Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders

Research question

What impact does direct-to-consumer genetic testing (DTCGT) have on information sharing in relation to gamete donor conception?

Design

This study used in-depth qualitative interviews with parents through donor conception, donors, donors’ relatives and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023.

We interviewed 60 people who defined themselves as having been impacted by both donor conception and DTCGT. Fifty-seven of these were resident in the UK at the time of interview. The final sample included 19 (sperm, egg or embryo) donors, 25 donor-conceived people, 20 parents through donor conception and two relatives of donors. Five participants occupied more than one of these roles (hence the numbers do not total 60).

Results

Our research shows that the rise of DTCGT is affecting how information about donor conception is managed. DTCGT: 1) shifts patterns of knowledge about donor conception; 2) increases flexibility regarding the age of access to information about donor relatives; 3) can lead to a growing role for non-professionals, including wider family members, in gatekeeping information about donor conception; 4) accentuates the impact of donor conception for donors’ and donor-conceived people's relatives; and 5) shapes and is shaped by the formal regulatory donor information management systems.

Conclusion

Fertility professionals should inform people using, or considering, donor conception, or (potential) donors, about the different ways DTCGT can impact on sharing information about donor conception. Support is needed for those affected by these changes.