G v Human Fertilisation & Embryology Authority & Anor
[2024] EWHC 2453 (Fam)
Wessex Fertility Limited & Ors v Donor Conception Network
15 March 2024
[2024] EWHC 587 (Fam)
High Court
A clinic wanted to ask an egg donor for a DNA sample to help diagnose a child born with health issues. The donor previously said she didn't want to be told about any health problems. The court said it was okay to ask, because the situation was different than what the donor initially agreed to, and it could help the child, but the donor still has the right to say no.
Key Facts
- •Wessex Fertility Limited sought declarations regarding the lawfulness of requesting a DNA sample from an egg donor (Donor A) for genetic analysis of a child (AH) born with health problems.
- •Donor A previously consented to disclosure of identifying information for certain purposes but not for research involving direct participation and opted out of notification regarding unsuspected genetic conditions.
- •AH's health issues prompted a request for 'trio testing' involving DNA from both parents and Donor A to aid diagnosis and treatment.
- •The court considered the conflict between Donor A's right to privacy and AH's right to healthcare and genetic information.
- •The Human Fertilisation and Embryology Act 1990 (HFEA 1990), the Human Tissue Act 2004 (HTA 2004), and the General Data Protection Regulation (GDPR) were relevant legal frameworks.
Legal Principles
Consent is central to the HFEA 1990 regime; gametes and embryos should be used according to the relevant person's wishes.
Jennings v Human Fertilisation and Embryology Authority [2022] EWHC 1619 (Fam)
A healthcare professional owes a duty of care to take reasonable care in providing medical treatment and services. This duty is not absolute and must be balanced against the interests of others.
ARB v IVF Hammersmith Ltd [2017] EWHC 2438 (QB), Montgomery v Lanarkshire Health Board [2015] A.C 1430
Article 8 ECHR protects the right to private life, including the right to control access to personal health information. This right is qualified and can be overridden by a legitimate aim.
Evans v United Kingdom (2008) 43 EHRR 21, Mifsud v Malta no 62257/15
GDPR regulates the processing of personal data, requiring lawful bases such as legitimate interests or necessity for medical diagnosis (Articles 6(1)(f), 9(2)(h)).
GDPR, DPA 2018
Outcomes
The court granted the declarations sought by Wessex Fertility Limited.
The court found that the ambiguity in the consent form, the potential benefits to AH's diagnosis and treatment, the possibility of future requests from AH when she turns 18, and the proposed safeguards for Donor A justified overriding her expressed wish not to be contacted. The court also found that the data processing complied with GDPR.