Driven by the imperative that this nation should leave no one behind in the era of precision medicine, and working from a framework of respectfulness and participant-centred Indigenous decision-making, NCIG is setting new standards for engagement and consent in genomic research.
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. 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.
As a partner in the recent NHMRC-funded study Biobank Networks, Medical Research and the Challenge of Globalisation, NCIG explored 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 secret formula for successful community engagement is to acknowledge that there can never be a formula. Every individual and every community is given the information and the time they need to make their decisions.
Today, we’ve got a say, we’re given a choice…Today, I feel very proud that our people are given a choice. Because back in the day they didn’t have any choice at all, any say in anything…that’s why consent is so important.