Theme: Social Science & Policy Research Year: 2016
ETHICAL RESEARCH AND ENGAGEMENT WITH PEOPLE WHO USE DRUGS: FRAMEWORKS AND IMPLEMENTATION
Harrod ME, Albers E, Madden A
NSW Users and AIDS Association
Background: Guidelines to ethical conduct of research typically are person-focussed and view participants as sole actors with minimal active collaboration in the research process. Alternative, community-generated frameworks examine research ethics from the perspective of the community as the central reference point in the research process with community control of the research process the best means of preventing harm to marginalised and vulnerable individuals.
Methods: This paper examines the principles and implementation of research ethics frameworks in Drug User Organisations (DUOs) and Aboriginal Community Controlled Health as expressed in community research ethics guidelines. Concrete measures of successful implementation including establishment of community-based ethics committees, endorsed national guidelines and measures of community engagement in research (e.g. identified researchers, first author publications and resourcing by funding bodies to support community driven research).
Results: To date, the AIVL National Statement on Ethical Issues for Research Involving Injecting/Illicit Drug Users has gained little traction and community-based research in DUOs is often carried out with participation in the planning and implementation stages of research but without meaningful research capacity development. In contrast, capacity development and community engagement have become cornerstones of working with Aboriginal Communities and are a necessary to receiving funding.
Conclusion: Aboriginal health has a powerful implementation model for research ethics with engagement that includes community activism, community controlled ethics committees and the development of research leaders. Drug user organisations in Australia and worldwide must adopt a consistent approach and have a clear framework for engagement with researchers as well as the practical support of funding bodies to effect meaningful change.
Disclosure of Interest Statement: Annie Madden is a Community Research Liaison at the Centre for Social Research in Health and is a principal of an independent consultancy, Two Square Pegs.
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