Event Review: Reforming the Human Fertilisation and Embryology Act 1990 – Consent and posthumous conception

The issue of the posthumous retrieval, storage and use of gametes or embryos continues to present ethical and legal complexities that attract headlines across world (see recently BioNews 1231). This one-day workshop, organised by Dr Lisa Cherkassky, University of Exeter, considered proposed changes to posthumous conception and addressed questions of consent, the rights of the deceased, and child welfare. The workshop provided an opportunity to explore deeply ingrained ethical tensions in great deal and to hear a range of views on the matter, exposing the pervasive social aspects of death, reproduction and family heritage.    

The workshop addressed the proposal of 'presumed consent' to the use of gametes and embryos posthumously. Currently, in the UK express consent is required from both parties by indicating on consent forms the permitted uses of gametes or embryos. As case law illustrates (see BioNews 1148), sometimes a person's premature and unexpected death can mean that formal consent requirements are not complied with. This can result in a partner being unable to use reproductive material, even where it has been produced during the course of fertility treatment entered into together, unless a court orders it permissible to do so. Undoubtedly, this causes affected parties great stress at a time of already great anxiety.

A presumed consent model could save parties the distress of applying to court and give effect to their original reproductive plans. In situations where the parties are already undergoing fertility treatment, there is likely to already exist a sufficient evidential basis to justify presuming consent. However, it was pointed out that not all those engaging in fertility treatment may want their gametes to be used after their death. It is important, therefore, that presumed consent can be rebutted where evidence points to the contrary, such as religious beliefs. Alternatively, an implied consent model could require those wanting to use gametes posthumously to provide evidence as to their partner's would-be intent, but as was said, requiring someone to recall their deceased partner's wishes is not only hugely stressful but may also be evidentially unreliable.

What transpired from the discussion was an emphasis on the importance of consent to posthumous use, but it was interesting to see the range of divergent views on what model consent should take, and whether consent itself provides a sufficient justification alone. Some believed that gametes should be treated as any other tissue and routinely extracted posthumously on deemed consent, for example.

The reason for using gametes posthumously was discussed further. Is it right to allow those not undergoing fertility treatment to rely on a presumed consent module to use gametes posthumously? There was some disquiet about this, with some participants equating this to the unfettered use of other reproductive technologies for non-medical reasons, such as sex-selection. Although it was then asked why it would be fair to allow those undergoing treatment to use gametes posthumously and not those who are not – an important reminder to avoid drawing arbitrary distinctions.

The next set of issues concerned the rights of the deceased. Dr Cherkassky pointed out that the law on what we can do with the deceased is quite thin. Given the invasiveness of posthumous sperm extraction (some time was spent outlining the techniques in some detail over post-break tea and biscuits), is extraction legally and ethically permissible? The imagery of posthumous sperm extraction was powerful and some time was spent considering the ethical relevance of the uneasiness around witnessing or performing the technique – are these visceral gut reactions sufficiently good reasons not to perform the technique? How we respond to the treatment of the dead is something that legal policy in this area needs to grapple with.

Finally on the welfare of the child born using posthumous gametes, there was much discussion over at what stage welfare considerations should be considered (at the treatment stage, retrieval or whether it bears down on the permissibility in the first place). There were strong and divergent opinions on this topic. While everyone agreed that welfare of the resulting child was an extremely important, if not the paramount consideration, there was much discussion over what precisely are the welfare risks to children and how, if at all, these can be measured. For example, do children feel pressure to turn out like the deceased parent? Does the pain of losing a parent have any correlation to being born from posthumous gametes once children start coming of age? It is clear that strong evidence is needed and more research in this area is needed.

Overall, this was a very informative workshop. It highlighted the complexity of the issues and the importance of multi-disciplinary perspectives from law, fertility and healthcare practice. It emphasised the importance of having an effective consent model (both in principle and practice), and the need for further exploration of what are deemed to be sufficient reasons for posthumous use of gametes. It is crucial to have a forum in which these issues can be explored further with all stakeholders involved.

See also:

A recent poll conducted by PET (the Progress Educational Trust) shows public support for posthumous use of gametes and embryos in the UK by a partner or family member. Events such as PET's 'Till Death Do Us Part' (see BioNews 1169) and engagement with the wider public are vital to this process.