Direct-to-consumer genetic testing and donor-conception: support and governance in emerging digital systems

The growth in the use of direct-to-consumer-genetic testing (DTCGT) is having a major impact on sperm, egg and embryo donor conception (hereafter donor conception). Specifically, it creates difficulties in maintaining the anonymity of donors. DTCGT services include family history sites, e.g.

Ancestry.com, and medical testing sites, e.g.23andme. Despite the different motivations people have for using these services, it is now easier to search and find donor relatives, with donor-conceived people, recipients of donor gametes and embryos, and donors all using these services to make hitherto unlikely connections. Some individuals have found large numbers of donor-siblings, while donors have been traced by their adult donor offspring.

DTCGT can also reveal unexpected origins with the numbers of people finding out they are donor-conceived through DTCGT rapidly increasing. For example, one woman discovered she was donor conceived after using 23andme to assess her risk of breast cancer, an eventuality she had never anticipated when she decided to take that test. These discoveries often come at a cost, disrupting family life and relationships and exposing family secrets. This can lead to reassessments of family history and individual identity.

This project aims to examine the experiences and the governance implications of the use of DTCGT by those involved in donor conception. The focus is on the UK context but the project will have implications for practice in other countries.

This study is important because the use of DTCGT is growing rapidly without the corresponding development of good practice guidelines and governance structures. With the exponential rise in the use of donor conception and DTCGT, predicted to grow to over 100 million people worldwide taking tests by 2021, the ability to uncover donor relations will affect an increasing number of people.

The first cohort of people born under non-anonymity will come of age in 2023 in the UK and be able to access identifying information about their donor through the HFEA Register. In light of all these factors, there is a pressing need for research on how people experience searching for and accessing information about their donor-conceived relations and what, if any, regulatory reforms are needed.

This is an inter-disciplinary project, drawing on sociology, socio-legal studies, family psychology and bioethics, using a range of theoretical resources from these disciplines. We will employ a variety of methods to explore the multi-faceted nature of the growing use of DTCGT: law; policy analysis; expert interviews; qualitative interviews with donor-conceived adults, donor and parents; interactive workshops; and ethical and socio-legal analysis.

This project will make a substantial contribution by producing the evidence-base that current provision, policy and regulation lacks. The findings will also be relevant to wider uses of DTCGT and the use of online health services more generally. The project will generate impact in three key areas:

1. Produce information and support materials for users of DTCGT: donor-conceived people, donors and parents; and those thinking of using DTCGT. 2. Provide practical guidance and support materials for professionals (clinics, counsellors) and DTCGT companies. 3. Make governance recommendations for policy makers and regulators both nationally and internationally.