International calls to model problematic UK mitochondrial replacement legislation
Singapore’s Bioethics Advisory Committee (BAC) recently announced that it is seeking public feedback about the use of mitochondrial replacement techniques (MRTs), also known as nuclear genome transfer or 3-person IVF, to prevent an uncommon form of mitochondrial disease. The announcement accompanied the release of a report on MRTs, which are currently prohibited in Singapore and more than 40 other countries worldwide. The public consultation runs from April 20 to June 15.
In 2005, the BAC recommended against the use of MRTs due to a lack of scientific evidence for their safety and feasibility. It has recently decided to reconsider this decision in light of what it calls “recent scientific developments and international debates.” As Channel News Asia reported, a Committee spokesperson referenced the UK’s 2015 legalization of MRTs as an example of developments that require revisiting the issue.
We have also seen recent calls in Australia and Canada to reconsider bans or legalize these still experimental techniques which similarly cite the example of the UK, where Parliament voted to exempt them from the country’s ban on human germline modification. As part of this push, the chief executive of the Australian Mitochondrial Disease Foundation claimed that MRTs have been “rigorously reviewed scientifically and ethically, as well as from a public-perception point of view in the UK.”
As Jessica Cussins and I explain in a recent article, however, the UK should not be taken as a policy model for the legalization of MRTs, nor for any other form of human germline modification. While the UK policy process may appear scientifically rigorous and inclusive of public opinion on the surface, it was in fact very problematic, and discounted both scientific and public voices that warned of health and societal risks.
Let’s consider MRTs for what they really are – controversial, experimental techniques that will have unknown effects upon any resulting children and their future children. As UC Davis stem cell biologist Paul Knoepfler has noted, the technology is essentially a form of human experimentation.
Further, as the BAC report itself recognizes, these risks are being imposed not to treat or cure disease in existing people, but to permit the small number of women affected by this form of severe mitochondrial disease to have unaffected children who are genetically related to them. All women in this situation could form families using donor gametes or embryos, or adoption, and some could use embryo screening to have unaffected children and preserve full genetic kinship. Françoise Baylis of Dalhousie University in Canada puts it this way: "When the argument is we have to develop this science because we have people out there in the world that want genetically related children and that desire is so important that we're going to bring societal and other resources to respond to it — I'm not persuaded."
In the UK, no births have yet resulted using this process. And even with close follow-up, it would be years and possibly generations before we could know the effects of using an evolutionarily radical procedure to create human beings from the genetic material of three different individuals. Given existing alternatives for family building, is fulfilling the desire of a small number of people for genetic connection worth the potential safety and psychosocial risks to future generations?