Future of global regulation of human genome editing: a South African perspective on the WHO Draft Governance Framework on Human Genome Editing

Shozi, Bonginkosi; Kamwendo, Tamanda; Kinderlerer, Julian; Thaldar, Donrich; Townsend, Beverley; Botes, Marietjie

doi:10.1136/medethics-2020-106863

Cited by 8 publications

(3 citation statements)

References 17 publications

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“… 385 Moreover, gene editing has unpredictable heritable effects on individuals and offspring, carries the risk of altering the human gene pool, and may lead to artificial and uncontrollable genetic contamination. 490 , 491 The World Health Organization has established an “Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing.” 492 It raises ethical issues in several areas concerning the application of gene editing to human genome editing through the Regulatory Framework for Human Gene Editing and the Human Gene Editing Recommendations, which aim to constrain the safe and ethical use of human gene editing in all countries. 493 , 494 Many countries have enacted laws and regulations governing the research and application of gene editing.…”

Section: Discussionmentioning

confidence: 99%

CRISPR technology in human diseases

Feng,

Li,

Zhou

et al. 2024

MedComm

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Gene editing is a growing gene engineering technique that allows accurate editing of a broad spectrum of gene‐regulated diseases to achieve curative treatment and also has the potential to be used as an adjunct to the conventional treatment of diseases. Gene editing technology, mainly based on clustered regularly interspaced palindromic repeats (CRISPR)–CRISPR‐associated protein systems, which is capable of generating genetic modifications in somatic cells, provides a promising new strategy for gene therapy for a wide range of human diseases. Currently, gene editing technology shows great application prospects in a variety of human diseases, not only in therapeutic potential but also in the construction of animal models of human diseases. This paper describes the application of gene editing technology in hematological diseases, solid tumors, immune disorders, ophthalmological diseases, and metabolic diseases; focuses on the therapeutic strategies of gene editing technology in sickle cell disease; provides an overview of the role of gene editing technology in the construction of animal models of human diseases; and discusses the limitations of gene editing technology in the treatment of diseases, which is intended to provide an important reference for the applications of gene editing technology in the human disease.

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Section: Discussionmentioning

confidence: 99%

CRISPR technology in human diseases

Feng,

Li,

Zhou

et al. 2024

MedComm

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“…They challenge the Eurocentric orientation of ethical frameworks that center the individual and the concerns of the present, by drawing on an interpretation of the African philosophical concept of Ubuntu, an ethic that articulates moral duties to community members, present and future. They conclude that this ethic explains participants' support for entitling future generations to equal access to HHGE as a healthcare service and propose active government intervention in support of this aim (Shozi and Thaldar 2023). Afolabi and Sodeke and Nyamnjoh and Ewuoso (both this issue) extend the discussion by pointing to a plurality of facets of the Ubuntu philosophy and scholarly debate, which create the expectation that range of conclusions could follow region-specific, public discourses about HGGE (Afolabi and Sodeke 2023; Nyamnjoh and Ewuoso).…”

Section: This Special Issue Of Thementioning

confidence: 98%

Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research

Dolan¹,

Cho²,

Lee³

2023

Preprint

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This paper introduces a special issue of the American Journal of Bioethics focused on work presented at the 5th ELSI Congress: Innovating for a Just and Equitable Future. We call for ELSI scholars to tackle the difficult moral and empirical questions about what it means to represent the fullness of “the public”, how their engagement should be facilitated, and how we should interpret and apply their recommendations to maximally enhance equity and justice.

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“…The case against using the views of a majority group in a representative sample as a baseline for governance is reinforced when viewing HHGE through the paradigm of human rights. As scholars have pointed out, the extent to which several potential applications of HHGE touch on widely recognised fundamental rights and freedoms means that in liberal democracies, the opinions of a majority (or even all) of society would not be a legitimate basis upon which the exercise of these rights and freedoms can be limited [ 6 , 15 , 29 , 30 ]. What may, however, provide a democratically legitimate basis for limitation, are policies based on deliberative engagement aimed at obtaining the well-informed, considered opinions of members of a community, which are expressions of the values of that country.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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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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Future of global regulation of human genome editing: a South African perspective on the WHO Draft Governance Framework on Human Genome Editing

Cited by 8 publications

References 17 publications

CRISPR technology in human diseases

CRISPR technology in human diseases

Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research

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

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