366
DR. KEOLU FOX IS ANOTHER GENOMIC

548
00:19:19,366 --> 00:19:20,701
SCIENTIST THAT SAYS WE CREATE AS

549
00:19:20,701 --> 00:19:23,404
MANY LABELS AS WE WANT BUT AT

550
00:19:23,404 --> 00:19:24,638
THE END OF THE DAY, WHO IS DOING

551
00:19:24,638 --> 00:19:27,808
THE LABELING?

552
00:19:27,808 --> 00:19:28,675
RESEARCHERS SHOULD DEFER TO

553
00:19:28,675 --> 00:19:29,977
COMMUNITIES INVOLVING THEM AND

554
00:19:29,977 --> 00:19:31,078
CONDUCTING SCIENCE THAT WOULD

555
00:19:31,078 --> 00:19:31,945
TRULY ADDRESS DISPARITY.

556
00:19:31,945 --> 00:19:33,614
SO THERE'S A HUGE QUESTION ABOUT

557
00:19:33,614 --> 00:19:35,015
POPULATION DESCRIPTORS AND ALSO

558
00:19:35,015 --> 00:19:35,883
WHETHER OR NOT WE SHOULD EVEN

559
00:19:35,883 --> 00:19:37,651
USE THEM IN RESEARCH, BUT SIMPLY

560
00:19:37,651 --> 00:19:38,752
REMOVING LABELS DOES NOT REMOVE

561
00:19:38,752 --> 00:19:41,555
THE ABILITY TO REIDENTIFY OR

562
00:19:41,555 --> 00:19:42,556
STIGMATIZE DATA FROM INDIGENOUS

563
00:19:42,556 --> 00:19:42,790
PEOPLES.

564
00:19:42,790 --> 00:19:44,525
YOU CAN REALLY DO CLUSTER

565
00:19:44,525 --> 00:19:45,959
ANALYSES SO THAT CAN ALSO

566
00:19:45,959 --> 00:19:50,330
CONTRIBUTE TO SOME OF THESE

567
00:19:50,330 --> 00:19:51,498
PROBLEMATIC GENOMIC STATEMENTS

568
00:19:51,498 --> 00:19:53,667
THAT WE'RE TRYING TO MOVE AWAY

569
00:19:53,667 --> 00:19:53,867
FROM.

570
00:19:53,867 --> 00:19:56,670
THIS GETS ME TO A DEFINITION FOR

571
00:19:56,670 --> 00:19:57,638
INDIGENOUS GENOMIC DATA

572
00:19:57,638 --> 00:19:59,073
SOVEREIGNTY WHICH IS THE RIGHT

573
00:19:59,073 --> 00:20:00,507
OF INL DIJ NUSS NATIONS AND

574
00:20:00,507 --> 00:20:02,409
PEOPLE TO EXERCISE AUTONOMY

575
00:20:02,409 --> 00:20:07,181
RELATE THE TO THEIR I DYNAMIC D.

576
00:20:07,181 --> 00:20:08,282
WE STARTED WITH THE SAME PREMISE

577
00:20:08,282 --> 00:20:09,483
OF RETURNING DATA BACK TO

578
00:20:09,483 --> 00:20:10,551
COMMUNITIES AND LETTING THEM

579
00:20:10,551 --> 00:20:11,652
DETERMINE WHAT SHOULD OR SHOULD

580
00:20:11,652 --> 00:20:14,054
NOT BE DONE WITH THEIR DATA, AND

581
00:20:14,054 --> 00:20:17,891
THIS INVOLVES A LOT OF COMMUNITY

582
00:20:17,891 --> 00:20:19,226
DIRECTED GOVERNANCE AND THIS

583
00:20:19,226 --> 00:20:21,495
ALSO INVOLVES QUITE A BIT OF

584
00:20:21,495 --> 00:20:22,963
POLICY AND LEGAL INFRASTRUCTURES

585
00:20:22,963 --> 00:20:25,432
THAT NEEDED TO BE CREATED AT THE

586
00:20:25,432 --> 00:20:26,533
TRIBAL RESOLUTION LEVEL IN ORDER

587
00:20:26,533 --> 00:20:28,869
TO BE ABLE TO BE PROTECTIVE OF

588
00:20:28,869 --> 00:20:30,804
THE TYPE OF RESEARCH THAT MAY BE

589
00:20:30,804 --> 00:20:31,872
INVOLVING INDIGENOUS PEOPLES.

590
00:20:31,872 --> 00:20:33,740
SO IT'S NOT JUST A MATTER OF

591
00:20:33,740 --> 00:20:34,408
COLLECTING DATA.

592
00:20:34,408 --> 00:20:38,445
IT'S ALSO A MATTER OF CREATING

593
00:20:38,445 --> 00:20:39,880
THESE POLICY AND LEGAL

594
00:20:39,880 --> 00:20:41,081
INFRASTRUCTURES TO EVEN BE ABLE

595
00:20:41,081 --> 00:20:42,549
TO CONSIDER THE TYPES OF

596
00:20:42,549 --> 00:20:44,485
RESEARCH QUESTIONS THAT MIGHT

597
00:20:44,485 --> 00:20:45,252
ORIGINATE FROM COMMUNITY

598
00:20:45,252 --> 00:20:45,886
MEMBERS.

599
00:20:45,886 --> 00:20:49,923
THIS ALSO MEANS BUILDING DATA

600
00:20:49,923 --> 00:20:51,792
INFRASTRUCTURES THAT ADVANCE ON

601
00:20:51,792 --> 00:20:55,629
THESE -- LIKE WHO GETS ACCESS TO

602
00:20:55,629 --> 00:20:59,566
DATA, ADVANCES HOW WE REGULATE

603
00:20:59,566 --> 00:21:02,503
AND CONDUCT CONSENT AS ROOTED IN

604
00:21:02,503 --> 00:21:06,907
MACHINE LEARNING PROCESSES.

605
00:21:06,907 --> 00:21:10,511
MY OWN LAB, WE ARE DOING OUR OWN

606
00:21:10,511 --> 00:21:13,347
URBAN INDIGENOUS COHORT WITH

607
00:21:13,347 --> 00:21:15,315
STARTING FIRST FROM DEMOCRATIC

608
00:21:15,315 --> 00:21:16,717
DELIBERATIONS OR COMMUNITY

609
00:21:16,717 --> 00:21:18,919
ENGAGED APPROACH TO REALLY

610
00:21:18,919 --> 00:21:19,686
SPECIFICALLY LOOK AT WHAT ARE

611
00:21:19,686 --> 00:21:20,787
THE FACTORS THAT WERE MISSING

612
00:21:20,787 --> 00:21:23,790
WHEN WE ONLY FOCUS ON GENOMICS

613
00:21:23,790 --> 00:21:25,259
DATA OR ELECTRONIC HEALTH RECORD

614
00:21:25,259 --> 00:21:28,228
DATA, AND IT INVOLVES THE

615
00:21:28,228 --> 00:21:31,064
CREATION OF CULTURALLY VALIDATED

616
00:21:31,064 --> 00:21:31,932
SURVEYS TO GET AT THOSE THINGS

617
00:21:31,932 --> 00:21:33,033
THAT ARE MISSING WHEN WE ONLY

618
00:21:33,033 --> 00:21:34,668
FOCUS ON THOSE TWO DATA TYPES.

619
00:21:34,668 --> 00:21:37,404
WHEN WE'RE TALKING ABOUT

620
00:21:37,404 --> 00:21:38,839
BUILDING INDIGENOUS DATA

621
00:21:38,839 --> 00:21:42,676
SOVEREIGNTY, WE'RE TALKING ABOUT

622
00:21:42,676 --> 00:21:44,745
POLICY LONG GOVERNANCE BUT ALSO

623
00:21:44,745 --> 00:21:46,580
NEED TO THINK ABOUT DIGITAL

624
00:21:46,580 --> 00:21:48,015
SOVEREIGNTIES AND ACTUALLY

625
00:21:48,015 --> 00:21:49,349
BUILDING DATA INFRASTRUCTURE,

626
00:21:49,349 --> 00:21:50,984
DATA REPOSITORIES, DATA TOOLS

627
00:21:50,984 --> 00:21:52,553
AND POTENTIALLY CLOUD SOLUTIONS

628
00:21:52,553 --> 00:21:53,720
THAT WORK FOR INDIGENOUS

629
00:21:53,720 --> 00:21:54,288
PEOPLES.

630
00:21:54,288 --> 00:21:56,123
THIS ALSO IS AN OPPORTUNITY FOR

631
00:21:56,123 --> 00:21:57,324
INDIGENOUS PEOPLES TO EXERCISE

632
00:21:57,324 --> 00:22:01,495
THAT CONTROL OVER GENOMIC DAY DA

633
00:22:01,495 --> 00:22:02,930
TO MAKE IT BENEFICIAL FOR THEM

634
00:22:02,930 --> 00:22:04,665
BUT IT ALSO INCLUDES CHANGES IN

635
00:22:04,665 --> 00:22:06,533
THE STRUCTURAL SYSTEMS.

636
00:22:06,533 --> 00:22:07,734
SO RECRUITMENT IS NOT

637
00:22:07,734 --> 00:22:08,068
ENGAGEMENT.

638
00:22:08,068 --> 00:22:10,237
WE NEED TO IMPLEMENT RESPONSIBLE

639
00:22:10,237 --> 00:22:12,439
DATA ACCESS AND DATA SHARING

640
00:22:12,439 --> 00:22:14,508
PRACTICES, WE NEED TO RE-THINK

641
00:22:14,508 --> 00:22:16,043
INFORMED CONSENT THAT'S

642
00:22:16,043 --> 00:22:18,779
CULTURALLY CONSISTENT, AND ALSO

643
00:22:18,779 --> 00:22:23,016
RECONSIDER WHO'S ETHICS ARE

644
00:22:23,016 --> 00:22:24,918
BEING PRIORITIZED AND ENSURE

645
00:22:24,918 --> 00:22:25,786
INNOVATIONS ARE ALIGNED WITH

646
00:22:25,786 --> 00:22:26,220
EQUITY.

647
00:22:26,220 --> 00:22:27,521
I REALLY WANT TO THANK ALL THE

648
00:22:27,521 --> 00:22:28,622
INDIVIDUALS THAT JOINED US FOR

649
00:22:28,622 --> 00:22:34,761
THIS RECENT MEETING AT THE

650
00:22:34,761 --> 00:22:36,063
BANBURY INSTITUTE IN COLDSPRING

651
00:22:36,063 --> 00:22:36,430
HARBOR.

652
00:22:36,430 --> 00:22:38,365
IT WAS A MONUMENTAL EVENT IF YOU

653
00:22:38,365 --> 00:22:41,101
CONSIDER THAT THE HISTORY OF

654
00:22:41,101 --> 00:22:43,270
COLDSPRING HARBOR AND ITS ROLE

655
00:22:43,270 --> 00:22:46,773
IN SORT OF PERPETUATING THIS

656
00:22:46,773 --> 00:22:48,542
EUGENICS HISTORY THAT WAS

657
00:22:48,542 --> 00:22:50,043
PERVASIVE IN THE FIELD OF

658
00:22:50,043 --> 00:22:51,545
GENOMICS RESEARCH, TO HAVE AN

659
00:22:51,545 --> 00:22:54,214
EVENT THAT IS INDIGENOUS LED AND

660
00:22:54,214 --> 00:22:55,549
INDIGENOUS -- HUGE NUMBER OF

661
00:22:55,549 --> 00:22:57,084
SCIENTISTS AND SCHOLARS AND

662
00:22:57,084 --> 00:22:59,586
MEDICAL PRACTITIONERS AND OTHERS

663
00:22:59,586 --> 00:23:00,454
COMING TOGETHER TO TALK ABOUT

664
00:23:00,454 --> 00:23:01,688
THIS ISSUE, AND TALK ABOUT

665
00:23:01,688 --> 00:23:02,990
POTENTIAL WAYS FORWARD IF THERE

666
00:23:02,990 --> 00:23:03,423
ARE ANY.

667
00:23:03,423 --> 00:23:05,926
THIS IS LIKE AN AMAZING

668
00:23:05,926 --> 00:23:07,261
BEGINNING OF MULTIPLE

669
00:23:07,261 --> 00:23:10,430
CONVERSATIONS ROW LA RELATED TO

670
00:23:10,430 --> 00:23:12,065
HISTORICAL, ETHICAL, TECHNICAL

671
00:23:12,065 --> 00:23:14,034
QUESTIONS AND INVOLVING BOTH

672
00:23:14,034 --> 00:23:15,669
RECOGNIZED AND UNRECOGNIZED

673
00:23:15,669 --> 00:23:16,203
SOVEREIGN NATIONS.

674
00:23:16,203 --> 00:23:19,306
AND AT THE CENTER OF THIS, WE

675
00:23:19,306 --> 00:23:21,241
FOUND THAT WE NEED TO THINK

676
00:23:21,241 --> 00:23:24,544
ABOUT CULTURAL PROTECTION AND

677
00:23:24,544 --> 00:23:25,712
POLICY SAFEGUARDS.

678
00:23:25,712 --> 00:23:26,880
SORRY, THAT WAS REALLY LONG, BUT

679
00:23:26,880 --> 00:23:33,420
THERE WAS A LOT.

680
00:23:33,420 --> 00:23:34,721
>> YOU ENDED RIGHT ON
TIME.

681
00:23:34,721 --> 00:23:35,656
IT WAS FANTASTIC.

682
00:23:35,656 --> 00:23:39,192
THANK YOU SO MUCH, DR. TSOSIE.

683
00:23:39,192 --> 00:23:40,927
WE ARE GOING TO HOLD OUR

684
00:23:40,927 --> 00:23:42,562
QUESTIONS, WE ARE ON VIDEOCAST,

685
00:23:42,562 --> 00:23:45,198
WE WILL HAVE QUESTIONS AFTER ALL

686
00:23:45,198 --> 00:23:47,734
THREE PRESENTERS SPEAK.

687
00:23:47,734 --> 00:23:49,803
SO THANK YOU FOR THAT GREAT

688
00:23:49,803 --> 00:23:50,570
PRESENTATION, AND NOW I'M

689
00:23:50,570 --> 00:23:53,540
THINKING ABOUT INDIGENOUS

690
00:23:53,540 --> 00:23:54,207
GENOMIC DATA SOVEREIGNTY AS

691
00:23:54,207 --> 00:23:54,608
WELL.

692
00:23:54,608 --> 00:23:55,942
SO VERY EXCITING.

693
00:23:55,942 --> 00:23:59,646
OUR NEXT SPEAKER IS DR. WILCOX,

694
00:23:59,646 --> 00:24:04,584
AND THE FLOOR IS YOURS.

695
00:24:04,584 --> 00:24:06,086
>> I'M JUST CHECKING TO
SEE WHAT

696
00:24:06,086 --> 00:24:10,791
YOU CAN SEE, MAKE SURE THAT MY

697
00:24:10,791 --> 00:24:11,725
SCREEN IS VIEWABLE?

698
00:24:11,725 --> 00:24:13,126
>> IT'S VIEWABLE.

699
00:24:13,126 --> 00:24:13,327
YEP.

700
00:24:13,327 --> 00:24:13,827
THANK YOU.

701
00:24:13,827 --> 00:24:14,528
>> GREAT.

702
00:24:14,528 --> 00:24:17,464
THANKS VERY MUCH.

703
00:24:17,464 --> 00:24:19,566
WELL,

704
00:24:19,566 --> 00:24:30,077
[SPEAKING INDIGENOUS LANGUAGE]

705
00:24:40,721 --> 00:24:42,856
THAT'S JUST A QUICK GREETING TO

706
00:24:42,856 --> 00:24:45,092
YOU ALL, FIRST OF ALL TO ALL OF

707
00:24:45,092 --> 00:24:48,762
THE INDIGENOUS PEOPLES OF WHAT

708
00:24:48,762 --> 00:24:51,698
WE CALL THE TURTLE ISLAND, WE'RE

709
00:24:51,698 --> 00:24:53,467
REFERRING TO MAINLAND NORTH

710
00:24:53,467 --> 00:24:54,668
AMERICA, AS WELL AS EVERYBODY

711
00:24:54,668 --> 00:24:55,769
WHO'S ATTENDING TODAY.

712
00:24:55,769 --> 00:25:00,907
AND OF COURSE I JUST WANTED TO

713
00:25:00,907 --> 00:25:02,175
ACKNOWLEDGE NATIVE AMERICAN

714
00:25:02,175 --> 00:25:05,178
HERITAGE MONTH AND THE

715
00:25:05,178 --> 00:25:10,751
CELEBRATIONS AND THANK KARINA

716
00:25:10,751 --> 00:25:13,587
AND HER TEAM FOR INVITING ME

717
00:25:13,587 --> 00:25:16,857
ALONG TO TALK TO YOU TODAY ABOUT

718
00:25:16,857 --> 00:25:19,292
EXPERIENCES IN NEW ZEALAND.

719
00:25:19,292 --> 00:25:24,064
SO THIS IS PEPEHA, A TRADITIONAL

720
00:25:24,064 --> 00:25:31,171
FORM OF INTRODUCTION AND THEN

721
00:25:31,171 --> 00:25:34,374
I'LL DRAW AN ANALOGY TO GENETICS

722
00:25:34,374 --> 00:25:38,612
CONCEPTS USING THIS PEPEHA, AN

723
00:25:38,612 --> 00:25:41,148
EXAMPLE OF A PEPEHA.

724
00:25:41,148 --> 00:25:48,155
SO HERE WE GO.

725
00:25:48,155 --> 00:25:58,665
[SPEAKING INDIGENOUS LANGUAGE]

726
00:25:59,599 --> 00:26:02,369
SO WHAT WE'RE LOOKING AT HERE,

727
00:26:02,369 --> 00:26:03,570
THE FIRST PART IS THE

728
00:26:03,570 --> 00:26:04,671
ENVIRONMENT OR THE PLACE THAT I

729
00:26:04,671 --> 00:26:05,605
COME FROM.

730
00:26:05,605 --> 00:26:08,275
AND THE SECOND PART OF THAT IS

731
00:26:08,275 --> 00:26:10,911
MY TRIBAL AFFILIATIONS.

732
00:26:10,911 --> 00:26:12,646
AND OUR TRIBES ARE NAMED AFTER

733
00:26:12,646 --> 00:26:15,816
ANCESTORS, SO WE ARE DE16 DEBTSS

734
00:26:15,816 --> 00:26:18,585
OF 

735
00:26:19,085 --> 00:26:21,121
WE ARE DESCENDANTS OF THESE

736
00:26:21,121 --> 00:26:21,588
PEOPLE.

737
00:26:21,588 --> 00:26:22,756
SO WHAT YOU'RE LOOKING AT THERE

738
00:26:22,756 --> 00:26:27,327
IS SOMETHING THAT DESCRIBES THE

739
00:26:27,327 --> 00:26:28,228
ENVIRONMENT I COME FROM AS WELL

740
00:26:28,228 --> 00:26:29,963
AS MY GENEALOGY.

741
00:26:29,963 --> 00:26:32,466
SO FOR THOSE OF YOU WHO HAVE A

742
00:26:32,466 --> 00:26:33,366
BACKGROUND IN GENETICS, THAT'S

743
00:26:33,366 --> 00:26:35,969
THE VERY FIRST EQUATION WE WILL

744
00:26:35,969 --> 00:26:37,737
SEE IN QUANTITATIVE GENETICS

745
00:26:37,737 --> 00:26:40,106
WITH A PHENOTYPE, SOME OF THE

746
00:26:40,106 --> 00:26:43,410
GENOTYPE AND THE ENVIRONMENT.

747
00:26:43,410 --> 00:26:46,913
SO PEPEHA IS THE CONCEPTUAL

748
00:26:46,913 --> 00:26:48,014
EQUIVALENT OF THIS.

749
00:26:48,014 --> 00:26:48,982
THE ONLY DIFFERENCE REALLY IS

750
00:26:48,982 --> 00:26:50,750
THE TIMING OF WHEN THOSE

751
00:26:50,750 --> 00:26:52,052
CONCEPTS OR EQUIVALENTS WERE

752
00:26:52,052 --> 00:26:53,553
ACTUALLY PUT INTO PRACTICE.

753
00:26:53,553 --> 00:26:55,989
THIS PARTICULAR FORM OF PEPEHA,

754
00:26:55,989 --> 00:26:59,392
I'M NOT EXACTLY SURE WHEN IT

755
00:26:59,392 --> 00:27:01,228
FIRST AROSE AMONGST OUR

756
00:27:01,228 --> 00:27:02,128
ANCESTORS MANY HUNDREDS TO

757
00:27:02,128 --> 00:27:03,530
THOUSANDS OF YEARS AGO, BUT I

758
00:27:03,530 --> 00:27:06,933
CAN ASSURE YOU THAT IT'S WELL

759
00:27:06,933 --> 00:27:09,569
AND TRULY SUBSTANTIVELY BEFORE

760
00:27:09,569 --> 00:27:13,940
THE LATE VICTORIAN ERA, BIOMET

761
00:27:13,940 --> 00:27:16,109
CAL GENETICISTS WHO BEGAN

762
00:27:16,109 --> 00:27:17,777
WORKING IN QUANTITATIVE GENETIC

763
00:27:17,777 --> 00:27:20,480
THEORY VERY, VERY EARLY IN THE

764
00:27:20,480 --> 00:27:22,682
PACE FROM A MODERN GENETICS

765
00:27:22,682 --> 00:27:23,984
SCIENCE PERSPECTIVE.

766
00:27:23,984 --> 00:27:25,752
PEOPLE HAD SIMILAR CONCEPTS BUT

767
00:27:25,752 --> 00:27:27,287
WELL BEFORE.

768
00:27:27,287 --> 00:27:31,758
THESE CONCEPTS WERE FIRST AR

769
00:27:31,758 --> 00:27:32,759
ARTICULATED IN THE WESTERN

770
00:27:32,759 --> 00:27:36,997
SCIENCE CONTEXT, SO JUST A

771
00:27:36,997 --> 00:27:39,533
LITTLE BIT MORE ABOUT MYSELF.

772
00:27:39,533 --> 00:27:41,601
WE'RE AT THE INTERFACE OF GENE

773
00:27:41,601 --> 00:27:45,438
TECHNOLOGIES AND MAORI PEOPLES

774
00:27:45,438 --> 00:27:47,274
FOR OVER 20 YEARS NOW, INCLUDING

775
00:27:47,274 --> 00:27:51,278
WORKING FOR MY OWN TRIBE, AS

776
00:27:51,278 --> 00:27:53,313
WELL AS A WHOLE BUNCH OF OTHER

777
00:27:53,313 --> 00:27:54,848
ACTIVITIES THAT I'LL GO INTO IN

778
00:27:54,848 --> 00:27:58,785
TERMS OF ADVISORY AS WELL AS

779
00:27:58,785 --> 00:27:59,719
EDUCATION, ROLES, DEPARTMENT

780
00:27:59,719 --> 00:28:05,025
ROLES THAT ARE MAORI-SPECIFIC.

781
00:28:05,025 --> 00:28:07,527
INCLUDING AT THE UNIVERSITY OF

782
00:28:07,527 --> 00:28:09,829
OTAGO WHERE I WORK, I HAVE A

783
00:28:09,829 --> 00:28:11,131
ROLE THAT BRINGS IN THESE

784
00:28:11,131 --> 00:28:15,402
CONCEPTS OF HEREDITARY -- IN

785
00:28:15,402 --> 00:28:19,339
GENETICS PAPERS AND WE ASSIST

786
00:28:19,339 --> 00:28:22,275
THEM, TO WORK WITH MAORI

787
00:28:22,275 --> 00:28:23,276
COMMUNITIES BASED ON SOME OF THE

788
00:28:23,276 --> 00:28:24,578
FRAME WORKS THAT I'LL TALK ABOUT

789
00:28:24,578 --> 00:28:25,011
TODAY.

790
00:28:25,011 --> 00:28:27,314
SOME OTHER THINGS THAT I WORK

791
00:28:27,314 --> 00:28:35,388
ON, I'LL TALK ABOUT -- AS WELL

792
00:28:35,388 --> 00:28:39,459
AS A GENETICS PLATFORM THAT'S

793
00:28:39,459 --> 00:28:41,428
GOVERNED BY -- THERE'S

794
00:28:41,428 --> 00:28:42,095
INDIGENOUS GOVERNMENTS BUILT

795
00:28:42,095 --> 00:28:43,396
INTO THAT PLATFORM WHERE

796
00:28:43,396 --> 00:28:46,666
ANALYSES OF DATA ARE TRANSPARENT

797
00:28:46,666 --> 00:28:48,635
TO COMMUNITY MEMBERS WHO HAVE

798
00:28:48,635 --> 00:28:50,103
GOVERNMENTS' RIGHTS.

799
00:28:50,103 --> 00:28:58,144
AND ALSO INVOLVED FOR MOLECULAR

800
00:28:58,144 --> 00:29:00,480
DISCOVERY WHERE I'M DEPUTY

801
00:29:00,480 --> 00:29:02,215
DIRECTOR, AND THAT HAS A

802
00:29:02,215 --> 00:29:03,650
SUBSTANTIVE AMOUNT OF WORK NOW

803
00:29:03,650 --> 00:29:07,020
WORKING ON DISEASES THAT IMPACT

804
00:29:07,020 --> 00:29:09,756
OUR PEOPLE IN TERMS OF

805
00:29:09,756 --> 00:29:12,058
PARTICULARLY METABOLIC CANCER

806
00:29:12,058 --> 00:29:13,159
AND INFECTIOUS CONDITIONS.

807
00:29:13,159 --> 00:29:14,461
SO WHAT I'LL TALK ABOUT, I'LL

808
00:29:14,461 --> 00:29:17,731
GIVE SOME BACKGROUND INTO THE

809
00:29:17,731 --> 00:29:19,599
MAORI WORLD, I'LL TALK ABOUT

810
00:29:19,599 --> 00:29:23,436
THESE THINGS, TIKANGA MAORI,

811
00:29:23,436 --> 00:29:24,938
WHAT THOSE THINGS ARE, HOW

812
00:29:24,938 --> 00:29:26,272
THEY'RE RELEVANT AND HOW WE

813
00:29:26,272 --> 00:29:28,241
APPLY THEM AND STUDY DESIGN AND

814
00:29:28,241 --> 00:29:30,310
TO DEVELOP YEE KNOW MIBG

815
00:29:30,310 --> 00:29:33,046
RESOURCES.

816
00:29:33,046 --> 00:29:36,549
AND THEN I TALKED ABOUT -- OR AN

817
00:29:36,549 --> 00:29:40,020
EXAMPLE OF THAT WHEN I GAVE MY

818
00:29:40,020 --> 00:29:42,255
PAPER HERE, HOW DOES IT INFORM

819
00:29:42,255 --> 00:29:44,324
GENETIC CO-DEVELOPMENT, AND

820
00:29:44,324 --> 00:29:45,191
PARTICULARLY HOW WE'RE USING

821
00:29:45,191 --> 00:29:47,494
THAT TO IMPROVE OUR ABILITY TO

822
00:29:47,494 --> 00:29:49,663
ESTIMATE DISEASE RISK.

823
00:29:49,663 --> 00:29:50,964
AND I'LL FINISH OFF ON THAT

824
00:29:50,964 --> 00:29:51,297
POINT.

825
00:29:51,297 --> 00:29:56,670
SO A LITTLE BIT OF BACKGROUND.

826
00:29:56,670 --> 00:30:01,775
MAORI FIRST PEAKED WHERE THE

827
00:30:01,775 --> 00:30:05,111
FIRST HUMANS TO ARRIVE AROUND

828
00:30:05,111 --> 00:30:07,747
800 YEARS AGO, AND I'LL SAY IT

829
00:30:07,747 --> 00:30:09,049
WAS THE LAST SIGNIFICANT LAND

830
00:30:09,049 --> 00:30:11,885
MASS TO BE OCCUPIED BY HOMO SAIP

831
00:30:11,885 --> 00:30:12,886
YENS.

832
00:30:12,886 --> 00:30:14,621
MOST PEOPLE WERE OUR ANCESTORS

833
00:30:14,621 --> 00:30:20,293
WHO CAME FROM POLYNESIA, AND

834
00:30:20,293 --> 00:30:22,395
THOSE IN TURN IT MY GREATED OUT

835
00:30:22,395 --> 00:30:33,406
MIGRATED TOPLACES TO EASTERN POA

836
00:30:34,741 --> 00:30:37,077
WHERE THEY RADIATED AROUND THE

837
00:30:37,077 --> 00:30:39,279
PACIFIC OCEAN AND EVEN INTO THE

838
00:30:39,279 --> 00:30:40,046
AMERICAS.

839
00:30:40,046 --> 00:30:44,184
THEY BROUGHT WITH THEM AN

840
00:30:44,184 --> 00:30:45,518
EASTERN POLYNESIAN CULTURE AND

841
00:30:45,518 --> 00:30:46,586
LANGUAGE THAT WENT THROUGH A

842
00:30:46,586 --> 00:30:50,423
PERIOD OF EVOLUTION IN THIS

843
00:30:50,423 --> 00:30:50,957
COUNTRY.

844
00:30:50,957 --> 00:30:56,329
SUBSEQUENT TO THOSE ORIGINAL

845
00:30:56,329 --> 00:31:01,267
RIVALS, AND IT HAS EVOLVED INTO

846
00:31:01,267 --> 00:31:04,637
WHAT WE NOW REFER TO AS THE

847
00:31:04,637 --> 00:31:11,111
CLASSIC MAORI MULTICULTURE AND

848
00:31:11,111 --> 00:31:14,047
FAST FORWARD TO THE LATE

849
00:31:14,047 --> 00:31:16,349
1700s, EARLY 1800s WITH THE

850
00:31:16,349 --> 00:31:19,986
ARRIVAL OF PEOPLE OF EUROPEAN

851
00:31:19,986 --> 00:31:23,990
DECENT, AND THAT CREATED

852
00:31:23,990 --> 00:31:26,626
TENSIONS, WHEN THEY ARRIVED,

853
00:31:26,626 --> 00:31:29,596
THEY BROUGHT FIREARMS AND NEW

854
00:31:29,596 --> 00:31:33,967
METHODS TO BE ABLE TO KILL EACH

855
00:31:33,967 --> 00:31:35,068
OTHER, AND AS A RESULT OF THAT,

856
00:31:35,068 --> 00:31:37,370
WE HAD THE SIGNING OF THE TREATY

857
00:31:37,370 --> 00:31:40,974
OF WAITANGI BACK IN 1840 BETWEEN

858
00:31:40,974 --> 00:31:42,175
TRIBAL LEADERS AND

859
00:31:42,175 --> 00:31:43,710
REPRESENTATIVES OF THE BRITISH

860
00:31:43,710 --> 00:31:45,779
GOVERNMENT AS IT WAS BACK THEN.

861
00:31:45,779 --> 00:31:48,848
THAT OPENED THE DOOR TO A LARGE

862
00:31:48,848 --> 00:31:50,049
INFLUX, AND I HAVEN'T FINISHED

863
00:31:50,049 --> 00:31:51,451
THESE WORDS HERE, BUT LARGE

864
00:31:51,451 --> 00:31:53,119
INFLUX OF COLONISTS FROM

865
00:31:53,119 --> 00:31:58,124
BRITAIN.

866
00:31:58,124 --> 00:32:01,094
IN THE 1860s, THEY

867
00:32:01,094 --> 00:32:02,495
UNDERTOOK -- THE GOVERNMENT --

868
00:32:02,495 --> 00:32:03,830
THE COLONIAL GOVERNMENT

869
00:32:03,830 --> 00:32:07,433
UNDERTOOK A SUSTAINED PERIOD OF

870
00:32:07,433 --> 00:32:11,037
LAND CON  CONFISCATION, ALONG WH

871
00:32:11,037 --> 00:32:13,006
THE DISEASES THAT THEY BROUGHT,

872
00:32:13,006 --> 00:32:14,874
ALONG WITH THE FIREARMS, ET

873
00:32:14,874 --> 00:32:19,579
CETERA, ET CETERA, TO SPICE

874
00:32:19,579 --> 00:32:23,616
PEOPLE FROM THEIR LANDS, AND

875
00:32:23,616 --> 00:32:28,888
THIS CAUSED QUITE A SUBSTANTIVE

876
00:32:28,888 --> 00:32:31,391
DISRUPTION TO THE MAORI WORLD.

877
00:32:31,391 --> 00:32:35,461
AND TODAY, WE HAVE ALMOST A

878
00:32:35,461 --> 00:32:38,398
MILLION PEOPLE OF MAORI DESCENT

879
00:32:38,398 --> 00:32:41,034
IN THIS COUNTRY, IT HAD

880
00:32:41,034 --> 00:32:43,269
BOTTLENECKED TO AROUND 40,

881
00:32:43,269 --> 00:32:46,606
50,000 PEOPLE OF THE EARLY

882
00:32:46,606 --> 00:32:47,040
1900s.

883
00:32:47,040 --> 00:32:48,908
THE POPULATION HAS GROWN

884
00:32:48,908 --> 00:32:50,977
SUBSTANTIALLY AND IS CONTINUING

885
00:32:50,977 --> 00:32:54,581
TO GROW, MOST OF THOSE PEOPLE

886
00:32:54,581 --> 00:32:57,650
ARE IDENTIFIED CULTURALLY AS

887
00:32:57,650 --> 00:32:58,651
BEING MAORI.

888
00:32:58,651 --> 00:33:00,820
THEN IN THE LAST 25 TO 30 YEARS,

889
00:33:00,820 --> 00:33:05,291
WE'VE UNDERGONE A PERIOD OF

890
00:33:05,291 --> 00:33:09,429
QUITE STRANG PARALLELLED WITH

891
00:33:09,429 --> 00:33:11,097
TRIBAL BASED SET EMMENTS,

892
00:33:11,097 --> 00:33:12,098
LITIGATION ARISING FROM THE

893
00:33:12,098 --> 00:33:15,034
HISTORIC BREECHES OF THE

894
00:33:15,034 --> 00:33:17,871
TERRITORIY OF TAITANGI, STILL

895
00:33:17,871 --> 00:33:19,305
GIVING RISE TO TEMPORARY

896
00:33:19,305 --> 00:33:20,406
GRIEVANCES, BUT AT LEAST THEY'RE

897
00:33:20,406 --> 00:33:22,275
TRYING TO ADDRESS SOME OF THOSE

898
00:33:22,275 --> 00:33:23,176
HISTORIC GRIEVANCES.

899
00:33:23,176 --> 00:33:25,044
SO WE'VE SEEN AN INCREASED

900
00:33:25,044 --> 00:33:31,217
PRESENCE OF MAORI IN THEIR

901
00:33:31,217 --> 00:33:32,518
PRIMARY -- WE HAVE SOMETHING

902
00:33:32,518 --> 00:33:36,756
LIKE THE MAORI ECONOMY IS

903
00:33:36,756 --> 00:33:39,058
SOMETHING LIKE $70 BILLION WORTH

904
00:33:39,058 --> 00:33:40,293
OF ASSETS BUT ABOUT A THIRD OF

905
00:33:40,293 --> 00:33:43,963
THAT IS TIED UP IN PRIMARY

906
00:33:43,963 --> 00:33:47,800
SECTOR, AND OF THAT $70 BILLION

907
00:33:47,800 --> 00:33:49,435
OF ASSETS THAT GENERATE

908
00:33:49,435 --> 00:33:51,838
SOMETHING ABOUT $10 BILLION PER

909
00:33:51,838 --> 00:33:54,374
ANUM TO GROSS DOMESTIC PRODUCT.

910
00:33:54,374 --> 00:33:56,342
HEALTH STATUS IS GENERALLY POOR,

911
00:33:56,342 --> 00:34:01,014
NOT UNUSUAL.

912
00:34:01,014 --> 00:34:02,649
SADLY, THERE'S A LOT OF

913
00:34:02,649 --> 00:34:04,851
PARALLELS BETWEEN HEALTH STATUS

914
00:34:04,851 --> 00:34:07,787
OF NATIVE PEOPLES AND THE UNITED

915
00:34:07,787 --> 00:34:09,889
STATES AND TERRITORIES.

916
00:34:09,889 --> 00:34:11,090
AND I'LL ALSO POINT OUT THAT WE

917
00:34:11,090 --> 00:34:14,060
ARE CLOSELY RELATED TO

918
00:34:14,060 --> 00:34:17,096
HAWAIIANS, WHO ARE ALSO EASTERN

919
00:34:17,096 --> 00:34:19,299
POLYNESIANS IN THE HAWAIIAN

920
00:34:19,299 --> 00:34:21,467
ISLANDS AND WERE POPULATED BY

921
00:34:21,467 --> 00:34:23,236
EASTERN POLYNESIAN NAVIGATORS

922
00:34:23,236 --> 00:34:24,537
AROUND ABOUT THE SAME TIME.

923
00:34:24,537 --> 00:34:30,543
SO WE SHARE A LOT IN TERMS OF

924
00:34:30,543 --> 00:34:33,513
ANCESTRY, AND OUR SOCIAL AND

925
00:34:33,513 --> 00:34:34,480
BIOLOGICAL DETERMINANTS OF

926
00:34:34,480 --> 00:34:35,381
HEALTH.

927
00:34:35,381 --> 00:34:39,285
SO WE DO HAVE HERITABLE

928
00:34:39,285 --> 00:34:39,752
CONDITIONS.

929
00:34:39,752 --> 00:34:41,287
YOU PROBABLY READ THE WORDS

930
00:34:41,287 --> 00:34:44,924
THERE, CARDIOVASCULAR DISEASES,

931
00:34:44,924 --> 00:34:47,627
TYPE 2 DIABETES, AS WELL AS SOME

932
00:34:47,627 --> 00:34:48,394
MENDELIAN CONDITIONS WHICH TEND

933
00:34:48,394 --> 00:34:52,565
TO BE MORE PREVALENT IN THOSE

934
00:34:52,565 --> 00:34:56,602
CONDITIONS WITHIN FAMILIES.

935
00:34:56,602 --> 00:34:57,603
OVERREPRESENTED AND VIRTUALLY

936
00:34:57,603 --> 00:35:00,106
ONE OF THE NEGATIVE HEALTH

937
00:35:00,106 --> 00:35:00,873
STATISTICS, AND I'VE ALSO

938
00:35:00,873 --> 00:35:02,642
MENTIONED THAT WE DO HAVE

939
00:35:02,642 --> 00:35:03,943
MENDELIAN CONDITIONS.

940
00:35:03,943 --> 00:35:06,546
ELSEWHERE IS THIS UNIQUE GENETIC

941
00:35:06,546 --> 00:35:10,183
ARCHITECTURE THAT WE SHARED WITH

942
00:35:10,183 --> 00:35:13,119
POLYNESIANS INCLUDING

943
00:35:13,119 --> 00:35:13,786
HAWAIIANs.

944
00:35:13,786 --> 00:35:16,422
THEY HAVE AN SES TREA-SPECIFIC

945
00:35:16,422 --> 00:35:18,925
ALLELES OR ETIOLOGIES, WHICH

946
00:35:18,925 --> 00:35:20,560
SOMETIMES IT'S UNIQUE GENES OR

947
00:35:20,560 --> 00:35:24,263
UNIQUE VARIANTS AND GENES

948
00:35:24,263 --> 00:35:25,365
ASSOCIATED WITH THESE VARIOUS

949
00:35:25,365 --> 00:35:25,798
CONDITIONS.

950
00:35:25,798 --> 00:35:32,138
SO I'LL TALK ABOUT IT. IKANGA

951
00:35:32,138 --> 00:35:35,108
MAORI, BASICALLY BIOETHICS.

952
00:35:35,108 --> 00:35:36,409
SO THOSE ARE THE CULTURAL NORMS

953
00:35:36,409 --> 00:35:38,611
THAT GOVERN OUR BEHAVIOR, CUSS

954
00:35:38,611 --> 00:35:40,346
TOE MARE VALUES AND PRACTICES,

955
00:35:40,346 --> 00:35:42,749
FROM WHICH WE DERIVE SOCIAL

956
00:35:42,749 --> 00:35:45,718
CONTROL, AS WELL AS THOSEST CAL

957
00:35:45,718 --> 00:35:47,787
AND MORAL PRACTICES, WHICH

958
00:35:47,787 --> 00:35:49,989
INCLUDE THINGS LIKE RESEARCH AND

959
00:35:49,989 --> 00:35:53,793
HOW GENOMIC RESEARCH IS

960
00:35:53,793 --> 00:35:54,093
UNDERTAKEN.

961
00:35:54,093 --> 00:36:00,366
THOSE ETHICAL FRAME WORKS, WELL,

962
00:36:00,366 --> 00:36:01,901
MAORI BIOETHICS ESSENTIALLY IS

963
00:36:01,901 --> 00:36:05,738
UNDERPINNED BY THIS THING CALLED

964
00:36:05,738 --> 00:36:07,373
TIKANGA, CULTURAL CONCEPTS AND

965
00:36:07,373 --> 00:36:09,575
VALUES THAT ARE FUNDAMENTAL TO

966
00:36:09,575 --> 00:36:12,512
RESEARCH AND GENES, THINGS LIKE

967
00:36:12,512 --> 00:36:17,884
MODI, WHI -- MAURI, WHICH TALKST

968
00:36:17,884 --> 00:36:20,853
LIFE ESSENCE, MANA,

969
00:36:20,853 --> 00:36:25,425
POWER/AUTHORITY, AND THE OTHER

970
00:36:25,425 --> 00:36:27,860
IS ENVIRONMENTAL GUARDIANSHIP

971
00:36:27,860 --> 00:36:30,563
AND MANAGEMENT FOR SUSTAINED

972
00:36:30,563 --> 00:36:31,998
MANAGEMENT FOR FUTURE

973
00:36:31,998 --> 00:36:35,701
GENERATIONS.

974
00:36:35,701 --> 00:36:37,170
SO THOSE CULTURAL CONCEPTS ARE

975
00:36:37,170 --> 00:36:39,705
THE CUES THAT PROVIDE AN

976
00:36:39,705 --> 00:36:43,042
UNDERPINNING CULTURAL LOGIC.

977
00:36:43,042 --> 00:36:45,044
IT DICTATES HOW WE SHOULD ENGAGE

978
00:36:45,044 --> 00:36:47,447
AS RESEARCHERS, HOW WE SHOULD

979
00:36:47,447 --> 00:36:49,315
ENGAGE WITH OUR INDIGENOUS

980
00:36:49,315 --> 00:36:51,150
COMMUNITIES OR REMOTE MAORI

981
00:36:51,150 --> 00:36:52,351
COMMUNITIES IN A CULTURALLY

982
00:36:52,351 --> 00:36:53,786
ACCEPTABLE MANNER, AND THOSE

983
00:36:53,786 --> 00:36:55,221
QUOTES WERE TAKEN FROM A

984
00:36:55,221 --> 00:36:56,656
GUIDELINE THAT WE DEVELOPED A

985
00:36:56,656 --> 00:37:00,927
NUMBER OF YEARS AGO WHILE

986
00:37:00,927 --> 00:37:08,034
WORKING WITH KIN SPECIES DNA,

987
00:37:08,034 --> 00:37:09,769
SPECIES OF EMOTIONAL VALUE WHICH

988
00:37:09,769 --> 00:37:15,174
ARE TYPICALLY THOSE SPECIES,

989
00:37:15,174 --> 00:37:17,276
FROM THE TIME THEY ARRIVED IN

990
00:37:17,276 --> 00:37:22,048
NEW ZEALAND, 800 OR SO YEARS

991
00:37:22,048 --> 00:37:23,916
AGO, BUT THERE'S THIS TERM, AND

992
00:37:23,916 --> 00:37:25,751
IT'S NOT A SWEAR WORD WHEN I

993
00:37:25,751 --> 00:37:27,286
PRONOUNCE IT, SO PLEASE DON'T BE

994
00:37:27,286 --> 00:37:32,758
PUT OFF BY THAT, BUT IT'S THE

995
00:37:32,758 --> 00:37:36,629
TERM OF WHAKAPAPA AND IT

996
00:37:36,629 --> 00:37:38,231
BASICALLY REFERS TO GENE YOLG

997
00:37:38,231 --> 00:37:43,269
ANGENEALOGYAND THE STORY OF THOE

998
00:37:43,269 --> 00:37:45,171
COME BEFORE US BUT ALSO TALKS

999
00:37:45,171 --> 00:37:46,939
ABOUT RELATIONSHIPS BETWEEN

1000
00:37:46,939 --> 00:37:49,242
HUMAN AND NON-HUMAN, ANIMATE AND

1001
00:37:49,242 --> 00:37:52,078
NON-ANIMATE AND IS ALSO A

1002
00:37:52,078 --> 00:37:53,513
METAPHOR FOR CREATION IN SOME

1003
00:37:53,513 --> 00:37:53,980
WAYS.

1004
00:37:53,980 --> 00:37:55,081
I'LL TALK ABOUT THEM IN A LITTLE

1005
00:37:55,081 --> 00:37:58,151
MORE DETAIL A BIT FURTHER ON,

1006
00:37:58,151 --> 00:37:59,785
BECAUSE IT IS A PRACTICE, IT

1007
00:37:59,785 --> 00:38:04,690
TALKS ABOUT A PRACTICE OF

1008
00:38:04,690 --> 00:38:06,592
MAINTAINING KNOWLEDGE ANCESTORS,

1009
00:38:06,592 --> 00:38:07,460
ANCESTORS' NAMES AND THE STORIES

1010
00:38:07,460 --> 00:38:10,096
THAT CAME WITH THEM.

1011
00:38:10,096 --> 00:38:11,831
THESE OTHER TERMS, I'VE ALREADY

1012
00:38:11,831 --> 00:38:14,133
TALKED ABOUT THE SECOND SET OF

1013
00:38:14,133 --> 00:38:17,203
THREE ON THAT LIST, BUT

1014
00:38:17,203 --> 00:38:20,606
MATAURANGA IS INDIGENOUS

1015
00:38:20,606 --> 00:38:21,174
KNOWLEDGE.

1016
00:38:21,174 --> 00:38:27,813
SO THINGS LIKE THIS TERM TAPU,

1017
00:38:27,813 --> 00:38:34,587
SACRED OR RESTRICTED, THEY HAVE

1018
00:38:34,587 --> 00:38:38,324
HEALTH INFORMATION, AS WELL AS

1019
00:38:38,324 --> 00:38:42,929
GENOMIC INFORMATION, AND THE TOP

1020
00:38:42,929 --> 00:38:45,464
MEANS IT'S PUBLICLY AVAILABLE

1021
00:38:45,464 --> 00:38:49,168
BUT IS SOMETHING THAT IS KEPT

1022
00:38:49,168 --> 00:38:51,671
PRIVATE, AND ACCESS TO IT IS

1023
00:38:51,671 --> 00:38:53,573
UNDER STRICT CONDITIONS.

1024
00:38:53,573 --> 00:38:58,477
SO WE HAVE THESE TIKANGA-BASED

1025
00:38:58,477 --> 00:39:00,780
ETHICAL FRAME WORKS IN A

1026
00:39:00,780 --> 00:39:02,882
RESEARCH CONTEXT TO ENSURE THAT

1027
00:39:02,882 --> 00:39:05,384
THIS CULTURALLY APPROPRIATE

1028
00:39:05,384 --> 00:39:07,687
CONTEXTUALIZATION AND GUIDANCE

1029
00:39:07,687 --> 00:39:09,222
FOR ACTIVITIES SUCH AS RESEARCH

1030
00:39:09,222 --> 00:39:11,857
BUT NOT ONLY RESEARCH, A WHOLE

1031
00:39:11,857 --> 00:39:14,694
BUNCH OF OTHER ACTIVITIES, THEY

1032
00:39:14,694 --> 00:39:18,998
PROVIDE US WITH A FRAMEWORK TO

1033
00:39:18,998 --> 00:39:21,267
UNDERTAKE AN EVALUATION OF STUDY

1034
00:39:21,267 --> 00:39:24,237
DESIGN AS WELL AS CONDUCT OF

1035
00:39:24,237 --> 00:39:27,206
STUDY THAT ARE ROOTED IN OUR VAL

1036
00:39:27,206 --> 00:39:31,477
OVALUES, PRINCIPLES AN CUSTOMS.

1037
00:39:31,477 --> 00:39:34,447
IF THOSE TIKANGA SHOULD BE

1038
00:39:34,447 --> 00:39:36,082
APPLIED VERY MUCH AT THE

1039
00:39:36,082 --> 00:39:37,617
RESEARCH CON ACCEPT

1040
00:39:37,617 --> 00:39:39,252
SEWELLIZATION PHRASE AND LAST

1041
00:39:39,252 --> 00:39:41,354
THROUGHOUT THE LONGEVITY OF A

1042
00:39:41,354 --> 00:39:43,756
RESEARCH PROJECT AND THEN

1043
00:39:43,756 --> 00:39:46,926
BEYOND.

1044
00:39:46,926 --> 00:39:48,661
MAORI KNOWLEDGE, MODERN FOR

1045
00:39:48,661 --> 00:39:49,996
COMBINED KNOWLEDGE OF OUR POLL

1046
00:39:49,996 --> 00:39:55,134
KNEE SHAB AN SES FORES.

1047
00:39:55,134 --> 00:39:56,669
MAORI, LIVING IN THE ENVIRONMENT

1048
00:39:56,669 --> 00:39:59,972
INCLUDE THINGS LIKE OUR

1049
00:39:59,972 --> 00:40:01,841
LANGUAGE, KNOWLEDGE OF CULTURAL

1050
00:40:01,841 --> 00:40:04,677
PRACTICE, HEALING, FISHING,

1051
00:40:04,677 --> 00:40:08,281
CULTIVATION, AND MAORI WERE

1052
00:40:08,281 --> 00:40:10,449
EXTREMELY GOOD AGRICULTURALISTS

1053
00:40:10,449 --> 00:40:12,118
AND THE PERIOD IMMEDIATELY AFTER

1054
00:40:12,118 --> 00:40:13,986
THE EUROPEANS JUST ARRIVED WERE

1055
00:40:13,986 --> 00:40:22,128
ABLE TO ADEPT, USE SPECIES AND

1056
00:40:22,128 --> 00:40:23,296
BECOME AND EXPORT CROPS.

1057
00:40:23,296 --> 00:40:25,598
THEY WERE THE FIRST PEOPLE WHO

1058
00:40:25,598 --> 00:40:26,699
ACTUALLY -- ANCESTORS OF THE

1059
00:40:26,699 --> 00:40:29,368
FIRST PEOPLE WHO ESTABLISHED NEW

1060
00:40:29,368 --> 00:40:30,670
ZEALAND AS AN AGRICULTURAL

1061
00:40:30,670 --> 00:40:35,775
NATION, WE WERE ABLE TO EXPORT

1062
00:40:35,775 --> 00:40:36,709
PRODUCE AROUND THE WORLD AND

1063
00:40:36,709 --> 00:40:37,877
PARTICULARLY TO AUSTRALIA.

1064
00:40:37,877 --> 00:40:44,250
SO THAT COMPOSES PART OF MAORI

1065
00:40:44,250 --> 00:40:45,885
LANGUAGE, AND IT INCLUDES AND IS

1066
00:40:45,885 --> 00:40:47,653
UNDERPINNED BY VALUES OF AND

1067
00:40:47,653 --> 00:40:48,087
CULTURE.

1068
00:40:48,087 --> 00:40:50,156
THIS SLIDE JUST REALLY REFLECTS

1069
00:40:50,156 --> 00:40:55,094
THE FACT THAT MAORI IS WRAPPED

1070
00:40:55,094 --> 00:40:59,031
WITHIN TIKANG, TIKANGA IS HOW TO

1071
00:40:59,031 --> 00:41:02,435
APPLY IT AND THE KNOWLEDGE

1072
00:41:02,435 --> 00:41:05,838
ITSELF SITS WITHIN THAT

1073
00:41:05,838 --> 00:41:07,807
FRAMEWORK AROUND HOW TO

1074
00:41:07,807 --> 00:41:08,341
APPROPRIATELY UTILIZE IT.

1075
00:41:08,341 --> 00:41:10,776
I JUST WANT TO POINT OUT THIS

1076
00:41:10,776 --> 00:41:21,387
QUOTE HERE WH FROM MAZZOCHI, CAT

1077
00:41:21,387 --> 00:41:22,922
EXTRACT JUST THOSE PARTS OF

1078
00:41:22,922 --> 00:41:23,823
TRADITIONAL KNOWLEDGE THAT SEEM

1079
00:41:23,823 --> 00:41:25,758
TO MEASURE UP TO SCIENTIFIC

1080
00:41:25,758 --> 00:41:28,761
CRITERIA AND IGNORE THE REST.

1081
00:41:28,761 --> 00:41:30,830
YOU CAN'T EXTRACT JUST THOSE

1082
00:41:30,830 --> 00:41:32,365
PARTS OF TRADITIONAL KNOWLEDGE,

1083
00:41:32,365 --> 00:41:34,567
THAT SAME TO MEASURE UP TO SEE

1084
00:41:34,567 --> 00:41:42,775
OUR SCIENTIFIC CRITERIA AND --

1085
00:41:42,775 --> 00:41:45,978
SO WE HAVE DEVELOPED TIKANGA

1086
00:41:45,978 --> 00:41:47,079
FRAME WORKS OVER 20 YEARS

1087
00:41:47,079 --> 00:41:49,148
WORKING IN THAT SPACE, AND THEN

1088
00:41:49,148 --> 00:41:53,853
APPLYING THEM, PARTICULARLY

1089
00:41:53,853 --> 00:41:54,954
INVOLVING GENE TECHNOLOGIES.

1090
00:41:54,954 --> 00:41:56,055
HERE ARE SOME OF THE FRAME

1091
00:41:56,055 --> 00:41:56,589
WORKS.

1092
00:41:56,589 --> 00:41:58,657
MOST OF THESE ONES, I'VE WORKED

1093
00:41:58,657 --> 00:42:00,860
ON, SOME I HAVEN'T, BUT WE

1094
00:42:00,860 --> 00:42:03,929
DEVELOPED A FRAMEWORK IN 2008,

1095
00:42:03,929 --> 00:42:09,869
WE PUBLISHED THE AROTURUKI

1096
00:42:09,869 --> 00:42:13,072
FRAMEWORK WHICH IS REALLY AROUND

1097
00:42:13,072 --> 00:42:16,342
MODIFICATION WORKING IN

1098
00:42:16,342 --> 00:42:16,876
INDIGENOUS COMMUTES.

1099
00:42:16,876 --> 00:42:22,014
ABOUT THE SAME TIME, A

1100
00:42:22,014 --> 00:42:28,387
WELL-KNOWN ACADEMIC AND

1101
00:42:28,387 --> 00:42:29,255
INTELLECTUAL -- THERE'S A BUNCH

1102
00:42:29,255 --> 00:42:30,356
OF OTHER FRAME WORKS.

1103
00:42:30,356 --> 00:42:33,526
I'LL TALK ABOUT THE TE MATA IRA

1104
00:42:33,526 --> 00:42:35,728
FRAMEWORK IN A LITTLE BIT OF

1105
00:42:35,728 --> 00:42:36,061
DETAIL HERE.

1106
00:42:36,061 --> 00:42:40,533
THAT WAS A PROJECT LED BY MAUI

1107
00:42:40,533 --> 00:42:41,967
HUDSON, BUT IT INVOLVED A NUMBER

1108
00:42:41,967 --> 00:42:50,509
OF OTHER TRIBAL LEADERS, BOTH

1109
00:42:50,509 --> 00:42:53,045
CHIEFS OF THEIR TRIBES, THEIR

1110
00:42:53,045 --> 00:42:56,315
RESPECTED TRIBAL GROUPS, BUT

1111
00:42:56,315 --> 00:42:59,084
ALSO WELL-KNOWN NATIONALLY FOR

1112
00:42:59,084 --> 00:43:02,922
THEIR BE ACTIVISM AND PROMOTION

1113
00:43:02,922 --> 00:43:05,324
OF MAORI CULTURE.

1114
00:43:05,324 --> 00:43:11,096
AS WELL AS THE GRAND OLD LADY

1115
00:43:11,096 --> 00:43:14,733
HERE, DR. WAIORA PORT WHO WORKED

1116
00:43:14,733 --> 00:43:16,268
IN THE AREA OF GENETIC

1117
00:43:16,268 --> 00:43:24,810
COUNSELING AND DEVELOPING

1118
00:43:24,810 --> 00:43:26,879
MULTI- -- THE CHAIM WORK SORT OF

1119
00:43:26,879 --> 00:43:29,615
LOOKS ESSENTIALLY MODELS THE

1120
00:43:29,615 --> 00:43:30,749
RESEARCH PRACTICE.

1121
00:43:30,749 --> 00:43:32,284
AN IDEA IS CONCEIVED,

1122
00:43:32,284 --> 00:43:33,853
PREPARATION FOR DIALOGUE WITH

1123
00:43:33,853 --> 00:43:35,921
THE MAORI COMMUNITIES, INTO A

1124
00:43:35,921 --> 00:43:37,656
CONSULTATION PHASE, AND THEN

1125
00:43:37,656 --> 00:43:43,629
DURIDOING RESEARCH, AND AFTER TE

1126
00:43:43,629 --> 00:43:44,930
RESEARCH IS COMPLETED,

1127
00:43:44,930 --> 00:43:46,131
TRANSLATING THE RESULTS BACK TO

1128
00:43:46,131 --> 00:43:46,966
COMMUNITIES.

1129
00:43:46,966 --> 00:43:51,604
SO EACH ONE OF THOSE PROPOSAL,

1130
00:43:51,604 --> 00:43:53,038
WE HAVE TO CONSIDER QUESTIONS

1131
00:43:53,038 --> 00:43:54,340
THAT PERTAIN TO EACH ONE OF

1132
00:43:54,340 --> 00:43:55,875
THOSE PHASES.

1133
00:43:55,875 --> 00:43:59,812
SO FOR EXAMPLE, IN THE

1134
00:43:59,812 --> 00:44:02,948
CONSULTATION PHASE, THERE'S ONE

1135
00:44:02,948 --> 00:44:04,917
ASPECT WE CALL KAWA, WHICH IS

1136
00:44:04,917 --> 00:44:07,052
THE WAY WE DO THINGS, WHAT TYPE

1137
00:44:07,052 --> 00:44:08,587
OF RESEARCHERS NEED TO ANSWER

1138
00:44:08,587 --> 00:44:11,657
THESE OR ADDRESS THESE QUESTIONS

1139
00:44:11,657 --> 00:44:12,992
WHATEVER TYPE OF RELATIONSHIP

1140
00:44:12,992 --> 00:44:17,596
THEY'RE LOOKING FOR, WHAT

1141
00:44:17,596 --> 00:44:18,998
PRINCIPLES INFORM THE RESEARCH

1142
00:44:18,998 --> 00:44:23,802
PROJECT, AND HOW -- THEN TRUST

1143
00:44:23,802 --> 00:44:25,938
TO BE -- AS PART OF INTELLECTUAL

1144
00:44:25,938 --> 00:44:30,843
PROPERTY, THAT INCLUDES RIGHTS,

1145
00:44:30,843 --> 00:44:32,278
INDIGENOUS A AND DATA

1146
00:44:32,278 --> 00:44:33,045
SOVEREIGNTY RIGHTS, ET CETERA,

1147
00:44:33,045 --> 00:44:33,946
ET CETERA.

1148
00:44:33,946 --> 00:44:37,650
GOVERNANCE IS ANOTHER ONE, WHAT

1149
00:44:37,650 --> 00:44:38,751
GOVERNMENT ARRANGEMENTS ARE IN

1150
00:44:38,751 --> 00:44:40,953
PLACE, HOW CAN TRIBES BEING

1151
00:44:40,953 --> 00:44:43,923
INVOLVED IN THE GOVERNANCE OF

1152
00:44:43,923 --> 00:44:45,457
SAMPLES, SOMETHING THAT CRYSTAL

1153
00:44:45,457 --> 00:44:51,931
HAD REFERRED TO IN HER

1154
00:44:51,931 --> 00:44:53,132
PRESENTATION, TO ESTABLISH THAT,

1155
00:44:53,132 --> 00:44:56,735
WE ARE ESTABLISHING A SIMILAR

1156
00:44:56,735 --> 00:45:01,140
ENTITY, WE'RE GOING DOWN A VERY

1157
00:45:01,140 --> 00:45:04,009
SIMILAR PATH, WHICH IS AROUND

1158
00:45:04,009 --> 00:45:04,877
INDIGENOUS GOVERNMENTS OVER

1159
00:45:04,877 --> 00:45:08,581
INDIGENOUS INFORMATION.

1160
00:45:08,581 --> 00:45:11,150
SO OTHER THINGS TO THINK ABOUT,

1161
00:45:11,150 --> 00:45:13,018
IS THERE DYNAMIC CONSENT OR

1162
00:45:13,018 --> 00:45:14,753
RE-CONSENT, WHAT ARE THE

1163
00:45:14,753 --> 00:45:16,422
BENEFITS ARISING FROM THE

1164
00:45:16,422 --> 00:45:19,024
STUDIES, AND HOW WILL THEY BE

1165
00:45:19,024 --> 00:45:20,793
RETURNED TO PARTICIPANTS IN

1166
00:45:20,793 --> 00:45:23,529
THEIR COMMUNITIES.

1167
00:45:23,529 --> 00:45:27,266
SO THESE FRAME WORKS HAVE BEEN

1168
00:45:27,266 --> 00:45:29,335
APPLIED IN A NUMBER OF DIFFERENT

1169
00:45:29,335 --> 00:45:29,802
PROJECTS.

1170
00:45:29,802 --> 00:45:32,705
MOST OF THESE, I'VE BEEN

1171
00:45:32,705 --> 00:45:33,706
INVOLVED IN.

1172
00:45:33,706 --> 00:45:37,443
I'LL TALK ABOUT ONE IN

1173
00:45:37,443 --> 00:45:47,386
PARTICULAR IN A SECOND, BUT --

1174
00:45:47,386 --> 00:45:48,387
WE'LL GO INTO THAT ONE, ABOUT

1175
00:45:48,387 --> 00:45:52,558
ONE OF THESE PROJECTS, OUR VERY

1176
00:45:52,558 --> 00:45:56,261
OWN PROJECT AND HOW WE'VE USED

1177
00:45:56,261 --> 00:45:57,963
MAORI KNOWLEDGE TO DEVELOP THIS

1178
00:45:57,963 --> 00:46:03,535
VERY OWN TOOL.

1179
00:46:03,535 --> 00:46:06,572
SORE IT'S CALLED HE KAKANO,

1180
00:46:06,572 --> 00:46:11,310
WHICH MEANS THE SEED OR GENETIC

1181
00:46:11,310 --> 00:46:15,781
INHAINHERITANCE.

1182
00:46:15,781 --> 00:46:21,153
WE RECRUITED ABOUT -- JUST OVER

1183
00:46:21,153 --> 00:46:23,155
AHOW PROJECT, AND THE PROJECT

1184
00:46:23,155 --> 00:46:27,292
WAS DESIGNED -- PART OF THAT WAS

1185
00:46:27,292 --> 00:46:29,828
WE ASKED EVERY PARTICIPANT TO

1186
00:46:29,828 --> 00:46:34,433
TELL US WHAT -- ESSENTIALLY WHAT

1187
00:46:34,433 --> 00:46:37,936
THEIR GENEALOGY IS SO THAT WE

1188
00:46:37,936 --> 00:46:39,571
COULD DETERMINE WHETHER OR NOT

1189
00:46:39,571 --> 00:46:40,906
WE'VE GOT -- DEVELOPED A

1190
00:46:40,906 --> 00:46:47,813
RESOURCE THAT IS WIDELY SUITABLE

1191
00:46:47,813 --> 00:46:57,423
TO USE ACROSS THE MAORI WORLD.

1192
00:46:57,423 --> 00:46:59,224
IT'S BOTH A GENETIC AND SOCIAL

1193
00:46:59,224 --> 00:47:00,959
CONSTRUCT, IT REFERS TO THE

1194
00:47:00,959 --> 00:47:05,464
NAMES OF AN SE TORES SO THEY CAN

1195
00:47:05,464 --> 00:47:06,999
BEING FILLED WITH THE BONES AND

1196
00:47:06,999 --> 00:47:15,874
THE STORIES WHO GO WITH THEM.

1197
00:47:15,874 --> 00:47:17,543
MAORI HAVE OVER 30 GENERATIONS

1198
00:47:17,543 --> 00:47:18,744
OF AN SES INVENTORIES AND THAT'S

1199
00:47:18,744 --> 00:47:20,045
REALLY QUITE STUNNING, HOW THAT

1200
00:47:20,045 --> 00:47:21,613
WAS ACTUALLY ACHIEVED.

1201
00:47:21,613 --> 00:47:23,682
BUT THERE WERE A NUMBER OF

1202
00:47:23,682 --> 00:47:25,317
DIFFERENT CULTURAL PRACTICES

1203
00:47:25,317 --> 00:47:27,653
THAT ENABLED KNOWLEDGE OF

1204
00:47:27,653 --> 00:47:29,188
ANCESTORS, THEIR NAMES TO BE

1205
00:47:29,188 --> 00:47:31,390
RECORDED, AND THEN TO BE

1206
00:47:31,390 --> 00:47:34,426
VALIDATED AND PASSED ON TO EACH

1207
00:47:34,426 --> 00:47:36,328
SUBSEQUENT GENERATION.

1208
00:47:36,328 --> 00:47:38,530
SO WE'VE USED THAT INFORMATION

1209
00:47:38,530 --> 00:47:42,701
IN DEVELOPING OUR VERY OWN, AND

1210
00:47:42,701 --> 00:47:45,003
OUR FIRST ROUND OF RECRUITS IN

1211
00:47:45,003 --> 00:47:47,206
THE FIRST 125, I THINK, WE

1212
00:47:47,206 --> 00:47:49,274
RECRUITED FROM THE EAST COAST

1213
00:47:49,274 --> 00:47:50,809
REGION -- THE NORTHEAST COAST

1214
00:47:50,809 --> 00:47:57,416
REGION HERE, AND IN THE NORTH

1215
00:47:57,416 --> 00:47:59,151
ISLAND, AND WHAT WE FOUND WAS

1216
00:47:59,151 --> 00:48:01,253
THERE WAS AN OVERREPRESENTATION

1217
00:48:01,253 --> 00:48:02,988
NOT SURPRISINGLY OF THE TRIBES

1218
00:48:02,988 --> 00:48:07,493
FROM THAT AREA, SO WE HAD TO

1219
00:48:07,493 --> 00:48:09,294
CHANGE OUR RECRUITMENT STRATEGY

1220
00:48:09,294 --> 00:48:10,529
AND MOVE TO RECRUITING IN

1221
00:48:10,529 --> 00:48:11,497
DIFFERENT PLACES AND SPACES

1222
00:48:11,497 --> 00:48:17,970
AROUND THE COUNTRY TO ENABLE US

1223
00:48:17,970 --> 00:48:19,471
TO HAVE A MORE REPRESENTATIVE

1224
00:48:19,471 --> 00:48:26,645
SAMPLE OF MAORI FROM AROUND

1225
00:48:26,645 --> 00:48:27,880
AOTEAROA.

1226
00:48:27,880 --> 00:48:29,681
THIS ON THE RIGHT-HAND SIDE HERE

1227
00:48:29,681 --> 00:48:32,251
SHOWS THE DISTRIBUTION OF

1228
00:48:32,251 --> 00:48:33,886
DIFFERENT TRIBAL GROUPS, AND

1229
00:48:33,886 --> 00:48:37,389
THERE'S OVER A HUNDRED

1230
00:48:37,389 --> 00:48:41,527
RECOGNIZED TRIBES.

1231
00:48:41,527 --> 00:48:45,397
WWHAT WE WERE ABLE TO DO AFTER E

1232
00:48:45,397 --> 00:48:49,234
HAD RELOCATED OUR CENTERS OF

1233
00:48:49,234 --> 00:48:50,636
RECRUITMENT, WHAT WE WERE ABLE

1234
00:48:50,636 --> 00:48:54,940
TO DO WAS SEE A LOT MORE

1235
00:48:54,940 --> 00:48:56,909
DIVERSITY AND A LOT CLOSER

1236
00:48:56,909 --> 00:48:59,778
REPRESENTATION TO THE RELATIVE

1237
00:48:59,778 --> 00:49:04,817
PROPORTIONS OF TRIBES AS THEY

1238
00:49:04,817 --> 00:49:07,686
WERE IN THE 2013 CENSUS WAS

1239
00:49:07,686 --> 00:49:08,954
ACHIEVED BY CHANGING OUR

1240
00:49:08,954 --> 00:49:10,289
RECRUITMENT STRATEGY.

1241
00:49:10,289 --> 00:49:14,493
AND SO NOW WE HAVE A RESOURCE

1242
00:49:14,493 --> 00:49:16,461
THAT MORE ADEQUATELY REFLECTS

1243
00:49:16,461 --> 00:49:20,365
THE BROAD LEVEL OF VARIATION

1244
00:49:20,365 --> 00:49:22,034
THAT OCCURS WITHIN THIS

1245
00:49:22,034 --> 00:49:28,841
ALMOST -- OVER A MILLION MAORI,

1246
00:49:28,841 --> 00:49:30,809
SO THAT WORK WAS UNDERTAKEN BY

1247
00:49:30,809 --> 00:49:34,780
ONE OF MY MASTER STUDENTS, BEN

1248
00:49:34,780 --> 00:49:36,582
RANGIHUNA, WHO FROM HIMSELF IS

1249
00:49:36,582 --> 00:49:37,883
FROM THE TRIBE ON THE EAST

1250
00:49:37,883 --> 00:49:39,184
COAST.

1251
00:49:39,184 --> 00:49:44,957
SO WE'VE ALSO USED MATAURANGA

1252
00:49:44,957 --> 00:49:47,326
INFORMATION TO LOOK AT HOW DO WE

1253
00:49:47,326 --> 00:49:48,093
CALCULATE DISEASE RISK.

1254
00:49:48,093 --> 00:49:50,162
WHY WOULD WE NEED TO DO THAT?

1255
00:49:50,162 --> 00:49:51,196
POLYGENIC RISK SCORES, WHICH ARE

1256
00:49:51,196 --> 00:49:54,132
TYPICALLY USED TO CALCULATE

1257
00:49:54,132 --> 00:49:59,271
DISEASE RISK DO NOT PERFORM AS

1258
00:49:59,271 --> 00:50:01,640
WELL FOR POPULATIONS WHERE THOSE

1259
00:50:01,640 --> 00:50:03,041
POPULATIONS ARE NOT REPRESENTED

1260
00:50:03,041 --> 00:50:04,476
IN THE DATABASES USED TO

1261
00:50:04,476 --> 00:50:05,444
GENERATE THOSE RISK SCORES.

1262
00:50:05,444 --> 00:50:09,114
SO WE HAVE TO LOOK AT OTHER

1263
00:50:09,114 --> 00:50:12,918
METHODS.

1264
00:50:12,918 --> 00:50:14,786
POLYGENIC RISK SCORES COME FROM

1265
00:50:14,786 --> 00:50:15,888
GENOME WIDE ASSOCIATION STUDIES

1266
00:50:15,888 --> 00:50:20,492
THAT TYPICALLY INVOLVE OVER 1000

1267
00:50:20,492 --> 00:50:25,163
RESOURCES IN THIS COUNTRY TO RUN

1268
00:50:25,163 --> 00:50:28,267
A STUDY OF THAT SIZE, AND

1269
00:50:28,267 --> 00:50:30,669
THERE'S WIDESPREAD RELUCTANCE

1270
00:50:30,669 --> 00:50:32,871
AMONGST MAORI TO PARTICIPATE FOR

1271
00:50:32,871 --> 00:50:38,944
ALMOST EXACTLY THE SAME RENS

1272
00:50:38,944 --> 00:50:39,711
THAT -- NATIVE AMERICANS TO

1273
00:50:39,711 --> 00:50:40,812
PARTICIPATE IN THESE SORTS OF

1274
00:50:40,812 --> 00:50:41,146
STUDIES.

1275
00:50:41,146 --> 00:50:42,915
SO WE HAVE TO LOOK AT OUR

1276
00:50:42,915 --> 00:50:44,650
ALTERNATIVE METHODS, AND I'LL

1277
00:50:44,650 --> 00:50:49,488
JUST FINISH ON THIS.

1278
00:50:49,488 --> 00:50:50,689
THIS COMBINES I GUESS MY

1279
00:50:50,689 --> 00:50:54,660
KNOWLEDGE OF OUR PEOPLES'

1280
00:50:54,660 --> 00:50:57,062
CULTURE, AS WELL AS THE

1281
00:50:57,062 --> 00:50:59,464
STATISTICAL METHODS TO CALCULATE

1282
00:50:59,464 --> 00:51:00,032
DISEASE RISK.

1283
00:51:00,032 --> 00:51:03,869
AND WHAT WE'VE DONE AND I'LL

1284
00:51:03,869 --> 00:51:07,539
JUST CREATE -- THESE TWO GUYS UP

1285
00:51:07,539 --> 00:51:13,845
IN THE UPPER RIGHT SIDE, THIS IS

1286
00:51:13,845 --> 00:51:15,213
VERY PRELIMINARY AT THE MOMENT,

1287
00:51:15,213 --> 00:51:20,919
BUT IF WE USE THIS WITHOUT ANY

1288
00:51:20,919 --> 00:51:22,554
DNA OR GENOTYPIC INFORMATION,

1289
00:51:22,554 --> 00:51:27,292
WHAT WE FIND IS OUR PREDICTION

1290
00:51:27,292 --> 00:51:29,695
ACCURACY, OF AROUND ABOUT .6,

1291
00:51:29,695 --> 00:51:31,663
AND IT NOT TOO DIFFERENT TO

1292
00:51:31,663 --> 00:51:33,432
PUBLISH ESTIMATES OF POLYGENIC

1293
00:51:33,432 --> 00:51:39,137
RISK SCORE ACCURACIES FOR

1294
00:51:39,137 --> 00:51:40,339
CONDITIONS LIKE TYPE 2 DIABETES.

1295
00:51:40,339 --> 00:51:42,407
OF COURSE IF WE DIDN'T HAVE ANY

1296
00:51:42,407 --> 00:51:44,743
INFORMATION, WE'D HAVE ZERO

1297
00:51:44,743 --> 00:51:46,411
PREDICTION ACCURACY.

1298
00:51:46,411 --> 00:51:47,913
SO THIS GIVES US QUITE A LOT BY

1299
00:51:47,913 --> 00:51:48,246
ITSELF.

1300
00:51:48,246 --> 00:51:50,816
IF WE WERE GOING TO COMBINE THAT

1301
00:51:50,816 --> 00:51:52,217
WITH GENETIC INFORMATION, WHAT

1302
00:51:52,217 --> 00:51:54,853
WE CAN SEE IS IF WE GENOTYPED

1303
00:51:54,853 --> 00:51:58,290
50% OF OUR COHORTS AND COMBINED

1304
00:51:58,290 --> 00:52:02,227
IT WITH OUR INFORMATION ON THOSE

1305
00:52:02,227 --> 00:52:04,629
WHERE THE OTHER 50% WERE NOT

1306
00:52:04,629 --> 00:52:06,765
GENOTYPED, WHAT WE CAN SEE IS

1307
00:52:06,765 --> 00:52:08,066
PREDICTION ACCURACIES NOT FAR

1308
00:52:08,066 --> 00:52:10,469
LESS THAN EVERYBODY BEING

1309
00:52:10,469 --> 00:52:11,036
GENOTYPED.

1310
00:52:11,036 --> 00:52:14,239
NOW WHAT'S THE POINT HERE?

1311
00:52:14,239 --> 00:52:17,309
THE POINT IS SO -- WE DON'T NEED

1312
00:52:17,309 --> 00:52:20,479
TO GENOTYPE EVERYBODY.

1313
00:52:20,479 --> 00:52:22,047
WE'RE GENOTYPING EITHER FOR A

1314
00:52:22,047 --> 00:52:26,618
STUDY OR FOR ROUTINE CLINICAL

1315
00:52:26,618 --> 00:52:29,921
PURPOSES, YOU NEED TO SPEND

1316
00:52:29,921 --> 00:52:32,190
SOMEWHERE BETWEEN 300 AND $600

1317
00:52:32,190 --> 00:52:33,925
U.S. TO GENOTYPE THOSE PEOPLE.

1318
00:52:33,925 --> 00:52:35,961
IF YOU COMBINE -- IF WE'RE GOING

1319
00:52:35,961 --> 00:52:38,764
TO DO THAT ACROSS OUR ENTIRE

1320
00:52:38,764 --> 00:52:39,965
MAORI POPULATION IN THIS

1321
00:52:39,965 --> 00:52:41,800
COUNTRY, THAT'S ESSENTIALLY

1322
00:52:41,800 --> 00:52:42,734
500,000 PEOPLE THAT WE DON'T

1323
00:52:42,734 --> 00:52:48,340
NEED TO GENOTYPE, MULTIPLY THAT

1324
00:52:48,340 --> 00:52:49,975
BY $600 U.S., THAT'S A VERY,

1325
00:52:49,975 --> 00:52:51,777
VERY LARGE AMOUNT OF MONEY THAT

1326
00:52:51,777 --> 00:52:54,312
THE TAXPAYER DOES NOT HAVE TO

1327
00:52:54,312 --> 00:52:56,748
SPEND FOR VERY LITTLE LOSS IN

1328
00:52:56,748 --> 00:52:59,317
PREDICTION ACCURACY.

1329
00:52:59,317 --> 00:53:01,019
SO IT HAS REAL BENEFITS, NOT

1330
00:53:01,019 --> 00:53:02,320
ONLY FINANCIALLY BUT ALSO IN

1331
00:53:02,320 --> 00:53:04,089
TERMS OF OUR ABILITY TO CONDUCT

1332
00:53:04,089 --> 00:53:05,424
STUDIES AS WELL.

1333
00:53:05,424 --> 00:53:09,361
BEFORE WE ONLY HAD THE RESOURCES

1334
00:53:09,361 --> 00:53:10,695
FOR WIDESPREAD GENOME WIDE

1335
00:53:10,695 --> 00:53:12,164
ASSOCIATION STUDIES, BUT IF WE

1336
00:53:12,164 --> 00:53:14,032
WERE ABLE TO UNDERTAKE THESE

1337
00:53:14,032 --> 00:53:16,535
STUDIES WITH  -- SIMILAR STUDIES

1338
00:53:16,535 --> 00:53:19,337
BUT WITH FAR FEWER PEOPLE

1339
00:53:19,337 --> 00:53:21,273
WITHOUT A LOSS OF ACCURACY, THEN

1340
00:53:21,273 --> 00:53:23,975
THAT HAS BENEFITS EVEN FOR

1341
00:53:23,975 --> 00:53:25,477
RESEARCH PROJECTS.

1342
00:53:25,477 --> 00:53:27,546
SO I'LL END THERE.

1343
00:53:27,546 --> 00:53:32,918
JUST BY STATING THAT BOTH

1344
00:53:32,918 --> 00:53:37,222
TIKANGA AND MATAURANGA MAORI

1345
00:53:37,222 --> 00:53:41,126
HAVE CONTRIBUTED TO IMPROVED

1346
00:53:41,126 --> 00:53:42,661
OUTCOMES, GREATER LEVELS OF

1347
00:53:42,661 --> 00:53:43,895
PARTICIPATION BY MAORI, MORE

1348
00:53:43,895 --> 00:53:45,430
EFFECTIVE STUDY DESIGN AND

1349
00:53:45,430 --> 00:53:46,765
CONDUCT, WE HAVE BETTER

1350
00:53:46,765 --> 00:53:47,766
RESOURCES, THEY ARE A LOT BETTER

1351
00:53:47,766 --> 00:53:49,301
THAN THEY WOULD HAVE BEEN

1352
00:53:49,301 --> 00:53:50,602
OTHERWISE IF WE DIDN'T UTILIZE

1353
00:53:50,602 --> 00:53:51,036
THIS.

1354
00:53:51,036 --> 00:53:52,270
AND IT'S POTENTIALLY GOING TO

1355
00:53:52,270 --> 00:53:55,307
LEAD TO MORE COST-EFFECTIVE AND

1356
00:53:55,307 --> 00:53:57,642
ACCURATE DISEASE RISK AND

1357
00:53:57,642 --> 00:53:57,943
ESTIMATION.

1358
00:53:57,943 --> 00:53:59,744
AND ALL OF THOSE OUTCOMES ARE

1359
00:53:59,744 --> 00:54:02,280
NOT JUST GOOD FOR OUR PEOPLE,

1360
00:54:02,280 --> 00:54:04,116
BUT THEY'RE GOOD SCIENTIFICALLY,

1361
00:54:04,116 --> 00:54:06,685
SO HE CAN DO GOOD SCIENCE BY

1362
00:54:06,685 --> 00:54:10,088
COULDDOING THINGS ETHICALLY AND

1363
00:54:10,088 --> 00:54:11,256
APPROPRIATELY UTILIZING

1364
00:54:11,256 --> 00:54:12,090
INDIGENOUS KNOWLEDGE.

1365
00:54:12,090 --> 00:54:14,292
AND THAT KNOWLEDGE AND THOSE

1366
00:54:14,292 --> 00:54:16,661
FRAME WORKS CAN, THEREFORE, ALSO

1367
00:54:16,661 --> 00:54:19,498
BE ABLE TO POTENTIALLY REDUCE

1368
00:54:19,498 --> 00:54:20,866
EQUITY GAPS.

1369
00:54:20,866 --> 00:54:22,300
AND I THINK THAT THAT'S A REALLY

1370
00:54:22,300 --> 00:54:24,035
IMPORTANT LESSON FOR AN

1371
00:54:24,035 --> 00:54:25,670
INDIGENOUS REFERENCE GENOME.

1372
00:54:25,670 --> 00:54:29,007
WE NEED TO -- WE NEED TO

1373
00:54:29,007 --> 00:54:30,976
INCORPORATE HOW ETHICAL

1374
00:54:30,976 --> 00:54:32,410
PRACTICES AS WELL AS

1375
00:54:32,410 --> 00:54:34,146
UNDERSTANDINGS OF OUR CONCEPTS

1376
00:54:34,146 --> 00:54:36,148
OF HEREDITARY INHERITANCE.

1377
00:54:36,148 --> 00:54:37,816
EVEN THOUGH THOSE THINGS MIGHT

1378
00:54:37,816 --> 00:54:42,521
BE LOCALIZED, THEY NONETHELESS

1379
00:54:42,521 --> 00:54:46,158
CAN PROVIDE DOING SCIENCE IN A

1380
00:54:46,158 --> 00:54:51,997
MUCH BETTER WAY THAN ACTUALLY TY

1381
00:54:51,997 --> 00:54:53,932
DELIVERS OUTCOMES FOR OUR

1382
00:54:53,932 --> 00:54:54,332
COMMUNITIES.

1383
00:54:54,332 --> 00:55:01,139
IN OUR NE KAKANO, WE HAVE A FEW

1384
00:55:01,139 --> 00:55:04,109
PEOPLE INVOLVED, PROFESSOR

1385
00:55:04,109 --> 00:55:06,444
STEVEN ROBERTSON, LEADERSHIP

1386
00:55:06,444 --> 00:55:09,714
GROUP, WHO ALMOST ALL BUT ONE

1387
00:55:09,714 --> 00:55:16,721
ARE MAORI AND HUTI WATSON IS THE

1388
00:55:16,721 --> 00:55:17,989
CHAIR OF THAT GROUP.

1389
00:55:17,989 --> 00:55:20,825
SO MY FINAL COMMENT,

1390
00:55:20,825 --> 00:55:29,134
[SPEAKING INDIGENOUS LANGUAGE]

1391
00:55:29,134 --> 00:55:30,302
THE BIRD THAT EATS THE FRUIT OF

1392
00:55:30,302 --> 00:55:32,237
THE MIRO TREE WILL HAVE THE

1393
00:55:32,237 --> 00:55:33,772
FOREST AS ITS DOMAIN, BUT THE

1394
00:55:33,772 --> 00:55:34,806
BIRD THAT EATS THE TREE OF

1395
00:55:34,806 --> 00:55:35,807
KNOWLEDGE WILL INHERIT THE

1396
00:55:35,807 --> 00:55:39,177
EARTH.

1397
00:55:39,177 --> 00:55:40,879
ALL FINISHED.

1398
00:55:40,879 --> 00:55:42,581
>> THANK YOU SO MUCH,

1399
00:55:42,581 --> 00:55:43,515
DR. WILCOX.

1400
00:55:43,515 --> 00:55:45,016
REALLY APPRECIATE THAT.

1401
00:55:45,016 --> 00:55:47,319
WE'LL TURN NEXT TO OUR NEXT

1402
00:55:47,319 --> 00:55:49,254
SPEAKER, OUR THIRD SPEAKER,

1403
00:55:49,254 --> 00:55:52,057
DR. BROWN.

1404
00:55:52,057 --> 00:55:52,757
>> THANK YOU.

1405
00:55:52,757 --> 00:55:55,927
AND WHAT A GREAT PRIVILEGE AND

1406
00:55:55,927 --> 00:55:57,362
PLEASURE IT IS TO BE ABLE TO

1407
00:55:57,362 --> 00:56:01,499
JOIN YOU ALL TODAY.

1408
00:56:01,499 --> 00:56:02,867
MY NAME IS ALEX BROWN.

1409
00:56:02,867 --> 00:56:04,236
I'M JUST TRYING TO BRING UP MY

1410
00:56:04,236 --> 00:56:07,706
SLIDES HERE.

1411
00:56:07,706 --> 00:56:09,241
I THINK -- HERE WE GO.

1412
00:56:09,241 --> 00:56:13,278
YOU SHOULD BE ABLE TO -- VERY

1413
00:56:13,278 --> 00:56:13,478
GOOD.

1414
00:56:13,478 --> 00:56:15,146
I HOPE YOU CAN NOW SEE THAT.

1415
00:56:15,146 --> 00:56:17,616
IT'S A GREAT PRIVILEGE TO BE

1416
00:56:17,616 --> 00:56:19,784
JOINING YOU DURING NATIVE

1417
00:56:19,784 --> 00:56:20,885
AMERICAN HERITAGE MONTH.

1418
00:56:20,885 --> 00:56:21,853
KARINA, THANK YOU SO MUCH FOR

1419
00:56:21,853 --> 00:56:24,322
THE INVITATION, AND IT'S A GREAT

1420
00:56:24,322 --> 00:56:27,726
PRIVILEGE AS ALWAYS TO SHARE THE

1421
00:56:27,726 --> 00:56:31,896
VIRTUAL NOOR W FLOOR WITH CRYSTD

1422
00:56:31,896 --> 00:56:33,131
PHIL, WHO I'VE ENJOYED WORKING

1423
00:56:33,131 --> 00:56:35,100
WITH FOR NOW SOME TIME.

1424
00:56:35,100 --> 00:56:36,334
WHAT I THOUGHT I WOULD DO IS

1425
00:56:36,334 --> 00:56:37,235
JUST GIVE YOU A LITTLE BIT OF

1426
00:56:37,235 --> 00:56:39,738
INFORMATION FROM WHERE I'M FROM.

1427
00:56:39,738 --> 00:56:43,842
I'M FROM THE SOUTH COAST OF NEW

1428
00:56:43,842 --> 00:56:46,678
SOUTH WALES, FOR THOSE OF YOU

1429
00:56:46,678 --> 00:56:47,879
PARTICULARLY IN THE U.S. WHO

1430
00:56:47,879 --> 00:56:49,514
DON'T KNOW WHAT AUSTRALIA LOOKS

1431
00:56:49,514 --> 00:56:51,283
LIKE, WE'VE GOT A MAP THERE, I'M

1432
00:56:51,283 --> 00:56:54,686
FROM THE BOTTOM LEFT-HAND

1433
00:56:54,686 --> 00:56:56,655
CORNER, AND MY GRANDMOTHER'S

1434
00:56:56,655 --> 00:57:00,592
COUNTRY IS THIS PLACE ON THE

1435
00:57:00,592 --> 00:57:04,029
RIGHT CALLED WALLAGA LAKE.

1436
00:57:04,029 --> 00:57:06,131
IN THE BACKGROUND IS OUR

1437
00:57:06,131 --> 00:57:07,399
ANCESTORS' PLACE, OUR MOUNTAIN,

1438
00:57:07,399 --> 00:57:11,870
IT WAS NAMED BY CAPTAIN COOK,

1439
00:57:11,870 --> 00:57:13,405
BECAUSE HE THOUGHT IT LOOKED

1440
00:57:13,405 --> 00:57:13,938
LIKE A CAMEL.

1441
00:57:13,938 --> 00:57:15,540
WE HAVE ANOTHER NAME FOR THAT

1442
00:57:15,540 --> 00:57:18,209
PLACE AS IT HAS BEEN FOR TENS OF

1443
00:57:18,209 --> 00:57:23,715
THOUSANDS OF YEARS, AND IT'S THE

1444
00:57:23,715 --> 00:57:24,949
BIRTHPLACE OF MY ANCESTORS.

1445
00:57:24,949 --> 00:57:27,285
YOU CAN OBVIOUSLY TELL THE

1446
00:57:27,285 --> 00:57:28,586
BOTTOM LEFT-HAND SIDE WHERE I

1447
00:57:28,586 --> 00:57:30,121
GET MY VERY HANDSOME LOOKS FROM,

1448
00:57:30,121 --> 00:57:34,759
MY DAD AND MY GRANDFATHER.

1449
00:57:34,759 --> 00:57:36,194
WHAT I THOUGHT I'D DO TODAY IS

1450
00:57:36,194 --> 00:57:40,699
JUST LAY OUT SOME OF THE

1451
00:57:40,699 --> 00:57:41,566
COMPLEXITIES AND QUESTIONS WE

1452
00:57:41,566 --> 00:57:42,967
NEED TO ASK OURSELVES AND THE

1453
00:57:42,967 --> 00:57:44,936
WAY IN WHICH GENOMICS RESEARCH

1454
00:57:44,936 --> 00:57:45,870
HAS BEEN CONDUCTED.

1455
00:57:45,870 --> 00:57:49,140
OUR STARTING POINT UNFORTUNATE

1456
00:57:49,140 --> 00:57:52,143
NATTILY IS THE HISTORY OF

1457
00:57:52,143 --> 00:57:53,345
SCIENCE, CERTAINLY IN OUR

1458
00:57:53,345 --> 00:57:54,679
COUNTRY, WHERE SCIENCE WAS NOT

1459
00:57:54,679 --> 00:57:57,549
JUST AN INNOCENT BYSTANDER TO

1460
00:57:57,549 --> 00:57:59,517
THE PROCESS OF COLONIZATION, IT

1461
00:57:59,517 --> 00:58:02,687
BECAME A TOOL OF OPPRESSION, IT

1462
00:58:02,687 --> 00:58:05,023
WAS A FORM OF CONFLICT AND HARM

1463
00:58:05,023 --> 00:58:07,292
AND VIOLENCE AGAINST INDIGENOUS

1464
00:58:07,292 --> 00:58:09,427
INTERESTS.

1465
00:58:09,427 --> 00:58:12,297
IN A WAY TO DEMONSTRATE THAT

1466
00:58:12,297 --> 00:58:13,965
WILL INDIGENOUS AUSTRALIANS,

1467
00:58:13,965 --> 00:58:16,935
DESPITE HAVING LIVED O IN THIS

1468
00:58:16,935 --> 00:58:19,304
COUNTRY FOR OVER 60,000 YEARS,

1469
00:58:19,304 --> 00:58:20,772
WERE SOMEHOW LESS HUMAN THAN THE

1470
00:58:20,772 --> 00:58:23,942
REST OF THE GLOBE.

1471
00:58:23,942 --> 00:58:28,146
AND THIS WAS CREATED AS A METHOD

1472
00:58:28,146 --> 00:58:30,348
OF DISPOSSESSING INDIGENOUS

1473
00:58:30,348 --> 00:58:31,216
AUSTRALIANS OF THEIR RIGHTS AS

1474
00:58:31,216 --> 00:58:32,817
THE ORIGINAL INHABITANTS OF THIS

1475
00:58:32,817 --> 00:58:34,452
LAND.

1476
00:58:34,452 --> 00:58:37,722
AND I POSE TO YOU A SET OF

1477
00:58:37,722 --> 00:58:39,691
CONSIDERATIONS ABOUT HOW IF

1478
00:58:39,691 --> 00:58:42,360
WE'RE ABLE TO PROGRESS OUR

1479
00:58:42,360 --> 00:58:43,695
AGENDA ON OUR TERMS,

1480
00:58:43,695 --> 00:58:46,097
PARTICULARLY IN THE CONTEXT OF

1481
00:58:46,097 --> 00:58:47,298
GENETICS, THAT WOULD MAKE A

1482
00:58:47,298 --> 00:58:48,633
SIGNIFICANT DIFFERENCE.

1483
00:58:48,633 --> 00:58:50,635
NOW WE KNOW THAT MOST OF THE

1484
00:58:50,635 --> 00:58:56,107
AGENDA PLAYING OUT IN THE GLOBAL

1485
00:58:56,107 --> 00:58:56,975
GENOMICS RESEARCH COMMUNITIES

1486
00:58:56,975 --> 00:58:58,042
THAT IS A REQUIREMENT FOR A

1487
00:58:58,042 --> 00:59:01,312
WHOLE BUNCH OF INDIGENOUS FOLK

1488
00:59:01,312 --> 00:59:03,148
AND OTHER ANCESTRALLY DIVERSE

1489
00:59:03,148 --> 00:59:06,151
COMMUNITIES TO BE INVOLVED IN

1490
00:59:06,151 --> 00:59:08,987
THIS GENOMICS AGENDA.

1491
00:59:08,987 --> 00:59:10,755
AND WHILE THERE IS A STRONG CASE

1492
00:59:10,755 --> 00:59:14,826
FOR INCLUSION, THERE IS CLEARLY

1493
00:59:14,826 --> 00:59:17,896
SIGNIFICANT ADDITIONAL

1494
00:59:17,896 --> 00:59:18,897
CONSIDERATIONS TO BE PLAYED

1495
00:59:18,897 --> 00:59:19,998
THROUGH.

1496
00:59:19,998 --> 00:59:22,834
INCLUSION AT THIS STAGE, A STAMP

1497
00:59:22,834 --> 00:59:25,703
COLLECTING EXERCISE AS VIEWED BY

1498
00:59:25,703 --> 00:59:27,906
MANY WILL NOT DELIVER THE EQUITY

1499
00:59:27,906 --> 00:59:28,973
AND, MORE IMPORTANTLY, THE

1500
00:59:28,973 --> 00:59:29,974
SOVEREIGNTY THAT INDIGENOUS

1501
00:59:29,974 --> 00:59:32,110
PEOPLES DESERVE AND ASPIRE TO IN

1502
00:59:32,110 --> 00:59:34,746
THE CONDUCT OF THIS WORK, AND

1503
00:59:34,746 --> 00:59:39,050
I'LL GO THROUGH SOME OF THAT.

1504
00:59:39,050 --> 00:59:41,653
WE KNOW, AS HAS ALREADY BEEN

1505
00:59:41,653 --> 00:59:44,189
TOUCHED ON BY CRYSTAL IS THERE

1506
00:59:44,189 --> 00:59:47,492
ARE VERY FEW INDIGENOUS PEOPLE

1507
00:59:47,492 --> 00:59:48,927
INVOLVED IN GENOMICS AGENDAS

1508
00:59:48,927 --> 00:59:49,928
ACROSS THE GLOBE AND THAT

1509
00:59:49,928 --> 00:59:51,229
DOESN'T LOOK LIKE CHANGING IN

1510
00:59:51,229 --> 00:59:53,164
THE NEAR FUTURE.

1511
00:59:53,164 --> 00:59:55,133
WE MIGHT SAY WELL, OKAY,

1512
00:59:55,133 --> 00:59:56,000
INDIGENOUS PEOPLE HAVE CHOSEN

1513
00:59:56,000 --> 00:59:57,368
NOT TO PLAY AND THAT'S CERTAINLY

1514
00:59:57,368 --> 00:59:58,870
BEEN THE CASE IN AUSTRALIA.

1515
00:59:58,870 --> 00:59:59,871
BUT THE CHALLENGE FOR US IS THAT

1516
00:59:59,871 --> 01:00:01,072
ALL OF THE TOOLS TO BE

1517
01:00:01,072 --> 01:00:03,208
DEVELOPED, AS PHILIP TOUCHED ON,

1518
01:00:03,208 --> 01:00:10,949
WILL BE BIASED IN THEIR

1519
01:00:10,949 --> 01:00:12,183
APPLICABILITY IN THE CONTEXT OF

1520
01:00:12,183 --> 01:00:13,651
HEALTHCARE AND RESEARCH IN RE

1521
01:00:13,651 --> 01:00:14,986
VANS TO US AS INDIGENOUS

1522
01:00:14,986 --> 01:00:15,653
PEOPLES.

1523
01:00:15,653 --> 01:00:16,387
THERE WAS ALSO A CONVERSATION

1524
01:00:16,387 --> 01:00:18,556
THAT WE PROBABLY NEED TO HAVE AS

1525
01:00:18,556 --> 01:00:22,794
A GLOBAL COMMUNITY ABOUT OUR

1526
01:00:22,794 --> 01:00:25,630
HETEROGENEITY.

1527
01:00:25,630 --> 01:00:27,699
NOT JUST IN TERMS OF LABELING OF

1528
01:00:27,699 --> 01:00:29,300
INDIGENOUS PEOPLES WITH COLONIAL

1529
01:00:29,300 --> 01:00:31,169
CONSTRUCTS OF WHO WE ARE AND

1530
01:00:31,169 --> 01:00:32,604
WHAT WE REPRESENT, BUT WE

1531
01:00:32,604 --> 01:00:34,072
PUBLISHED RECENTLY DATA TO SHOW

1532
01:00:34,072 --> 01:00:37,008
THAT THERE IS DISTINCT GENETIC

1533
01:00:37,008 --> 01:00:40,845
ARCHITECTURE WITHIN INDIGENOUS

1534
01:00:40,845 --> 01:00:41,379
AUSTRALIANS.

1535
01:00:41,379 --> 01:00:42,847
THIS DATA PUBLISHED IN NATURE

1536
01:00:42,847 --> 01:00:44,649
LAST YEAR SHOWED THAT ABOUT 25%

1537
01:00:44,649 --> 01:00:46,684
OF THE VARIATION WE SAW IN

1538
01:00:46,684 --> 01:00:47,652
INDIGENOUS COMMUNITIES IN

1539
01:00:47,652 --> 01:00:49,153
AUSTRALIA WAS UNIQUE TO US AND

1540
01:00:49,153 --> 01:00:50,889
NOT SEEN IN ANY EUROPEAN

1541
01:00:50,889 --> 01:00:51,756
POPULATIONS.

1542
01:00:51,756 --> 01:00:58,263
BUT MORE IMPORTANTLY, PERHAPS,

1543
01:00:58,263 --> 01:00:59,898
AS 25% OF OUR VARIATION WAS

1544
01:00:59,898 --> 01:01:00,665
UNIQUE BETWEEN COMMUNITIES.

1545
01:01:00,665 --> 01:01:02,300
AND THIS WAS NOT SURPRISING THAT

1546
01:01:02,300 --> 01:01:04,769
CULTURAL AND HISTORICAL

1547
01:01:04,769 --> 01:01:06,971
REALITIES OF INDIGENOUS

1548
01:01:06,971 --> 01:01:09,707
COMMUNITIES ACROSS AUSTRALIA, WE

1549
01:01:09,707 --> 01:01:11,109
WERE SOVEREIGN, INDEPENDENT

1550
01:01:11,109 --> 01:01:12,377
NATIONS THAT HAD VERY CLOSELY

1551
01:01:12,377 --> 01:01:13,678
MONITORED WAYS OF

1552
01:01:13,678 --> 01:01:15,313
INTERCONNECTING WITH OTHER

1553
01:01:15,313 --> 01:01:17,081
LANGUAGE GROUPS OR OTHER TRIBES,

1554
01:01:17,081 --> 01:01:22,921
AND THIS IS DEMONSTRATED IN THE

1555
01:01:22,921 --> 01:01:24,589
GENOMICS STRUCTURE WE SEE WITHIN

1556
01:01:24,589 --> 01:01:25,123
INDIGENOUS COMMUNITIES.

1557
01:01:25,123 --> 01:01:26,991
AND THIS HAS ENORMOUS RELEVANCE

1558
01:01:26,991 --> 01:01:29,661
FOR OUR QUESTIONS OF HOW WILL

1559
01:01:29,661 --> 01:01:31,195
THE TOOLS THAT NEED TO BE

1560
01:01:31,195 --> 01:01:33,598
DEVELOPED TO ASSIST IN REDUCING

1561
01:01:33,598 --> 01:01:35,633
HEALTH INEQUALITIES CONTEND WITH

1562
01:01:35,633 --> 01:01:37,835
THESE CHALLENGES, AND ALSO

1563
01:01:37,835 --> 01:01:39,337
RELEVANCE TO THE QUESTION OF

1564
01:01:39,337 --> 01:01:46,678
WHAT IS AN INDIGENOUS REFERENCE,

1565
01:01:46,678 --> 01:01:50,148
WOULD BE ENOUGH TO CAPTURE THE

1566
01:01:50,148 --> 01:01:51,883
UNIQUE VARIATION IN

1567
01:01:51,883 --> 01:01:52,650
HETEROGENEITY ACROSS OUR

1568
01:01:52,650 --> 01:01:53,918
COMMUNITIES BOTH IN TERMS OF OUR

1569
01:01:53,918 --> 01:01:55,219
CULTURE, OUR BACKGROUNDS ABOUT

1570
01:01:55,219 --> 01:01:56,888
BU ALSO OUR GENOMIC PICTURE.

1571
01:01:56,888 --> 01:01:59,591
AND IN OUR CONVERSATIONS WITH

1572
01:01:59,591 --> 01:02:00,658
COMMUNITIES, THERE ARE ALSO

1573
01:02:00,658 --> 01:02:04,829
ADDITIONAL CHALLENGES.

1574
01:02:04,829 --> 01:02:06,764
FOR JUST THINKING WE CAN ROLL UP

1575
01:02:06,764 --> 01:02:08,199
OUR SLEEVES AND RECRUIT A WHOLE

1576
01:02:08,199 --> 01:02:12,870
BIBUNCH OF INDIGENOUS PEOPLE INO

1577
01:02:12,870 --> 01:02:15,139
RESEARCH EFFORTS MORE BROADLY.

1578
01:02:15,139 --> 01:02:18,276
QUESTIONS COMING FROM INL DIJ

1579
01:02:18,276 --> 01:02:20,345
NUSS AUSTRALIANS ARE QUESTIONS

1580
01:02:20,345 --> 01:02:22,547
ABOUT TRUST, THEIR CONCERN IS

1581
01:02:22,547 --> 01:02:24,248
HOW WILL GENOMICS ACTUALLY BE

1582
01:02:24,248 --> 01:02:25,216
USED AGAINST US?

1583
01:02:25,216 --> 01:02:29,053
LARGELY BASED ON OUR HISTORICAL

1584
01:02:29,053 --> 01:02:31,456
REALITY OF -- THE TOOL OF A

1585
01:02:31,456 --> 01:02:32,290
PERSON.

1586
01:02:32,290 --> 01:02:33,491
SCIENCE AS I MENTIONED BEFORE

1587
01:02:33,491 --> 01:02:35,693
HAS NOT TRADED INDIGENOUS PEOPLE

1588
01:02:35,693 --> 01:02:36,794
OR THEIR INTERESTS OR

1589
01:02:36,794 --> 01:02:40,131
PROTECTIONS OF THEIR RIGHTS, AND

1590
01:02:40,131 --> 01:02:41,099
SOVEREIGN ABILITY TO DECIDE

1591
01:02:41,099 --> 01:02:46,671
THEIR OWN FUTURE.

1592
01:02:46,671 --> 01:02:48,873
PARTICULARLY WELL.

1593
01:02:48,873 --> 01:02:49,907
QUESTIONS ABOUT CONTROL, WHO'S

1594
01:02:49,907 --> 01:02:51,876
MAKING ALL OF THESE DECISIONS?

1595
01:02:51,876 --> 01:02:53,411
WHO HAS ACCESS TO THE DATA?

1596
01:02:53,411 --> 01:02:55,780
IS THERE A DEGREE OF

1597
01:02:55,780 --> 01:02:56,547
EXPLOITATION AT PLAY HERE?

1598
01:02:56,547 --> 01:02:57,849
ARE YOU STEALING OUR CULTURE,

1599
01:02:57,849 --> 01:02:59,784
OUR STORY, OUR HISTORY, OUR

1600
01:02:59,784 --> 01:03:01,552
PEOPLE, OUR NARRATIVES, OUR ORAL

1601
01:03:01,552 --> 01:03:03,488
AND CULTURAL TRADITIONS?

1602
01:03:03,488 --> 01:03:05,256
AND ONE OF THE IMPORTANT

1603
01:03:05,256 --> 01:03:06,524
QUESTIONS, COMMUNITIES, ARE

1604
01:03:06,524 --> 01:03:08,693
STILL GRAPPLING WITH AND I THINK

1605
01:03:08,693 --> 01:03:09,894
THE GENOMICS COMMUNITY HAS YET

1606
01:03:09,894 --> 01:03:14,532
TO ANSWER, IS HOW WILL THESE

1607
01:03:14,532 --> 01:03:15,166
BENEFIT COMMUNITY SPECIFICALLY,

1608
01:03:15,166 --> 01:03:16,734
HOW WILL IT HELP THE NEXT

1609
01:03:16,734 --> 01:03:19,704
GENERATIONS OF INDIGENOUS

1610
01:03:19,704 --> 01:03:24,509
PEOPLES AND OUR COMMUNITIES?

1611
01:03:24,509 --> 01:03:25,977
AND I FEEL THERE'S STILL

1612
01:03:25,977 --> 01:03:27,078
ENORMOUS WORK TO BE DONE TO

1613
01:03:27,078 --> 01:03:28,112
ANSWER THESE QUESTIONS IN A WAY

1614
01:03:28,112 --> 01:03:30,348
THAT WOULD GIVE COMFORT IN SOME

1615
01:03:30,348 --> 01:03:32,483
WAY TO THE PROTECTION OF

1616
01:03:32,483 --> 01:03:37,955
INDIGENOUS RIGHTS AND INTERESTS.

1617
01:03:37,955 --> 01:03:39,390
YOU MIGHT ASK IF YOU'VE GOT ALL

1618
01:03:39,390 --> 01:03:40,958
THESE PROBLEMS WITH GENETICS,

1619
01:03:40,958 --> 01:03:42,393
ALEX, WHY THE HELL ARE YOU DOING

1620
01:03:42,393 --> 01:03:42,827
IT?

1621
01:03:42,827 --> 01:03:45,296
WELL, IT TOOK A LONG TIME TO

1622
01:03:45,296 --> 01:03:46,164
NEGOTIATE CONVERSATIONS WITH

1623
01:03:46,164 --> 01:03:48,132
COMMUNITIES ABOUT HOW GENOMICS

1624
01:03:48,132 --> 01:03:49,901
COULD BE USED TO ANSWER SOME

1625
01:03:49,901 --> 01:03:52,070
FUNDAMENTAL QUESTIONS WE HAVE,

1626
01:03:52,070 --> 01:03:55,306
AND OUR STARTING POINT WAS

1627
01:03:55,306 --> 01:03:57,942
ACTUALLY AROUND THE

1628
01:03:57,942 --> 01:03:59,243
INVESTIGATION OF THE AMOUNT OF

1629
01:03:59,243 --> 01:04:01,345
TYPE 2 DIABETES THAT WE SEE IN

1630
01:04:01,345 --> 01:04:03,281
OUR COMMUNITIES.

1631
01:04:03,281 --> 01:04:05,116
ABOUT 50% OF ADULTS OVER THE AGE

1632
01:04:05,116 --> 01:04:07,485
OF 50 WILL HAVE TYPE 2 DIABETES

1633
01:04:07,485 --> 01:04:08,820
IN MANY OF OUR COMMUNITIES.

1634
01:04:08,820 --> 01:04:12,256
SO WE HAVE THIS EXTREMELY HIGH

1635
01:04:12,256 --> 01:04:14,225
BURDEN.

1636
01:04:14,225 --> 01:04:17,628
WE SEE VERY EARLY ONSET OF TYPE

1637
01:04:17,628 --> 01:04:19,230
2 DIABETES IN OUR COMMUNITIES,

1638
01:04:19,230 --> 01:04:22,066
MUCH OF  WHICH IS NOT EXPLAINED

1639
01:04:22,066 --> 01:04:25,002
BY TRADITIONAL RISK FACTORS FOR

1640
01:04:25,002 --> 01:04:29,273
TYPE 2 DIABETES AS WE CURRENTLY

1641
01:04:29,273 --> 01:04:31,242
KNOWN AS THIS COMMONLY REFERS

1642
01:04:31,242 --> 01:04:33,811
TO, AND THIS ONSET IS UP TO TWO

1643
01:04:33,811 --> 01:04:35,780
DECADES EARLIER IN INDIGENOUS

1644
01:04:35,780 --> 01:04:36,547
AUSTRALIANS.

1645
01:04:36,547 --> 01:04:38,449
WE SEE A VERY HIGH BURDEN OF

1646
01:04:38,449 --> 01:04:39,083
AGGRESSIVE COMPLICATION AND WE

1647
01:04:39,083 --> 01:04:40,985
SEE A PHENOTYPE THAT PROGRESSES

1648
01:04:40,985 --> 01:04:43,054
VERY RAPIDLY TO COMPLICATIONS,

1649
01:04:43,054 --> 01:04:45,323
PARTICULARLY WITHIN FAMILY

1650
01:04:45,323 --> 01:04:45,757
GROUPS.

1651
01:04:45,757 --> 01:04:48,593
THOSE COMPLICATIONS BEING END

1652
01:04:48,593 --> 01:04:51,028
STAGE KIDNEY DISEASE, BLINDNESS

1653
01:04:51,028 --> 01:04:53,331
FROM RETINOPATHY, HEART DISEASE

1654
01:04:53,331 --> 01:04:56,000
AND STROKES.

1655
01:04:56,000 --> 01:04:57,635
WE KNOW THAT WE WANT AS A

1656
01:04:57,635 --> 01:04:59,704
HEALTHCARE SYSTEM TO IMPROVE OUR

1657
01:04:59,704 --> 01:05:01,439
ABILITY TO PREDICT WHO'S GOING

1658
01:05:01,439 --> 01:05:03,174
TO HAVE TROUBLE, AND THE

1659
01:05:03,174 --> 01:05:03,741
QUESTION IS WHETHER OR NOT

1660
01:05:03,741 --> 01:05:07,111
GENETICS OFFERS US TOOLS WHEN

1661
01:05:07,111 --> 01:05:08,479
EXISTING APPROACHES DON'T DO THE

1662
01:05:08,479 --> 01:05:09,580
BUSINESS.

1663
01:05:09,580 --> 01:05:12,650
AND WHETHER OR NOT WE CAN

1664
01:05:12,650 --> 01:05:14,285
INCREASE ACCESS AND IMPROVE

1665
01:05:14,285 --> 01:05:16,020
OUTCOMES IN OUR COMMUNITIES.

1666
01:05:16,020 --> 01:05:17,522
SO THIS WAS A NEGOTIATION

1667
01:05:17,522 --> 01:05:20,091
PROCESS THAT TOOK OVER THREE

1668
01:05:20,091 --> 01:05:26,798
YEARS TO START WITH.

1669
01:05:26,798 --> 01:05:29,066
WHAT THAT'S LED US TO IS TWO

1670
01:05:29,066 --> 01:05:30,401
FUNDAMENTAL APPROACHES MORE

1671
01:05:30,401 --> 01:05:31,135
BROADLY BEYOND A SPECIFIC

1672
01:05:31,135 --> 01:05:34,705
PROJECT OF INTEREST TO AGENDAS,

1673
01:05:34,705 --> 01:05:35,807
ONE AROUND EMPOWERING

1674
01:05:35,807 --> 01:05:37,141
COMMUNITIES IN DECISION-MAKING

1675
01:05:37,141 --> 01:05:40,211
ABOUT INVOLVING THEMSELVES IN

1676
01:05:40,211 --> 01:05:42,079
GENOMICS IF THEY SO CHOOSE, AND

1677
01:05:42,079 --> 01:05:43,314
THE SECOND IS ENSURING THAT WE

1678
01:05:43,314 --> 01:05:45,850
HAVE VERY CLEAR LINE OF SIGHT OR

1679
01:05:45,850 --> 01:05:52,857
ROAD MAPS TO THE DELIVERY OF

1680
01:05:52,857 --> 01:05:54,025
BENEFIT AS DEFINED BY

1681
01:05:54,025 --> 01:05:55,593
COMMUNITIES THEMSELVES RATHER

1682
01:05:55,593 --> 01:05:56,961
THAN HOW GOOD RESEARCHERS ARE AT

1683
01:05:56,961 --> 01:05:58,396
SELLING THE DREAM OF WHAT THEIR

1684
01:05:58,396 --> 01:05:59,330
WORK WILL SOLVE.

1685
01:05:59,330 --> 01:06:03,401
AND WE'VE GOT A LARGE SCALE

1686
01:06:03,401 --> 01:06:04,168
NATIONAL PROJECT RESEARCH

1687
01:06:04,168 --> 01:06:07,004
FOCUSED ABOUT EMPOWERING

1688
01:06:07,004 --> 01:06:07,305
COMMUNITIES.

1689
01:06:07,305 --> 01:06:08,573
IT STARTS WITH INDIGENOUS

1690
01:06:08,573 --> 01:06:09,807
KNOWLEDGE SYSTEMS AND I THINK

1691
01:06:09,807 --> 01:06:12,543
WE'VE GOT A LOT TO LEARN AND

1692
01:06:12,543 --> 01:06:13,978
HOPEFULLY MODEL ON THE WORK

1693
01:06:13,978 --> 01:06:18,749
THAT'S BEING LED BY PHIL AND

1694
01:06:18,749 --> 01:06:20,618
COLLEAGUES ABOUT THIS FRAME OF

1695
01:06:20,618 --> 01:06:24,121
REFERENCE THAT IS FUNDAMENTALLY

1696
01:06:24,121 --> 01:06:26,390
INDIGENOUS AND HOW WE USE THAT

1697
01:06:26,390 --> 01:06:31,095
AS THE FOUNDATIONS OF OUR WORK

1698
01:06:31,095 --> 01:06:31,629
MOVING FORWARD.

1699
01:06:31,629 --> 01:06:34,465
A STRONG FOCUS ON DATA SCIENCES,

1700
01:06:34,465 --> 01:06:35,766
OUR INTERESTING MULTI-YOE MIX OF

1701
01:06:35,766 --> 01:06:37,301
COMPLEX DISEASE, OUR ABILITY TO

1702
01:06:37,301 --> 01:06:39,370
CAPTURE AND UNDERSTAND AND WORK

1703
01:06:39,370 --> 01:06:42,707
THROUGH THE IMPLICATIONS OF OUR

1704
01:06:42,707 --> 01:06:44,342
UNIQUE GENETIC VARIATION.

1705
01:06:44,342 --> 01:06:48,079
INCLUDING THE DEVELOPMENT OF PAN

1706
01:06:48,079 --> 01:06:51,649
GENOMIC RESOURCES, ASSEMBLIES

1707
01:06:51,649 --> 01:06:53,618
AND THE ABILITY TO UTILIZE THOSE

1708
01:06:53,618 --> 01:06:55,253
AS A FOUNDATION FOR GENETICS

1709
01:06:55,253 --> 01:06:57,788
INFORMED HEALTHCARE DELIVERY.

1710
01:06:57,788 --> 01:07:00,691
NOTING THAT IMPORTANT JOB TO DO

1711
01:07:00,691 --> 01:07:02,793
TO INCREASE CAPACITY ACROSS THE

1712
01:07:02,793 --> 01:07:04,428
SYSTEM, AND OUR WILLINGNESS TO

1713
01:07:04,428 --> 01:07:05,696
COLLABORATE WITH HEALTHCARE

1714
01:07:05,696 --> 01:07:08,199
SYSTEMS THEMSELVES, RESEARCHERS

1715
01:07:08,199 --> 01:07:10,835
ACROSS THE NATION AND INDUSTRY

1716
01:07:10,835 --> 01:07:12,770
PARTNERS, ALL OF WHICH AS YOU

1717
01:07:12,770 --> 01:07:14,639
CAN IMAGINE IS AN ENORMOUS

1718
01:07:14,639 --> 01:07:17,174
CHALLENGE AND WHY I HAVE GREY

1719
01:07:17,174 --> 01:07:19,143
HAIR DESPITE BEING A VERY YOUNG

1720
01:07:19,143 --> 01:07:21,412
PERSON IN MY MID 20s.

1721
01:07:21,412 --> 01:07:24,448
THAT'S NOT TRUE, BY THE WAY.

1722
01:07:24,448 --> 01:07:27,184
WE ALSO DECIDED IT WAS TIME TO

1723
01:07:27,184 --> 01:07:29,020
BRING TOGETHER EXPERTISE ACROSS

1724
01:07:29,020 --> 01:07:31,522
THE NATION AND ESTABLISH AN

1725
01:07:31,522 --> 01:07:34,058
ALLIANCE IN INDIGENOUS GENETICS,

1726
01:07:34,058 --> 01:07:35,593
WHICH I LEAD.

1727
01:07:35,593 --> 01:07:38,930
IT WAS REFLECTIVE REALLY OF THE

1728
01:07:38,930 --> 01:07:41,065
EMERGENCE OF INDIGENOUS GENETICS

1729
01:07:41,065 --> 01:07:42,867
AS A FIELD IN AND OF ITSELF,

1730
01:07:42,867 --> 01:07:44,602
I'LL TOUCH ON THAT IN A LITTLE

1731
01:07:44,602 --> 01:07:45,002
WHILE.

1732
01:07:45,002 --> 01:07:46,971
THEY HAD FRAGMENTATION ACROSS

1733
01:07:46,971 --> 01:07:50,041
THE NATION IN SMALL SCALE

1734
01:07:50,041 --> 01:07:51,042
ISOLATED EFFORTS AND WE THOUGHT

1735
01:07:51,042 --> 01:07:52,910
IT WAS TIME TO BRING TOGETHER

1736
01:07:52,910 --> 01:07:55,379
THOSE PIECES OF THE PUZZLE.

1737
01:07:55,379 --> 01:07:59,717
WE WANTED TO COMPLEMENT EACH

1738
01:07:59,717 --> 01:08:04,021
OTHER IN TERMS OF THE SKILL,

1739
01:08:04,021 --> 01:08:05,923
EXPERTISE THAT WE HAD, WE WANTED

1740
01:08:05,923 --> 01:08:07,792
TO MAKE SURE THERE WAS OVERSIGHT

1741
01:08:07,792 --> 01:08:09,527
OF SUSTAINABLE NATIONAL EFFORTS.

1742
01:08:09,527 --> 01:08:10,928
WE WANTED TO TAKE THIS SORT OF

1743
01:08:10,928 --> 01:08:12,797
MORAL AND ETHICAL IMPERATIVE OF

1744
01:08:12,797 --> 01:08:17,368
MAKING SURE IF THIS PRECISION

1745
01:08:17,368 --> 01:08:22,173
MEDICINE AGENDA IS HURDLING DOWN

1746
01:08:22,173 --> 01:08:24,575
THE TRAIN TRACKS AT A ZILLION

1747
01:08:24,575 --> 01:08:27,945
MILES AN HOUR THAT WE HAD

1748
01:08:27,945 --> 01:08:32,283
SOME - SOME SAY IN HOW THAT WAS

1749
01:08:32,283 --> 01:08:32,550
DONE.

1750
01:08:32,550 --> 01:08:33,918
THE TRACKS DON'T COME ANYWHERE

1751
01:08:33,918 --> 01:08:36,020
NEAR US, THE TRAIN DOESN'T

1752
01:08:36,020 --> 01:08:37,388
SHOWDOWN ENOUGH FOR US TO JUMP

1753
01:08:37,388 --> 01:08:39,156
ON OR EVEN IF WE WERE, WE'RE NOT

1754
01:08:39,156 --> 01:08:40,224
ABLE TO BUY A TICKET.

1755
01:08:40,224 --> 01:08:41,625
IF HE WITH COULD BUY A TICKET,

1756
01:08:41,625 --> 01:08:42,760
THERE'S NO CARRIAGE FOR US AND

1757
01:08:42,760 --> 01:08:44,662
AS A CONSEQUENCE, THE TRAIN

1758
01:08:44,662 --> 01:08:46,697
HURDLES ON WITHOUT US IN ANY

1759
01:08:46,697 --> 01:08:48,499
WAY, SHAPE OR FORM AND WE WANT

1760
01:08:48,499 --> 01:08:52,403
TO CHANGE THAT DYNAMIC.

1761
01:08:52,403 --> 01:08:54,638
THIS NATIONAL NETWORK, THE

1762
01:08:54,638 --> 01:08:55,973
ALLIANCE, THE AUSTRALIAN

1763
01:08:55,973 --> 01:09:00,144
ALLIANCE FOR INDIGENOUS GENETICS

1764
01:09:00,144 --> 01:09:01,445
CALLED ALIGN, THE JOB WAS REALLY

1765
01:09:01,445 --> 01:09:05,016
TO ESTABLISH THIS NETWORK, WE

1766
01:09:05,016 --> 01:09:07,318
NOW HAVE NODES OF EFFORT RIGHT

1767
01:09:07,318 --> 01:09:08,185
ACROSS THE COUNTRY.

1768
01:09:08,185 --> 01:09:10,354
WE HAVE 45 INDIGENOUS PEOPLE IN

1769
01:09:10,354 --> 01:09:12,423
POSITIONS OF INDIGENOUS

1770
01:09:12,423 --> 01:09:13,624
GOVERNANCE ACROSS ALL

1771
01:09:13,624 --> 01:09:14,225
JURISDICTIONS.

1772
01:09:14,225 --> 01:09:20,931
THE JOB IS TO ENHANCE ABORIGINAL

1773
01:09:20,931 --> 01:09:22,366
SENSE OF CONTROL OVER HOW THIS

1774
01:09:22,366 --> 01:09:23,334
WORK GETS DONE AND WHAT THEY

1775
01:09:23,334 --> 01:09:25,102
CHOOSE TO BE INVOLVED IN OR NO.

1776
01:09:25,102 --> 01:09:26,937
OUR JOB AS A NETWORK IS TO

1777
01:09:26,937 --> 01:09:28,939
IDENTIFY THE KEY POLICY MANNERS,

1778
01:09:28,939 --> 01:09:32,276
HOW DO WE RESPOND, WHAT ARE THE

1779
01:09:32,276 --> 01:09:34,111
ELEMENTS OF BEST PRACTICE THAT

1780
01:09:34,111 --> 01:09:36,680
EXIST OR NEED TO BE DEVELOPED

1781
01:09:36,680 --> 01:09:38,616
AND COMMUNICATED, HOW DO WE

1782
01:09:38,616 --> 01:09:41,185
BUILD CAPACITY AT NATIONAL SCALE

1783
01:09:41,185 --> 01:09:47,224
FOR WHAT'S REQUIRED HERE AND AS

1784
01:09:47,224 --> 01:09:48,526
I SORT OF TOUCHED ON EARLIER

1785
01:09:48,526 --> 01:09:50,661
BEFORE, HOW DO WE DEFINE IN

1786
01:09:50,661 --> 01:09:51,729
PARTNERSHIP WITH COMMUNITIES

1787
01:09:51,729 --> 01:09:53,731
WHAT THEY SEE AS POTENTIAL

1788
01:09:53,731 --> 01:09:56,100
BENEFITS OF GENETICS ENABLED

1789
01:09:56,100 --> 01:09:56,901
HEALTHCARE SYSTEM OF THE FUTURE,

1790
01:09:56,901 --> 01:10:00,037
AND ACCORDING TO SOME USER CASE

1791
01:10:00,037 --> 01:10:01,472
SCENARIO, WHERE GENOMICS IS MORE

1792
01:10:01,472 --> 01:10:04,075
PROXIMAL IN ITS APPLICATION TO

1793
01:10:04,075 --> 01:10:05,743
HEALTH AND HEALTHCARE DELIVERY

1794
01:10:05,743 --> 01:10:09,346
IN THIS NATION, WHAT'S THE PLAN

1795
01:10:09,346 --> 01:10:11,649
TO ENSURE THAT IT DELIVERS THE

1796
01:10:11,649 --> 01:10:13,451
BENEFIT THAT COMMUNITIES DEFINE

1797
01:10:13,451 --> 01:10:15,152
THEMSELVES AND THOSE TARGET

1798
01:10:15,152 --> 01:10:20,691
AREAS OF PHARMACOGENOMICS, OUR

1799
01:10:20,691 --> 01:10:22,560
QUEENS LAND NODE, PRECISION

1800
01:10:22,560 --> 01:10:26,063
MEDICINE, OUR GENOME BIOLOGY AND

1801
01:10:26,063 --> 01:10:28,365
WORK LED OUT OF THE NATIONAL

1802
01:10:28,365 --> 01:10:30,868
CENTER FOR INDIGENOUS GENOMICS,

1803
01:10:30,868 --> 01:10:32,636
OUR IMMUNOGENOMICS FLAGSHIP IS

1804
01:10:32,636 --> 01:10:34,605
LED OUT OF VICTORIA, AND OUR

1805
01:10:34,605 --> 01:10:39,477
WESTERN YOU A STRAIL YAL AUSTRAS

1806
01:10:39,477 --> 01:10:40,644
LEAD EFFORTS AROUND RARE DISEASE

1807
01:10:40,644 --> 01:10:43,581
AND WHAT THAT MEANS FOR

1808
01:10:43,581 --> 01:10:44,448
INDIGENOUS COMMUNITIES.

1809
01:10:44,448 --> 01:10:45,316
WHERE WE'RE HEADING IN TERMS OF

1810
01:10:45,316 --> 01:10:46,750
WHAT WE THINK IS SORT OF A

1811
01:10:46,750 --> 01:10:49,920
RESEARCH AGENDA FOR GENOMICS AT

1812
01:10:49,920 --> 01:10:51,689
NATIONAL SCALE, IMPORTANTLY A

1813
01:10:51,689 --> 01:10:52,756
FOCUS ON PEOPLE AND DEVELOPING

1814
01:10:52,756 --> 01:10:55,926
THE NEXT GENERATION OF

1815
01:10:55,926 --> 01:10:56,894
INDIGENOUS GENETICS SCIENTISTS,

1816
01:10:56,894 --> 01:10:58,262
SO THAT IS OUR PRIMARY FUNCTION,

1817
01:10:58,262 --> 01:11:00,598
BUT IN ORDER FOR US TO DO THIS,

1818
01:11:00,598 --> 01:11:02,366
WE UNDERSTAND THERE IS A JOB TO

1819
01:11:02,366 --> 01:11:05,870
DO TO INFORM AND EDUCATE AND

1820
01:11:05,870 --> 01:11:09,340
GUIDE OR USE THE WORD GUIDE

1821
01:11:09,340 --> 01:11:10,441
DIPLOMATICALLY HERE,

1822
01:11:10,441 --> 01:11:13,177
NON-INDIGENOUS INTERESTS IN

1823
01:11:13,177 --> 01:11:14,345
THEIR APPLICATION TO INDIGENOUS

1824
01:11:14,345 --> 01:11:17,882
HEALTH AS WELL.

1825
01:11:17,882 --> 01:11:22,686
HE WITH WWE WANT TO ENSURE WE HA

1826
01:11:22,686 --> 01:11:23,954
PICTURE OF GENOMIC VARIATION SO

1827
01:11:23,954 --> 01:11:25,956
TOOLS CAN BE DEVELOPED AND CAN

1828
01:11:25,956 --> 01:11:28,559
BE DEPLOYED AND APPLIED TO

1829
01:11:28,559 --> 01:11:29,827
HEALTH OF OUR COMMUNITIES, OUR

1830
01:11:29,827 --> 01:11:30,594
WAY.

1831
01:11:30,594 --> 01:11:33,030
WE WANT TO DEVELOP GENOMIC

1832
01:11:33,030 --> 01:11:39,270
RESOURCES INCLUDING T2 T

1833
01:11:39,270 --> 01:11:40,905
ASSEMBLIES AND REFERENCE

1834
01:11:40,905 --> 01:11:44,608
GENOMES, BUT HAS TO ALSO BE

1835
01:11:44,608 --> 01:11:45,776
CONSIDERING OF THE TOOLS AND

1836
01:11:45,776 --> 01:11:47,878
RESOURCES REQUIRED TO INFORM AND

1837
01:11:47,878 --> 01:11:48,846
ENGAGE AND SUPPORT COMMUNITIES

1838
01:11:48,846 --> 01:11:50,681
IN THEIR DECISION-MAKING AROUND

1839
01:11:50,681 --> 01:11:51,215
INVOLVEMENT IN GENOMICS.

1840
01:11:51,215 --> 01:11:53,083
WE HAVE A LOT OF INTEREST AND

1841
01:11:53,083 --> 01:11:56,587
EFFORT ALREADY IN PLAY AROUND

1842
01:11:56,587 --> 01:11:58,088
PRECISION MEDICINE APPLICATIONS

1843
01:11:58,088 --> 01:11:59,190
AND OUR AMBITION IS TO TARGET

1844
01:11:59,190 --> 01:12:03,360
THE CONDITIONS THAT DRIVE THE

1845
01:12:03,360 --> 01:12:04,295
GREATEST DEGREE IN EQUALITY AND

1846
01:12:04,295 --> 01:12:06,163
HEALTH OUTCOMES FOR OUR

1847
01:12:06,163 --> 01:12:06,931
COMMUNITIES, SO THAT WOULD BE

1848
01:12:06,931 --> 01:12:08,566
HEART DISEASE, DIABETES, AND

1849
01:12:08,566 --> 01:12:13,170
CANCER AT THIS STAGE.

1850
01:12:13,170 --> 01:12:14,104
AND THINKING THROUGH WHAT IT'S

1851
01:12:14,104 --> 01:12:15,005
GOING TO TAKE TO DELIVER TOOLS

1852
01:12:15,005 --> 01:12:18,175
THAT COULD BE DEPLOYED IN

1853
01:12:18,175 --> 01:12:19,043
HEALTHCARE SYSTEMS FOR OUR

1854
01:12:19,043 --> 01:12:21,312
COMMUNITIES INTO THE FUTURE.

1855
01:12:21,312 --> 01:12:23,714
AND IN THE ABILITY TO BEND THE

1856
01:12:23,714 --> 01:12:28,219
WILL OF GENETICS TO APPLY IN OUR

1857
01:12:28,219 --> 01:12:29,253
BIODIVERSITY ECOLOGICAL HEALTH

1858
01:12:29,253 --> 01:12:31,255
AND WELL-BEING AND THAT

1859
01:12:31,255 --> 01:12:32,990
INTERRELATIONSHIP WITH HEALTH OF

1860
01:12:32,990 --> 01:12:35,626
OUR POPULATIONS GIVEN A

1861
01:12:35,626 --> 01:12:37,761
SYMBIOTIC RELATIONSHIP BETWEEN

1862
01:12:37,761 --> 01:12:43,334
COMMUNITIES AND PLACE.

1863
01:12:43,334 --> 01:12:44,868
I'LL NOW POSE TO YOU A FEW

1864
01:12:44,868 --> 01:12:46,403
QUESTIONS TO SORT OF GET YOU

1865
01:12:46,403 --> 01:12:47,438
THINKING MAYBE ABOUT WHERE WE'RE

1866
01:12:47,438 --> 01:12:50,541
AT AND WHERE THE FUTURE MAY TAKE

1867
01:12:50,541 --> 01:12:53,711
US AT LEAST IN TERMS OF GENOMICS

1868
01:12:53,711 --> 01:12:58,716
EFFORTS MORE BROADLY.

1869
01:12:58,716 --> 01:13:00,351
I'LL TOUCH ON THE FOUR THAT WE

1870
01:13:00,351 --> 01:13:02,219
ARE SEEING THE BIRTH OF

1871
01:13:02,219 --> 01:13:03,420
INDIGENOUS GENOMICS AS A

1872
01:13:03,420 --> 01:13:05,489
MOVEMENT AS WELL AS I FEEL AS A

1873
01:13:05,489 --> 01:13:06,023
SCIENTIFIC FIELD.

1874
01:13:06,023 --> 01:13:10,394
WE NOW HAVE INTERNATIONALLY

1875
01:13:10,394 --> 01:13:14,665
CONNECTED PARTNERS IN THE SAME

1876
01:13:14,665 --> 01:13:18,602
CONSORTIA, THE SUMMER INTERNSHIP

1877
01:13:18,602 --> 01:13:20,037
FOR INDIGENOUS PEOPLES AND

1878
01:13:20,037 --> 01:13:21,005
GENOMICS STARTED IN THE U.S. AND

1879
01:13:21,005 --> 01:13:25,542
REALLY QUICKLY SPREAD TO -- AND

1880
01:13:25,542 --> 01:13:26,644
OTHER COMMUNITIES ACROSS THE

1881
01:13:26,644 --> 01:13:28,746
GLOBE TO BUILD CAPACITY AND

1882
01:13:28,746 --> 01:13:31,448
ENGAGEMENT AND PLACE TO DISCUSS

1883
01:13:31,448 --> 01:13:34,585
MATTERS OF INDIGENOUS GENOMICS.

1884
01:13:34,585 --> 01:13:36,220
THE IMPORTANT REALITY HERE IS

1885
01:13:36,220 --> 01:13:38,956
IT'S NOT JUST, OKAY, HOW DO WE

1886
01:13:38,956 --> 01:13:42,660
TAKE ALL THESE APPROACHES AND

1887
01:13:42,660 --> 01:13:44,194
DEPLOY THEM IN INDIGENOUS

1888
01:13:44,194 --> 01:13:44,628
COMMUNITIES.

1889
01:13:44,628 --> 01:13:45,729
THE METHODS THAT WE'RE GOING TO

1890
01:13:45,729 --> 01:13:48,465
NEED TO DEVELOP, OUR

1891
01:13:48,465 --> 01:13:50,000
UNDERSTANDING OF CULTURE AND

1892
01:13:50,000 --> 01:13:53,070
CONTEXT IN PLACE OVER TIME WILL

1893
01:13:53,070 --> 01:13:54,738
HAVE IMPORTANT IMPLICATIONS FOR

1894
01:13:54,738 --> 01:13:59,176
THE WAY IN WHICH WE DO GENETICS,

1895
01:13:59,176 --> 01:14:00,577
AND THAT SHOULD BE INFORMED BY

1896
01:14:00,577 --> 01:14:01,779
INDIGENOUS PEOPLE AND INDIGENOUS

1897
01:14:01,779 --> 01:14:04,715
KNOWLEDGE SYSTEMS, I THINK

1898
01:14:04,715 --> 01:14:05,916
IMPORTANTLY AS PHIL IN

1899
01:14:05,916 --> 01:14:08,452
PARTICULAR GAVE A FEW CRITICAL

1900
01:14:08,452 --> 01:14:09,787
EXAMPLES.

1901
01:14:09,787 --> 01:14:14,558
THE OTHER QUESTION WE NEED TO

1902
01:14:14,558 --> 01:14:17,094
POSE IS REALLY WHAT IS DRIVING

1903
01:14:17,094 --> 01:14:18,062
THIS DIVERSITY AGENDA IN

1904
01:14:18,062 --> 01:14:18,662
GENOMICS.

1905
01:14:18,662 --> 01:14:20,097
NOW IF WE WERE TO SPEAK TO MOST

1906
01:14:20,097 --> 01:14:21,665
OF THE SORT OF BROAD GENETICS

1907
01:14:21,665 --> 01:14:23,100
COMMUNITY, IT'S ALL ABOUT

1908
01:14:23,100 --> 01:14:23,967
ALTRUISM BECAUSE THEY WANT TO

1909
01:14:23,967 --> 01:14:25,836
MAKE SURE THAT THEY'RE DOING

1910
01:14:25,836 --> 01:14:28,205
GOOD THINGS FOR INDIGENOUS

1911
01:14:28,205 --> 01:14:29,973
INTERESTS BUT THERE ARE OTHER

1912
01:14:29,973 --> 01:14:32,843
FORCES AT PLAY THAT MIGHT IN

1913
01:14:32,843 --> 01:14:35,946
FACT BE INFLUENCING THAT AGENDA,

1914
01:14:35,946 --> 01:14:40,217
IS IT A SENSE OF GUILT, IS IT

1915
01:14:40,217 --> 01:14:41,552
UNBRIDLED AMBITION, IS IT A

1916
01:14:41,552 --> 01:14:44,154
SEARCH FOR POWER, OR IS

1917
01:14:44,154 --> 01:14:45,556
INDIGENOUS GENOMICS JUST THE

1918
01:14:45,556 --> 01:14:48,192
NEXT BIG THING ALONG THE

1919
01:14:48,192 --> 01:14:51,328
PIPELINE OF CREATING

1920
01:14:51,328 --> 01:14:52,896
LONG-STANDING CAREERS AND

1921
01:14:52,896 --> 01:14:55,599
AGENDAS AND RESOURCE ALLOCATION

1922
01:14:55,599 --> 01:14:57,801
FOR LARGE GROUPS WHO HAVE

1923
01:14:57,801 --> 01:14:59,536
PREVIOUSLY IGNORED INDIGENOUS

1924
01:14:59,536 --> 01:15:01,405
INTERESTS BUT NOW WANT TO FIND A

1925
01:15:01,405 --> 01:15:02,272
WAY TO CONNECT.

1926
01:15:02,272 --> 01:15:05,776
NOW I KNOW THAT SOUNDS A LITTLE

1927
01:15:05,776 --> 01:15:10,781
CYNICAL, BUT IT'S CERTAINLY A

1928
01:15:10,781 --> 01:15:11,982
QUESTION WE SHOULD MAINTAIN AS

1929
01:15:11,982 --> 01:15:13,083
WE ENGAGE WITH BROADER

1930
01:15:13,083 --> 01:15:16,120
COMMUNITIES WHO WANT TO NOW WORK

1931
01:15:16,120 --> 01:15:17,788
WITH INDIGENOUS PEOPLES AND

1932
01:15:17,788 --> 01:15:18,255
COMMUNITIES.

1933
01:15:18,255 --> 01:15:19,189
THE OTHER CHALLENGE IS

1934
01:15:19,189 --> 01:15:20,624
RESEARCHERS ARE REALLY GOOD AT

1935
01:15:20,624 --> 01:15:23,127
SELLING BENEFIT, AND I KNOW THIS

1936
01:15:23,127 --> 01:15:24,194
BECAUSE THAT'S WHAT I DO FOR A

1937
01:15:24,194 --> 01:15:24,661
LIVING.

1938
01:15:24,661 --> 01:15:28,232
MY JOB IS TO CONVINCE PEOPLE OF

1939
01:15:28,232 --> 01:15:29,199
ANY PERSUASION THAT OUR APPROACH

1940
01:15:29,199 --> 01:15:30,667
IS GOING TO BE BETTER THAN WHAT

1941
01:15:30,667 --> 01:15:34,037
ANYONE ELSE DID AND WE CAN

1942
01:15:34,037 --> 01:15:36,607
DELIVER NIRVANA WITH A PAPERCLIP

1943
01:15:36,607 --> 01:15:44,214
AND A SMALL BIT OF GAFFER TAPE.

1944
01:15:44,214 --> 01:15:45,716
THE REALITY IS MOST OF THOSE

1945
01:15:45,716 --> 01:15:46,383
BENEFITS AREN'T ACTUALLY

1946
01:15:46,383 --> 01:15:47,418
DELIVERED TO COMMUNITIES AND

1947
01:15:47,418 --> 01:15:49,219
CRYSTAL TOUCHED ON THIS EARLIER.

1948
01:15:49,219 --> 01:15:53,257
THE CHALLENGE IS HOW DO WE

1949
01:15:53,257 --> 01:15:54,491
NEGOTIATE BENEFIT WITH

1950
01:15:54,491 --> 01:15:56,427
COMMUNITIES WHO ARE SEEKING TO

1951
01:15:56,427 --> 01:16:01,365
ENGAGE WITH, SHOULDN'T THEY BE

1952
01:16:01,365 --> 01:16:02,900
THE ULTIMATE ARBITER OF WHAT

1953
01:16:02,900 --> 01:16:04,835
BENEFITS THEY CAN EXPECT AND

1954
01:16:04,835 --> 01:16:06,270
WHAT BENEFITS THEY CAN HOLD

1955
01:16:06,270 --> 01:16:07,137
RESEARCHERS TO ACCOUNT FOR IN

1956
01:16:07,137 --> 01:16:08,572
THE EVENT THEY ARE NOT

1957
01:16:08,572 --> 01:16:09,039
DELIVERED.

1958
01:16:09,039 --> 01:16:10,407
THIS IS A MUCH HARDER SET OF

1959
01:16:10,407 --> 01:16:11,008
CONVERSATIONS.

1960
01:16:11,008 --> 01:16:14,011
IT'S SOMETHING THAT RESEARCHERS

1961
01:16:14,011 --> 01:16:16,313
ARE NOT PARTICULARLY SKILLED AT

1962
01:16:16,313 --> 01:16:16,747
DOING.

1963
01:16:16,747 --> 01:16:19,049
AND WE THINK THERE NEEDS TO BE A

1964
01:16:19,049 --> 01:16:22,186
REAL SHIFT IN THE POWERBALL ANS

1965
01:16:22,186 --> 01:16:23,720
OF WHO DECIDES WHAT BENEFIT IS

1966
01:16:23,720 --> 01:16:25,489
AND HOW IS THAT DELIVERED ACROSS

1967
01:16:25,489 --> 01:16:26,790
TIME.

1968
01:16:26,790 --> 01:16:29,960
I THINK THE OTHER QUESTION IS,

1969
01:16:29,960 --> 01:16:32,029
INCLUSION ISN'T GOOD ENOUGH, AND

1970
01:16:32,029 --> 01:16:34,431
IT WON'T DELIVER EQUITY IN

1971
01:16:34,431 --> 01:16:36,066
OUTCOMES FOR OUR COMMUNITIES,

1972
01:16:36,066 --> 01:16:38,635
AND IF WE'RE TO THINK ABOUT WHAT

1973
01:16:38,635 --> 01:16:39,570
EQUITY SHOULD LOOK LIKE, IT'S

1974
01:16:39,570 --> 01:16:43,273
GOING TO BE A LOT MORE THAN

1975
01:16:43,273 --> 01:16:43,707
INCLUSION.

1976
01:16:43,707 --> 01:16:45,242
THE OTHER REALITY IS,

1977
01:16:45,242 --> 01:16:47,311
UNFORTUNATELY ALL OF THE KEYS TO

1978
01:16:47,311 --> 01:16:49,947
THE DOORS TO EQUITY ARE STILL

1979
01:16:49,947 --> 01:16:52,182
HELD IN THE HANDS OF OPPRESSORS,

1980
01:16:52,182 --> 01:16:53,750
AND THIS IS AN ENORMOUS

1981
01:16:53,750 --> 01:16:55,919
CHALLENGE FOR THE WAY IN WHICH

1982
01:16:55,919 --> 01:16:58,021
GENOMICS CAN BE MOVED FORWARD.

1983
01:16:58,021 --> 01:17:00,390
WE THINK THERE'S A BROADER SET

1984
01:17:00,390 --> 01:17:02,259
OF CONSIDERATIONS ABOUT

1985
01:17:02,259 --> 01:17:04,328
DELIVERING AN EQUITY AGENDA IN

1986
01:17:04,328 --> 01:17:11,635
GENETICS GENOMICS THAT WILL BE L

1987
01:17:11,635 --> 01:17:12,402
BASED.

1988
01:17:12,402 --> 01:17:14,404
THESE PRINCIPLES IN EMPOWERMENT,

1989
01:17:14,404 --> 01:17:17,441
RESPECT, TRUST, CULTURE, AND

1990
01:17:17,441 --> 01:17:18,742
BENEFIT BUT THEY COULD BE

1991
01:17:18,742 --> 01:17:19,510
APPLIED SPECIFICALLY FROM THE

1992
01:17:19,510 --> 01:17:20,711
VIEW OF COMMUNITIES THEMSELVES.

1993
01:17:20,711 --> 01:17:21,979
THERE ARE CLEAR FOUNDATIONS THAT

1994
01:17:21,979 --> 01:17:24,314
NEED TO BE IN PLAY, DEDICATED

1995
01:17:24,314 --> 01:17:25,516
RESOURCES, THE RIGHT WORKFORCE,

1996
01:17:25,516 --> 01:17:27,017
THE RIGHT INFRASTRUCTURE THAT

1997
01:17:27,017 --> 01:17:28,452
ENABLES US TO DO THIS WORK AND

1998
01:17:28,452 --> 01:17:32,356
MAKE ACCEPTS SENSE OF IT, COLLED

1999
01:17:32,356 --> 01:17:33,891
CURATE AND PROVIDE CUSTODIANSHIP

2000
01:17:33,891 --> 01:17:34,892
OF APPROPRIATE DATA.

2001
01:17:34,892 --> 01:17:37,194
WE NEED TO BEND THE WILL OF

2002
01:17:37,194 --> 01:17:38,495
GENETICS TO THE THINGS THAT

2003
01:17:38,495 --> 01:17:40,764
MATTER MOST TO US AS INDIGENOUS

2004
01:17:40,764 --> 01:17:41,532
PEOPLES.

2005
01:17:41,532 --> 01:17:44,067
OUR CHOICE IN AUSTRALIA HAS BEEN

2006
01:17:44,067 --> 01:17:47,638
TO FOCUS GENOMICS EFFORTS TODAY

2007
01:17:47,638 --> 01:17:49,740
ON THE CONDITIONS THAT DRIVE THE

2008
01:17:49,740 --> 01:17:54,177
MOST INEQUITY.

2009
01:17:54,177 --> 01:17:55,078
SO THAT'S AN IMPORTANT

2010
01:17:55,078 --> 01:17:56,079
CONSIDERATION, AND PARTICULARLY

2011
01:17:56,079 --> 01:17:57,714
COMMUNITIES WANT US TO USE

2012
01:17:57,714 --> 01:17:59,116
GENOMICS FOR PREVENTING DISEASE

2013
01:17:59,116 --> 01:18:01,418
IN THE FIRST PLACE.

2014
01:18:01,418 --> 01:18:03,787
WHICH IS AN IMPORTANT SET OF

2015
01:18:03,787 --> 01:18:04,154
CONSIDERATIONS.

2016
01:18:04,154 --> 01:18:05,222
THEN HOW DO WE DELIVER THIS?

2017
01:18:05,222 --> 01:18:07,424
HOW DO WE IMPLEMENT AT SCALE,

2018
01:18:07,424 --> 01:18:09,493
HOW DO WE HOLD THE SYSTEM TO

2019
01:18:09,493 --> 01:18:11,895
ACCOUNT, HOW DO WE HARMONIZE THE

2020
01:18:11,895 --> 01:18:17,901
EFFORTS ACROSS THE BOARD.

2021
01:18:17,901 --> 01:18:19,636
THE QUESTION WILL PRECISION

2022
01:18:19,636 --> 01:18:20,837
MEDICINE REDUCE HEALTH

2023
01:18:20,837 --> 01:18:21,738
INEQUALITIES, THIS IS AN

2024
01:18:21,738 --> 01:18:22,172
IMPORTANT QUESTION.

2025
01:18:22,172 --> 01:18:24,341
WE KNOW IT COULD, BUT WILL IT?

2026
01:18:24,341 --> 01:18:26,743
CAN WE PERSONALIZE PREVENTION?

2027
01:18:26,743 --> 01:18:28,712
CAN WE COME TO TERMS WITH THE

2028
01:18:28,712 --> 01:18:31,214
ETHICAL LEGAL SOCIAL AND

2029
01:18:31,214 --> 01:18:32,616
CULTURAL CONSIDERATIONS THAT ARE

2030
01:18:32,616 --> 01:18:35,485
REQUIRED FOR US TO WORK THROUGH

2031
01:18:35,485 --> 01:18:37,220
TO SEE THIS HAPPEN.

2032
01:18:37,220 --> 01:18:41,692
WHO'S IN CONTROL?

2033
01:18:41,692 --> 01:18:42,793
CAN WE IDENTIFY TARGETS FOR

2034
01:18:42,793 --> 01:18:44,227
TREATMENTS AND THEN ACCESS THOSE

2035
01:18:44,227 --> 01:18:45,295
TREATMENTS FOR OUR COMMUNITIES.

2036
01:18:45,295 --> 01:18:47,264
DO WE HAVE THE RIGHT MODELS OF

2037
01:18:47,264 --> 01:18:49,232
CARE, HAVE WE TRAINED THE RIGHT

2038
01:18:49,232 --> 01:18:51,735
WORKFORCE, CAN WE SHIFT THE LENS

2039
01:18:51,735 --> 01:18:55,138
OF GENETICS GENOMICS TO THE REDF

2040
01:18:55,138 --> 01:18:56,440
HEALTH INEQUALITIES.

2041
01:18:56,440 --> 01:18:59,309
AND ANOTHER KEY CONSIDERATION

2042
01:18:59,309 --> 01:19:01,712
FOR US IS CAN GENOMICS CONTEND

2043
01:19:01,712 --> 01:19:03,347
WITH THE PRIMARY DRIVERS OF

2044
01:19:03,347 --> 01:19:04,514
HEALTH INEQUALITIES IN THE FIRST

2045
01:19:04,514 --> 01:19:05,849
PLACE, WHICH ARE THE SOCIAL

2046
01:19:05,849 --> 01:19:09,119
DETERMINANTS AND THE ST STRUCTUL

2047
01:19:09,119 --> 01:19:09,987
INEQUALITYS THAT WE IN OUR

2048
01:19:09,987 --> 01:19:10,554
COMMUNITIES FACE.

2049
01:19:10,554 --> 01:19:12,055
NOW WE MAY BE ABLE TO DO THAT,

2050
01:19:12,055 --> 01:19:13,357
BUT IT'S GOING TO TAKE AN

2051
01:19:13,357 --> 01:19:15,559
ENORMOUS AMOUNT OF COLLECTIVE

2052
01:19:15,559 --> 01:19:18,395
EFFORT AND VISION AND WISE

2053
01:19:18,395 --> 01:19:20,130
COUNSEL FROM OUR COMMUNITIES,

2054
01:19:20,130 --> 01:19:22,199
AND THE APPROPRIATE PLACEMENT OF

2055
01:19:22,199 --> 01:19:24,835
GENOMICS WITHIN A BROADER AGENDA

2056
01:19:24,835 --> 01:19:26,403
TO IMPROVE HEALTH AND SOCIAL

2057
01:19:26,403 --> 01:19:29,773
OUTCOMES FOR OUR COMMUNITIES.

2058
01:19:29,773 --> 01:19:31,074
GENOMICS WILL NOT DEAL WITH THE

2059
01:19:31,074 --> 01:19:32,275
STRUCTURAL DRIVERS OF

2060
01:19:32,275 --> 01:19:33,176
INEQUALITIES, AND THE QUESTION

2061
01:19:33,176 --> 01:19:35,512
IS, IS THAT FAIR TO INVEST WHAT

2062
01:19:35,512 --> 01:19:37,080
WE KNOW IS REQUIRED WHEN THERE

2063
01:19:37,080 --> 01:19:38,715
ARE FAMILIES STILL TRYING TO

2064
01:19:38,715 --> 01:19:40,350
STRUGGLE TO PUT FOOD ON THE

2065
01:19:40,350 --> 01:19:41,652
TABLE EVERY DAY FOR THEIR

2066
01:19:41,652 --> 01:19:43,654
CHILDREN.

2067
01:19:43,654 --> 01:19:44,955
AS IT CURRENTLY STANDS, AND

2068
01:19:44,955 --> 01:19:47,357
CRYSTAL TOUCHED ON THIS, THIS

2069
01:19:47,357 --> 01:19:49,126
ELEMENT OF EQUITY GAS LIGHTING,

2070
01:19:49,126 --> 01:19:52,696
I THINK SHE FRAMED IT AS

2071
01:19:52,696 --> 01:19:53,263
COERCIVENESS.

2072
01:19:53,263 --> 01:19:54,031
WE'RE NOT GETTING THESE

2073
01:19:54,031 --> 01:19:56,199
NARRATIVES IN AUSTRALIA THAT BY

2074
01:19:56,199 --> 01:20:00,137
JUST ASKING FOR APPROPRIATE

2075
01:20:00,137 --> 01:20:01,872
INFORMED CONSENT, AN INDIGENOUS

2076
01:20:01,872 --> 01:20:04,174
GOVERNANCE BY THE WAY OVER HOW

2077
01:20:04,174 --> 01:20:05,375
WORK GETS DONE AND HOW IT'S

2078
01:20:05,375 --> 01:20:06,476
IMPLEMENTED AND TRANSLATED, THAT

2079
01:20:06,476 --> 01:20:11,448
WE ARE NOW FUNDAMENTALLY RYE F Y

2080
01:20:11,448 --> 01:20:12,582
RESPONSIBLE FOR DRIVING

2081
01:20:12,582 --> 01:20:13,450
INEQUALITIES FOR OUR COMMUNITIES

2082
01:20:13,450 --> 01:20:14,351
BECAUSE WE'RE GETTING IN THE WAY

2083
01:20:14,351 --> 01:20:15,752
OF THE MARCH OF SCIENCE AND

2084
01:20:15,752 --> 01:20:16,186
GENOMICS.

2085
01:20:16,186 --> 01:20:19,356
AND THIS IS A HIGHLY PROBLEMATIC

2086
01:20:19,356 --> 01:20:21,858
SPACE AND SOMETHING THAT WE

2087
01:20:21,858 --> 01:20:26,797
REJECT REPEATEDLY, BUT IT STILL

2088
01:20:26,797 --> 01:20:29,633
MAINTAINS STRONG MOMENTUM IN THE

2089
01:20:29,633 --> 01:20:31,368
RESEARCH AND GENOMICS COMMUNITY

2090
01:20:31,368 --> 01:20:33,236
WITHIN AUSTRALIA.

2091
01:20:33,236 --> 01:20:37,074
AND I WONDER IF WE WERE TO LOOK

2092
01:20:37,074 --> 01:20:39,042
AT GENOMICS, RACISM AND

2093
01:20:39,042 --> 01:20:40,777
DISCRIMINATION WHAT WE MIGHT

2094
01:20:40,777 --> 01:20:42,079
FIND, AND WHETHER OR NOT THE

2095
01:20:42,079 --> 01:20:45,282
GENOMICS COMMUNITY IS READY FOR

2096
01:20:45,282 --> 01:20:49,753
THAT.

2097
01:20:49,753 --> 01:20:51,288
THE OTHER CONNECTION IS THAT

2098
01:20:51,288 --> 01:20:52,255
PRECISION MEDICINE IS NOT NEW,

2099
01:20:52,255 --> 01:20:54,024
NOR IS OUR UNDERSTANDING OF

2100
01:20:54,024 --> 01:20:54,558
INHERITANCE.

2101
01:20:54,558 --> 01:20:55,992
WE HAVE 65,000 YEARS OF

2102
01:20:55,992 --> 01:20:57,527
KNOWLEDGE HERE IN AUSTRALIA, AND

2103
01:20:57,527 --> 01:20:58,929
WE MAINTAIN HEALTH AND

2104
01:20:58,929 --> 01:21:00,464
WELL-BEING ACROSS THOSE 65,000

2105
01:21:00,464 --> 01:21:01,665
YEARS LED BY INDIGENOUS

2106
01:21:01,665 --> 01:21:04,167
KNOWLEDGE SYSTEMS OF HEALTH, OF

2107
01:21:04,167 --> 01:21:06,903
WELL-BEING, OF PRESCRIBED

2108
01:21:06,903 --> 01:21:07,537
INTERRELATIONSHIP AND OUR

2109
01:21:07,537 --> 01:21:10,507
UNDERSTANDING OF INHERITANCE.

2110
01:21:10,507 --> 01:21:13,543
THE OTHER QUESTION WE HAVE IS

2111
01:21:13,543 --> 01:21:16,713
THAT -- HOW DO WE APPLY DATA

2112
01:21:16,713 --> 01:21:18,248
PROTECTIONS IN THE CONTEXT OF

2113
01:21:18,248 --> 01:21:19,983
INDIGENOUS GENOMICS.

2114
01:21:19,983 --> 01:21:22,219
OUR CONTENTION HERE IN AUSTRALIA

2115
01:21:22,219 --> 01:21:23,954
IS THAT WE CAN'T BE FAIR AND

2116
01:21:23,954 --> 01:21:25,455
COMPLIANT WITH THE FAIR

2117
01:21:25,455 --> 01:21:28,425
PRINCIPLES UNLESS WE CARE, AND

2118
01:21:28,425 --> 01:21:30,260
THOSE CARE PRINCIPLES BECOME THE

2119
01:21:30,260 --> 01:21:32,462
MOST IMPORTANT STARTING POINT

2120
01:21:32,462 --> 01:21:34,731
FOR US RATHER THAN THE OTHER WAY

2121
01:21:34,731 --> 01:21:35,265
AROUND.

2122
01:21:35,265 --> 01:21:37,033
THE FAIR PRINCIPLES, NO MATTER

2123
01:21:37,033 --> 01:21:38,568
HOW IMPORTANT, THEY ARE SEEN BY

2124
01:21:38,568 --> 01:21:40,437
THE GENOMICS COMMUNITIES, THERE

2125
01:21:40,437 --> 01:21:42,405
ARE ELEMENTS OF THOSE THAT WE

2126
01:21:42,405 --> 01:21:44,808
PROBABLY CAN'T SEE OURSELVES

2127
01:21:44,808 --> 01:21:46,409
BEING ADHERENT TO IN THE NEAR

2128
01:21:46,409 --> 01:21:47,210
FUTURE, AND THERE ARE QUESTIONS

2129
01:21:47,210 --> 01:21:51,348
TO ASK ABOUT HOW, IF

2130
01:21:51,348 --> 01:21:52,015
APPROPRIATELY, INFORMATION IS

2131
01:21:52,015 --> 01:21:55,485
SHARED AND ON WHOSE TERMS.

2132
01:21:55,485 --> 01:21:57,654
SO AS I SAID, INCLUSION IS ONE

2133
01:21:57,654 --> 01:21:58,889
THING, BUT WE HAVE A MUCH

2134
01:21:58,889 --> 01:22:04,127
STRONGER APPETITE PARTICULARLY

2135
01:22:04,127 --> 01:22:07,097
IN AUSTRALIA TO DELIVER A SYSTEM

2136
01:22:07,097 --> 01:22:08,632
OF GENOMICS THAT'S FOCUSED ON

2137
01:22:08,632 --> 01:22:10,600
EQUITY AND OUR ULTIMATE AGENDA

2138
01:22:10,600 --> 01:22:11,902
IS TO MAKE SURE WE'RE IN CONTROL

2139
01:22:11,902 --> 01:22:17,908
OF OUR OWN DESTINIES IN THIS

2140
01:22:17,908 --> 01:22:18,241
SPACE.

2141
01:22:18,241 --> 01:22:20,210
I'LL LEAVE IT THERE.

2142
01:22:20,210 --> 01:22:20,877
THANKS, KARINA.

2143
01:22:20,877 --> 01:22:22,612
>> OKAY, THANK YOU SO MUCH
TO

2144
01:22:22,612 --> 01:22:23,513
ALL OF OUR SPEAKERS.

2145
01:22:23,513 --> 01:22:25,148
IF YOU CAN GO AHEAD AND TURN ON

2146
01:22:25,148 --> 01:22:26,683
YOUR CAMERAS SO WE CAN SEE YOU,

2147
01:22:26,683 --> 01:22:28,084
WE HAVE ABOUT 7 MINUTES AND HAVE

2148
01:22:28,084 --> 01:22:29,186
TIME FOR A FEW QUESTIONS.

2149
01:22:29,186 --> 01:22:30,720
I JUST WANT TO REMIND FOLKS ON

2150
01:22:30,720 --> 01:22:34,858
OUR VIDEOCAST THAT YOU CAN

2151
01:22:34,858 --> 01:22:35,759
SUBMIT QUESTIONS AND WE HAVE

2152
01:22:35,759 --> 01:22:38,461
TIME FOR A FEW.

2153
01:22:38,461 --> 01:22:39,629
AND FIRST I JUST WANT TO SAY

2154
01:22:39,629 --> 01:22:42,199
THANK YOU SO MUCH FOR YOUR

2155
01:22:42,199 --> 01:22:42,699
INCREDIBLE PRESENTATION.

2156
01:22:42,699 --> 01:22:44,835
THEY REALLY JUST BEAUTIFULLY

2157
01:22:44,835 --> 01:22:48,004
BUILT ON ONE ANOTHER AND WE

2158
01:22:48,004 --> 01:22:49,840
COULD SEE MANY, MANY PARALLEL

2159
01:22:49,840 --> 01:22:51,842
PROCESSES ACROSS THE GLOBE

2160
01:22:51,842 --> 01:22:55,879
AROUND OUR CONCERNS AROUND PRIOR

2161
01:22:55,879 --> 01:22:56,947
PRACTICES BUT ALSO WHAT WE NEED

2162
01:22:56,947 --> 01:22:58,949
TO DO FOR THE FUTURE AND MOVING

2163
01:22:58,949 --> 01:23:02,219
AHEAD TO ENSURE OUR SOVEREIGNTY

2164
01:23:02,219 --> 01:23:04,621
IN THIS PROCESS.

2165
01:23:04,621 --> 01:23:09,993
SO ONE OF THE QUESTIONS ASKED,

2166
01:23:09,993 --> 01:23:12,062
THERE SEEMS TO BE LOW INPUT FROM

2167
01:23:12,062 --> 01:23:13,263
INDIGENOUS COMMUNITIES ABOUT

2168
01:23:13,263 --> 01:23:17,100
WHETHER THEY ARE OKAY WITH THE

2169
01:23:17,100 --> 01:23:23,306
CREATION OF A REFERENCE GENOME.

2170
01:23:23,306 --> 01:23:25,842
WHAT CAN YOU ADD TO THAT

2171
01:23:25,842 --> 01:23:26,943
CONCERN, AND HOW ARE PEOPLE

2172
01:23:26,943 --> 01:23:32,616
ADDRESSING THAT?

2173
01:23:32,616 --> 01:23:34,150
ALEX, WOULD YOU LIKE TO TAKE

2174
01:23:34,150 --> 01:23:35,252
THAT SINCE --

2175
01:23:35,252 --> 01:23:37,220
>> I CAN CERTAINLY START
AND I'M

2176
01:23:37,220 --> 01:23:38,521
SURE THAT PHIL AND CRYSTAL WILL

2177
01:23:38,521 --> 01:23:41,491
HAVE THINGS TO ADD.

2178
01:23:41,491 --> 01:23:43,560
I AGREE, THERE HAS NOT BEEN

2179
01:23:43,560 --> 01:23:45,629
SIGNIFICANT ENGAGEMENT WITH

2180
01:23:45,629 --> 01:23:46,630
COMMUNITIES ABOUT WHAT A

2181
01:23:46,630 --> 01:23:48,031
REFERENCE GENOME IS.

2182
01:23:48,031 --> 01:23:49,799
LET ALONE WHAT IT REPRESENTS.

2183
01:23:49,799 --> 01:23:51,534
AND HOW IMPORTANT IT MIGHT OR

2184
01:23:51,534 --> 01:23:53,169
MIGHT NOT BE IN TERMS OF

2185
01:23:53,169 --> 01:23:55,272
PURSUING OUR INTERESTS.

2186
01:23:55,272 --> 01:23:56,706
THE REFERENCE GENOME WORK

2187
01:23:56,706 --> 01:23:57,908
HAPPENING WITH INDIGENOUS

2188
01:23:57,908 --> 01:23:59,309
COMMUNITIES IN AUSTRALIA,

2189
01:23:59,309 --> 01:24:01,845
THERE'S PROBABLY TWO THINGS TO

2190
01:24:01,845 --> 01:24:02,812
CONSIDER.

2191
01:24:02,812 --> 01:24:05,448
THE REFERENCE GENOME IS BASED ON

2192
01:24:05,448 --> 01:24:06,516
SAMPLES FROM COMMUNITIES WHERE

2193
01:24:06,516 --> 01:24:09,586
THIS WAS DISCUSSED AND WHERE WE

2194
01:24:09,586 --> 01:24:10,820
HAD MULTIPLE LAYERS OF CONSENT

2195
01:24:10,820 --> 01:24:11,521
FROM COMMUNITIES ABOUT

2196
01:24:11,521 --> 01:24:13,690
PROGRESSING.

2197
01:24:13,690 --> 01:24:15,525
THE SECOND IS, WE'VE GOT WORK TO

2198
01:24:15,525 --> 01:24:18,328
DO AS A SYSTEM TO ANSWER TWO

2199
01:24:18,328 --> 01:24:20,030
FUNDAMENTAL QUESTIONS.

2200
01:24:20,030 --> 01:24:21,665
ONE IS, IS ONE REFERENCE GENOME

2201
01:24:21,665 --> 01:24:22,632
EVEN GOING TO BE ENOUGH, WHICH

2202
01:24:22,632 --> 01:24:24,935
IT MAY NOT BE, AND I THINK OUR

2203
01:24:24,935 --> 01:24:25,936
VARIATION ACROSS INDIGENOUS

2204
01:24:25,936 --> 01:24:27,437
COMMUNITIES IN AUSTRALIA WOULD

2205
01:24:27,437 --> 01:24:28,538
SUGGEST WE NEED TO BE CAUTIOUS

2206
01:24:28,538 --> 01:24:29,973
ABOUT THAT.

2207
01:24:29,973 --> 01:24:31,741
THE SECOND IS, HOW IS IT USED

2208
01:24:31,741 --> 01:24:33,276
AND HOW IS IT GOING TO MAKE A

2209
01:24:33,276 --> 01:24:35,578
DIFFERENCE TO OUR FUTURE HEALTH

2210
01:24:35,578 --> 01:24:38,181
AND WELL-BEING?

2211
01:24:38,181 --> 01:24:40,383
AND I THINK THERE'S STILL

2212
01:24:40,383 --> 01:24:41,451
ENORMOUS CONVERSATIONS TO BE HAD

2213
01:24:41,451 --> 01:24:42,919
WITH COMMUNITIES TO ANSWER THOSE

2214
01:24:42,919 --> 01:24:45,455
FUNDAMENTAL QUESTIONS.

2215
01:24:45,455 --> 01:24:46,456
>> THANK YOU.

2216
01:24:46,456 --> 01:24:51,661
PHIL OR CRYSTAL?

2217
01:24:51,661 --> 01:24:53,296
>> I THINK YOU'RE RIGHT, I
MEAN,

2218
01:24:53,296 --> 01:24:56,800
THERE NEEDS TO BE MORE

2219
01:24:56,800 --> 01:24:58,768
PARTICIPATION ENGAGEMENT WITH

2220
01:24:58,768 --> 01:25:00,403
COMMUNITIES ABOUT NOT ONLY WHAT

2221
01:25:00,403 --> 01:25:03,373
INDIGENOUS REFERENCE GENOME IS,

2222
01:25:03,373 --> 01:25:06,943
BUT ALSO -- AND THERE HAVE BEEN

2223
01:25:06,943 --> 01:25:10,046
SOME ENGAGED ACTIVITIES TALKING

2224
01:25:10,046 --> 01:25:13,750
ABOUT, LAKE, SPECIFICALLY AND

2225
01:25:13,750 --> 01:25:14,951
TRUTHFULLY, WHAT IS HAPPENING

2226
01:25:14,951 --> 01:25:20,623
WITH INDIGENOUS PEOPLES' GENOMIC

2227
01:25:20,623 --> 01:25:22,492
DATA AFTER A PROJECT ENDS, LIKE

2228
01:25:22,492 --> 01:25:24,361
WHERE DOES IT GET DEPOSITED, WHO

2229
01:25:24,361 --> 01:25:30,700
GETS ACCESS TO THAT POINT, AND

2230
01:25:30,700 --> 01:25:32,135
ALSO ESPECIALLY FOR INDIGENOUS

2231
01:25:32,135 --> 01:25:34,104
PEOPLES THAT ARE RECRUITED,

2232
01:25:34,104 --> 01:25:38,041
URBAN SETTINGS, ESPECIALLY IN

2233
01:25:38,041 --> 01:25:41,211
CLINICAL CARE SETTINGS, THAT

2234
01:25:41,211 --> 01:25:43,513
DISTINCTION BETWEEN

2235
01:25:43,513 --> 01:25:45,281
PARTICIPATING IN RESEARCH AND

2236
01:25:45,281 --> 01:25:46,383
WHAT THAT ENTAILS IN ITS

2237
01:25:46,383 --> 01:25:49,519
ENTIRETY VERSUS PARTICIPATING OR

2238
01:25:49,519 --> 01:25:50,520
JUST RECEIVING CARE IN THAT

2239
01:25:50,520 --> 01:25:53,490
CLINICAL SETTING.

2240
01:25:53,490 --> 01:25:55,291
SO I THINK THE NATIONAL

2241
01:25:55,291 --> 01:25:58,528
ACADEMIES HAS A REPORT OUT

2242
01:25:58,528 --> 01:26:02,799
RECENTLY ON COMMUNITY ENGAGEMENT

2243
01:26:02,799 --> 01:26:05,201
AND I CONTRIBUTED A TALK

2244
01:26:05,201 --> 01:26:09,072
ABOUT -- WITH DR. ANDREW BUSCAL,

2245
01:26:09,072 --> 01:26:10,240
WE STARTED TALKING ABOUT

2246
01:26:10,240 --> 01:26:11,241
ENGAGEMENT WASHING.

2247
01:26:11,241 --> 01:26:13,643
THAT SOMETIMES WE DO LIKE THIS

2248
01:26:13,643 --> 01:26:15,945
ONE LITTLE CONSULTATION OR

2249
01:26:15,945 --> 01:26:16,880
LISTENING SESSION WITH

2250
01:26:16,880 --> 01:26:18,181
INDIGENOUS PEOPLES AND IT'S

2251
01:26:18,181 --> 01:26:19,716
LIKE, OH, THERE'S THE CONSENT.

2252
01:26:19,716 --> 01:26:24,521
WE GOT THEIR BUY-IN.

2253
01:26:24,521 --> 01:26:26,389
ALSO WE DON'T THINK ABOUT

2254
01:26:26,389 --> 01:26:28,258
ENGAGEMENT ACROSS THE DATA

2255
01:26:28,258 --> 01:26:29,459
LIFECYCLE, WE TALK ABOUT

2256
01:26:29,459 --> 01:26:30,794
ENGAGEMENT MAYBE AT THE POINT OF

2257
01:26:30,794 --> 01:26:33,730
ORIGINATION OF THAT DATA BEING

2258
01:26:33,730 --> 01:26:34,831
GENERATED ANEW, BUT WE DON'T

2259
01:26:34,831 --> 01:26:36,833
REALLY TALK ABOUT LIKE THE

2260
01:26:36,833 --> 01:26:38,668
SUSTAINED LIFECYCLE OF LIKE

2261
01:26:38,668 --> 01:26:42,705
WHERE -- AND DATA IS LONGER IN

2262
01:26:42,705 --> 01:26:43,573
THOSE STAGES.

2263
01:26:43,573 --> 01:26:44,674
SO THERE'S JUST SO MUCH MORE

2264
01:26:44,674 --> 01:26:45,909
THAT NEEDS TO HAPPEN.

2265
01:26:45,909 --> 01:26:48,078
>> I FEEL LIKE WE'RE JUST
AT THE

2266
01:26:48,078 --> 01:26:49,079
BEGINNING OF THESE

2267
01:26:49,079 --> 01:26:50,280
CONVERSATIONS, HONESTLY.

2268
01:26:50,280 --> 01:26:51,381
PHIL, ANYTHING YOU'D LIKE TO ADD

2269
01:26:51,381 --> 01:26:52,482
TO THAT?

2270
01:26:52,482 --> 01:26:54,984
>> I THINK THERE'S A
NUMBER OF

2271
01:26:54,984 --> 01:26:56,086
FACTORS AT PLAY.

2272
01:26:56,086 --> 01:27:00,890
ONE IS OUR COMMUNITIES DON'T

2273
01:27:00,890 --> 01:27:02,759
NECESSARILY HAVE THE CAPACITY TO

2274
01:27:02,759 --> 01:27:03,626
EFFECTIVE ENGAGE BECAUSE THEY'VE

2275
01:27:03,626 --> 01:27:05,161
GOT SO MANY OTHER ISSUES THAT

2276
01:27:05,161 --> 01:27:09,299
ARE PRIORITY FOR THEM.

2277
01:27:09,299 --> 01:27:11,501
SO HOW WE'VE ADDRESSED THOSE

2278
01:27:11,501 --> 01:27:12,402
PRAGMATIC ISSUES IS WORKING

2279
01:27:12,402 --> 01:27:14,471
THROUGH HEALTH PROVIDERS, MAORI

2280
01:27:14,471 --> 01:27:15,538
HEALTH PROVIDERS INCLUDING

2281
01:27:15,538 --> 01:27:16,339
TRIBAL HEALTH PROVIDERS BECAUSE

2282
01:27:16,339 --> 01:27:18,274
WE HAVE SIGNIFICANT PROPORTION

2283
01:27:18,274 --> 01:27:21,444
OF OUR PEOPLE LIVING IN URBAN

2284
01:27:21,444 --> 01:27:23,313
AREAS OUTSIDE OF THEIR

2285
01:27:23,313 --> 01:27:27,083
TRADITIONAL TRAIBL BOUNDARI TRIS

2286
01:27:27,083 --> 01:27:29,452
AND THEIR MAORI HEALTH

2287
01:27:29,452 --> 01:27:30,487
PROVIDERS.

2288
01:27:30,487 --> 01:27:31,955
THAT WE'VE ENGAGED WITH AND HAVE

2289
01:27:31,955 --> 01:27:34,791
HELPED US RECRUIT INTO THE VERY

2290
01:27:34,791 --> 01:27:35,792
OWN PROJECT.

2291
01:27:35,792 --> 01:27:37,894
THEY ARE CLOSER TO UNDERSTANDING

2292
01:27:37,894 --> 01:27:39,395
BENEFITS, THEY'RE CLOSER TO

2293
01:27:39,395 --> 01:27:40,497
UNDERSTANDING THE SOCIAL

2294
01:27:40,497 --> 01:27:41,264
DETERMINANTS, AS WELL AS THE BUY

2295
01:27:41,264 --> 01:27:44,901
LONGBIOLOGICAL DETERMINANTS OF

2296
01:27:44,901 --> 01:27:48,705
HEALTH.

2297
01:27:48,705 --> 01:27:50,807
SO LACKING COMMUNITY ENGAGEMENT

2298
01:27:50,807 --> 01:27:52,242
IS NOT NECESSARILY LACKING

2299
01:27:52,242 --> 01:27:53,109
MEANINGFUL ENGAGEMENT.

2300
01:27:53,109 --> 01:27:56,946
THE OTHER POINT TO MAKE TOO IS

2301
01:27:56,946 --> 01:27:59,249
THAT WE HAVE USED -- AND I

2302
01:27:59,249 --> 01:28:00,350
DIDN'T TALK ABOUT THIS IN MY

2303
01:28:00,350 --> 01:28:00,783
PRESENTATION.

2304
01:28:00,783 --> 01:28:03,853
THERE ARE MAORI MODELS OF

2305
01:28:03,853 --> 01:28:05,054
HEALTH, HEALTH FRAME WORKS, AND

2306
01:28:05,054 --> 01:28:08,024
WE'VE DEVELOPED OUR PROJECT IN

2307
01:28:08,024 --> 01:28:12,061
PART ACCORDING TO THOSE FRAME

2308
01:28:12,061 --> 01:28:13,329
WORKS RATHER THAN OUR STANDARD

2309
01:28:13,329 --> 01:28:14,597
WESTERN MEDICAL MODEL.

2310
01:28:14,597 --> 01:28:16,232
YES, WE'VE USED THE STANDARD

2311
01:28:16,232 --> 01:28:17,667
WESTERN MEDICAL MODEL BUT THOSE

2312
01:28:17,667 --> 01:28:18,868
HEALTH FRAME WORKS HAVE BEEN

2313
01:28:18,868 --> 01:28:21,671
BROADLY APPLIED UP TO TWO

2314
01:28:21,671 --> 01:28:23,373
DECADES AGO, BEGINNING TWO

2315
01:28:23,373 --> 01:28:23,907
DECADES AGO.

2316
01:28:23,907 --> 01:28:30,380
I THINK WHEN -- KARINA, WHEN YOU

2317
01:28:30,380 --> 01:28:34,651
WERE AN ALTEREO MEMBER, THE

2318
01:28:34,651 --> 01:28:37,820
MODEL WHICH WE APPLIED TO OUR

2319
01:28:37,820 --> 01:28:39,455
PROJECT AND EVALUATED OUR

2320
01:28:39,455 --> 01:28:40,356
PROJECT ACCORDING TO THOSE

2321
01:28:40,356 --> 01:28:40,657
MODELS.

2322
01:28:40,657 --> 01:28:43,660
SO THAT WHEN WE DO GO IN FRONT

2323
01:28:43,660 --> 01:28:45,395
OF COMMUNITIES OR TRIBAL LEADERS

2324
01:28:45,395 --> 01:28:47,564
OR EVEN THEIR POLITICIANS, WE

2325
01:28:47,564 --> 01:28:49,465
CAN GET UP THERE AND SAY, WELL,

2326
01:28:49,465 --> 01:28:53,269
ACTUALLY, WE HAVE ADDRESSED

2327
01:28:53,269 --> 01:28:55,271
THINGS FROM OUR CULTURAL

2328
01:28:55,271 --> 01:28:59,842
PERSPECTIVE, AND AS A SURROGATE

2329
01:28:59,842 --> 01:29:01,177
FOR EXPANSIVE COMMUNITY

2330
01:29:01,177 --> 01:29:03,580
ENGAGEMENT, IT'S NOT A COMPLETE

2331
01:29:03,580 --> 01:29:04,714
REPLACEMENT, IT'S NOT A COMPLETE

2332
01:29:04,714 --> 01:29:07,050
SUBSTITUTE, BUT IT'S NOT A BAD

2333
01:29:07,050 --> 01:29:07,517
ONE EITHER.

2334
01:29:07,517 --> 01:29:11,254
AND IF WE CAN POINT TO THE

2335
01:29:11,254 --> 01:29:13,356
PATHWAYS TO BENEFITS FROM THE

2336
01:29:13,356 --> 01:29:15,191
RESOURCES THAT WE DEVELOP AND

2337
01:29:15,191 --> 01:29:16,960
PUT THOSE -- THE DEVELOPMENT OF

2338
01:29:16,960 --> 01:29:19,162
THE PANGENOME INTO THEIR

2339
01:29:19,162 --> 01:29:22,765
CONTEXT, I THINK WE'RE A FAIR

2340
01:29:22,765 --> 01:29:24,467
WAY DOWN THE TRACK TO ACHIEVING

2341
01:29:24,467 --> 01:29:26,169
THE OUTCOMES THAT I THINK THAT

2342
01:29:26,169 --> 01:29:27,136
OUR COMMUNITIES WOULD LIKE TO

2343
01:29:27,136 --> 01:29:28,705
SEE.

2344
01:29:28,705 --> 01:29:30,106
>> WELL, THANK YOU SO
MUCH.

2345
01:29:30,106 --> 01:29:31,741
WE ARE ALMOST OUT OF TIME.

2346
01:29:31,741 --> 01:29:35,044
THE LAST QUESTION HAS TO DO WITH

2347
01:29:35,044 --> 01:29:38,548
SOMEBODY WHO'S ASKING FROM THE

2348
01:29:38,548 --> 01:29:39,349
UNDERGRADUATE WORLD, THEY'RE

2349
01:29:39,349 --> 01:29:41,718
ASKING A LITTLE BIT ABOUT WHAT

2350
01:29:41,718 --> 01:29:44,354
ARE THE SKILLSETS THAT YOU VALUE

2351
01:29:44,354 --> 01:29:49,492
IN UNDERGRADUATES COMING OUT AND

2352
01:29:49,492 --> 01:29:50,159
WANTING INDIGENOUS

2353
01:29:50,159 --> 01:29:50,760
UNDERGRADUATES IN PARTICULAR

2354
01:29:50,760 --> 01:29:51,928
COMING INTO YOUR LABS OR INTO

2355
01:29:51,928 --> 01:29:52,795
YOUR SPACE, WHAT WOULD YOU LIKE

2356
01:29:52,795 --> 01:29:57,734
TO SEE FOR THE UP AND COMING

2357
01:29:57,734 --> 01:29:59,702
GENERATION?

2358
01:29:59,702 --> 01:30:03,339
>> SO I THINK BECAUSE I'LL
BE

2359
01:30:03,339 --> 01:30:05,642
EVALUATING APPLICATIONS SOON,

2360
01:30:05,642 --> 01:30:09,445
THE DEADLINE IS IN A COUPLE

2361
01:30:09,445 --> 01:30:15,051
DAYS, I'LL ANSWER.

2362
01:30:15,051 --> 01:30:16,586
SO I THINK WHEN I'M EVALUATING A

2363
01:30:16,586 --> 01:30:17,887
STUDENT, I'M REALLY EVALUATING

2364
01:30:17,887 --> 01:30:22,592
MORE IN TERMS OF INTEREST AND

2365
01:30:22,592 --> 01:30:22,792
DRIVE.

2366
01:30:22,792 --> 01:30:26,763
AND ALSO WHAT IT IS THEY'D LIKE

2367
01:30:26,763 --> 01:30:31,034
TO LEARN AND DO WITH RESEARCH.

2368
01:30:31,034 --> 01:30:32,902
AND SO IF A STUDENT COMES UP TO

2369
01:30:32,902 --> 01:30:34,337
ME AND STATES OH, I WANT TO DO

2370
01:30:34,337 --> 01:30:35,638
RESEARCH IN MY COMMUNITY, THAT'S

2371
01:30:35,638 --> 01:30:37,607
GREAT, BUT WHAT DOES THAT LOOK

2372
01:30:37,607 --> 01:30:38,141
LIKE?

2373
01:30:38,141 --> 01:30:39,008
BECAUSE THERE'S SO MANY

2374
01:30:39,008 --> 01:30:40,043
DIFFERENT TYPES OF RESEARCH.

2375
01:30:40,043 --> 01:30:41,678
DO YOU WANT TO -- DO YOU SEE

2376
01:30:41,678 --> 01:30:46,049
YOURSELF IN LIKE A LAB, BENCH

2377
01:30:46,049 --> 01:30:47,817
ENVIRONMENT, DO YOU SEE YOURSELF

2378
01:30:47,817 --> 01:30:48,785
WORKING COMPUTATIONALLY, DO YOU

2379
01:30:48,785 --> 01:30:51,220
SEE YOURSELF MORE IN, LIKE,

2380
01:30:51,220 --> 01:30:52,889
ETHNOGRAPHIC RESEARCH METHODS OR

2381
01:30:52,889 --> 01:30:54,190
MORE EMBEDDED TALKING WITH

2382
01:30:54,190 --> 01:30:59,228
COMMUNITY MEMBERS DIRECTLY,

2383
01:30:59,228 --> 01:31:00,129
QUALITATIVE, QUANTITATIVE

2384
01:31:00,129 --> 01:31:00,563
RESEARCH APPROACHES.

2385
01:31:00,563 --> 01:31:01,864
IT'S NOT JUST LIKE VISUALIZING

2386
01:31:01,864 --> 01:31:03,466
WHAT YOUR DAY TO DAY IN THE LIFE

2387
01:31:03,466 --> 01:31:07,136
IS, BUT ALSO IT HELPS YOU

2388
01:31:07,136 --> 01:31:08,237
UNDERSTAND WHAT TYPES OF DEGREE

2389
01:31:08,237 --> 01:31:09,105
PROGRAMS AND WHAT TYPES OF

2390
01:31:09,105 --> 01:31:10,206
TRAINING YOU NEED TO DO THE

2391
01:31:10,206 --> 01:31:11,307
TYPES OF THINGS THAT YOU'D LIKE

2392
01:31:11,307 --> 01:31:16,446
TO DO.

2393
01:31:16,446 --> 01:31:19,082
THEN AFTER THAT, IT IS, OKAY,

2394
01:31:19,082 --> 01:31:21,084
HOW DO YOU ENVISION EMBEDDING

2395
01:31:21,084 --> 01:31:24,554
YOUR UPBRINGING OR YOUR PERSONAL

2396
01:31:24,554 --> 01:31:28,291
EXPERIENCES INTO THAT REALM.

2397
01:31:28,291 --> 01:31:31,461
BECAUSE FOR ME, I THINK THE

2398
01:31:31,461 --> 01:31:33,062
STRONGEST STUDENTS ARE NOT

2399
01:31:33,062 --> 01:31:35,531
NECESSARILY WITH THE HIGHEST TB.

2400
01:31:35,531 --> 01:31:39,035
PAGPAs, IT'S MORE SEEING

2401
01:31:39,035 --> 01:31:39,836
THEMSELVES IN THE RESEARCH

2402
01:31:39,836 --> 01:31:41,437
PROCESS AND HAVING BENEFIT TO

2403
01:31:41,437 --> 01:31:44,941
THEIR COMMUNITIES.

2404
01:31:44,941 --> 01:31:45,942
SOME TYPES OF RESEARCH QUESTIONS

2405
01:31:45,942 --> 01:31:49,645
ARE GREAT, BUT THEY MAY NOT BE

2406
01:31:49,645 --> 01:31:52,081
MORE PROXIMALLY IMPACTFUL TO

2407
01:31:52,081 --> 01:31:54,050
INDIGENOUS PEOPLES, AND

2408
01:31:54,050 --> 01:31:55,251
COMMUNITIES, AND IT'S IMPORTANT

2409
01:31:55,251 --> 01:31:57,220
THAT STUDENTS REALIZE THAT UP

2410
01:31:57,220 --> 01:31:58,154
FRONT IF THAT'S IMPORTANT TO

2411
01:31:58,154 --> 01:31:59,956
THEM.

2412
01:31:59,956 --> 01:32:00,857
SO THOSE ARE THE TYPES OF

2413
01:32:00,857 --> 01:32:02,725
QUESTIONS THAT I KIND OF

2414
01:32:02,725 --> 01:32:03,393
INTERROGATE ON THE PERSONAL

2415
01:32:03,393 --> 01:32:07,330
SIDE, JUST TO SEE, LIKE, WHERE

2416
01:32:07,330 --> 01:32:08,831
MY MENTORSHIP STYLE MIGHT FIT

2417
01:32:08,831 --> 01:32:14,237
WITH THEIR NEEDS.

2418
01:32:14,237 --> 01:32:14,737
>> THANK YOU.

2419
01:32:14,737 --> 01:32:16,639
OUR TIME IS ACTUALLY UP, AND I

2420
01:32:16,639 --> 01:32:21,110
WANT TO AGAIN THANK THIS

2421
01:32:21,110 --> 01:32:23,546
INCREDIBLE PANEL FOR THAT TAKING

2422
01:32:23,546 --> 01:32:24,981
THEIR TIME AND ALL OF YOU FOR

2423
01:32:24,981 --> 01:32:25,748
SHARING YOUR WISDOM.

2424
01:32:25,748 --> 01:32:27,483
THIS WILL BE -- WE WILL HAVE

2425
01:32:27,483 --> 01:32:29,252
THIS SO THAT OTHER FOLKS WHO

2426
01:32:29,252 --> 01:32:32,655
DIDN'T JOIN US TODAY, WE HAD I

2427
01:32:32,655 --> 01:32:35,925
BELIEVE AT LEAST 50 PEOPLE

2428
01:32:35,925 --> 01:32:37,026
ONLINE TO SHARE WITH US TODAY,

2429
01:32:37,026 --> 01:32:38,561
AND I THINK WE WILL HAVE MANY

2430
01:32:38,561 --> 01:32:39,462
MORE WHO ARE GOING TO HAVE THE

2431
01:32:39,462 --> 01:32:40,096
OPPORTUNITY TO WATCH THIS.

2432
01:32:40,096 --> 01:32:41,731
SO I REALLY APPRECIATE YOUR

2433
01:32:41,731 --> 01:32:43,032
KNOWLEDGE AND ALL THE WORK THAT

2434
01:32:43,032 --> 01:32:44,167
YOU ARE DOING.

2435
01:32:44,167 --> 01:32:49,439
IT IS SO IMPORTANT, AND I LOOK

2436
01:32:49,439 --> 01:32:50,973
FORWARD TO HEAR MORE ABOUT THE

2437
01:32:50,973 --> 01:32:54,377
WORK AND WISH YOU ALL CONTINUED

2438
01:32:54,377 --> 01:32:55,445
SUCCESS, ESPECIALLY BRINGING UP

2439
01:32:55,445 --> 01:32:59,282
THAT NEXT GENERATION OF

2440
01:32:59,282 --> 01:33:00,383
INDIGENOUS GENETICISTS TO BE

2441
01:33:00,383 --> 01:33:01,284
ABLE TO LEAD THE WAY.

2442
01:33:01,284 --> 01:33:02,285
SO THANK YOU SO MUCH.

2443
01:33:02,285 --> 01:33:04,887
THANK YOU FOR THE TIME.

2444
01:33:04,887 --> 01:33:07,990
WE ARE GOING TO GO OFFLINE,

2445
01:33:07,990 --> 01:33:17,990
AND -- RIGHT NOW.