The Ethics of Mitochondrial Donation
Moot Court, Dickson Poon School of Law, East Wing, Somerset House, King's College London, Strand, London WC2R 2LS
10-11 September 2015
A workshop titled 'The Ethics of Mitochondrial Donation' was recently held at the Centre of Medical Law and Ethics, in the Dickson Poon School of Law at King's College London, on 10 and 11 September 2015. Those attending included academics in philosophy, law and sociology, clinicians, scientists, regulators, policymakers and patient representatives.
The workshop was organised to facilitate further in-depth ethical discussions about mitochondrial donation, in light of the approval by the UK Parliament earlier this year of The Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015, as well as the Human Fertilisation and Embryology Authority's (HFEA) upcoming (29 October 2015) release of licensing conditions to assist with regulating mitochondrial donation and the use of mitochondrial replacement techniques in clinics.
The workshop began with a presentation by Liz Curtis, founder and CEO of The Lily Foundation. She discussed the impact of mitochondrial diseases on families and their children, and how The Lily Foundation supports these families, supports research and spreads public awareness of mitochondrial disease. Liz Curtis highlighted the extent to which mitochondrial replacement techniques may offer hope to parents who wish to have children who will not suffer from mitochondrial diseases and to whom they will be genetically related.
The ongoing scientific and ethical debates surrounding mitochondrial replacement techniques in both the UK and the USA were then discussed by Professor Annelien Bredenoord, in a presentation titled 'The Road to Mitochondrial Gene Transfer: Context Matters'. Professor Bredenoord compared and contrasted the ethical, legal and political contexts of each nation and highlighted how key differences (e.g. access to research funding or attitudes to human embryo research) may impact on how these techniques transition from 'bench to bedside'.
One of the most common themes in the workshop concerned whether mitochondrial replacement techniques affect the 'identity' of the future person and, if so, to what degree and in what ways. This topic was included, for instance, in a presentation titled 'Mitochondrial Replacement Techniques: Selection, Modification and Identity', by Professor Rosamund Scott (King's College London) and Professor Stephen Wilkinson (Lancaster University), and was addressed by way of a response from Professor Wybo Dondorp (Maastricht University).
The ethics of identifying and managing risks in the context of using mitochondrial replacement techniques emerged as an important topic of debate. Presentations by an expert Science, Clinical, Regulatory and Policy Panel addressed a range of topics, including: the unique features of genetic inheritance in this context; the experience of affected families; the question of information for, and decision-making by, prospective parents who may wish to use mitochondrial replacement techniques; the difficulties of explaining to patients, in some cases, that the law currently only permits techniques related to the mitochondrial genome; and the work of the HFEA to regulate mitochondrial replacement techniques and mitochondrial donation. The panel was chaired by Dr Peter Mills (Nuffield Council on Bioethics) and included Professor Francis Flinter (King's College London), Professor Peter Braude (King's College London), Professor Anneke Lucassen (University of Southampton), Professor Doug Turnbull (Newcastle University) and Hannah Verdin (HFEA). One question that attracted considerable discussion in this session was the question of what constitutes an ethically appropriate level of medical risk in this area.
The theme of how mitochondrial replacement might bear on family and kinship relationships also attracted much interest. A talk by Dr Calum MacKellar (Scottish Council on Human Bioethics), titled 'Kinship Identities in the Context of Maternal Spindle Transfer and Pronuclear Transfer', and a response by Professor Martin Richards (University of Cambridge), raised important questions about the significance of genetic parenthood. Some related points of discussion included whether or not mitochondrial donors would likely be seen by mitochondrial donor-conceived persons as parents, or whether some other form of kinship might exist instead. An additional concern was raised as to whether or not mitochondrial donation should be anonymous, as UK regulations currently prescribe.
The question of whether prospective parents have a human right to have their own genetic children, or children more generally, also attracted considerable debate. For instance, these issues were raised and discussed in a presentation by Professor S. Matthew Liao (New York University), titled 'Mitochondrial Replacement Techniques: Identity and the Value of Biological Parenting', as well as in a response presented by Professor Annelien Bredenoord.
Finally, discussions also focused on the ethical, legal and policy questions concerning how mitochondrial replacement techniques should be classified, such as whether they constitute a form of 'germline genetic modification'. A presentation by Dr Anthony Wrigley, titled 'How Should We Classify Mitochondrial Replacement Techniques?' and a response to this presentation by Professor Tim Lewens (University of Cambridge) helped to frame and clarify many of the key issues and concepts in this area of discussion. Questions emerged, for instance, as to how terms such as 'genetic modification' and 'germline modification' should be understood, and the debate also touched on the ethical differences between interventions in the mitochondrial and nuclear genomes, respectively.
Professor Ruth Chadwick (University of Manchester) concluded the workshop by elegantly drawing together the themes and issues discussed over the course of the event. She also raised some topics for consideration, such as: the interests of society (for example in safety); the public interest in effective regulation; the place of gender in the debate (given the fact of maternal inheritance); the need to also consider those who currently live with mitochondrial disease; and the importance of thinking about, and attending to, context.
The questions, issues and themes that emerged during the workshop have important implications for ongoing ethical debates in the field of reproductive ethics, including the development of novel techniques such as CRISPR, as well as the ongoing development of policy and regulation in the field of mitochondrial replacement.
This event is linked with a call for papers for a special issue of Bioethics, titled 'Ethics of Mitochondrial Donation', with guest editors Dr John B Appleby, Professor Rosamund Scott and Professor Stephen Wilkinson. The closing date for submissions is 11 January 2016.
The workshop was part of a Wellcome Trust-funded research programme titled 'The Donation and Transfer of Human Reproductive Materials'.