A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol

Thaldar, Donrich; Townsend, Beverley; Botes, Marietjie; Shozi, Bonginkosi; Pillay, Siddharthiya

doi:10.1371/journal.pone.0256097

Cited by 6 publications

(1 citation statement)

References 36 publications

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“…Firstly, a deliberative public engagement on the governance of HHGE was conducted among South Africans, and the results were published recently. [1] Given the methodology of this public engagement study, which ensured that its participants were properly informed, [2] the results provide valuable insight into informed opinions of South Africans. Secondly, the SA government is currently revising the regulations (i.e.…”

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confidence: 99%

A golden opportunity for South Africa to legislate on human heritable genome editing

Thaldar

2023

S Afr J Bioethics Law

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Background. South Africa (SA) currently has a golden opportunity to legislate on human heritable genome editing (HHGE), as the country is revising its assisted reproductive technology regulations. A set of sub-regulations that deals with HHGE, which could seamlessly slot into the current regulations, has already been developed. The principles underlying the proposed set of sub-regulations are as follows: HHGE should be regulated to improve the lives of the people and should not be banned; the well-established standard of safety and efficacy should be used in the regulation of HHGE; quality of life is what matters, and not preserving a ‘normal’ genome; parents’ reproductive autonomy must be respected; and equality of access to approved HHGE technology should be promoted. Objectives. To ascertain whether the proposed set of sub-regulations that deals with HHGE is aligned with public opinion in SA, and SA’s Bill of Rights. Methods. Public opinion in SA is determined with reference to a deliberative public engagement study on HHGE conducted among South Africans, and the relevant rights in the Bill of Rights are interpreted with reference to recent case law. Results. This proposed set of sub-regulations that deals with HHGE is aligned with public opinion in SA, and SA’s Bill of Rights. Conclusion. Despite the legal and ethical complexities of HHGE, the proposed set of sub-regulations provides a targeted and effective legislative approach. They fit seamlessly into the country’s existing health law framework, creating specific legal standards for HHGE that align with both public opinion and the country’s Bill of Rights.

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confidence: 99%