A deliberative public engagement study on heritable human genome editing among South Africans: Study results

Thaldar, Donrich; Shozi, Bonginkosi; Steytler, Michaela; Hendry, Gill; Botes, Marietjie; Mnyandu, Ntokozo; Naidoo, Meshandren; Pillay, Siddharthiya; Slabbert, Magda; Townsend, Beverley

doi:10.1371/journal.pone.0275372

Cited by 6 publications

(1 citation statement)

References 28 publications

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“…If legislation were ever introduced into the Australian parliament to allow the creation of human embryos for genome editing research, it seems inevitable that similar concerns will be raised. In contrast, the status of the human embryo receives much less attention in citizen deliberations in other jurisdictions (Thaldar et al, 2022 ).…”

Section: Future Development Of Policy For Human Genome Editingmentioning

confidence: 99%

Points to consider in the development of national human genome editing policy

Nicol¹,

Niemeyer²,

Paxton³

et al. 2023

Camb. prisms Precis. med.

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CRISPR and other genome editing technologies have the potential to transform the lives of people affected by genetic disorders for the better. However, it is widely recognised that they also raise large ethical and policy questions. The focus of this article is on how national genome editing policy might be developed in ways that give proper recognition to these big questions. The article first considers some of the regulatory challenges involved in dealing these big ethical, social questions, and also economic issues. It then reviews the outcomes of a series of major reports on genome editing from international expert bodies, with particular focus on the work of the World Health Organisation's expert committee on genome editing. The article then summarises five policy themes that have emerged from this review of the international reports together with a review of other literature, and the authors' engagement with members of the Australian public and with a wide range of experts across multiple disciplines. Each theme is accompanied by one to three pointers for policy makers to consider in developing genome editing policy.

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Section: Future Development Of Policy For Human Genome Editingmentioning

confidence: 99%

Points to consider in the development of national human genome editing policy

Nicol¹,

Niemeyer²,

Paxton³

et al. 2023

Camb. prisms Precis. med.

View full text Add to dashboard Cite

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Public participation in human genome editing research governance: what do scientists think?

Waltz,

Flatt,

Juengst

et al. 2024

J Community Genet

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Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing

Geuverink,

van El,

Cornel

et al. 2023

Humanit Soc Sci Commun

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Human genome editing technologies are advancing at a rapid pace, and their potential disruptive implications lead to ethical and societal questions that cannot be addressed by scientists alone. Further consideration of different stakeholders’ views on human genome editing is crucial to translate society’s needs and values into thoughtful regulations and policies. We therefore explored the views of carriers of autosomal dominant disorders on somatic and heritable genome editing (SGE and HGE) and the role of their (secular or religious) worldviews. This group of stakeholders would be most impacted by the eventual clinical application of genome editing technologies and therefore their views must be taken into account. Ten in-depth semi-structured interviews were conducted, and data were analysed using reflexive thematic analysis. We found an overarching theme: ‘Balancing between the desire to prevent serious diseases in individuals through HGE, and the fear of the harmful impact on society and nature’ and three main themes: ‘The benefits of SGE and HGE for individuals’, ‘the societal consequences of using HGE’, and ‘the consequences of interfering with nature through HGE’. Although the lived experiences of the participants varied, they were positive towards the safe use of SGE regardless of the severity of conditions, and most participants were positive towards the use of HGE but only to prevent severe genetic conditions. A few participants were against using HGE in any case, regardless of the severity of a condition, based on their religious beliefs. However, most participants with either religious or secular worldviews reported similar views on HGE, both regarding their desire to prevent serious genetic disorders and their fear of the impact on society and nature if HGE were implemented more widely. Reflecting on HGE involved complex and often ambivalent views. When engaging different stakeholders, space is needed for ambivalence and the weighing of values.

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A deliberative public engagement study on heritable human genome editing among South Africans: Study results

Cited by 6 publications

References 28 publications

Points to consider in the development of national human genome editing policy

Points to consider in the development of national human genome editing policy

Public participation in human genome editing research governance: what do scientists think?

Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing

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