Tags

Type your tag names separated by a space and hit enter

Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.
Hum Reprod. 2019 04 01; 34(4):751-757.HR

Abstract

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.

Authors+Show Affiliations

The University of Sydney, Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, Sydney, New South Wales, Australia.College of Nursing & Health Sciences, Flinders University, Adelaide, South Australia, Australia.School of Biological Sciences, Monash University, Clayton, Victoria, Australia.Mito Foundation, Surry Hills, New South Wales, Australia.Department of Neurogenetics, Kolling Institute, University of Sydney and Northern Sydney Local Health District, St. Leonards, Sydney, Australia. The University of Sydney, Faculty of Medicine and Health, Sydney Medical School-Northern, Sydney, New South Wales, Australia. Department of Neurology, Royal North Shore Hospital, Northern Sydney Local Health District, Sydney, New South Wales, Australia.Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia. Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia. Victorian Clinical Genetics Services, Royal Children's Hospital, Melbourne, Victoria, Australia.Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Victoria, Australia. School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia.Australian Centre for Health Engagement, Evidence and Values, Faculty of Social Science, University of Wollongong, Wollongong, New South Wales, Australia.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

30865256

Citation

Newson, A J., et al. "Public Attitudes Towards Novel Reproductive Technologies: a Citizens' Jury On Mitochondrial Donation." Human Reproduction (Oxford, England), vol. 34, no. 4, 2019, pp. 751-757.
Newson AJ, de Lacey S, Dowling DK, et al. Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation. Hum Reprod. 2019;34(4):751-757.
Newson, A. J., de Lacey, S., Dowling, D. K., Murray, S., Sue, C. M., Thorburn, D. R., Gillam, L., & Degeling, C. (2019). Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation. Human Reproduction (Oxford, England), 34(4), 751-757. https://doi.org/10.1093/humrep/dez021
Newson AJ, et al. Public Attitudes Towards Novel Reproductive Technologies: a Citizens' Jury On Mitochondrial Donation. Hum Reprod. 2019 04 1;34(4):751-757. PubMed PMID: 30865256.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation. AU - Newson,A J, AU - de Lacey,S, AU - Dowling,D K, AU - Murray,S, AU - Sue,C M, AU - Thorburn,D R, AU - Gillam,L, AU - Degeling,C, PY - 2018/06/04/received PY - 2019/01/11/revised PY - 2019/02/12/accepted PY - 2019/3/14/pubmed PY - 2020/7/22/medline PY - 2019/3/14/entrez KW - attitudes KW - deliberative research KW - ethics KW - mitochondria KW - mitochondrial donation KW - mitochondrial replacement KW - qualitative research SP - 751 EP - 757 JF - Human reproduction (Oxford, England) JO - Hum. Reprod. VL - 34 IS - 4 N2 - 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. SN - 1460-2350 UR - https://www.unboundmedicine.com/medline/citation/30865256/Public_attitudes_towards_novel_reproductive_technologies:_a_citizens'_jury_on_mitochondrial_donation_ L2 - https://academic.oup.com/humrep/article-lookup/doi/10.1093/humrep/dez021 DB - PRIME DP - Unbound Medicine ER -