Mitochondria donation: an uncertain future?

Earlier this year, UK Parliament voted to change the law to support new and controversial in-vitro fertilisation (IVF) procedures known as ‘mitochondrial donation’. The result is that the UK is at the cutting-edge of mitochondrial science and the only country in the world to legalise germ-line technologies. The regulations came into force on 29 October this year, and clinics are now able to apply for a licence.

The process involves using part of a donated egg which contains healthy mitochondria to power the cells, and would allow women with mitochondrial disease to have healthy, genetically related children. This is so controversial because mitochondria contain genetic material, which means that the mitochondria donor would be contributing to the genetic make-up of the child and importantly, to the genetic make-up of their future children. As a germ-line technology, which does or does not involve genetic modification (depending on which definition of genetic modification you use), it is not surprising that ideas of Frankenstein science and ‘slippery slopes’ to designer babies have dominated the headlines. As there is no cure and treatment is limited, the possibility of preventing a child from inheriting the disease has been widely welcomed. But the techniques have also attracted criticism from groups concerned about embryo research and those who believe there are safer alternatives.

The change in law was preceded by an intense period of debate and enquiry, where safety was, and remains, a key question. The Human Fertilisation and Embryology Authority (HFEA), who regulates assisted reproduction and research within the UK, convened an expert panel to conduct three scientific reviews. They found that the techniques were ‘not unsafe’ which proved an adequate basis for the government to change the law. However, this is not the end of the regulatory process. Although the techniques are legalised and clinics can now apply for a licence, the HFEA is not expecting to receive any applications until all safety tests recommended by the expert panel have been carried out and published, and then each case will be considered on an individual basis.

Questions also remain about the future health of the children. The UK Department of Health recommended engaging them in long term follow up. But this raises considerable ethical issues about genetic testing of children and their potential to be medicalised from an early age. It also raises the practical questions: will parents readily agree, and would incentives need to be offered to secure their involvement?

Another important question concerns the role of the mitochondria donor. One of the defining characteristics of technologies involving donation is the potential to produce new social relationships, but what about mitochondria donation? For some, mitochondrial donation appears similar to egg or sperm donation which suggests a genetic (parental) relationship between child and donor. For those who feel that the genetic contribution is minor because of the small number or limited role of the genes involved, mitochondria donation is considered more like tissue or organ donation. Here, the UK government has made some important decisions and the debate has to some extent been settled. Although the mitochondria donor is not to be considered as a ‘parent’ and has no legal obligation towards the child, there is recognition that the child might like to know something about the donor. The child will be able to access non-identifying information such as screening tests, family health, and personal information provided by the donor.

One of the key assumptions on which access to donor information is based (and this also relates to assumptions about families’ willingness to agree to follow up) is that the child will know about mitochondria donation. In the case of sperm donation and adoption, individuals are now able now to access information about their parentage, but accessing this information relies very much on open disclosure practices of families. One of the enduring factors about family life is that many children born through assisted reproduction and those who are adopted are not told of the origins of their birth. Disclosure is not always inevitable, and there are decisions to be made about how to tell (should it be blurted out or drip fed?), who should tell, and when is the right time to tell. We also know that telling a child potentially sensitive information will probably mean that everyone else in their social (and online) world will also know.

The ultimate test for proving whether any novel IVF techniques work, and knowing what the implications are, is through human application. This means there will be a lot of interest in the first cohort of babies born through the technique. But whether families will agree to additional and sustained contact with the clinic, disclose information to their child, and whether they will recognise the donor within their lives, are currently unknowns. We also know very little about how or whether women with mitochondrial disease will choose to use these technologies. How families proceed from here will determine how and whether mitochondrial donation becomes a significant technology of the future.

Featured image credit: “9-Week Human Embryo from Ectopic Pregnancy” by Ed Uthman. CC-BY-SA 2.0 via Wikimedia Commons