Transcript Strategies to Help Future Generations Make a Positive

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
Overview
 Comments
on biomedical research
 Case studies/vignettes
 Human rights instruments
 Facilitating change
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
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

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
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

Vignettes…
 Town
camp
 Death in a remote community
 Aboriginal Ethics Subcommittee
 Research hub and local capacity
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
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

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)
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
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
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
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

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

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

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

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???!
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
