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In Wessex Fertility Limited v University Southampton Hospital NHS Foundation Trust Human Fertilisation and Embryology Authority v Donor Conception Network [2024] EWHC 587 (Fam), Theis J considered whether an egg donor, who specifically refused consent to be informed of any genetic conditions she might have, should be asked to provide DNA for “trio testing”.
Donor A donated her eggs. As a result, baby AH was born by IVF. Baby AH has a range of medical conditions and doctors, in order to best treat her, wish to understand a genetic cause. Part of the diagnostics which doctors carry out, is trio testing. Donor A is one third of this trio: doctors wish to obtain and test her DNA.
When Donor A donated her eggs, she was asked a range of consent questions. One of those questions was whether she wished to be told about any genetic conditions she might be thought to have, if that evidence came to light by way of later testing. She said that she did not want to know about this.
Theis J analysed the question as an Article 8 ECHR issue and, in turn, a data protection issue. Having resolved the Article 8 issue in favour of permitting doctors to ask Donor A for a DNA sample, the data protection analysis (of course) followed suit.
The Court was satisfied that the testing could be set up in such a way that there was no prospect of Donor A being informed that she had any specific disease or condition; indeed, even if baby AH had such a condition, that would not mean that Donor A also had it. However, the Court recognised that there was potential for harm and distress to be caused to Donor A from this request, because initial contact would have to make clear to Donor A the reason for which she was being contacted.
There was a potential benefit to AH and other children who had been conceived, and might be conceived, from Donor A’s eggs; this weighed in favour of Donor A being approached for a DNA sample.
The Court closely analysed the wording of the consent questions which had been posed to Donor A. The Court considered that the question to which Donor A answered “no” in respect of being informed of genetic conditions was not drafted in a way which imagined the scenario which had now arisen. Accordingly, it was possible to say that Donor A had not refused consent for a matter such as this.
It followed that there was a legitimate interest for processing under GDPR Article 6(1)(f) to enable trio testing to increase the chances of a diagnosis for baby AH and/or the provision of the correct treatment. Furthermore, processing under Article 9(2)(h) was lawful as it was necessary for the purposes of AH’s diagnosis and/or provision of treatment.
Further reading:
Wessex Fertility Limited v University Southampton Hospital NHS Foundation Trust Human Fertilisation and Embryology Authority v Donor Conception Network [2024] EWHC 587 (Fam) https://www.judiciary.uk/judgments/wessex-fertility-limited-v-university-southampton-hospital-nhs-foundation-trust-and-others/
A monthly data protection bulletin from the barristers at 5 Essex Chambers
The Data Brief is edited by Francesca Whitelaw KC, Aaron Moss and John Goss, barristers at 5 Essex Chambers, with contributions from the whole information law, data protection and AI Team.
