Informed consent is the pre-requisite for all that NCIG aims to achieve.
To help explain the scientific concepts at the core of the collection, NCIG commissioned a short animation, with others to follow. This initiative was funded by a donation of $33,000 from the Canberra Medical Society.
The animation is accessible to audiences in remote locations via USB stick, CD or internet-enabled devices. We gratefully acknowledge the team at the Machado Joseph Disease Foundation, based in Groote Eylandt, Northern Territory, who allowed us to draw on their experience in communicating genetic concepts to Indigenous communities, and who shared their expertise and personnel with NCIG during planning and production.
The first of these animations has been completed, to wide acclaim. View it from our animation page.
NCIG is the recipient of $190,000 of NHMRC funding to participate in a large study called Biobank Networks, Medical Research and the Challenge of Globalisation. NCIG’s role is the study is to explore the knowledge and attitudes of Indigenous communities to issues related to the NCIG collection. These include consent, return of results, benefit sharing and ownership of both the sample and the data, among others. The funds are being used to conduct return visits to communities over three years.