STUDY QUESTION Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted?
SUMMARY ANSWER After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens' jury believed that children should be able to be born using mitochondrial donation.
WHAT IS KNOWN ALREADY Research suggests that patients, oocyte donors and health professionals support mitochondrial donation to prevent transmission of mitochondrial disease. Less is known about public acceptability of this novel reproductive technology, especially from evidence using deliberative methods.
STUDY DESIGN, SIZE, DURATION This study comprised a citizens' jury, an established method for determining the views of a well-informed group of community members. The jury had 14 participants, and ran over one and a half days in 2017.
PARTICIPANTS/MATERIALS, SETTING, METHODS Jurors were members of the public with no experience of mitochondrial disease. They heard and engaged with relevant evidence and were asked to answer the question: Should Australia allow children to be born following mitochondrial donation?'
MAIN RESULTS AND THE ROLE OF CHANCE Eleven jurors decided that Australia should allow children to be born following mitochondrial donation; 7 of whom added conditions such as the need to limit who can access the intervention. Three jurors decided that children should not (or not yet) be born using this intervention. All jurors were particularly interested in the reliability of evidence, licensing/regulatory mechanisms and the rights of children to access information about their oocyte donors.
LIMITATIONS, REASONS FOR CAUTION Jurors' views were well informed and reflected critical deliberation and discussion, but are not intended to be representative of the whole population.
WIDER IMPLICATIONS OF THE FINDINGS When presented with high quality evidence, combined with opportunities to undertake structured deliberation of novel reproductive technologies, members of the public are able to engage in detailed discussions. This is the first study to use an established deliberative method to gauge public views towards mitochondrial donation.
STUDY FUNDING/COMPETING INTEREST(S) This study was funded by a University of Sydney Industry and Community Collaboration Seed Award (2017), which was awarded contingent on additional funding from the Mito Foundation. Additional funding was provided by the Mito Foundation. The Foundation was not involved in jury facilitation or deliberation, nor analysis of research data.
TRIAL REGISTRATION NUMBER Not applicable.
- deliberative research
- mitochondrial donation
- mitochondrial replacement
- qualitative research