Until recently, there had been very little genetic research involving Aboriginal Australians as a direct result of their previous experience with dispossession and marginalization under colonial rule, leading to widespread distrust of Western institutions. Based on this background, it was clear that genetic research in Aboriginal Australia needed to be based on an ethical model that emphasises active community engagement and the incorporation of Aboriginal values and interpretations of genetic information. Accordingly, the AHP has developed a consultation model that is informed by extensive Aboriginal community and repatriation work performed by team members from the SAM Archives and Aboriginal Australian Family History Unit (Fran Zilio, Ali Abdullah Highfold) since the late 1990’s, along with knowledge gained from research performed with Aboriginal Australians during the Genographic Project (Alan Cooper, Wolfgang Haak), including refinements from ethicists (Emma Kowal) and senior Aboriginal community members (Isabel O’Loughlin, Amy O’Donoghue, Auntie Leslie Williams, Uncle Lewis O’Brien). The combined experiences of the AHP team led us to develop a consultation model that acknowledges the primacy of the hair donors and their families, and places the consent in the hands of the original donors of the samples or, should they be deceased, their immediate living descendants.
A great resource about a terrific project (including a fantastic video) about establishing connections, genuine consent and providing a contrast to historical misdeeds. Very useful for anyone planning or conducting a research ethics review of research with, but not on, First People. We have included links to 11 related items.
Contact with donors and family members is typically made via phone calls, though increasingly Aboriginal Consultants may travel to a community for one to two week visits. Often, these visits coincide with local meetings or reunions, which the Consultants have been invited to in order to talk about the project to the general community. This provides an opportunity to meet with potential participants and other community members in person, which is important for building rapport and trust, and has been instrumental determining the current location of hair donors or their families. Such peer-to-peer contact also allow Aboriginal Consultants to develop a greater understanding of any issues surrounding the hair samples and project more broadly, whereby they are in a position to discuss these matters in person.