Margaret Scrimgeour

Indigenous health research ethics in Australia: applying guidelines as the basis for negotiating research agreements

AbstractThe introduction of the National Health and Medical Research Council guidelines for the ethical conduct of Indigenous health research: Values and Ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (NHMRC, 2003), has prompted renewed debate about the ethical assessment of Indigenous health research in Australia. Concern has been expressed that these guidelines provide inadequate protection of Indigenous interests and that their introduction will result in a rolling back of important Indigenous research reform gains of the past three decades. Another view is that the participatory focus of the Guidelines will help ensure that key Indigenous values are positioned as central to the development of research involving Indigenous interests. In this article we provide an overview of recent commentary on the Guidelines, and canvass practical proposals for their implementation into practice. In particular, we present a case for applying the Values and Ethics Guidelines as a foundation for establishing negotiated research agreements between Indigenous peoples and professional researchers at the local community level. The intention of this proposal is to give voice to the concerns and perspectives of Indigenous peoples through research, and to provide a framework for monitoring research after ethics approval has been granted.

Pregnancy, Birthing and Health for Indigenous Families

This chapter covers the topic of health and birthing. The chapter focuses on the perspectives of the LSIC Parent 1s about the birth of their child and their health wellbeing. The analysis explores the dimensions of a positive and healthy birthing experience for Aboriginal and Torres Strait Islander mothers and how this experience helps to grow strong children/strong families/strong communities. The chapter also explores how Aboriginal and Torres Strait Islander women and their children negotiate post-birth activities such as breast feeding and diet. We then develop our findings to consider the results whether these analyses might better inform policy within the child health and maternity sectors.

LSIC: Procedural Ethics Through an Indigenous Ethical Lens

This chapter introduces the ethical dimensions, formal and informal, related to the Longitudinal Study of Indigenous Children (LSIC). The formal guidelines are those detailed by the National Health and Medical Research Council and those from the Australian Institute of Aboriginal and Torres Strait Islander Studies Research Ethics Guidelines. The chapter discusses the particular ethical approach, issues, problems confronted and resolutions deployed in the design and implementation of the LSIC study, the project’s initial ethics procedures and the conundrums faced in bringing the study to ethical clearance. These include the multi-site, multi-state location of the research, the need to wait for researcher and participant relationships to develop before surveying, the training and maintaining of the Indigenous staff to work at the research field sites, and the specific issues around maintaining confidentiality of data gathered in discrete locations.