Engagement & consent

Engagement and consent: a new "gold standard"

It is highly likely that within my lifetime, the technology will progress far beyond what we can imagine and there may be real potential health benefits for the community encoded in those genomes.

Dr Misty Jenkins, Governance Board member

Modern research ethics set a standard in which NCIG must seek free, prior and informed consent to hold each sample in its collection, and to use samples for research. It was not thought possible, at least not in the initial phase, to contact every community from which samples were collected, much less find each individual donor (or a family member).  Accordingly, a pilot project evolved in which three communities agreed to hear about NCIG and give feedback about how we might seek consent.  Mick Gooda, Board Chair, and Simon Easteal, NCIG Director, accompanied variously by others from the Board, visited three communities in 2014.

Mick and Simon were honoured by the welcome they received at these communities, and the interest shown in NCIG.  Their message to the communities was simple:

This collection offers some pretty promising opportunities for new knowledge in Indigenous health and history; we won’t do a thing with the samples without your consent; tell us how you would like us to approach you.

 

Mick Gooda, reporting to the Board on the positive response received from the first visits, said, “we are establishing a new ‘gold standard’ for consultation”.

Emma Kowal, Deputy Director, encouraged the Board to embed a model of practice called “dynamic consent”. This model acknowledges that consent is not a single event, but an on-going process. NCIG will seek “initial” consent to include samples held at the ANU into the NCIG Collection. It will also pursue processes of ongoing consent, which allow a participant to change his/her consent at any time using a secure electronic interface.

In 2015 Azure Hermes was appointed as Community Engagement Coordinator, and this has enabled a substantial expansion of activity.  Azure has visited many communities in the Northern Territory and Kimberley area of Western Australia where the collections were made.  In 2016 we opened contact with Yarrabah community in northern Queensland and Titjikala community in Central Australia (NT).  To our surprise, quite a number of the original donors, or their families have been found. Our welcome has been warm.  We continue to build supportive relationships across the country with Indigenous organisations, communities and individuals and look forward to the future as we develop this important national resource.

Updated:  25 September 2017/Responsible Officer:  Director, NCIG/Page Contact:  Web Admin, NCIG