Strategies to Help Future Generations Make a Positive Difference

1. Strategies to Help Future Generations Make a Positive Difference GFBR9 Auckland 2008 Ngiare Brown Bullana – The Poche Centre for Indigenous Health Faculty of Medicine, University of Sydney

2. Overview • Comments on biomedical research • Case studies/vignettes • Human rights instruments • Facilitating change

3. Aboriginal and Torres Strait Islander peoples • Approximately 2.5% total population • 500,000; 60% under 25 yrs • Greatest numbers urban centres eastern seaboard – NSW, QLD • Greatest percentages regional, rural, remote • Diverse – culturally; geographically; linguistically • Greatest disparities morbidity/mortality vascular risk, chronic disease (CVD, renal, DM) infant mortality

4. Biomedical research • Unpopular - unfavourable concept of what research is • Complex – poorly explained • High risk or unacceptable risk:benefit ratio • No guarantee of benefit to participants • Researcher driven agenda • Knowledge translation poorly addressed

5. Biomedical research • Science, Indigenous peoples, Indigenous well-being should not be mutually exclusive • ‘Science’ non-Indigenous construct formalising knowledge appropriated from IP – e.g. the therapeutic benefits of certain plants, traditional healing practices • Science is a tool, not a master • Shift the research paradigm • Correct the power imbalance to create equal partnerships • or hand the greater power to Indigenous peoples and their communities

6. Power to say NO to research • Power to determine priorities and the research agenda • Power to own data and intellectual property associated with research • Power to make decisions on the dissemination of findings

7. Vignettes… • Town camp • Death in a remote community • Aboriginal Ethics Subcommittee • Research hub and local capacity

8. AESC • Collaborative research ethics arrangement between academic/research institute and department of health • Jurisdictional - submission and approval for all research to be undertaken in the regions covered by the HREC/AESC even if institutional (e.g. university) ethics approval gained • Senior community representative – research experience; Chair • Aboriginal research academic • Aboriginal academic • Aboriginal lawyer • Aboriginal medical practitioner • Aboriginal researcher • ‘Consumer’ representative – from wider Aboriginal and Torres Strait Islander community • Aboriginal research student – mentored by committee • Independent scientific reviewer – clinical researcher; provides clinical expert advice on research proposal; does not contribute to decision making • Position for senior Aboriginal male

9. Research hub • Local initiative – provides employment; building capacity of local people to understand, participate, lead research • Exploring economic viability – requests for research consultancies from other communities • Qualitative, quantitative, clinical and social sciences research • HIA example

10. HR documents relevant to the health and research Include… • Universal Declaration of Human Rights (UDHR) 1948 • International Convention on the Elimination of all forms of Racial Discrimination (ICERD) 1965 • International Covenant on Economic, Social and Cultural Rights (ICESCR) 1966 • Convention on the Elimination of all forms of Discrimination Against Women (CEDAW) 1979 • Convention on the Rights of the Child (CRC) 1989 • General Comment 14, Article 12 ICESCR 2000 • Declaration of Alma Ata 1978 • Peoples’ Charter for Health, PHA, 2000 • United Nations Declaration on the Rights of Indigenous Peoples (2007) • International Labour Organisation Convention (No. 169) concerning Indigenous and Tribal Peoples in Independent Countries (1989)

11. HR instruments • Professional ethics, research and experimentation • Declaration of Geneva – Physicians Oath • WMA International Code of Medical Ethics • Madrid Declaration on Ethical Standards for Psychiatric Practice • Nuremburg Code • Declaration of Helsinki • Others specific to research genetic research

12. The Right to Health “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” Preamble, WHO Constitution 1948

13. The Right to Health Understood to be ‘the right to a system of health protection which provides equality of opportunity for people to enjoy the highest attainable standard of health’ General comment 14 (2000); article 12 ICESCR

14. WHO, Research and Indigenous Peoples • IP and participatory health research – WHO document reflecting experiences in developed countries • How to develop collaborative relationships – researcher responsibilities and IP expectations (and vice versa) • Reflects specific cultural contexts and sociopolitical issues not necessarily covered by routine scientific and ethical processes

15. Proposes research agreements • Formal written agreements between IP and researchers/institutions although not legally binding • Facilitates discussion, negotiation, clarification, responsibilities and expectations • Participatory priority setting

16. Other issues under RA • Consent – free, prior, informed • 3 levels – community; organisational; individual • Individual – written or verbal • Collective consent through community representative/s and/or umbrella organisation • Complementary and comprehensive processes • Intellectual property rights – genetic resources, benefit sharing, traditional knowledge (WIPO) • Partnership principles • Knowledge translation and distribution of benefits

17. Potential benefits of RA • Greater participation of IP • More equitable approach to information gathering and sharing • More equitable distribution of research benefits • Strengthens partnerships between academic and research institutions and IP • Promotes capacity development within the sector

18. Changing the culture of research • Workforce – Indigenous capacity; attitudinal and behavioural change • Access to information – Yamey, HHR Journal exclusion from accessing biomedical literature is a rights violation • Insist on Benefit as a core determinant for research in Indigenous and vulnerable populations • Ongoing research reform – flexibility (funding, timelines, feedback etc); ensure accountability and responsibility, particularly for privately funded research • Greater legislative controls or parameters???!

19. Indigenous perspectives • Maintain intellectual and scientific rigour • Protect cultural integrity – including traditional knowledge and intellectual property • Acknowledge Indigenous leadership and contributions of community – ownership of issues and solutions; not passive recipients • Can’t research Indigenous Peoples without Indigenous Peoples