22 January 2018
Senior Lecturer in Sociology, Centre for Reproduction Research, De Montfort UniversityAppeared in BioNews 934
Is sexual reproduction still compatible with Western values? Can germline genome editing ever be considered as medicine? Can we confine ourselves to acting only on serious disorders? These were some of the provocative and complex questions addressed during the last session of the Progress Educational Trust (PET)'s annual conference 'Crossing Frontiers: Moving the Boundaries of Human Reproduction'. The session focused on the ethical challenges posed by recent revolutionising innovations in reproduction, such as artificial gametes and genome editing.
Chaired by Fiona Fox, chair of trustees at PET and chief executive of the Science Media Centre, the session opened with Dr Anna Smajdor, associate professor of practical philosophy at the University of Oslo, Norway, who questioned how human reproduction will be reconfigured and what it will seek to achieve in the context of new scientific and technological advances. In particular, Dr Smajdor discussed how the development of in vitro derived gametes (IVGs) could challenge current biological boundaries in unprecedented ways - potentially enabling single people, same sex-couples, post-menopausal women and even children to have their own genetically related children via complementary sexual gametes. Such an eventuality would mean, some have proclaimed, the end of infertility and the democratisation of reproduction.
However, Dr Smajdor elaborated that what we mean by infertility and reproduction has become quite problematic. Current definitions tend to focus on medical defects and ignore the gendered and social aspects of these issues, such as the situations experienced by same-sex couples. Moreover, she said, it is difficult to believe that treating infertility would mean helping people to be healthier, as pregnancy or IVF involve their own risks for women's health. What are we then trying to achieve through assisted reproduction? Are we really fixing medical problems or are we in fact trying, she suggested, to 'relieve the suffering caused by unfulfilled reproductive aspirations'?
Such a question has to be considered in the light of social expectations and practices of reproduction. In particular, Dr Smajor explained that while it appears crucial for many to having genetically-related offspring, women tend to have children later in life, which means that they do not use the years when they are the most fertile to have children 'naturally'. This, coupled with the possibilities of IVGs and reproductive technologies, could lead to the 'end of sexual reproduction', she suggested. Babies conceived through assisted reproduction might indeed become the norm and Dr Smajdor recommends we negotiate these new possibilities openly.
The second speaker, Philippa Taylor, head of public policy at the Christian Medical Fellowship in London, focused on the ethical issues raised by genome editing. 'We are heading in the right direction,' she said, 'but we are at a junction and need to make crucial decisions.' In her opinion, we should not accept any technological development solely because it is safe, popular or politic. She argued that such decisions need to be centred on a moral stance based on what feels right. While somatic genome editing could be acceptable and helpful as it aligns with the aim of medicine to treat and cure diseases, she contended that a more cautious approach needs to prevail in the case of germline genome editing. To her, germline genome editing is no longer medicine because there are no specific 'suffering patients' and there are potential implications for future generations who have not consented to these interventions. She asked: 'Should humans exercise this kind of power over others?'
Germline genome editing, Taylor added, is also problematic because it is likely to involve the destruction of numerous embryos - something which many people still oppose, especially when done for research purposes rather than in therapy. Finally, she warned about the risk of 'losing an openness to the unbidden' and using germline genome editing for enhancing specific traits, as the definition of disease becomes blurred. As such she argued that we should choose to continue developing somatic genome editing for therapeutic uses, but be firm in maintaining some moral milestones, and refuse germline genome editing in its totality.
By contrast, the final speaker of this session - Guido Pennings, professor of ethics and bioethics at Ghent University in Belgium - argued that it would be difficult to resist, at least for very long, the normalisation of germline genome editing for different types of disorders, once it is proved safe and efficient. Instead of focusing on possible abuses, genome editing should be thought of in relation to other technical advances, in particular those made in the field of genome screening, he said. As it is becoming increasingly easy and common for patients to have access to expanded genetic information, Pennings suggests that PGD (preimplantation genetic diagnosis) will sooner or later be replaced by germline genome editing.
In particular, he argued that while we currently test embryos for a few specific severe disorders, progress in genome screening will soon enable the identification of hundreds of possible mutations related to various disorders. In this context, and given the limited number of embryos available through IVF, it will be difficult to select embryos for PGD that will not carry one or more mutations leading to diseases, such as cancer or diabetes. Germline genome editing, Pennings concluded, is therefore likely to appear as a better, and more efficient option for parents if it prevents their child from developing these identified disorders in the future. This would, he added, have the advantage of preventing subsequent generations from facing similar complex reproductive choices.
Unsurprisingly, these thought-provoking presentations were followed by many questions and comments from the audience. The discussions focused, among other things, on the 'inevitability' of germline genome editing. As one delegate pointed out, we still have the capacity and the regulatory tools to limit how much information patients will access. Generating more genetic information will also means more uncertainty for patients, and might be difficult to interpret without the help of a counsellor. Ultimately, it was suggested, if the goal is to improve our health, it might simply be more efficient to change our lifestyle than modify our DNA.
The session ended with straw poll of the audience who were asked: 'Who would not use germline genome editing if they could avoid their child to develop some inherited diseases?' The response suggested little audience resistance to such a possibility, an outcome which is quite striking given that not too long ago, germline genome editing was still presented as the ultimate and unchallengeable taboo during ethical discussions surrounding mitochondrial donation.
PET would like to thank the sponsor of this session, the Edwards and Steptoe Research Trust Fund, and the other sponsors of its conference - the Anne McLaren Memorial Trust Fund, the ART Institute of Washington, Ferring Pharmaceuticals, the London Women's Clinic and Vitrolife.