22 August 2016
From 14-16 June hundreds of bioethicists from around the globe gathered in Edinburgh for the biennial World Congress of Bioethics (see also BioNews 858). The Reproductive Donation research team headed by Professor Rosamund Scott from King's College London, and Professor Stephen Wilkinson from Lancaster University, organised a transnational symposium on mitochondrial donation. Issues covered ranged from methodological concerns about the development of policy governing mitochondrial donation, to particular ethical puzzles raised by the implementation of the procedures themselves.
Dr Colin Gavaghan, associate professor at the University of Otago, began the symposium by raising questions about appeals to public opinion when developing the regulation of mitochondrial donation, as was done in the UK by the Human Fertilisation and Embryology Authority (HFEA). First, Gavaghan suggested we ought to think carefully about whether the opinions of people directly affected by mitochondrial disease ought to be weighted more heavily than those for whom the personal risks and benefits remain largely theoretical, or whether we should take a more egalitarian approach. Second, Gavaghan argued that we need to pay close attention to how questions and responses are phrased when conducting public consultations, because terms like 'approve' and 'disapprove' are vague. Some people may find particular technologies distasteful, and may think that they themselves would not want to make use of them, while at the same time think that the technology in question should not be prohibited. Gavaghan concluded by stating that, at a minimum, regulation that seeks legitimacy in terms of community values should seek to comport with ethical or political convictions that are widely (if not necessarily universally) shared, strongly held, and applied with a degree of consistency across a range of situations. Mere distaste for a novel practice – even strong distaste – would not satisfy the demands of a liberal or pluralistic regulatory regime, unless that distaste can be located within something more normatively substantive.
Dr Ainsley Newson, associate professor at the University of Sydney, followed with a discussion about the weight that ought to be placed on the wishes of intending parents when deciding whether the risks associated with mitochondrial transfer are acceptable; a question that is made more complex by the fact that the precise nature of the risks involved remains unknown. Newson acknowledged that the particular parental preference likely at play, the desire to have genetically related offspring, is hard to justify on philosophical grounds, but that it is nevertheless a strong preference held by many, and as such should not be dismissed out of hand. Furthermore, Newson argued that if we value parental integrity then we ought to place normative weight on privacy and autonomy in parental decision-making. However, parental autonomy is not without normative constraint, and parents have an obligation to look out for the interests of their children. The approach recommended by Newson for navigating this matrix of rights and obligations is to proceed with a rebuttable presumption that intending parents will make use of mitochondrial transfer in a responsible manner. Any policy that may interfere with the decision of intending parents to use mitochondrial transfer ought to be developed in a transparent manner and in partnership with those affected. Key in this process is recognising the lived experiences of individuals with mitochondrial disease, considering what reasonable alternatives exist, and acknowledging that the interests of future children and parents can converge as well as diverge.
Moving to questions raised by the genetics of mitochondrial donation, Scott presented work done in collaboration with Wilkinson regarding where mitochondrial donation fits within the spectrum of genetic interventions, and why this may matter for ethical and regulatory purposes. One focus of this discussion was the extent to which mitochondrial donation should be treated akin to heritable manipulations of nuclear DNA, which is a practice that is ethically controversial and widely prohibited. Many of the regulations governing genetic interventions were drafted without specific consideration of mitochondrial DNA, and so it is not clear where mitochondrial donation ought to be placed in existing frameworks. Scott provided a summary of reasons that have been offered for treating mitochondrial donation differently from manipulations of nuclear DNA. These include: (a) that mitochondrial donation involves the transfer of unaltered molecules of DNA, (b) that mitochondrial DNA follows a different inheritance pattern from nuclear DNA, and (c) that mitochondrial DNA does not affect personal characteristics. A second topic discussed by Scott was the manner in which mitochondrial donation may affect the identity of the child created. Here Scott noted that the different approved techniques, maternal spindle transfer and pro-nuclear transfer, may affect identity differently. Consequently, while maternal spindle transfer might be considered a specialised form of assisted reproduction that prevents the transmission of mitochondrial disease, pro-nuclear transfer could be considered as more like a treatment for the future child. This may have consequences for how the technology is regulated, and what ethical norms apply.
The final talk was given by Dr Reuven Brandt, research associate at Lancaster University, and focussed on whether children created via mitochondrial donation ought to have a right to access identifying information about their mitochondrial donors. The current position in the UK is that no 'right to know' will arise in cases of mitochondrial donation, which is a departure from the norm that applies to gamete donation. Brandt began by assessing two arguments offered by the HFEA and the Nuffield Council on Bioethics for why individuals ought not to have a right to access identifying information about their mitochondrial donors. The first is that mitochondrial DNA does not result in resemblances in personal characteristics between donors and offspring, and the second is that mitochondrial donation does not result in a unique genetic connection between donor and offspring. Brandt's main criticisms of these two arguments were that both rest on contested empirical claims, and that mitochondrial donation and gamete provision may be more similar than the HFEA and the Nuffield council presume when it comes to resemblances and genetic connections. However, Brandt continued by arguing that there are many hitherto unrecognised asymmetries between the two kinds of donation that could in fact justify policy that treats gamete donation and mitochondrial donation differently with respect to the right to know. Therefore the status quo is justifiable, but for reasons other than those offered by the HFEA and the Nuffield Council.
The symposium sparked much discussion between the panellists and the audience. One theme that emerged from the ensuing discussion was the role that technological developments can play in causing us to reevaluate the principles that underlie applied ethics and policy. This is of course a topic that could itself occupy its own symposium!