Kate Adlington: Mitochondrial donation—the person at the centre of “three person IVF”

kate_adlington_picA vote was held yesterday in the House of Commons to decide whether to allow mitochondrial donation to be used in clinical practice. The vote marked the culmination of a decade of research and consultation into the science and ethics of so called “three person IVF”—a modified IVF technique proposed to prevent transmission of mitochondrial disease by combining the DNA of two parents with the healthy mitochondria of a donor woman.

Mitochondrial disease can be debilitating and fatal. Every year, approximately 150 women in the UK at risk of transmitting mitochondrial disease could benefit from this technique. For the first time, it presents the opportunity for them to have their own unaffected and genetically related children.

Public consultations and expert scientific reviews have concluded that mitochondrial donation would be acceptable: in terms of science, ethics, and public support. However, opponents believe that these reviews have been too hasty, and the Church of England and the Catholic Church have come out strongly counselling caution.

In advance of the vote, a lively debate was held on Monday night at the Houses of Parliament by the Progress Educational Trust to explore the arguments polarising the issue. Surprisingly, the debate steered clear of the traditionally thorny ethical issue of “status of the embryo”—perhaps because this question has been extensively rehashed in debates about IVF and preimplantation genetic diagnosis, both of which gained support in parliament long ago.

Instead, the debate focused firmly on the issue of risk. Philippa Taylor, of the Christian Medical Fellowship, argued that the unknown risks of mitochondrial donation are unacceptable to take, particularly on behalf of potential future generations and when alternative ways are available (for example, adoption or IVF with donor eggs). Frances Flinter, a professor of clinical genetics at Kings College London, agreed that we can’t absolutely guarantee the safety of this technique—but this is the case with many new, experimental treatments and there is no evidence of danger in the case of mitochondrial donation.

Dr David King, founder and director of Human Genetics Alert, used a familiar slippery slope argument, warning of the inevitable risk of eugenic experiments and “designer babies” if we proceed along this path. Professor of bioethics John Harris argued that we can either “put on crampons or skis” on such a slope: our humanity enables us to choose the direction we take.

Harris challengingly proposed that the popular, regularly practised (although rarely prescribed) technique of “normal” sexual reproduction might now be considered more risky than many assisted techniques. Considering that it’s associated with risk of infection, a genetic lottery, and involves arguably unacceptable harm to embryos (with three to five embryos perishing for every live birth), he asked whether this evolved technique would gain the support of parliament in a similar debate.

Perhaps the most convincing arguments for MPs to vote yes came from those who will be most directly affected by the outcome of the vote: patients. One patient powerfully argued that they understood the risks, yet remained willing to accept them to ensure that future generations of their family would be free of the disease that affected them.

King strongly felt that such emotional, personal accounts should hold no sway in ethical debates. Yet, presumably patient voices are vital? They will be the ones sitting in the clinic individually weighing up these difficult decisions.

An issue at the heart of this debate was the desire of mothers (and all parents) to have children that are genetically related to them. While not all people or societies place importance on this goal, it is undeniable that many do. King argued that having a genetically related child as a result of mitochondrial donation was a social benefit, rather than a medical one, and that it had no place in a debate about the relative risks and benefits of medical treatments.

This is a surprisingly narrow, biomedical view of healthcare—and one that doesn’t resonate. As doctors and healthcare professionals, we ask our patients what is important to them and are guided by their response: whether their concerns or goals are medical, social, psychological, spiritual, or otherwise. Our interventions might have positive outcomes in one or more of these dimensions and it’s not always the medical one. In fact, we accept that sometimes patient preferences will conflict with our more biologically focused goals, yet we continue to ensure they guide joint decision making.

Having one’s own genetically related child is a deeply personal goal. And in a person centred healthcare system, it is one that we should support and help to achieve if and where possible, while ensuring that patients understand and accept any potential risks.

Yesterday the motion passed by 382 yes votes to 128 no votes, and the UK is set to become the first country in the world to permit mitochondrial donation. It’s a victory for a future facing and person centred health service that truly values the life goals of the people it cares for, whatever they may be.

Kate Adlington is a clinical fellow at The BMJ. Follow Kate on Twitter @kateadlington

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.