O a matou ausuesue galulue faatasi ma pa'aga e kilivaina

O a matou ausuesue galulue faatasi ma pa'aga e kilivaina

O le Centre mo Population Genomics o loo galulue faayasi ma le ausuesue ma taitai o fale gaosi oloa ina ia kiliva polokalme o le OurDNA.

O le Centre for Population Genomics o se faamuamua tuufaatasi a le Garvan Institute of Medical Research ma le Murdoch Children’s Research Institute. O a'oga o taitai o le malo i suesuega faa DNA, faatasi ai ma malosiaga faufautua e lautele tele ai le DNA, faamaumauga faasaienisi, aofai o tagata soifua maloloina, ma aafiaga faafomai.

 

Oa matou ausuesue galulue faatasi

FAAGATUSA MA FESOOTAI

E ala i le Centre for Population Genomics, OurDNA e mimita ma se sui o le FAAGATUSA ma FESOOTAI. CPG e tuuina atu taitaiga faatekonolosi mo le atina'eina o faamaumauga faavae o Genomika mo letausisia o le malo, talafeagai faaleaganuu, ma le teuina ma le amiotonu, puleaina, ma le fausia o faamaumauga genomika ma le faasoaina o faamaumauga ina ia penefiti ai tagata apoliki o Ausetalia.

Google

O le Centre for Population Genomics pa'aga faatasi ai ma le Google ina ia lagolago ai ausuesue o tupuaga ma komiuniti e aapa atu a Ausetalia. CPG galue faatasi ma le Ausuesue a le Google ina ia fausia nisi o mea faigaluega matou te fa'aaogaina ina ia a'oa'oina ai faamaumauga o tupuaga. O nei mea faigaluega o le a fesoasoani ai i fle omai ma le ausuesue ina ia a'oa'oina fesuiaiga i DNA a sui o komiuniti ma fai ia sili atu alagaoa mo kulupu e le faailoaina.

E ala i le fai pa'aga, e lagolagoina e le Google nisi o OurDNA i gaioiga fai a komiuniti. OurDNA io loo galue faatasi foi ma le Google i mea faigaluega faaliliu-upu, ma tagata faigaluega i gagana ina ia iloiloina auala fou e fausia ai i le faaliliuina o mea o suesuega o tupuaga ma faia le auai i suesuega u faigofie atu mo sui o aganuu e tele i le komiuiniti.

Vai i fafo ma le faatuina o suesuega

O polokalame a le OurDNA e aofia ai se faasologa faapitoa o suesuega  faapea e vaavaai ai pe faapefea polokalame e pei o le OurDNA ona mafai ona sili atu le ausia o manaoga o komiuniti o aganuu e tele. Fai pa'aga ai ma le ausuesue faatasi ai ma le automai i bioethics, tamaoaiga o soifua maloloina, faufautua faatupuaga, suesuega faavafealoai, ma le faatuina faasaienisi, o lenei faasologa e suesueina le faamaoni, va fealoai, ma tulaga o faataitaiga o le polokalame.

O manatu o poloketi o loo suesueina vaaiga a le komiuniti ma mea na oo iai suesuega o le auai i geomika, e aofia ai le faatagana ma le mauaina o faaiuga o geomika. O le a suesue foi pe faapefea ona faia tausiga faalesoifua maloloina o geomika ia sili atu mom komiuniti i aganuu e tele.

O mea na maua mai lenei faasologa o galuega o le a faailoa ai le faaleleia i le lumanai i polokalame o le OurDNA. O le a faapea foi ona tuuina atu taiala mo isi poloketi suesue geomika e galulue faatasi ai ma komiuniti o aganuu e tele.

O loo matou fai pa'aga ma:

  • Associate Professor Danya Vears , Murdoch Children’s Research Institute (Bioethics)
  • Professor Ilias Goranitis, University of Melbourne (Health Economics)
  • Associate Professor Stephanie Best, Zoe Fehlberg, and Dr. Marlena Klaic, University of Melbourne (Implementation Science)
  • Mary-Anne Young and Dr. Amanda Willis, My Research Results, Garvan Institute of Medical Research (Genetic Counselling)
  • Professor Alison McEwen, University of Technology Sydney (Genetic Counselling) 
  • Dr. Rachel Thorpe, Australian Red Cross Lifeblood (Social Research)

Google

The Centre for Population Genomics partners with Google to support genetic research and community outreach in Australia. CPG works with Google Research to build some of the tools we use to study genetic data. These tools will help doctors and researchers to study changes in community members’ DNA and make better genetic resources for underrepresented groups.

Through this partnership, Google supports some of OurDNA’s community engagement activities. OurDNA is also working with Google translation tools, accredited translators, and linguists to evaluate innovative approaches to translation of genetic research materials and make participating in research easier for multicultural community members.

Social and implementation research

The OurDNA program includes a dedicated research stream that is looking at how programs like OurDNA can better meet the needs of multicultural communities. Partnering with researchers with expertise in bioethics, health economics, genetic counselling, social research, and implementation science,  this stream examines the ethical, social, and practical aspects of the program.

The research projects are exploring  community perspectives and experiences of genomics research participation, including consent and receiving genomics results. It will also investigate how to make genomic healthcare better for multicultural communities.  

The findings from this stream of work will inform future improvements to the OurDNA program. It will also provide guidance for other genomics research projects working with multicultural communities.

We’re partnering with:

  • Associate Professor Danya Vears , Murdoch Children’s Research Institute (Bioethics)
  • Professor Ilias Goranitis, University of Melbourne (Health Economics)
  • Associate Professor Stephanie Best, Zoe Fehlberg, and Dr. Marlena Klaic, University of Melbourne (Implementation Science)
  • Mary-Anne Young and Dr. Amanda Willis, My Research Results, Garvan Institute of Medical Research (Genetic Counselling)
  • Professor Alison McEwen, University of Technology Sydney (Genetic Counselling)
  • Dr. Rachel Thorpe, Australian Red Cross Lifeblood (Social Research)

Australian Genome Research Facility (AGRF)

OurDNA e fai pa'aga ma le Australian Genome Research Facility (AGRF) ina ia faasolosolo le faavasegaina pe ‘faitau’ faataitaiga o le DNA na tuuina atu e sui o le komiuniti. A o fai pa'aga e faasolosolo faavasega, e fa'aaoga e le AGRF tekonolosi eseese e auiliili ai ma faaola faasologa fou o faamaumauga o tupuaga ina ia lagolagoina ai suesuega faafomai ma le soifua maloloina.

Australian Red Cross Lifeblood

O pa'aga a le OurDNA faatasi ai ma le Australian Red Cross Lifeblood ina ia faatupulaia le tele o foai o le toto faapea geomika. O loo latou galulue foi i le atina'eina o auala talafeagai ina ia vala'alia ai tagata auai i le OurDNA e i ai ituaiga toto e le masani ai ina ia avea ma tagata foai le toto ina ia fasaleleia ai le maua o toto e le masanai ai mo gasegase.

Federation of Ethnic Communities Councils of Australia (FECCA) and the Australian Multicultural Health Collaborative (an initiative of FECCA)

FECCA ma le Australian Multicultural Health Collaborative o pa'aga autu, mo le tuuina atu o le mataituina o mea e tatau ai o aganuu e tele ma taiala i totonu o polokalame a le OurDNA. Tuuina atu i luma o le matou komiti faafoe, FECCA ma le Galulue faatasi e fautuaina foi i le aapa atu i komiunitio ma faataino fesootaiga i luga o le laueleele. O le Galulue faatasi ma le vala'auina faatasi e le OurDNA Multicultural Advisory Group, faapea e tuuina atu fautuaga tomai i tuutuuga i le lautele o polokalame ma faataitaiga. E fautuaina e le kulupu i ulutala pe faapefea e le OurDNA ona faia ia maua faamaumauga mo suesuega ma faapefea ona faasoa penefiti i komiuniti.

Monash University

OurDNA e galue faatasi ma le vaega a le Monash University’s Precision Medicine ina ia faagasolo ma teu tuiga o totoi a sui o le komiuniti na tuuina mai. E faagasolo e le Monash Precision Medicine tuiga o toto i ituaiga eseese o faataitaiga o le toto, e pei o le plasma, cells and buffycoat, ao faasaoinaatoa foi le toto. Fa'aopopo i ai, latou te faaesea le DNA mai sela atoa o le toto, e aofia ai tuiga o le toto na faagasolo muamua i Westmead. Tuiga o toto na tuuina atu i le OurDNA o loo teuina mo le taimi e teu ai i le Monash.

Sonic Pathology (Douglass Hanly Moir Pathology ma Melbourne Pathology)

E tele lala o falke suetoto a le Sonic i le lautele o Sydney (faatinoina faapea o Douglass Hanly Moir Pathology) ma Melbourne (faagauioi faapea o Melbourne Pathology). O sui o komiouiniti faapea mananao ina ia auai i le OurDNA e mafai ona salu ane i soo se fale suetoto i Melbourne Pathology po o nofoaga tutotonu a le Douglass Hanly Moir Pathology i soo se taimi o itula e tatala ai mai Aso Gafua i Aso Tofi.

WeGuide

OurDNA ua fai pa'aga ma WeGuide ina ia kilivaina se malupuipuia, faatuatuaina, ma faasologa o faatagana i luga o initaneti i aganuu e tele ina ia lagolagoina ai le auai i komiuniti ma le auai i suesuega. WeGuide o se vaega fesootai faamaonia masani e gasegase ma tulaga malupuipuia ma mea e oo iai e lagolagoina ai le tausi soifua ma faalapotopotoga suesue faafomai.

Westmead Institute for Medical Research

OurDNA e fai pa'aga ma Westmead Institute mo Medical Research ina ia faasolo ai ma teu tuiga o toto na tuuina mai e sui o komiuiniti. Westmead Biobank e faagasoloina le toto i ituaiga eseese, e pei o le plasma, cells and buffycoat, ao faasaoina atoa foi le toto. O tuiga o toto e faagasolo e Westmead e teu na o taimi pupuu, ao tuiga e faaliliu atu i Monarsh e teu ai mo se taimi umi.

E iai ni au fesili?

Afai e te le mauaina le tali o loo e sailia, faafesootai matou.

OurDNA o se galuega faailoga a le Centre for Population Genomics. O le Nofoaga Autu ua faatuina ia:

  • Aofia ai nu'u e le'i fa'atusalia i su'esu'ega faa-genomic;
  • Su'esu'e le aoga ma le soifua maloloina talafeagai o kenera o le tagata; ma
  • Fa'aleleia le su'esu'ega ma togafitiga o fa'ama'i o le kenera.

O le Nofoaga Autu ose fuafuaga faatasi e le o maua - ni-tupe mama mai le lua o a'oga su'esu'e ta'utaua a Ausetalia: o le Garvan Institute of Medical Research i Sini ma le Murdoch Children’s Research Institute i Melepone.

OurDNA e faatupeina e:  

  • Nofoaga autu mo le fa'alapotopotoga faavae mo Population Genomics:  Fa'alapotopotoga o Su'esu'ega Fa'afoma'i i Garvan ma le Fa'alapotopotoga o Su'esu'ega o Tamaiti i Murdoch.
  • Tagata e foa'i tupe i la matou suesuega
  • Fa'aputugatupe mo Sue'su'ega Fa'afoma'i a le Malo Ausetalia ile lumana'i (foa'i 2015969) (CIA Daniel MacArthur, 2022-2027) mai le Misiona a le Soifua Maloloina mo le Lumana'i a le Genomics ma le Soifua Malolina Fa'aleatunu'u Pulega o Su'esu'ega Fa'afoma'i (NHMRC fesoasoani i tagata sailiili 2009982 (CIA Daniel MacArthru, 2022-2026}. O mea uma o lo'o i totonu o lenei pepa fa'asalalau ole matafaioi a le tusitala ma e le atagia ai manatu o le Commonwealth of Australia po'o le NHMRC.
  • O le polokalame OurDNA e maua mai foi le lagolago mai le Google’s Digital Future Initiative. Faitau atili e uiga i le galulue fa'atasi iinei.

Ioe, ua fa'amaonia le poloketi a le OurDNA e le Human Research Ethics Committee (HREC) o le Royal Children’s Hospital. O le fa'asinomaga mo la matou fa'atagaga fa'apitoa e: HREC/91986/RCHM-2023

Afai e iai ni au fesili e uiga i le OurDNA fa'atagaga fa'apitoa, pe manao e talanoa i se tasi e tuto'atasi mai le vaega su'esu'e, e mafai ona e fa'afeso'otai le Faatonu o Su'esu'ega i le Falema'i o Tamaiti. E mafai ona e telefoni i le Fa'atonu i le (03) 9345 5044 poo imeli latou i le rch.ethics@rch.org.au

OurDNA o loo fa'atupeina nei seia oo i le faaiuga o le 2027. O le fa'amoemoe e fa'aauau la matou galuega seia o'o ina avea uma sui fa'alapotopotoga i Ausetalia mo le OurDNA database ma fa'ataitaiga ia avanoa mo le umi e mafai ai mo tagata su'esu'e.

Ina ia auai i le OurDNA, e tatau ona:

  • I luga atu i le 18 tausaga le matua
  • Ia e agava'a mo Pepa Falema'i (Medicare)
  • Mafai ona fai se fa'ataitaiga o le toto i Victoria poo New South Wales
  • Fa'ailoa e le tagata lava ia e iai se tupuaga mai se tasi o nuu e lei fa'ailoina i punaoa faa kenera. Asiasi i lenei itulau e siaki poo fea le nu'u o loo matou galulue malosi fa'atasi.
  • E le mafai e tagata ona auai pe afai oi latou po'o se tasi o latou aiga vavalalata e iai se ma'i ogaoga o le soifua maloloina, pei o le cystic fibrosis po'o le muscular dystrophy. E le aofia ai tulaga masani e pei o le ma'i inflammatory bowel, kanesa po'o le ma'i suka.

I le taimi nei, o tagata Ausetalia mai vaega o augatuaa o loo mulimuli mai o loo i lalo o le sui poo le misi atoa i mea tau punaoa o le:

  • East African (e.g., Ethiopian, Kenyan, Mauritian, Somali, South Sudanese, ma Sudanese)
  • North African ma Middle Eastern (e.g., Assyrian, Chaldean, Egyptian, Iranian, Iraqi, Jordanian, Lebanese, Palestinian, Syrian, ma Turkish)
  • Oceanian (e.g., Fijian, Papua New Guinean, Samoan, ma Tongan)
  • South-East Asian (e.g., Cambodian, Filipino, Indonesian, Malay, Thai, ma Vietnamese)

Ua ta'u mai foi e foma'i Ausetalia ia i matou e faigata ona maua fa'amatalaga e uiga i nei auga tuaa i vaega i punaoa ma fa'amaumauga latou te fa'aaogaina e su'esu'e ai tulaga fa'a kenera ma le soifua maloloina.

O lo'o galulue le OurDNA e fa'afeso'otai ma nu'u e le o fa'aalia i punaoa fa'avae. Asiasi i lenei itulau e siaki po'o fea le nu'u o loo matou galulue malosi fa'atasi.

E ui ina matou le galulue sa'o i totonu o nuu Indigenous, ae o matou o se sui malosi o ALIGN ma CONNECT consortia, taumafaiga a le atunuu o loo taitaia e le atunuu o loo galulue e faamalosia tagata Apoliki ma Torres Strait Islander i vailaau ma su'esu'ega.

Matou te tu'uina atu fautuaga fa'apitoa mo le atina'eina o fa'amaumauga fa'apitoa mo  fa'alapotopotoga talafeagai fa'ale-aganu'u, teuina lelei fa'aleaganu'u, pulega, ma le fefa'asoasoa'i o fa'amatalaga genomic e manuia ai tagata Indigenous Australians.

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