ArticlePloS one2022
A deliberative public engagement study on heritable human genome editing among South Africans: Study results.
Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The Ethics of Human Embryo Editing via CRISPR-Cas9 Technology: A Systematic Review of Ethical Arguments, Reasons, and Concerns.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2025Pooled it
- Public opinion survey on heritable human genome editing in South Africa: a study protocol.Global health action · 2026Article
- Dutch Christian Faith Leaders Deliberating Human Germline Gene Editing: A Qualitative Study.Journal of religion and health · 2026Article
- Public knowledge, attitudes, and ethical views on CRISPR-Cas9 gene editing for genetic diseases in Taif, Saudi Arabia.Journal of community genetics · 2026Article
- Navigating the human gene editing scene and proposing a new governance framework in Africa: from knowledge to policy to action.Frontiers in genome editing · 2026Article
- Views of the Swiss public towards gene editing.PloS one · 2026Article
- "I Know that One Day I Will Be Cured": Perspectives on Acceptability of Curative Therapies for Sickle Cell Disease in Tanzania.Public health genomics · 2026Article
- How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana.BMC medical ethics · 2025Article
- A decade of public engagement regarding human germline gene editing: a systematic scoping review.European journal of human genetics : EJHG · 2025Article
- Anticipatory gaps challenge the public governance of heritable human genome editing.Journal of medical ethics · 2025Article
- Adapting the deliberative democracy approach to LMIC settings: a case study in Nigeria.Frontiers in public health · 2025Article
- Public participation in human genome editing research governance: what do scientists think?Journal of community genetics · 2024Article
- Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research.The American journal of bioethics : AJOB · 2023Article
- Points to consider in the development of national human genome editing policy.Cambridge prisms. Precision medicine · 2023Review
Corrections and comments
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This paper reports the results of a public engagement study on heritable human genome editing (HHGE) carried out in South Africa, which was conducted in accordance with a study protocol that was published in this journal in 2021. This study is novel as it is the first public engagement study on HHGE in Africa. It used a deliberative public engagement (DPE) methodology, entailing inter alia that measures were put in place to ensure that potential participants became informed about HHGE, and that deliberations between the participants were facilitated with the aim of seeking consensus. A diverse group of 30 persons was selected to participate in the DPE study, which took place via Zoom over three consecutive weekday evenings. The main results are: Provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE to prevent genetic health conditions and for immunity against TB and HIV/Aids, while significant majorities opposed allowing HHGE for enhancement. The dominant paradigm during the deliberations was balancing health benefits (and associated improvements in quality of life) with unforeseen health risks (such as loss of natural immunity). The seriousness of a health condition emerged as the determining factor for the policy choice of whether to allow an application of HHGE. More generally, equal access to HHGE qua healthcare service featured as an important value, and it was uncontested that the South African government should allocate resources to promote scientific research into HHGE. These results are aligned with the policy principles for regulating HHGE in South Africa suggested by Thaldar et al. They call for urgent revision of South African ethics guidelines that currently prohibit research on HHGE, and for dedicated HHGE legal regulations that provide a clear and comprehensive legal pathway for researchers who intend to conduct HHGE research and clinical trials.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.