Mitochondrial transfer dialogue praised as "model of putting public deliberation into action" by Chair of US Presidential Commission for the Study of Bioethical Issues
On 2nd September 2015, at the 22nd meeting of the Presidential Commission for the Study of Bioethical issues in Washington DC, Dr Amy Gutmann, Chair of the Commission, praised the mitochondrial transfer dialogue - and the Sciencewise role in that dialogue - as an example of "deliberation and its impact in action".
The mitochondrial dialogue was chosen as one of only three examples cited - and the only one from outside the US. Dr Gutmann chose the examples to show that deliberation does have an effect in practice - that "have made a significant difference".
In her presentation, Dr Gutmann said:
"Starting in the mid-2010s, amid a growing body of research on mitochondrial disorders and therapies, public interest in mitochondrial donation became a topic if great public interest in the United Kingdom.
"In February 2011, the UK Secretary of Health requested that the Human Fertilization and Embryology Authority, HFEA -- so I don't have to say the whole thing over and over again -- more thoroughly explore -- and I quote -- "expert views on the effectiveness and safety of mitochondrial transfer." Upon completing a comprehensive scientific analysis, HFEA acknowledged the need for an analysis of the ethical issues.
"In September 2011, the Nuffield Council on Bioethics, of which we are -- we feel particularly close and we admire greatly, established a working group to oversee the project. The Nuffield Council subsequently published a report in which, among other things, it encouraged broader public deliberation and strict parliamentary oversight.
"HFEA then partnered with Sciencewise, the UK's national center, for public dialogue and policy-making involving science and technology issues, which we will hear more about later today. So Sciencewise was partnered with HFEA to create a public process that included the use of deliberative workshops, public representative surveys and questionnaires, open consultation meetings, and patient focus group: a really thorough deliberation. And the findings found broad public support for the use of mitochondrial donation techniques.
"Following these processes of public deliberation, the House of Commons and the House of Lords approved regulations on mitochondrial donation in 2015. The United Kingdom is the first country in the world to approve a regulated system for the use of mitochondrial donation. That is something that we, as a deliberative commission, really admire and applaud. It was really a model of putting public deliberation into practice." (emphasis added)
The Commission was established by President Obama in November 2009, to advise him on bioethical issues that may emerge as a consequence of advances in biomedicine and related areas of science and technology to ensure that scientific research, health care delivery and technological innovation are conducted in a socially and ethically responsible manner. The President appointed Amy Gutmann to serve as Chair at the same time.
Roland Jackson, Executive Chair of Sciencewise, attended by invitation to present on Sciencewise and public dialogue to the same Commission meeting.
See related project page: Mitochondria replacement