BBC Radio 4, Monday 1 September 2014
Presented by Rebecca Morelle
Following a backbench debate in the House of Commons on mitochondrial donation on 1 September (reported in BioNews 770), BBC Radio 4 explored some of the issues raised by these high profile techniques aimed at preventing the transmission of mitochondrial disorders.
Using patient testimony and expert opinion, the programme constituted a lively and clear reminder of the main bioethical and medical arguments in this debate, however it fell short of truly reflecting the complexities surrounding mitochondrial disorders, in particular when it comes to reproductive decision-making.
Mitochondrial donation involves transferring the nuclear material of an affected egg or embryo into a healthy enucleated donor egg or embryo. If authorised and successful, the techniques would not only position the UK as an international leader in this field, but would also enable women with maternally inherited disorders to conceive a healthy biologically related child. In his interview, Professor Doug Turnbull, director of The Wellcome Trust Centre for Mitochondrial Research at Newcastle University, explained how devastating such disorders can be, affecting different bodily organs and often causing severe, incurable diseases.
The testimony of Sharon, a woman with faulty mitochondria, was especially striking in that respect: she lost eight children, most of them shortly after birth. One child survived to the age of 21, but with serious health issues. Her case also highlighted the difficulty in obtaining a genetic diagnosis for these complex disorders, despite the significant progress that has been made in this field of medicine.
As the title 'Mum and Dad and Mum' indicates, the programme put a strong emphasis on the fact that these techniques may enable the birth of children with three different genetic origins: the intending mother and father's nuclear DNA, as well as the donor's mitochondrial DNA (mtDNA), albeit to a much lesser extent. To explore what having 'three genetic parents' could mean in reality, the BBC correspondent interviewed Alana Saarinen, a thirteen year-old girl, who was born (like 30 to 50 other children so far worldwide) thanks to a different technique, 'cytoplasmic transfer'.
This experimental procedure was developed in the late 1990s in the USA to help women having difficulties conceiving. It offers a suitable comparison in terms of implications for relatedness to a third-party as it also involves mitochondria transfer, but, in this case, through the injection of donated cytoplasm into the egg. It also highlighted the possible medical risks of such experimental techniques: cytoplasmic transfer techniques were banned a few years later when genetic or clinical abnormalities amongst several of these children were detected.
The correspondent did, however, stress that the techniques currently under debate differ from cytoplasmic transfer as they involve the replacement of the entire cytoplasm and specifically target people with mitochondrial disorders. Although these techniques have been assessed several times and judged 'not unsafe' by the UK's Human Fertilisation and Embryology Authority, some critics continue to warn about the 'unknown complications' of these techniques, such as unwanted interactions between the nuclear and mtDNA.
The programme also discussed the fact that these genetic modifications will be passed on over the generations is a persistent ethical concern. This is the reason some people oppose these techniques, regarding them as eugenic. Supporters of the technology argue, however, that only mtDNA, which is thought to govern the energy production of human body, will be affected - hence the often used analogy of mitochondrial replacement as a technique akin to 'changing batteries'.
While it could have been more cautious in referring to 'three genetic parents', overall, the report provided a timely summary of the main ethical issues surrounding these new techniques. The term 'parent' does not seem to reflect the views of people like Alana, who are directly affected by mitochondrial donation.
The programme might also have been an opportunity to mention the alternative reproductive options currently available – or not- for women at risk of transmitting mitochondrial disorders to their offspring, and the various types of difficulties these women and their partners can face when having to decide whether or not to have a child under such conditions. There is still a striking need to empirically investigate these issues in order to better understand patients' reproductive needs and how these techniques, if authorised, could be successfully applied in practice.