A new Discussion Paper has emerged out of the second Lowitja Institute National Roundtable on Genetic Research in Aboriginal and Torres Strait Islander Communities, adding important context to the debate within Australia’s research community over the rising tide of genetic research and how it impacts on First Australians.
Very little genetic research has occurred thus far within Australia’s Aboriginal and Torres Strait Islander communities, partly because of negative experiences in past decades such as the Human Genome Diversity Project of the 1990s. In response to this the Lowitja Institute has made a concerted effort to provide a safe space for a conversation around genetic research to occur.
Roundtable convenor Dr Emma Kowal from the University of Melbourne told participants that while other countries such as Canada and New Zealand have had a number of national discussions about genetic research, this is only just beginning to happen in Australia.
‘Today, as genetics is used more and more in mainstream research and clinical practice, it is more important than ever to work through the ethical and cultural issues that genetics raises for Aboriginal and Torres Strait Islander people’, she said. ‘We need to find ways to conduct genetic research in a culturally appropriate way.’
The second Roundtable took place on 27 July 2011 as a follow-up to the first Roundtable convened in 2010 (see story in WP August 2011, p.11) and was co-facilitated by Professor Ian Anderson and Associate Professor Ted Wilkes. The discussion was wide-ranging, covering issues of community consent, storage of biological samples over the long term (including biobanks), cultural perspectives on blood samples, and the possible health benefits that whole genome sequencing may eventually hold for Indigenous communities.
The Discussion Paper, Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, is co-authored by Dr Kowal and Professor Anderson. It summarises the presentations by experts including Dr Kowal, Ms Libby Massey (Machado Joseph Disease Foundation), Ms Heather D’Antoine (Menzies School of Health Research), Professor Simon Foote (Menzies Research Institute Tasmania), Associate Professor John Condon (MSHR) and Professor Jenefer Blackwell (Telethon Institute of Child Health Research). It also provides an overview of the various group discussions around key topics.
In his preface, Professor Anderson highlights new developments since the second Roundtable including the September 2011 publication of the first genome sequenced from an Aboriginal or Torres Strait Islander person (in the journal Science), and funding awarded by the National Health and Medical Research Council to two genetic research projects directly relating to Aboriginal and Torres Strait Islander health.
‘All these developments are further evidence that issues relating to the use of genetics in our communities are not going away,’ Professor Anderson says. ‘Rather, as time goes on, more and more Aboriginal and Torres Strait Islander people and communities will be affected by genetic research and have to make informed decisions about their level of participation in such research.’
- Project: Expanding our tools to Close the Gap: Towards Indigenous genomic health research
- E. Kowal & I. Anderson 2012, Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, The Lowitja Institute, Melbourne
- E. Kowal, L. Rouhani & I. Anderson 2011, Genetic Research in Aboriginal and Torres Strait Islander Communities: Beginning the conversation, The Lowitja Institute, Melbourne
- Discussion paper tackles thorny issue of genetic research, Wangka Pulka, August 2011
- The Lowitja Institute provides ‘safe space’ for genetic research roundtable, Wangka Pulka, December 2010