In March 2012, the Human Fertilisation and Embryology Authority (HFEA) commissioned a major public engagement programme to seek views on two emerging IVF-based techniques to prevent the transmission of mitochondrial disease. Supported by Sciencewise, the programme aimed to gain insight into views on the ethical, social and regulatory considerations of these techniques.
Having been requested by the Secretaries of State for Health and Business, Innovation and Skills the findings usefully informed the HFEA’s advice to government on future policy.
There were five strands to the engagement programme: deliberative public workshops, public representative survey, patient focus group, open consultation questionnaire and open consultation meetings.
A total of 1,070 members of the public were involved (979 in public representative survey and approximately 90 involved in deliberative public workshops). and a total of 1,935 stakeholders (seven in patient focus group, 92 across two open consultation meetings and 1,836 responded to an open consultation questionnaire).
The delivery contractor was OPM with Dialogue by Design and the evaluators were Dr Richard Watermeyer, Cardiff University School of Social Sciences, and Gene Rowe Evaluations.
There have been significant direct impacts on policy development. The dialogue findings were fed directly into HFEA advice on the public view, which contributed to Government considerations on whether to change the law to allow clinical practice of mitochondria replacement.