Social, legal and ethical implications of mitochondrial donation

Social, legal and ethical implications of mitochondrial donation

Karinne Ludlow¹, Catherine Mills², Rob Sparrow³, Ezra Kneebone², Chris Degeling⁴, Monash University, Faculty of Law Melbourne², Melbourne Victoria³, Victoria Australia^Wollongong, Australia

¹Monash University, Faculty of Law, Melbourne, Victoria, Australia
²Monash University, Centre for Human Bioethics, Melbourne, Victoria, Australia
³Monash University, School of Philosophical, Historical and International Studies, Melbourne, Victoria, Australia
⁴Wollongong University, Australian Centre for Health Engagement Evidence and Values, Wollongong, NSW, Australia

Abstract

Mitochondrial donation (MtD) was legalised for clinical use in Australia in 2022 by ‘Maeve’s Law’. MtD is a genetic technology which, when used together with IVF, offers families the only realistic hope for minimising the risk of passing on certain debilitating genetic diseases while having a genetically related child. This panel presents final results from the Medical Research Future Fund (MRFF)-funded project on which we all collaborate.
Papers:
●Social attitudes (Ezra Kneebone & Chris Degeling (presenters), Narelle Warren, Ainsley Newson). Stakeholder consultation and public engagement was conducted to determine how the consultation process and potential clinical implementation of MtD are perceived. The findings show that Maeve’s Law is generally seen as accurately reflecting views expressed during consultations, which were mostly viewed as a comprehensive, fair and effective process. Strong public support was found for clinical implementation and public funding of MtD.

●Legal responses (Karinne Ludlow (presenter)). Law reforms to permit clinical MtD made Australia the second country to expressly regulate this technology. This paper considers these changes to the law in the context of Australia’s controls on human embryo use, and compares them with those of other countries to provide insights into the evolution of human reproduction governance and identify implications for MtD and emerging genomic technologies.

●Ethical implications (Catherine Mills and Rob Sparrow (presenters), Ainsley Newson). Legislative change to allow MtD to proceed under trial conditions in Australia points toward ethical issues that need to be resolved if wider implementation is to proceed. These include issues such as the social and ethical value of genetic relatedness, how fitness for pregnancy impacts on access to reproductive technologies, and whether there is significant moral difference between MtD and gene editing. This paper considers these issues to suggest some resolutions to move forward debates about the ethics of MtD.

Biography

Chris Degeling is Principal Research Fellow at the Australian Centre for Engagement, Evidence and Values, University of Wollongong. A social scientist and empirical bioethicist with expertise in qualitative and deliberative technologies, Chris leads programs of research focused on the social and political dimensions of new technologies in social and public health policy.

Ezra Kneebone is a PhD candidate and research support officer at Monash University. Her research interests include the social, legal, and ethical implications of assisted reproductive technologies.

Karinne Ludlow is an Associate Professor in the Law Faculty, Monash University. Her research focuses on the regulation of, and legal challenges to, innovative technologies across reproduction, health, agriculture and food. She has received research funding from the ARC, MRFF, Australian Department Industry, Innovation, and Science and Australian Academy of Social Sciences.

Catherine Mills is a Professor in the Monash Bioethics Centre, Monash University. Her research addresses ethical, social and regulatory issues in science and technology innovation in human reproduction. She has received research funding from the ARC, MRFF, NHMRC, Illumina, Monash IVF, Ferring Pharmaceuticals and the Wellcome Trust.

Rob Sparrow is a Professor in the Philosophy Program, and an Associate Investigator in the Australian Research Council Centre of Excellence for Automated Decision Making and Society, at Monash University, where he works on ethical issues raised by new technologies.