In 2004, drug user representatives lobbied against the now stalled $17.5m Australian government Retractable Needle and Syringe Technology Initiative due to concerns about inadequate consultation and potential health risks to participants.1 Some drug user organisations have also recently withdrawn support for the Australian Illicit Drug Reporting System (conducted annually since 1997), fearing findings that inform drug market disruption by law enforcement in some jurisdictions might increase harms to participants.
Drug user organisations aim to support research that maximises benefits and minimises harms for illicit drug users and the wider community. However, where inadequate consultation in research potentiates risk to participants, the withdrawal of support may be the only option available for voicing concerns. These and similar international examples2 evidence the need to enhance community consultation and partnership in public health research involving illicit drug users.
A number of Australian ethics documents merit international attention because of their approach to this issue. These are the Consumers' Health Forum statement on community participation in health research,3 the National Health and Medical Research Council guidelines for ethical conduct in indigenous health research,4 and the Australian Injecting and Illicit Drug Users League (AIVL) statement on illicit drug research ethics.5
The communitarian approach exemplified in these documents—that is, recognition of participant defined ethics, values, and interests—provides a useful tool for enhancing participatory processes in health research. This defines a positive territory of authority for communities in relation to research involvement, and encourages us to consider values and ethics alongside technical issues—for example, research design, methods, analysis—when planning for community consultation.
References
- 1.Australian Injecting and Illicit Drug Users League Drug users record a win on retractable syringes. AIVL Web Forum 9 Mar 2005. www.aivl.org.au/forum/forum_posts.asp?TID = 170&KW = retractable+syringes (accessed 30 May 2005)
- 2.Jintarkanon S, Nakapiew S, Tienudom N.et al Unethical clinical trials in Thailand: a community response. Lancet 20053651617–1618. [DOI] [PubMed] [Google Scholar]
- 3.Consumers' Health Forum (CHF) and National Health and Medical Research Council (NHMRC) Statement on consumer and community participation in health and medical research. Canberra: NHMRC, 2001. http://www.7.health.gov.au/nhmrc/publications/_files/r22.pdf (accessed 18 Jul 2005)
- 4.National Health and Medical Research Council Values and ethics—guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: Commonwealth of Australia, 2003. http://www.7.health.gov.au/nhmrc/publications/_files/e52.pdf (accessed 18 Jul 2005)
- 5.Australian Injecting and Illicit Drug Users League A national statement on ethical issues for research involving injecting/illicit drug users. Canberra: AIVL, 2003. www.aivl.org.au/files/EthiicalIssuesforResearchInvolvingUsers.pdf (accessed 6 May 2005)