Published 19 August 2019
The volume of genetic information available about individuals is now so vast that protecting the anonymity of sperm or egg donors and the children conceived from their donation can no longer be guaranteed by law.
Three years ago Joyce Harper, a former Chair of ESHRE's PGD Consortium, warned with two London colleagues that the anonymity of gamete donors, whatever the requirements of local legislation, could no longer be guaranteed.(1) The volume of genetic information about individuals was rising so rapidly that the anonymity of gamete donation and parental decisions for non-disclosure were likely to become 'highly problematic'.
Now, just three years later, that time has apparently arrived and one of those three authors, geneticist Dr Debbie Kennett from University College London, has told a Progress Educational Trust/University of Liverpool meeting that 'we are now at a stage where donor anonymity is essentially a thing of the past'.(2)
Behind her emphatic statement lies her estimate that direct-to-consumer tests have now been completed by more than 30 million people around the world - so many, said Kennett, that for any donor who's trying to remain anonymous 'it's only a matter of time before they're exposed'. Even ancetry.com alone now boasts that '20 million members have connected to a deeper family story'. And behind the inevitable unveiling of anonymity is a component of these modern ancestry tests which provides 'cousin matching' based on the ever-diminishing but no less unequivocal DNA contributions from back down the family tree. Predictions can be made based on which segments are shared, however small. And even a 6.25% shared DNA would indicate common half cousins, great-great grandparents or great-great aunts and uncles. Nevertheless, for real-life matching some contextual information is still usually necessary to determine the relationship - though this might be as simple as age or location. 'But as you go back in time and share less and less DNA, there's a much wider range of possible relationships,' explained Kennett.
So what does all this mean for anonymity in third-party gamete donation? First, donor-conceived people can use a DNA test to search for their biological parent; those recipient parents can test the child to identify the donor and any other half-siblings; and the donors themselves can also take a DNA test to search for the offspring of their donations. And crucially for the implications of these possibilities, the donor (or the donor-conceived child) need not be in a database to be identified - which might still be done through DNA matching and context detection.
The personal implications of these developments for donors and donor-conceived people are enormous, especially for those donating or conceived at a time when anonymity was (or still is) a legal requirement. Indeed, in 2015 a survey for Focus on Reproduction carried out by ESHRE's Committee of National Representatives found that 12 of 29 European countries (including France) still required by law anonymous gamete donation, though many countries (Netherlands, Sweden, UK) had by then long moved on to non-anonymous schemes.
Yet it now seems that legislation, designed to protect the safety and privacy rights of children and donors alike, will have little effect against an incoming tide of information from personal genetic testing. And if legislation can no longer do it, who or what can protect the privacy and interests of the parties involved, whether donors or children and their families? For a sperm donor whose gametes were provided in an age of anonymity and for not much more than pocket money, the sudden appearance of a biological child can be devastating - even though that donor is not the legal parent and has no legal or financial obligation to the child. Similarly, the girl who suddenly discovers the real biological identity of her father, when it was never disclosed by her parents, will have to rewrite the whole story of her life.(3) All donor-conceived children and all gamete donors are now at risk of such disclosures, said Kennett; the age of donor anonymity is over.
Such a development is rapid and seemingly irrevocable, even in the quick-fire world of fertility. So what it also means is that the fertility sector itself is suddenly faced with a new responsibility to ensure that both gamete recipients and donors are aware of the risks of identification and that those who are unexpectedly exposed to that risk have access to adequate support and counselling. Or to a good lawyer.
1. 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: 1135-1140.
2. This public meeting was held in early August 2019 and jointly hosted by the Progress Education Trust (publisher of BioNews) and the University of Liverpool. The meeting was co-chaired by Sarah Norcross of PET and Lucy Frith, a past co-ordinator of ESHRE's SIG Ethics & Law, which is developing an ESHRE recommendation for the provision of information in gamete donation. A summary film of the meeting's proceedings is available at https://www.bionews.org.uk/page_144206
3. Just days after this meeting many newspapers reported a case in Ohio in which a family's chance finding from a home DNA kit showed that the sperm used in an IVF procedure more than 20 years previously was not as believed from the father but from someone else. See for example https://edition.cnn.com/2019/08/09/health/ohio-ivf-wrong-sperm-lawsuit/index.html
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