Studies on this topic have mainly relied on in-depth interviews, with a relatively small number of people overall, to capture lived experiences of the positive and challenging emotional and relational consequences of DNA testing.
Overall, the literature is strong in capturing rich, real-life experiences of connecting with the donor, donor siblings, and other genetic relatives. However, less is known about how widespread particular experiences are, and studies are limited by the underrepresentation of the perspectives of minority groups, as well as egg donor and embryo Donor Conceived People (DCP).
Main Papers
Paper 1
How At-Home DNA Tests Are Changing What People Find Out About Donor Conception
Authors: Gilman, L., Redhead, C., Hudson, N., Fox, M., Nordqvist, P., MacCallum, F., Kirkman-Brown, J., & Frith, L. 2024
Key Words: direct-to-consumer genetic testing, donor conception, disclosure, donor siblings, donors, family secrets, anonymity, genetic relatives, information sharing, donor relationships
Aim: To explore how direct-to-consumer DNA testing is changing how people discover, share, and manage information about donor conception.
Findings: The study found that DNA testing is changing donor conception in major ways: it can reveal donor conception unexpectedly, make it easier to find donors and donor siblings, involve wider family members in sharing information, and bypass the formal systems that usually govern access to donor information. It also creates new emotional and ethical challenges for everyone involved.
Participants: 60 people affected by donor conception and DNA testing: 25 donor conceived people, 20 parents through donor conception, 19 donors, and 2 relatives of donors. 57 participants were living in the UK at the time of interview. Some participants occupied more than one role.
Methodology: The researchers carried out in-depth qualitative interviews with people affected by donor conception and DNA testing. They spoke with donor-conceived people, parents, donors, and the relatives of donors about their experiences of using, or considering using, at-home DNA testing and how it affected family relationships and access to information.
Paper 2
How Effective Is DNA Testing in Helping People in the UK and Ireland Find Their Biological Parents?
Authors: Gleeson, M., Rutherford, D., Kennett, D., Cleary, J., Leonard, M. 2022
Key Words: DNA testing, genetic genealogy, unknown parentage, adoptees, donor-conceived, identity, family search, UK, Ireland, ancestry databases
Aim: To investigate how successful commercial DNA testing is in helping people in the UK and Ireland identify unknown biological parents, and how long this process typically takes.
Findings: DNA testing was highly effective, with around half of participants identifying a biological parent – often within a relatively short period of time.
Participants: 277 participants who were born in the UK or Ireland (or had a parent from there) and had used DNA testing to find biological family. Included groups were adoptees, people with unknown fathers/mothers, and Donor Conceived People.
Methodology: Participants completed an anonymous online survey about their experiences using DNA testing to find biological relatives. The survey was distributed through Facebook groups, genealogy and relevant communities to recruit participants.
Paper 3
How DNA Testing Is Changing Family Relationships for Donor-Conceived People
Authors: Nordqvist, P., Gilman, L., Redhead, C., Fox, M., Hudson, N., MacCallum, F., Frith, L. 2025
Key Words: DNA testing, donor conception, donor siblings, kinship, identity, family relationships, genetic matches, anonymity
Aim: To explore how DNA testing affects relationships, identity, and family dynamics for people involved in donor conception.
Findings: Responses to DNA matches varied widely from embracing new relationships to rejecting them, as people negotiated balancing new genetic connections with their existing family relationships.
Participants: 60 people affected by donor conception and DNA testing: participants included 25 donor conceived people, 20 parents who used donor conception, 19 donors, and 2 donor relatives. Most participants lived in the UK at the time of the study.
Methodology: Researchers conducted in-depth qualitative interviews exploring participants’ experiences with DNA testing, how they responded to genetic matches, and how these affected their relationships and sense of family.
Paper 4
Why UK Laws on Donor Anonymity Need to Change in the Age of DNA Testing
Authors: Redhead, C., Frith, L. 2024
Key Words: donor conception, DNA testing, donor anonymity, procedural justice, law reform, identity rights, UK policy, HFEA
Aim: To argue for reform of UK donor conception laws by examining how DNA testing and current legal processes unfairly restrict donor conceived people’s access to information about their genetic origins.
Findings: The paper argues that current UK donor conception laws are outdated and unjust, particularly in the context of DNA testing, and should be reformed to improve access to donor information.
Participants: N/A
Methodology: Theoretical and legal analysis of whether existing legislation on donor anonymity/identifiability is perceived as fair, respectful, and inclusive and/or whether it creates harm that occurs gradually and often invisibly over time. Supported by in-depth interview data from the ConnecteDNA project.
Paper 5
How Donor-Conceived Young Adults in the UK Feel About Using DNA Testing
Authors: Zadeh, S. 2024
Key Words: DNA testing, donor conception, young adults, identity, disclosure, donor siblings, family relationships, UK fertility law, lived experiences, HFEA
Aim: To explore how donor conceived young adults in the UK understand and experience direct-to-consumer DNA testing in relation to their lives and identities.
Findings: Donor conceived young adults had highly varied experiences and attitudes towards DNA testing, with some using it to seek information and connections while others avoided it due to emotional, relational, or ethical concerns.
Participants: 33 donor conceived adults, 18–31 years old. All were conceived using sperm donation at UK clinics, 58% had used DNA testing, 42% had not. 76% were female, most participants were white British, and participants came from different family types (two-parent families, single-mother families, and two-mother families).
Methodology: In-depth online interviews with donor conceived young adults, asking about their experiences, decisions, and feelings around DNA testing.
Paper 6
What Support Do People Need When Using DNA Services to Find Donor Relatives?
Authors: Crawshaw, M., Frith, L., van den Akker., O, Blyth, E. 2016
Key Words: DNA testing, donor conception, support services, counselling, donor relatives, identity, UK DonorLink, genetic searching
Aim: To examine what types of support donor conceived adults and donors need when using DNA-based services to find genetic relatives.
Findings: Participants valued access to emotional, practical, and professional support throughout the DNA search process, highlighting the complexity of managing genetic connections and the need for well-supported services.
Participants: 91 participants total: 65 donor-conceived adults, 26 donors (21 sperm, 5 egg donors), majority were white. All were registered with UK DonorLink (UK DNA-based register).
Methodology: Participants completed a detailed questionnaire about their experiences using a DNA-based donor register, including their views on support services, contact processes, and funding.
Additional Papers where DNA testing is referenced but not a main focus
Paper 7: Why UK Laws on Donor Conception Need Updating in the Age of DNA Testing
Paper 8: What It’s Like for Donor-Conceived Adults to Search (or Not Search) for Biological Connections
Paper 9: How Donor-Conceived Adults Use DNA Registers to Find Biological Relatives
Paper 10: What Support Do Donor-Conceived People Need When Searching for Genetic Relatives?
Huge thanks to Xinia for putting this page together!