Mitochondrial donation dialogue continues to influence thinking, with four new citations
Four new published papers refer to the success of the Sciencewise-supported mitochondrial donation dialogue, including in influencing the eventual legalisation of this procedure in the UK:
• The first paper stresses that UK "remains at the forefront of mitochondrial science - it is currently the only country in the world to legalize germ-line technologies", and the legalisation of mitochondrial donation "has national and international significance". It refers directly to "a dialogue exercise" by Sciencewise.
The article cites the dialogue as one of the factors in demonstrating the "robust nature of regulation in reproductive medicine in the UK" and concluding that:
"The process of legalization was not smooth nor a foregone conclusion. The wide reaching safety reviews, public dialogues, parliamentary debates and numerous calls for evidence have highlighted the robust nature of regulation in reproductive medicine in the UK. The extensive interest shown by the media, scientists, religious and special interest groups, patients and the general public demonstrate the strength of feeling in support of, and against, the introduction of these techniques and highlight the considerable challenges for policy-makers."
'Social and ethical issues in mitochondrial donation' by Rebecca Dimond, Cardiff University. British Medical Bulletin, 2015, 115; 173-182. http://bmb.oxfordjournals.org/content/115/1/173.short
• The second paper also draws attention to the ground breaking nature of the technology, and the process for legalisation. It describes the process as follows (emphasis added):
"The HFEA were also asked to seek public views on mitochondrial donation and a public dialogue launched in collaboration with Sciencewise in December 2012. The consultation was thoroughly evaluated and credited as an exemplary exercise in public engagement for policy purposes. The HFEA published its report of the consultation in March 2013 and its advice to Government was that there was general support for permitting mitochondrial donation in the UK. It was also reported that the ethical concerns were outweighed by the arguments in favour of permitting mitochondrial donation."
"While the UK is the first to legislate in this area, there is likely to be interest from other countries in mitochondrial donation. For example, the US Food and Drug Administration has requested that the Institute of Medicine produce a consensus report into the ethical and social policy considerations of novel techniques for prevention of maternal transmission of mitochondrial DNA diseases."
'Research into Policy: A Brief History of Mitochondrial Donation', by Lyndsey Craven, Mary Herbert, Alison Murdoch, Julie Murphy, James Lawford Davies, Doug M. Turnbull, in Stem Cells, 2015. http://onlinelibrary.wiley.com/doi/10.1002/stem.2221/epdf
• The third citation is in a chapter by Lee Rayfield, who is in the Office of the Bishop of Swindon and who was on the Oversight Group appointed by the HFEA for the dialogue. The chapter focuses on the moral and ethical dilemmas in molecular biology, the most recent exemplified by mitochondrial donation which could be seen as taking an irrevocable step and 'crossing the Rubicon'. The chapter hopes that "learning from the UK experience will be valuable for other legislative domains and for approaching potential future Rubicons".
'Crossing the Rubicon: Assisted Reproductive Technologies and Remaining Human', by Lee Rayfield, in Screening the Single Euploid Embryo: Molecular Genetics in Reproductive Medicine, edited by E. Scott Sills. Springer, Switzerland 2015.
• Finally, a paper in Current Stem Cell Reports cites the mitochondrial transfer dialogue as an example of the value of good public engagement. The paper starts by asserting that "Outreach and engagement are necessary for science to proceed with transparency and public trust" and goes on to say that
"There is broad and deepening consensus that some forms of outreach and/or engagement are essential for science" and "a general trend over time of moving from outreach to engagement. The trend is likely motivated by critiques of outreach being used merely as a not fully legitimate tool for gaining public acceptance through eliminating knowledge deficits, rather than as a truly participatory process".
The rationale for public engagement is summarised in the conclusion to the paper as follows:
"Scientists, in general, and stem cell scientists, in particular, have an obligation to ensure that their work proceeds in parallel with robust outreach and engagement efforts. The arguments in support of this are varied and compelling. Scientists should be accountable; their work is best undertaken transparently; they should strive towards democratic legitimacy through public debates over the risks and merits of their work. Scientists are given license to experiment and are obligated to engage with the public about their plans and findings. Robust outreach and engagement ought to yield both better science and better, more widely adopted outcomes."
More practical rationales identified include "the inclusion of multiple, diverse perspectives and result in better, more robust, more socially acceptable, and rapidly adopted outcomes than science left up to sponsors and scientists alone".
Two Sciencewise-supported public dialogue projects are used as examples of the value of public engagement - the Stem Cell dialogue as well as the mitochondrial transfer dialogue:
"We can see the value of public engagement, in action. The UK launched a stem cell public engagement consortium, the Stem Cells Dialogue, in 2007. The two primary aims of this project were to engage the public about developments in stem cell research, in order that their views can be taken into account in policy development by Research Councils, the scientific community and policy makers; and to contribute to creating an environment across sectors and groups that will sustain dialogue on issues relating to developments in stem cell research and their clinical applications.
More recently, the UK completed another public dialogue around the complex and controversial science of mitochondrial donation techniques as a means of addressing mitochondrial disease. Following this engagement, the UK parliament passed legislation to allow their Human Fertilisation and Embryology Authority to review proposals and potentially license the use of this technology."
The concluding paragraph identifies social media as a valuable option, among others:
"Outreach and engagement are different and important types of public participation. Outreach and engagement can helpfully be envisioned along a spectrum ranging from broadcasting out information to actively participating in conversations. Most scientists agree that these activities are important, and almost all participate in some form of these activities, if only occasionally. Along with other scientists, stem cell scientists and their institutions have an obligation to ensure that work in their particular areas proceeds in parallel with robust outreach and engagement efforts. There are many paths towards effective outreach and engagement. Social media-based tools can be particularly valuable for discharging these duties. Risks and challenges associated with outreach and engagement activities are present and manageable."
'Outreach and Engagement: Evolving Media and the Public Obligations of Stem Cell Science', by Alan C. Regenberg and Theodore E. Schall. In Current Stem Cell Reports, 2015. DOI 10.1007/s40778-015-0023-3