‘Once discoveries are made, we can’t undo them’: Exploring legal issues in direct-to-consumer genetic testing for family tracing after adoption or out-of-home-care
Megan Prictor1, Olivia Kowalishin1, University Of Melbourne Carlton 1University Of Melbourne, Carlton, VIC, Australia
Abstract
People who were adopted or experienced out-of-home care (OoHC) increasingly use direct-to-consumer (DTC) DNA testing and public DNA (‘genetic genealogy’) databases to find their birth family. This practice can overcome some difficulties of archival research for family tracing, and find otherwise inaccessible family connections. However, adoptees/care leavers and the organisations supporting them face challenges in using this strategy, including complex and confusing terms of use. Meanwhile, others who have undertaken recreational DTC DNA testing may receive unanticipated, and sometimes unwelcome, contact by unknown genetic relatives using these services.
We present here the findings of a legal analysis embedded in a research project that aims to understand the prevalence and impacts of using DTC DNA services and public DNA databases for tracing family members separated through adoption and OoHC in Victoria, Australia. We identified 17 DTC DNA companies and genetic genealogy web platforms providing kinship- and ancestry-relevant services in Australia. Their user terms and conditions and privacy policies were analysed in relation to key issues identified through relevant literature and stakeholder input.
Preliminary findings indicate that legal agreements between consumers and DTC DNA companies or data platforms vary significantly in their coverage and complexity. Few address the ownership of DNA samples or data. Potential data use by third parties is commonly stipulated. Explicit reference to family tracing by people who experienced adoption/OoHC is rare. Our results will inform the design of resources to empower consumers and supporting organisations in the use of DTC DNA testing for family tracing.
Biography
Dr. Megan Prictor is a senior lecture at Melbourne Law School and Co-Director of the Health, Law and Emerging Technologies (HeLEX) research team. She also works with the Centre for Digital Transformation of Health. Her work focuses on clinical and consumer health technologies, including innovative informed consent tools and clinical decision support software.