Consent And Expeditions

Consent and expeditions 

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.

To implement this model, we have enlisted a consultancy team comprising Aboriginal community members with a history of living and working with Indigenous communities (current team: Isabel O’Loughlin, Amy O’Donoghue, Lesley Williams), who provide the first point of contact for the hair donor or their descendants. The AHP consultation process sees Aboriginal Consultants use the BAR genealogical data and other public sources (e.g. Electoral Rolls, Facebook, White Pages, Aboriginal Community Councils / Organisations) to trace the original donors who are still living or descendants for informed consent. Importantly, each sample is provenanced and the genealogical data contains personal information, providing a starting point for tracing the donors or their descendants. In cases where the donor is no longer alive, the oldest living direct descendant is consulted instead. This is done on a case-by-case basis for each individual hair sample, with the participants’ details (name, birthplace, location, etc.) only being accessed by the Aboriginal Consultants (i.e. the rest of the AHP research team do not have access to the personal details). Feedback from participants in the AHP have indicated their appreciation that contact was made with individuals directly.

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.

In addition to contacting individual families, we recognise the importance of notifying the broader community about the project. As mentioned above, Consultants often attend meetings open to the general public, and we also host additional ‘Contact’ meetings in each community that are open to all community members (see next section). We also ensure that any necessary approvals are obtained from regional governance structures (e.g. letters of approval to conduct research, permits to allow site visits) during the initial stages of consultation. To date, this has only been necessary for the APY Lands communities, where we were granted permits to travel to the APY Lands administered regions and conduct research with resident families.


Contact Meetings

Following extensive efforts to contact families and build rapport, both the Aboriginal outreach team and members of the research team (e.g. Alan Cooper, Ray Tobler, Wolfgang Haak, Joao Teixeira) travel to the communities to hold widely advertised ‘Contact’ meetings. People are invited verbally and in writing and are encouraged to invite extended family and other community members. During the meeting, the objectives of the project, how the research is performed, and benefits and caveats of participation in the project are explained by a geneticist and an Aboriginal consultant, with additional time for questions.

Following the presentation, and a break for lunch, meetings are held with individual family and AHP team members and the hair donors or their descendants, where additional verbal and written information about the nature, purpose, and possible risks and benefits of the project is provided. During the individual meetings with families, information packs are distributed which contain consent forms, written information on the project, complaint and sample withdrawal forms, along with BAR metadata pertaining to the hair sample donor and additional application forms for access to this metadata. Importantly, each participant is given time to evaluate the information and to ask questions prior to formally consenting to participate in the study. Further, consent forms can be mailed back after the meeting, providing participants with time to think things through and discuss matters with other family members and friends.


Analysis Process

Once formal consent has been provided from family members, application for the analysis of the relevant hair samples is made to the South Australian Museum Research and Collections Committee. Notably, prior consent for analyses had been provided by both the SAM Board and Aboriginal Advisory Committee, whereby the Research and Collections Committee application acts as a notification of the samples to be used, rather than a request for analysis. The hair samples are then collected from the SAM Secret Sacred Room, a storage place for Aboriginal Australian artefacts and biospecimens. The hair samples are kept in small paper envelopes, from which approximately 1/3 of the sample is removed, ensuring that the majority of each consented specimen remains in the SAM collection. The hair samples are then taken directly to the Australian Centre for Ancient DNA specialist ancient DNA laboratories, where they are processed, and DNA libraries produced for subsequent sequencing and analysis.


Reporting of results

In addition to placing Aboriginal families at the centre of the consultation and consent process, members of the AHP have been keenly aware of the need to build and maintain long-term relationships with the participants of the project and the broader community. To this end, a key facet of our program is the return of genetic results to individual families via ‘Return of Results’ visits that are organised for each community, where the genetic results are reported by AHP research team members in detail (Attachment 12). Following the presentation, the Return of Results packs, which contain a certificate and explanation with the DNA results (Attachments 13 & 14), are distributed to the participants.

The Return of Results visits provide an essential conduit for acquiring a local Aboriginal perspective and interpretation of the genetic patterns, and permit families and communities to be contribute to the results before publication. To properly incorporate Aboriginal Australian knowledge into the emerging portrait of their genetic history, an oral historian (Dr Karen George) accompanies the AHP team on all return visits to record the views of the participants and their families. Notably, Karen is the granddaughter of Norman Tindale – the lead Anthropologist on the expeditions that collected the hair samples and other data. She has an intimate knowledge of the rich history and cultural significance of the SAM collection. If desired by participants, Dr George conducts brief interviews with project participants and their family members where they are able to freely discuss matters of local heritage and their interpretation of the genetic results. The resulting recordings help to contextualise the genetic information, providing crucial information on inter-relationships between Aboriginal groups, trade routes across Australia, as well as genealogical information essential in the creation of the genetic map. Participants also freely offer their own thoughts on the meaning of the genetic results for their understanding of their heritage, providing a valuable document of the personal impact of genetic research on Aboriginal Australians, which will help guide the future of such studies. Indeed, for these reasons the AHP is being held up as a model for genetic research with North American / Canadian Indigenous peoples.


Return visits

The return visits provide the main conduit for reporting the genetic results to project participants, along with their families and broader communities, and also allow these results to be assessed and interpreted by Aboriginal people prior to appearing in any publication (academic or general media) or exhibition. Crucially, any information pertaining to the hair samples that appears in future publications or exhibitions will be anonymised summaries that reflect the broader population history of Aboriginal Australia. No personal information pertaining to the hair sample donor or his/her descendants will be disclosed to the general public, unless this has been specifically requested by, or explicit consent for this purpose has previously been obtained from, the consenting parties (i.e. either the hair sample donor or the donor’s descendants).

As mentioned above, an oral historian accompanies other members of the AHP team on all return visits to record local Aboriginal perspectives so that these can be accurately incorporated into future publications and exhibitions. The resulting oral history records are deposited in the South Australian Museum Archives and can be made available in accordance with South Australian Museum Access to Personal Information and Copyright Policy and Procedures.