A recent case in the Family Division of the High Court illustrates the importance of clarity of wording when arrangements are made for donations in the context of fertility treatment.
The judgment in Wessex Fertility Ltd & Ors v Donor Conception Network [2024] EWHC 587 (Fam) deals with whether it was lawful to request that an egg donor ("Donor A") provide a DNA sample for the purposes of genetic analysis, in circumstances a) where Donor A's eggs had been used in fertility treatment for a couple ("Mr and Mrs H") b) where the resultant child was born with a number of health problems, and c) where Donor A had, at the time of donation, indicated on a "consent form" that she did not want subsequently to be notified that she had a previously unsuspected genetic disease, or that she was a carrier of a harmful inherited condition.
The court considered the position under both Article 8 of the European Convention on Human Rights, which provides a right to respect for a private and family life, and under data protection law - specifically, whether the processing of Donor A's own personal data could be held to be necessary for the purpose of medical diagnosis and/or in the provision of health treatment and proportionate to any interference with her rights (including her prior objections).
Ultimately, the court appears to have found it relatively straightforward to decide that the compelling circumstances warranted the interference under Article 8 and the data protection provisions fell accordingly into place. Perhaps key though was the court's findings to the effect that Donor A would retain the right to her own decision as to whether she provides a sample upon request or not, and that she could also decide that she would not wish to know the results of any DNA testing (and that request would be respected).
Nonetheless, the Court also found that the "consent form" had been ambiguous in the first place as to whether it actually covered the situation in question. There was at least an argument that all the form had done was convey Donor A's wish not to be informed if she had "a previously unsuspected genetic disease, or that (she was) a carrier of a harmful inherited condition, rather than any child subsequently born as a result of her donation.
Probably the key lesson for clinics, clinicians and donors, therefore, is to ensure that terms of any agreements or expression of wishes, made at the time of donation, are as carefully drafted, and carefully read, as possible.