HEAL UoS

Posts Tagged ‘consent’

Exporting gametes: like Blood, but different.

In 2015, Bioethics, Cases, Reproduction on June 30, 2015 at 3:49 pm

Some twenty years after the death of Stephen Blood, whose situation gave rise to the first litigation on the posthumous use of gametes (see Blood; but also L v HFEA and Secretary of State for Health and Warren v Care Fertility (Northampton) Ltd and HFEA), we have a case concerning the posthumous use of eggs.

Earlier this month, Mr Justice Ouseley, decribed on the judiciary website as the ‘judge in charge of the Administrative Court’ (working on a project about case biographies gets you interested in who people are and how cases ‘fit’ in their bios), found that the HFEA’s refusal to grant permission to export a deceased woman’s eggs out of the UK – to the US – was lawful. R (on the application of IM and MM) v HFEA is a case concerned with an undoubtedly sad set of circumstances. In 2008, during a period of remission from bowel cancer, the applicants’ daughter, AM, had three eggs removed for storage, for her future possible use. Appropriate consent was provided and there was no issue regarding the storage (for ten years, at [26]). However, no further forms were signed. There was some evidence of discussions that, if necessary, AM’s mother, IM, might act as a surrogate; but nothing was put in writing. Sadly AM died in 2011. The question then arose as to whether or not IM and MM might ‘carry out her deepest wishes, as they believe them to be’ (at [1]), i.e., to arrange for fertilisation of their daughter’s eggs, for IM to carry the embryos (assuming the success of the procedure), and bring up any resulting child(ren) with MM).

According to the judgment:
‘export was necessary “because only an overseas centre has agreed to provide treatment”. IVF Hammersmith had refused to treat the mother in the way proposed; the unit felt “that this is beyond what the patient might have consented to and we can not assume that these would have been her specific wishes, as there is no documented confirmation for them.” Before reaching that conclusion, the unit had consulted the Imperial College Ethics Committee which had been unable to reach a consensus or definitive conclusion, which was one of the reasons for that refusal.’ (at [24]).

In the absence of any written directions and/or other clear evidence that this was indeed what AM wished to happen following her death (see [42] re the HFEA’s decision, including at [37] of that extract, some possible steps that might have been taken to evidence this intent), the HFEA’s Statutory Approvals Committee, under its delegated powers (under HFEA 1990 and 2008), refused – three times – to grant permission for the eggs to be exported to New York for fertilisation with an anonymous donor’s sperm, and (assuming success) subsequent implantation in IM.

Perhaps unsurprisingly, given the clear statutory provisions and emphasis on ‘effective consent’ (see Sch. 3 of the HFEA 1990), the decision of the HFEA’s Committee was not found to be either irrational or unlawful (re the scope of powers to issue a Special Direction, akin to Blood, cited above), nor did its decision breach the Article 8 rights of IM and MM. As a statement from the claimants’ lawyers, Natalie Gamble Associates – experts in fertility law: ‘The UK’s original fertility law firm’ – makes clear, only a different decision by the Court of Appeal will enable IM and MM to export the eggs for use; otherwise at the end of the storage period (stated to be 10 years in the judgment, noted above), the eggs can no longer be lawfully stored and will be allowed to perish/destroyed (the language is interesting but has been covered elsewhere by other folk).

A different outcome is, of course, what happened in Blood at the CA, albeit under European Law principles rather than on matters of ethical policy, and in somewhat different circumstances regarding future use. Media reports of this recent case have drawn attention to the intergenerational kinship aspects, see e.g., The Guardian, ‘Mother loses bid to use dead daughter’s frozen eggs to give birth to grandchild’. And similarly, the (non-)marital status of the respective applicants was highlighted by the judiciary. Note, for example, the opening gambit of Lord Woolf MR in Blood: They had married according to the rites of the Anglican Church, using the traditional service contained in the 1662 book of common prayer with its emphasis on the importance of the procreation of children within a marriage’ (at [1]); vs. Ouseley J’s in R (on the application of IM and MM) v HFEA: ‘She was not married and had no partner during any of this time’ (at [2], – see also ‘As I have said, AM had been single then, and remained so at the time of her death’ (at [26]), and ‘She had no partner‘ (at [44])). I am not suggesting for a moment that marital status will or should have any impact on the outcome of the case, but simply wish to flag up the emphasis placed on this aspect in the judgments.

It will be interesting to see if the case does proceed to the CA. If it does not, might it become an example of a ‘shadow case’, as discussed by us in the context of ‘hidden law-making’ – a case that otherwise might have been, and thus may have been significant for the development of this area, but for various reasons (often practical/financial) simply did not proceed?

Caroline Jones

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Consent and confidentiality in genetics

In 2011, Genetics, News on September 8, 2011 at 8:05 pm

The Joint Committee on Clinical Genetics has recently published an updated document Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information (http://www.rcplondon.ac.uk/sites/default/files/consent_and_confidentiality_2011.pdf)

The document was substantially rewritten from the previous edition of 2006 by HEAL member Professor Anneke Lucassen and Alison Hall from the PHG Foundation (see http://www.phgfoundation.org/)

It was a privilege to contribute a foreword to the document, which provides guidance on acceptable practice, illustrates it with case studies and contains some useful flow charts to assist clinicians in making decisions.

Reliable information is the keystone to good practice in all healthcare but the distinguishing feature in clinical genetics is that much of this information affects not only the individual patient but also other family members. The normal principles of confidentiality and data protection are not so straightforward in this context. Clinical genetics services will often want to use the information they gather when providing advice to one person to assist another family member but may be unsure whether this is acceptable.

Where a patient agrees to confidential information about them being used in this way, there is little cause for concern. It may even be appropriate to encourage those who are hesitant to permit this to be altruistic in the expression of their ‘genetic solidarity’ with their relatives. Consideration also needs to be given to whether there are circumstances in which it may be legitimate to use such information even without consent. This will not necessarily mean disclosing it to anyone as it may be helpful merely to use it when assessing the risks of genetic disease to another family member.

Article 8 of the European Convention on Human Rights recognises that people’s right to privacy may be outweighed by the rights and freedoms of others, provided always that it is proportional to do so. This is a difficult balancing act and the new guidance aims to help professionals strike the appropriate balance.

It is an important document that deserves to be well read.

Jonathan Montgomery is Chair of the Human Genetics Commission but this post represents a personal view, not the position of the Commission and is based on his Foreword to the newly published document.