Public Consultation on Ethical, Legal and Social Issues Arising from Human Nuclear Genome Editing
The Bioethics Advisory Committee (BAC) seeks public input on the ethical, legal, and social issues arising from Human Nuclear Genome Editing (HNGE).
Last updated 18 December 2024
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Bioethics Advisory Committee (BAC)
Consultation Period: 03 Jun 2024 - 16 Aug 2024
Status: Closed
Detailed Description
1. The Bioethics Advisory Committee (BAC) has developed a public consultation paper on the ethical, legal, and social issues arising from Human Nuclear Genome Editing (HNGE) and invites public feedback from 6 June 2024 to 16 August 2024.
Summary of Key Issues
2. In recent years advances in HNGE technologies have resulted in the discovery of more precise tools that hold great promise in advancing human biomedical research and clinical translation, with the potential to improve human health. HNGE technologies in human biomedical research have facilitated developments in genetics, disease modelling and therapeutics. The use of non-heritable gene editing1 holds promise for treating genetic disorders, infertility, enhancing personalised medicine and improving health outcomes. While HNGE technologies have the potential to confer resistance to diseases and enhance traits in the future, they also raise ethical issues such as unintended consequences and long-term effects on individuals and future generations, resulting in social inequalities, and other issues on consent. Maintaining a balance between scientific innovation and ethical responsibility remains a challenge in navigating the complex landscape of HNGE.
3. Recognising these ethical challenges, the BAC has developed a public consultation paper titled ‘Ethical, Legal, and Social Issues arising from Human Nuclear Genome Editing’ to discuss the ethical issues from the use of HNGE technologies in biomedical and clinical research and other potential clinical applications, and the ethical principles underpinning the applications of HNGE. The paper is intended to guide academics, researchers, healthcare professionals, research and healthcare institutions, Clinical Ethics Committees (CECs) and Institutional Review Boards (IRBs) on the ethical use of HNGE applications in human biomedical research, clinical research, and healthcare.
4. The BAC would like to invite the public to provide views and feedback on the potential ethical, legal, and social issues that could arise from the use of HNGE in human biomedical and clinical research, and other potential clinical applications. These include issues on mosaicism, off-target effects, long-term safety, equitable access, the broad effect of genetic enhancement on society, and how the HNGE governance framework can be implemented in Singapore. Please refer to Annex A for the outline of key ethical issues and questions raised in the consultation paper.
How to Participate
5. A copy of the public consultation paper is available here. The public consultation paper can also be accessed from the BAC website at www.bioethics-singapore.gov.sg
6. The BAC welcomes feedback on the issues discussed in the consultation paper, or any other aspects on the ethical use of HNGE applications in Singapore. All comments should be sent in, together with the completed respondent’s form, by 16 August 2024:
By email to:
bioethics_singapore@moh.gov.sgBy post to:
Biomedical Ethics Coordinating Office
1 Maritime Square
#09-66 HarbourFront Centre
Singapore 099253By online feedback form at:
https://go.gov.sg/hnge-respondent-form
Have any thoughts and views on this?
7. There will be focus group discussions (FGD) sessions conducted virtually and/or physically in July and August 2024. The BAC will invite representatives from various academic, research and healthcare institutions, CECs, IRBs, professional bodies and societies, religious organisations, as well as industry partners to participate in these sessions. The FGD session will include a presentation to provide an overview of the public consultation paper on HNGE and the emerging ethical challenges. There will also be breakout sessions for participants to discuss the ethical issues (see Annex A). Interested individuals/representatives are invited to participate in the upcoming FGD to provide views on the public consultation paper. The details of the event are as follows:
The details of the event are as follows:
Date / Time: | FGD 1: 22 July 2024, Monday, 10am - 1pm |
|---|---|
Mode: | Zoom [Note: The FGD will be converted to in-person discussions for sessions with fewer than 20 participants] |
To register: | FGD 1: 22 July 2024, Monday, 10am – 1pm Please submit this form by 8 July 2024, 5pm. FGD 2: 26 July 2024, Friday, 1pm – 4pm Please submit this form by 12 July 2024, 5pm. FGD 3: 13 August 2024, Tuesday, 9am – 12pm Please submit this form by 30 July 2024, 5pm. |
Remarks: |
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8. A summary of the main comments/feedback received, together with the final report and recommendations will be published on the BAC website and REACH Portal in 1H 2025.
1Non-heritable gene editing involves making changes to somatic cells, and including all cells in the body that are not involved in reproduction. Changes made to these cells cannot be inherited by any children of the person receiving the treatment.
HNGE Public Consultation - Annex A [PDF, 47 KB]
HNGE Public Consultation Paper_vF [PDF, 1,329 KB]
Press Release for HNGE Public Consultation (6 June 2024) [PDF, 151 KB]
HNGE Public Consultation Respondent Form (6 Jun 2024) [DOCX, 58 KB]