A golden opportunity for South Africa to legislate on human heritable genome editing
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Abstract
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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References
Thaldar DW, Shozi B, Steytler M, et al. A deliberative public engagement study on heritable human genome editing among South Africans: Study results. PLoS ONE 2022;17(11):e0275372. https://doi.org/10.1371/journal.pone.0275372
Thaldar DW, Townsend B, Botes M, Shozi B, Pillay S. A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol. PLoS ONE 2021;16(8):e0256097. https://doi.org/10.1371/journal. pone.0256097
South Africa. [Draft] Regulations Relating to Assisted Conception of Persons. Government Gazette No. 44321, 25 March 2021. Government Notice 251. https:// www.gov.za/documents/national-health-act-regulations-relating-assisted- conception-persons-25-mar-2021-0000 (accessed 29 January 2023).
Greenfield A. Making sense of heritable human genome editing: Scientific and ethical considerations. Prog Mol Biol Transl Sci 2021;182:1-28. https://doi. org/10.1016/bs.pmbts.2020.12.008
Thaldar DW, Shozi B. South Africa’s latest medically assisted reproduction draft regulations: Close, but no cigar. Tydskrif vir die Suid-Afrikaanse Reg 2022;1-24. https://doi.org/10.47348/TSAR/2022/i1a1
Thaldar DW, Botes M, Shozi B, Townsend BA, Kinderlerer J. Human germline editing: Legal-ethical guidelines for South Africa. S Afr J Sci 2020;116(9/10). https://doi.org/10.17159/sajs.2020/6760
South Africa. Constitution of the Republic of South Africa, 1996 – Chapter 2: Bill of Rights. https://www.gov.za/documents/constitution/chapter-2-bill-rights (accessed 29 January 2023).
Thaldar D, Shozi B, Kamwendo T. Culture and context: Why the global discourse on heritable genome editing should be broadened from the South African perspective. BioLaw J 2021;4:409-416. https://doi.org/10.15168/2284-4503-2052
Surrogacy Advisory Group v Minister of Health (50683/2020) [2022] ZAGPPHC 558, [2022] 4 All SA 187 (GP). http://www.saflii.org/za/cases/ZAGPPHC/2022/558 (accessed 29 January 2023).
Mill JS. On Liberty. First published in 1859.
Thaldar DW. The in vitro embryo and the law: The ownership issue and a
response to Robinson. Potchefstroom Electr Law J 2020;23(1):1-20. https://doi.
org/10.17159/1727-3781/2020/v23i0a6217
Thaldar DW, Shozi B. The legal status of human biological material used for research. S Afr Law J 2021;138:881-907. https://doi.org/10.47348/SALJ/v138/i4a9 13. Thaldar DW, Shozi B. Procreative non-maleficence: A South African human rights perspective on heritable human genome editing. CRISPR J 2020;3(1):32-36.
https://doi.org/10.1089/crispr.2019.0036
Minister of Home Affairs v Fourie [2005] ZACC 19, 2006 (1) SA 524. http://www.
saflii.org/za/cases/ZACC/2005/19.html (accessed 29 January 2023).
South Africa. Regulations Relating to the Artificial Fertilisation of Persons. Government Gazette No. 35099, 2 March 2012. Government Notice R175. https:// www.gov.za/sites/default/files/gcis_document/201409/35099rg9699gon175.
pdf (accessed 29 January 2023).
South Africa. National Health Act 61 of 2003. https://www.gov.za/documents/
national-health-act (accessed 29 January 2023).
South Africa. Medicines and Related Substances Act 101 of 1965. https://www.gov.
za/documents/drugs-control-act-7-jul-1965-0000 (accessed 29 January 2023).