Description
In this presentation I drew on preliminary analyses from an ESRC funded-project which crosses disciplinary borders (law, bioethics, sociology, family psychology and medicine) to explore the rapidly-growing market in direct-to-consumer genetic testing (DTCGT). For around £100, DTCGT companies, such as 23andme and AncestryDNA, offer consumers knowledge about themselves and their relationships, ‘revealed’ through their DNA. ‘Ethnicity estimates,’ health-related information and connections with genetically related others are available at the click of a mouse (terms and conditions apply).Our broader project examines the interaction between people’s everyday family relationships and ‘official’ statutory and regulatory frameworks, both for managing donor conception and for controlling the exchange of identifying information between donors and donor conceived people. Our research engages with law, bioethics, human rights and technology, across time and space, examining the social implications of the legally grey spaces that global digital technologies have exposed. This paper outlines the regulatory context within which DTCGT operates, focusing on selected jurisdictions that have elected to remove donor anonymity (England and Wales, Sweden, Victoria and the Netherlands). We analyse how conceptions of privacy and informed consent are deployed in DTCGT providers’ terms of service. This doctrinal analysis is informed by empirical data from in-depth interviews currently being conducted with UK-based donors, donor conceived people and parents through donor conception which offer insights into the relevance of these concepts and terms of service to the lived experience of those negotiating complex legal boundaries between laws governing donor conception, use of genetic information and data protection
| Period | 7 Apr 2022 |
|---|---|
| Event title | Socio-legal Studies Association Annual Conference 2022 |
| Event type | Conference |
| Location | York, United KingdomShow on map |
Keywords
- direct-to-consumer genetic testing
- assisted reproduction
- donor conception
- Bioethics
- privacy
- data protection