Strategies to Help Future Strategies to Help Future Generations Make a Generations Make a Positive DifferencePositive Difference

GFBR9GFBR9

Auckland 2008Auckland 2008Ngiare BrownNgiare Brown

Bullana – The Poche Centre for Indigenous Bullana – The Poche Centre for Indigenous HealthHealth

Faculty of Medicine, University of SydneyFaculty of Medicine, University of Sydney

OverviewOverview

Comments on biomedical Comments on biomedical researchresearch

Case studies/vignettesCase studies/vignettesHuman rights instrumentsHuman rights instrumentsFacilitating changeFacilitating change

Aboriginal and Torres Strait Aboriginal and Torres Strait Islander peoplesIslander peoples

Approximately 2.5% total populationApproximately 2.5% total population 500,000; 60% under 25 yrs 500,000; 60% under 25 yrs Greatest numbers urban centres eastern Greatest numbers urban centres eastern

seaboard – NSW, QLDseaboard – NSW, QLD Greatest percentages regional, rural, remote Greatest percentages regional, rural, remote Diverse – culturally; geographically; Diverse – culturally; geographically;

linguisticallylinguistically Greatest disparities morbidity/mortality Greatest disparities morbidity/mortality

vascular risk, chronic disease (CVD, renal, DM) vascular risk, chronic disease (CVD, renal, DM) infant mortalityinfant mortality

Biomedical researchBiomedical research

Unpopular - unfavourable concept of Unpopular - unfavourable concept of what research iswhat research is

Complex – poorly explainedComplex – poorly explained High risk or unacceptable risk:benefit High risk or unacceptable risk:benefit

ratioratio No guarantee of benefit to participantsNo guarantee of benefit to participants ResearcherResearcher driven agenda driven agenda Knowledge translation poorly addressedKnowledge translation poorly addressed

Biomedical researchBiomedical research

Science, Indigenous peoples, Indigenous well-being Science, Indigenous peoples, Indigenous well-being should not be mutually exclusiveshould not be mutually exclusive

‘‘Science’ non-Indigenous construct formalising Science’ non-Indigenous construct formalising knowledge appropriated from IP – e.g. the knowledge appropriated from IP – e.g. the therapeutic benefits of certain plants, traditional therapeutic benefits of certain plants, traditional healing practiceshealing practices

Science is a tool, not a masterScience is a tool, not a master Shift the research paradigm Shift the research paradigm Correct the power imbalance to create equal Correct the power imbalance to create equal

partnerships partnerships or hand the greater power to Indigenous peoples or hand the greater power to Indigenous peoples

and their communitiesand their communities

Power to say NO to researchPower to say NO to research Power to determine priorities and the Power to determine priorities and the

research agendaresearch agenda Power to own data and intellectual Power to own data and intellectual

property associated with researchproperty associated with research Power to make decisions on the Power to make decisions on the

dissemination of findingsdissemination of findings

Vignettes…Vignettes…

Town campTown camp Death in a remote communityDeath in a remote community Aboriginal Ethics SubcommitteeAboriginal Ethics Subcommittee Research hub and local capacityResearch hub and local capacity

AESCAESC Collaborative research ethics arrangement between Collaborative research ethics arrangement between

academic/research institute and department of healthacademic/research institute and department of health Jurisdictional - submission and approval for all research to Jurisdictional - submission and approval for all research to

be undertaken in the regions covered by the HREC/AESC be undertaken in the regions covered by the HREC/AESC even if institutional (e.g. university) ethics approval gainedeven if institutional (e.g. university) ethics approval gained

Senior community representative – research experience; Senior community representative – research experience; Chair Chair

Aboriginal research academicAboriginal research academic Aboriginal academicAboriginal academic Aboriginal lawyerAboriginal lawyer Aboriginal medical practitionerAboriginal medical practitioner Aboriginal researcherAboriginal researcher ‘‘Consumer’ representative – from wider Aboriginal and Consumer’ representative – from wider Aboriginal and

Torres Strait Islander communityTorres Strait Islander community Aboriginal research student – mentored by committeeAboriginal research student – mentored by committee Independent scientific reviewer – clinical researcher; Independent scientific reviewer – clinical researcher;

provides clinical expert advice on research proposal; does provides clinical expert advice on research proposal; does not contribute to decision makingnot contribute to decision making

Position for senior Aboriginal malePosition for senior Aboriginal male

Research hubResearch hub

Local initiative – provides Local initiative – provides employment; building capacity of local employment; building capacity of local people to understand, participate, lead people to understand, participate, lead researchresearch

Exploring economic viability – requests Exploring economic viability – requests for research consultancies from other for research consultancies from other communitiescommunities

Qualitative, quantitative, clinical and Qualitative, quantitative, clinical and social sciences researchsocial sciences research

HIA example HIA example

HR documents relevant to the health and HR documents relevant to the health and researchresearch

Include…Include… Universal Declaration of Human Rights (UDHR) 1948Universal Declaration of Human Rights (UDHR) 1948 International Convention on the Elimination of all forms of International Convention on the Elimination of all forms of

Racial Discrimination (ICERD) 1965Racial Discrimination (ICERD) 1965 International Covenant on Economic, Social and Cultural International Covenant on Economic, Social and Cultural

Rights (ICESCR) 1966Rights (ICESCR) 1966 Convention on the Elimination of all forms of Discrimination Convention on the Elimination of all forms of Discrimination

Against Women (CEDAW) 1979 Against Women (CEDAW) 1979 Convention on the Rights of the Child (CRC) 1989Convention on the Rights of the Child (CRC) 1989 General Comment 14, Article 12 ICESCR 2000General Comment 14, Article 12 ICESCR 2000 Declaration of Alma Ata 1978Declaration of Alma Ata 1978 Peoples’ Charter for Health, PHA, 2000Peoples’ Charter for Health, PHA, 2000 United Nations Declaration on the Rights of Indigenous United Nations Declaration on the Rights of Indigenous

Peoples (2007)Peoples (2007) International Labour Organisation Convention (No. 169) International Labour Organisation Convention (No. 169)

concerning Indigenous and Tribal Peoples in Independent concerning Indigenous and Tribal Peoples in Independent Countries (1989)Countries (1989)

HR instrumentsHR instruments Professional ethics, research and Professional ethics, research and

experimentation experimentation Declaration of Geneva – Physicians OathDeclaration of Geneva – Physicians Oath WMA International Code of Medical EthicsWMA International Code of Medical Ethics Madrid Declaration on Ethical Standards for Madrid Declaration on Ethical Standards for

Psychiatric PracticePsychiatric Practice Nuremburg CodeNuremburg Code Declaration of HelsinkiDeclaration of Helsinki Others specific to research genetic researchOthers specific to research genetic research

The Right to HealthThe Right to Health

““The enjoyment of the highest The enjoyment of the highest attainable standard of health is one attainable standard of health is one of the fundamental rights of every of the fundamental rights of every human being without distinction of human being without distinction of race, religion, political belief, race, religion, political belief, economic or social condition”economic or social condition”

Preamble, WHO Constitution 1948Preamble, WHO Constitution 1948

The Right to HealthThe Right to Health

Understood to be ‘the right to Understood to be ‘the right to a system of health protection a system of health protection which provides equality of which provides equality of opportunity for people to opportunity for people to enjoy the highest attainable enjoy the highest attainable standard of health’standard of health’

General comment 14 (2000); article 12 ICESCR General comment 14 (2000); article 12 ICESCR

WHO, Research and Indigenous WHO, Research and Indigenous PeoplesPeoples

IP and participatory health research – IP and participatory health research – WHO document reflecting experiences in WHO document reflecting experiences in developed countriesdeveloped countries

How to develop collaborative How to develop collaborative relationships – researcher responsibilities relationships – researcher responsibilities and IP expectations (and vice versa)and IP expectations (and vice versa)

Reflects specific cultural contexts and Reflects specific cultural contexts and sociopolitical issues not necessarily sociopolitical issues not necessarily covered by routine scientific and ethical covered by routine scientific and ethical processesprocesses

Proposes research agreementsProposes research agreements Formal written agreements between Formal written agreements between

IP and researchers/institutions IP and researchers/institutions although not legally bindingalthough not legally binding

Facilitates discussion, negotiation, Facilitates discussion, negotiation, clarification, responsibilities and clarification, responsibilities and expectationsexpectations

Participatory priority settingParticipatory priority setting

Other issues under RAOther issues under RA

Consent – free, prior, informedConsent – free, prior, informed 3 levels – community; organisational; individual3 levels – community; organisational; individual Individual – written or verbalIndividual – written or verbal Collective consent through community Collective consent through community

representative/s and/or umbrella organisationrepresentative/s and/or umbrella organisation Complementary and comprehensive processesComplementary and comprehensive processes Intellectual property rights – genetic resources, Intellectual property rights – genetic resources,

benefit sharing, traditional knowledge (WIPO)benefit sharing, traditional knowledge (WIPO) Partnership principlesPartnership principles Knowledge translation and distribution of benefits Knowledge translation and distribution of benefits

Potential benefits of RAPotential benefits of RA

Greater participation of IP Greater participation of IP More equitable approach to information More equitable approach to information

gathering and sharinggathering and sharing More equitable distribution of research More equitable distribution of research

benefitsbenefits Strengthens partnerships between Strengthens partnerships between

academic and research institutions and IPacademic and research institutions and IP Promotes capacity development within Promotes capacity development within

the sector the sector

Changing the culture of Changing the culture of researchresearch

Workforce – Indigenous capacity; attitudinal and Workforce – Indigenous capacity; attitudinal and behavioural changebehavioural change

Access to information – Yamey, HHR Journal Access to information – Yamey, HHR Journal exclusion from accessing biomedical literature is a exclusion from accessing biomedical literature is a rights violationrights violation

Insist onInsist on Benefit Benefit as a core determinant for as a core determinant for research in Indigenous and vulnerable populationsresearch in Indigenous and vulnerable populations

Ongoing research reform – flexibility (funding, Ongoing research reform – flexibility (funding, timelines, feedback etc); ensure accountability and timelines, feedback etc); ensure accountability and responsibility, particularly for privately funded responsibility, particularly for privately funded researchresearch

Greater legislative controls or parameters???!Greater legislative controls or parameters???!

Indigenous perspectivesIndigenous perspectives

Maintain intellectual and scientific rigourMaintain intellectual and scientific rigour Protect cultural integrity – including Protect cultural integrity – including

traditional knowledge and intellectual traditional knowledge and intellectual propertyproperty

Acknowledge Indigenous leadership and Acknowledge Indigenous leadership and contributions of community – ownership of contributions of community – ownership of issues and solutions; issues and solutions; not passive not passive recipientsrecipients

Can’t research Indigenous Peoples without Can’t research Indigenous Peoples without Indigenous Peoples Indigenous Peoples