Genetic privacy; consent; IVF
Summary: We successfully represented the clinic in this unusual action, which tested out the limits of genetic privacy and the ‘right not to know’. The Wessex Fertility Clinic had harvested eggs from a donor (A) who stated in her consent form that she would not wish to be contacted, if the Clinic were to “become aware – e.g. through the birth of an affected child that I have a genetic disease”. In the event, a child (AH) conceived using one of A’s eggs was born with health problems, which may have been genetic in origin.
Against this background, the (Southampton) Trust, caring for AH applied for a declaration that it would be lawful for the Clinic to contact A and ask if she would be prepared to undergo DNA testing. It hoped thereby to discover more about AH’s condition, which would potentially help with her diagnosis and treatment. Among its submissions, the Trust contended that A’s contact refusal did not cover the present situation, as the reason for contact was precisely to discover if the source of AH’s problems was indeed genetic (and if so, lay in A’s DNA).
For its part, the Clinic, while supportive of the Trust’s application, took the view that the contact refusal expressed by A was broad enough to cover the circumstances: her desire not to be contacted and told if her eggs showed a genetic abnormality “encompassed the risk that they might do so”. This was also the position of the Human Fertilisation and Embryology Authority, which though neutral as to the outcome of the case, wished to underscore the importance of taking the terms of gamete providers’ written consent seriously.
In her judgment, Theis J recognised that both views had some merit. However, as she also noted, the answer did not determine the outcome of the application: even if applicable to the circumstances, A’s right to refuse contact was not absolute. Rather, as in the analogous situation of deciding whether to disclose confidential health information to a third party (as opposed to the patient herself), a balancing exercise was needed – also in the light of relevant ECHR and data protection rights: did the interests of the Trust and AH in possibly achieving a more accurate diagnosis and treatment outweigh A’s interest in not being contacted and possibly learning distressing medical news?
Here, by the nature of the proceedings, A was absent and unable to present as to the scope and degree of her concerns. However, the parties gave evidence that, if a contact declaration were made, it would be managed in a careful and planned manner, with safeguards, such as available counselling in place to protect her so far as possible; it was also accepted that A was naturally under no obligation to submit to actual testing, but if she did, matters could be arranged so, if a defect in her DNA were found, she would not be informed.
In her judgment, Theis J carefully weighed the arguments for and against the declaration sought. One factor to which she attached particular importance was that in the future (when she turned 18) AH would acquire the right (under the Human Fertilisation and Embryology Act) to discover A’s identity and contact her, meaning the latter could learn of her possible genetic defect at that point (and with less scope for professionals to manage the situation). Moreover, at the balancing stage it was permissible (to counter the argument that permitting contact could undermine patient trust that their wishes would be respected) to recall the ambiguity of A’s refusal. In the result, her ladyship agreed with the Clinic and the Trust that a carefully managed approach to contact A was the preferable course in the circumstances and granted the declaration accordingly.
