Balancing Consent and Medical Want  – Your Entrance Web page For Data Governance Information


The latest Excessive Court docket ruling in Wessex Fertility Restricted v College Southampton Hospital NHS Basis Belief Human Fertilisation and Embryology Authority v Donor Conception Community (2024), solutions the query of when an categorical refusal of consent will be overridden due to a medical want. 

The claimant on this case, Wessex Fertility Restricted (“the Clinic”) sought declarations that it’s lawful for it to request that an egg donor present a DNA pattern for the needs of genetic evaluation; and the processing of the donor’s private knowledge concerned in making this request is lawful beneath the GDPR. The primary a part of this query required the courtroom to analyse the Human Fertilisation and Embryology Act 1990 (as amended). Knowledge safety professionals shall be within the second half which requires consideration of Article 8 of the ECHR (proper to privateness) and the GDPR.  


The Clinic has been licensed to supply fertility remedy and associated providers since 1992. It handled a pair, Mr and Mrs H, utilizing eggs donated by Donor A and Mr H’s sperm ensuing within the start of a child lady, AH. Sadly, AH was born with a lot of well being issues together with polydactyly, a cardiac abnormality and gross motor delay.
With a view to finest deal with AH, the Clinic want to grasp a genetic reason behind her well being issues. It wished to contact Donor A to request that she supplies a DNA pattern which might be used to hold out genetic evaluation with the intention of creating a genetic analysis of AH’s situation. 

Consent Wording 

When Donor A donated her eggs, she was requested by the Clinic to finish a lot of consent kinds, one among which had the next assertion: 

“I/we want to be notified if Wessex Fertility learns (e.g., by the start of an affected baby) that I’ve a beforehand unsuspected genetic illness, or that I’m a provider of a dangerous inherited situation.”  

Beside this a part of the shape there’s a field to tick ‘sure’ or ‘no’. Donor A, who accomplished this way prematurely of her first egg assortment to be used by Mr and Mrs H, ticked the field to state that she didn’t want to be notified within the occasion of such a discovery.
Per this, Donor A additionally accomplished the shape in the identical means when on the time of her first egg assortment to be used with a special recipient couple and one other when she returned for her second egg assortment the next yr. 

The decide thought-about whether or not Donor A, having particularly refused consent to learn of any genetic circumstances she might need, could possibly be requested to offer DNA for genetic evaluation. 

The Legislation 

The decide first utilized Article 8 of the ECHR (the appropriate to privateness). The decide intently analysed the wording of the consent questions which had been posed to Donor A.
He thought-about that the query to which Donor A answered “no”, in respect of being knowledgeable of genetic circumstances, was not drafted in a means which imagined the situation which had now arisen. Accordingly, it was doable to say that Donor A had not refused consent for a matter comparable to this. 

In concluding that any interference with Donor A’s Article 8 rights are justified and proportionate, if this courtroom made the declaration requested, the decide took account of, amongst different issues, the plain profit to AH as it could present readability about her analysis and/or remedy choices within the widest sense. There may additionally be a wider profit to others who could have been conceived, or could also be conceived sooner or later, utilizing Donor A’s eggs. 

The decide went on to contemplate whether or not the processing of Donor A’s private knowledge is lawful beneath the GDPR concluding that there was a lawful foundation beneath Article 6: 

“It’s clear the ‘official curiosity’ beneath article 6(1)(f) is to allow trio testing to extend the probabilities of a analysis for AH and/or the availability of the right remedy. While it’s recognised Donor A could not consent to offering DNA there’s nonetheless a have to request it and all different steps in need of making the request have been undertaken.” 

The Clinic was additionally processing Donor A’s well being knowledge which is Particular Class Knowledge and thus required a further Article 9 lawful foundation. The decide stated: 

“The processing beneath article 9(2)(h) is lawful as it’s mandatory for the needs of AH’s analysis and/or provision of remedy. Professor Lucassen’s proof is obvious about the advantages of trio testing, such a request shall be made by a well being skilled beneath obligation of secrecy. The request is not going to be incompatible with the needs for which the small print had been collected, specifically, to allow the Clinic to contact Donor A as and when required, which would come with in accordance with any declarations made by this Court docket” 

This case exhibits the significance of guaranteeing that consent statements are fastidiously drafted. In terms of what the information topic did or didn’t consent to, the exact wording of the consent assertion shall be fastidiously scrutinised by the courts.  

This and different knowledge safety developments shall be mentioned byRobert Batemanin our forthcomingGDPR Replaceworkshop. We now have additionally simply launched our new workshop,Understanding GDPR Accountability and Conducting Knowledge Safety Audits. 


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