12 June 2017
ByAppeared in BioNews 904
The UK's first symposium to discuss the sociology of mitochondrial disorders and novel reproductive technologies took place on 5 May 2017 in London. It was organised by Dr Cathy Herbrand of De Montfort University and Dr Rebecca Dimond of Cardiff University, with support from the Foundation for the Sociology of Health and Illness and the BSA Human Reproduction Study Group. The event aimed to develop sociological thought around mitochondrial donation, based on invited contributions from social scientists who have conducted empirical research.
Mitochondrial donation was legalised in 2015 in the UK, as a new reproductive technology to prevent the transmission of maternally inherited mitochondrial disease. As the many articles published in BioNews attest (see BioNews 871 and 873), the technology raised much debate, particularly regarding the implications of conceiving a child with genetic material from three people. The symposium provided an opportunity to revisit these debates with the benefit of hindsight; examining the social, cultural and economic context which framed them, and addressing topics that were missed or under-examined at the time.
Dr Neil Stephens of Brunel University London opened the symposium by focusing on the UK debates and identifying the different protagonists and groups that had shaped the discussions. Based on his interviews with these stakeholders, Neil articulated how some of the key groups understood their own role, judged the role of others, and how collectively they networked among themselves to secure a particular outcome.
A recurrent theme that some speakers kept coming back to was the lack of transparency surrounding some crucial issues. For instance, Professor Erica Haimes of Newcastle University spoke about her research with egg providers, and how their roles and values in the UK debates were 'rendered invisible'. Based on interviews conducted with key experts and with women at risk of passing on mitochondrial disease, Dr Cathy Herbrand also highlighted the medical, legal and financial limits of the techniques, which may end up only be accessible to a restricted group of women despite the high number of potential ‘users’ announced in the media and in public debates.
After lunch, the focus shifted to address the complexities of living with mitochondrial disorders and the various situations and problems this can engender. Lydia Harper of Cardiff University talked about her PhD research exploring patient experiences of Leber Hereditary Optic Neuropathy, a mitochondrial disease which causes sight problems. Lydia spoke about how patients negotiated stigma in everyday life, highlighting the extent to which her participants didn't always ask for help, and often hid the signs of their disability to prevent them appearing vulnerable in front of others.
Julia Tonge of Newcastle University talked about the important role that the clinic can play in assisting patients making reproductive decisions, based on her PhD research exploring patient experience of mitochondrial disease. The complex nature of mitochondrial disease has generated different, frequently complicated diagnostic paths for patients seeking a diagnosis.
Reflecting on how these diverse experiences were not represented within the public debates, Dr Rebecca Dimond talked about the different reasons why patients supported the legalisation of the technology. Based on her own and Dr Herbrand's projects, Rebecca explained that both evidence submitted by patients through public consultations and media stories about patient experiences had been key to changing the law, even when patients might not actually wish to use the technology themselves.
Another strong theme throughout the day was the importance of understanding national and international contexts, different political stances and global inequalities. Dr Jacqueline Luce, presenting from Mount Holyoke College, US via Skype, described the difficulties of researching an emerging reproductive technology in Germany, where clinicians and scientists believe it could never be made legal due to political sensitivities towards embryo politics and suggestions of eugenics.
Dr Sandra Gonzalez-Santos, presenting from Mexico via Skype, conducted an analysis of US, UK and Mexican media coverage. In her presentation titled 'Made in Mexico?' she highlighted how the pivotal role of Mexico and the Mexican doctors in facilitating the birth of the world's first mitochondrial donation baby became virtually invisible against the focus on the US doctor and the US stance towards mitochondrial donation.
Finally, Dr Ken Taylor of Newcastle University returned to the UK context to highlight several outstanding questions about how the debates played out, including the representation of mitochondrial donation as the only suitable reproductive option, and the continuing concerns by some over safety and that the whole review process had been rushed.
Overall, the symposium provided a valuable opportunity to discuss the wider implications of new reproductive technologies for families, clinicians, scientists and society, and to raise sociological questions about how the debates were carried out. It highlighted that the UK debates had presented a simplified version of patient experience, and dismissed many of the complexities of making decisions about reproduction in the context of a very variable and often late onset disease.
Finally, the symposium enabled social science researchers to discuss the practical difficulties of researching in a highly politicised and emotive field. Our discussions revealed the precarious position of researchers who wish to comment on the politics of controversial technologies, and to be critical of some aspects of the political process, while maintaining good working relationships with stakeholders and gatekeepers. While the UK regulatory system is often held as a ‘gold standard', these anomalies highlight the need for social scientists to continue to draw attention to uneven distribution of power, and the importance of local and global contexts. We still have a lot to learn and share about our work, but this first symposium is a good start.