Direct-to-consumer DNA testing: the perspectives and experiences of donor conceived young adults in the UK

Abstract

What meanings do donor conceived young adults give to direct-to-consumer DNA testing, and how does direct-to-consumer DNA testing relate to their lived experiences? Thirty-three young adults participated in in-depth interviews in November 2020 and September 2021 as part of a study of donor conceived people in the UK that focuses on the period of young adulthood. All participants were aged between 18 and 31 years, had been conceived by sperm donation at a time of legal donor anonymity, and were mainly resident in the UK. Interviews were analysed using reflexive thematic analysis. Nineteen participants (58%) had used at least one direct-to-consumer DNA test, and 14 (46%) had not. Three participants (9%) had learned about their donor conception inadvertently through a direct-to-consumer DNA test. Twelve participants (36%) had matched with their donor, someone conceived using the same donor, or both. Four related themes that capture participants' perspectives and experiences of direct-to-consumer DNA testing were identified: ruptures, disclosures, webs and temporalities. To the authors' knowledge, this is the first study to evidence both active interest and disinterest in direct-to-consumer DNA testing among individuals who are donor conceived. The meanings ascribed to, and uses of, direct-to-consumer DNA testing vary significantly among donor conceived young adults. Findings relating to the relationship between 'informal' and 'formal' information systems, and the absence of guidance and support for those using direct-to-consumer DNA tests, should be considered carefully by practitioners, regulatory bodies and policymakers going forward.