The recent High Court ruling in Wessex Fertility Limited v University Southampton Hospital NHS Foundation Trust Human Fertilisation and Embryology Authority v Donor Conception Network (2024), answers the question of when an express refusal of consent can be overridden because of a medical need.
The claimant in this case, Wessex Fertility Limited (“the Clinic”) sought declarations that it is lawful for it to request that an egg donor provide a DNA sample for the purposes of genetic analysis; and the processing of the donor’s personal data involved in making this request is lawful under the GDPR. The first part of this question required the court to analyse the Human Fertilisation and Embryology Act 1990 (as amended). Data protection professionals will be interested in the second part which requires consideration of Article 8 of the ECHR (right to privacy) and the GDPR.
Background
The Clinic has been licensed to offer fertility treatment and related services since 1992. It treated a couple, Mr and Mrs H, using eggs donated by Donor A and Mr H’s sperm resulting in the birth of a baby girl, AH. Sadly, AH was born with a number of health problems including polydactyly, a cardiac abnormality and gross motor delay.
In order to best treat AH, the Clinic need to understand a genetic cause of her health problems. It wished to contact Donor A to request that she provides a DNA sample which would be used to carry out genetic analysis with the aim of establishing a genetic diagnosis of AH’s condition.
Consent Wording
When Donor A donated her eggs, she was asked by the Clinic to complete a number of consent forms, one of which had the following statement:
“I/we wish to be notified if Wessex Fertility learns (e.g., through the birth of an affected child) that I have a previously unsuspected genetic disease, or that I am a carrier of a harmful inherited condition.”
Beside this part of the form there is a box to tick ‘yes’ or ‘no’. Donor A, who completed this form in advance of her first egg collection for use by Mr and Mrs H, ticked the box to state that she did not wish to be notified in the event of such a discovery.
Consistent with this, Donor A also completed the form in the same way when at the time of her first egg collection for use with a different recipient couple and another when she returned for her second egg collection the following year.
The judge considered whether Donor A, having specifically refused consent to be informed of any genetic conditions she might have, could be asked to provide DNA for genetic analysis.
The Law
The judge first applied Article 8 of the ECHR (the right to privacy). The judge closely analysed the wording of the consent questions which had been posed to Donor A.
He 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.
In concluding that any interference with Donor A’s Article 8 rights are justified and proportionate, if this court made the declaration requested, the judge took account of, amongst other things, the obvious benefit to AH as it may provide clarity about her diagnosis and/or treatment options in the widest sense. There may also be a wider benefit to others who may have been conceived, or may be conceived in the future, using Donor A’s eggs.
The judge went on to consider whether the processing of Donor A’s personal data is lawful under the GDPR concluding that there was a lawful basis under Article 6:
“It is clear the ‘legitimate interest’ under article 6(1)(f) is to enable trio testing to increase the chances of a diagnosis for AH and/or the provision of the correct treatment. Whilst it is recognised Donor A may not consent to providing DNA there is still a need to request it and all other steps short of making the request have been undertaken.”
The Clinic was also processing Donor A’s health data which is Special Category Data and thus required an additional Article 9 lawful basis. The judge said:
“The processing under article 9(2)(h) is lawful as it is necessary for the purposes of AH’s diagnosis and/or provision of treatment. Professor Lucassen’s evidence is clear about the benefits of trio testing, such a request will be made by a health professional under obligation of secrecy. The request will not be incompatible with the purposes for which the details were collected, namely, to enable the Clinic to contact Donor A as and when required, which would include in accordance with any declarations made by this Court”
This case shows the importance of ensuring that consent statements are carefully drafted. When it comes to what the data subject did or did not consent to, the precise wording of the consent statement will be carefully scrutinised by the courts.
This and other data protection developments will be discussed by Robert Bateman in our forthcoming GDPR Update workshop. We have also just launched our new workshop, Understanding GDPR Accountability and Conducting Data Protection Audits.
