The interim report of the Australian Citizens’ Jury on Genome Editing states
The Australian Citizens’ Jury on Genome Editing (AusCJ) assembled 23 (extra)ordinary Australians to learn, reflect and discuss the conditions under which they might accept the application of various forms of human genome editing. They deliberated over four days at the Museum of Australian Democracy in Canberra on 17-20 June 2021. Their considerable efforts resulted in a series of twelve recommendations pertaining to heritable human genome editing (HHGE), non-heritable human genome editing (NHHGE), research on human genome editing using human embryos and the use of mitochondrial donation.
Although there were important differences among participants’ views that are raised in this report, there was a generally strong level of interest and engagement with the possibilities afforded by the application of human genome editing in terms of reducing the burden of disease. Most participants agreed with a strong degree of conditionality, to ensure that development and application is directed toward community benefit, not for non-clinical enhancement, and that there is a high level of ongoing community engagement and oversight. The potential use of HHGE was much more controversial for participants than NHHGE, but there was a strong level of support for continued research into its application, as long as doing so does not result in implementation via incremental creep. This research would serve to inform a thorough understanding of the associated ethical implications and potential benefits to inform future choices.
A strength of the AusCJ was the diversity of participants’ views. The process resulted in substantive transformation of positions, tending toward greater interest and acceptance of the technology. However, a good deal of this diversity remained after deliberation. Part of that diversity involved substantial concern regarding the more profound implications associated with the technology. These concerns overlapped with feedback from participants that more time was needed to reflect on such a complex issue, as well as a need to hear more critical views of the value of genome editing from the witnesses who presented information. Provisional analysis of the deliberation process suggests that other areas remained incompletely deliberated, including the role of the private sector, considering the strong focus on public benefit and equity of access, and specific ethical issues regarding use of embryos for research on genome editing.
The findings of participants and provisional analysis included in this report demonstrate the need for wider public engagement regarding human genome editing. The alternative is to risk polarisation and distrust, affecting the application of all forms of the technology. Follow up research involving interviews, population survey, and engagement with the community of experts will further assess the issues raised and the results communicated in the final report.
The recommendations produced by the AusCJ are summarised in the report as follows, with the AusCJ commenting that in many cases the view expressed involves a majority rather than complete consensus.
Recommendations regarding heritable human genome editing (HHGE)
R 1 Potential future clinical applications of HHGE should be supported by encouraging more research. If approved, HHGE should only be used to assist people to have healthy, genetically related children, under strict guidelines and regulation.
R 2 Clinical applications of HHGE should be prioritised and non-clinical applications, including enhancement, should be prohibited.
R 3 Any process for approving applications of HHGE must ensure meaningful participation by members of the public.
R 4 People should be informed about and have access to reproductive technologies that do not involve human genome editing, where such exist.
Recommendations regarding non-heritable human genome editing (NHHGE)
R 5 Clinical applications of NHHGE should be supported to alleviate human suffering if meaningful consent can be ensured. Non-clinical applications should be prohibited for now.
R 6 All parts of the NHHGE process should be subject to intersectoral regulation and oversight to ensure that risks and benefits are adequately assessed.
R 7 NHHGE should be made accessible to those who need it. Decisions about equitable access be motivated by concern for the public good.
Recommendations regarding human genome editing research using human embryos
R 8 Genome editing research using human embryos, including human embryos created for research through fertilisation, should proceed subject to stringent regulation and oversight.
R 9 Strict monitoring and regulation should be used to prevent mass production and commercialisation of human embryos for research through fertilisation.
Recommendations regarding mitochondrial donation
R 10 Mitochondrial donation should be permitted for the purpose of preventing mitochondrial disease, but only with appropriate regulation.
R 11 Mitochondrial donation should not be offered for profit and no financial transactions should take place between donor and recipient.
R 12 Mitochondrial donation should be made accessible to those who need it, and consideration should be given to how best to ensure equitable access.
