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Public Engagement on Techniques to avoid Mitochondrial Disease

  • Client

    The Human Fertilisation and Embriology Authority (HFEA)

  • Sectors

    Science and Technology, Health

  • Services

    Engagement

Introduction

Traverse delivered a multi-strand public and stakeholder dialogue and engagement programme to gauge opinion on the introduction of new IVF-based techniques for the avoidance of mitochondrial disease.

The overall aim for this project was to develop an understanding of:

  • The ethical issues entailed in licensing techniques to avoid mitochondrial disease
  • How people comprehend ethical issues involved in techniques to avoid mitochondrial disease
  • The deliberative process people go through to form views on techniques to avoid mitochondrial disease
  • The difference between informed and uninformed views on techniques to avoid mitochondrial disease
  • Interested stakeholders’ arguments for and against techniques to avoid mitochondrial disease.

Methodology

Following an evidence review and stakeholder telephone interviews we delivered a number of strands of engagement activity in order to understand the views of specific groups of the population drawing on different types of evidence:

  • Deliberative public workshops: Participants were recruited to represent a broad spectrum of age, gender, socio-economic status and family circumstances. The aim of this strand of the consultation was to explore public attitudes in-depth, and to understand participant viewpoints as they become increasingly engaged with, and knowledgeable about, mitochondrial disease and mitochondria replacement techniques. The workshops took place in Cardiff, Newcastle and London and were reconvened.
  • Public representative survey: Just under 1,000 face-to-face interviews were carried out with members of the public across 175 locations. For each location, demographic quotas were set to ensure the sample was representative. The aim of the survey was to benchmark public opinion on topics that were discussed in other engagement strands.
  • Patient focus group: One focus group was held with six participants. Its aim was to create a forum where people affected by mitochondrial disease, either directly or indirectly, could give their in-depth views on mitochondria replacement techniques.
  • Open consultation questionnaire: Respondents to this public consultation were invited to consider a range of information presented on the consultation website, and to respond to seven questions using the online questionnaire, via post or by email. Respondents included stakeholder organisations, individuals with personal experience of mitochondrial disease as well as a large number of members of the public.
  • Open consultation meetings: These meetings were open to anyone wishing to attend and were widely advertised. At each meeting, a panel of speakers shared their knowledge and views with audience members. Panellists were selected to reflect a range of different perspectives and areas of expertise, and to provoke discussion amongst participants.

The programme was guided by an Oversight Group representing a wide range of interests and perspectives on mitochondrial replacement.

Impact

The different strands of evidence were presented in standalone reports and also synthesised in a final report. The findings provided an essential part of the evidence used by HFEA to decide how to advise government on the introduction and regulation of mitochondria replacement. In March 2013, the HFEA agreed its advice to government which considered that there was broad support for mitochondria replacement being made available to families at risk of passing on a serious mitochondrial disease. The Authority also recommended a series of safeguards, such as specific licences for clinics and further assessments of safety and efficacy of the techniques.

Project Lead:

Other Key Staff:

Who We Work With

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