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Evidence Library · Long-term questions

Donor anonymity no longer exists

Consumer DNA testing ended it, and the fertility societies have stopped claiming otherwise.

If you are offered an anonymous donor, the honest position is that anonymity cannot be delivered, whatever a clinic contract says.

The argument is simple. Consumer genealogy databases match relatives. A donor can be identified through their own DNA or through the DNA of any relative who tests, regardless of what was promised at the time of donation. The paper that made this case in 2016 ended: All parties concerned must be aware that, in 2016, donor anonymity does not exist.

It set out three consequences, all of them consent-relevant:

  1. Donors should be told their anonymity is not guaranteed, wherever they donate.
  2. Donor-conceived adults who were never told may find out through a consumer test.
  3. Parents should be told that their child's DNA will identify that they are not the biological parent, and should be encouraged to disclose.

The fertility societies have adopted this. Their published donation guidance states: The transition in language from 'anonymous' to 'nondirected' reflects the realization that anonymity is decreasing with the prevalence of and access to nonmedical genetic testing. The same guidance lists, among the things counselling should cover, understanding of the likelihood and implications of contact through direct-to-consumer deoxyribonucleic acid (DNA) websites and implications for the donors, their children, current or future partners, and their extended families.

It has already happened, in the dataIn a prospective cohort followed for 36 years, 75 donor-conceived adults aged 30 to 33 were interviewed. 53% had already found donor siblings, through registries and genetic ancestry sites.

This is not a future risk to plan for. For a majority of one cohort, it is something that already occurred.

The practical implication for a decision made today is that a plan built on the child never finding out is a plan built on something that will probably not hold. Whether and how to tell a child is a family decision, not a medical one. But it should be made knowing that the alternative to telling them is probably not secrecy, it is their finding out from a website.

Where this comes from:
104. Harper JC, Kennett D, Reisel D. The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business. Hum Reprod. 2016;31(6):1135-1140.
105. Practice Committee of the American Society for Reproductive Medicine; Practice Committee for the Society for Assisted Reproductive Technology. Guidance regarding gamete and embryo donation. Fertil Steril. 2021;115(6):1395-1410.
107. Koh AS, Bos HMW, Rothblum ED, Carone N, Gartrell NK. Donor sibling relations among adult offspring conceived via insemination by lesbian parents. Hum Reprod. 2023;38(11):2166-2174.
106. Practice Committee of the American Society for Reproductive Medicine; Practice Committee for the Society for Assisted Reproductive Technology. Gamete and embryo donation guidance. Fertil Steril. 2024;122(5):799-813.

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