Legal Mechanisms to Support Indigenous Data Sovereignty in Genomics
Rebekah McWhirter1, Deakin University Geelong 1Deakin University, Geelong, VIC, Australia
Abstract
Indigenous Data Sovereignty relates to the right of Indigenous peoples to govern the collection, use, storage and sharing of data about themselves, so that governance decisions reflect Indigenous interests, values and priorities, and data are used to benefit Indigenous people and communities. In the context of human genomics, Indigenous data sovereignty represents a way to avoid perpetuating many of the harms caused to Indigenous peoples by past research practices while facilitating the inclusion of Indigenous people in the health benefits of genomics. However, ensuring that the research and clinical communities implement Indigenous data sovereignty will likely require more than voluntary measures, and identifying legal mechanisms to give effect to Indigenous data sovereignty is a priority for Indigenous genomics in Australia.
This presentation will identify examples of the practical implications of Indigenous data sovereignty for those seeking to collect and use Indigenous genomic data, with a focus on governance of secondary uses, benefit sharing and communication of research findings. It then examines a range of potential legal mechanisms to give effect to Indigenous data sovereignty, assessing the strengths and weaknesses of approaches from intellectual property law, equity, contract and statute. The conclusions provide guidance for those involved in genomic data governance, as well as those involved in the collection and use of Indigenous data more widely.
Biography
Bek is a senior lecturer in health law and ethics in the School of Medicine at Deakin University. Her research focuses on ethical, legal and social issues in genomics, especially in relation to Aboriginal and Torres Strait Islander health.