4.3 Article

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

Journal

JOURNAL OF MEDICAL ETHICS
Volume 48, Issue 3, Pages 165-168

Publisher

BMJ PUBLISHING GROUP
DOI: 10.1136/medethics-2020-106863

Keywords

genetic engineering; autonomy; human dignity; law; genethics

Funding

  1. National Research Foundation of South Africa [116275]
  2. African Health Research Flagship of the University of KwaZulu-Natal

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While WHO has established the Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing and published a Draft Governance Framework, there are four key areas of concern that need to be addressed: ensuring safety and efficacy, balancing global standard setting with state sovereignty, understanding varying conceptualizations of human dignity, and clarifying the meaning of harm to the interests of a future person. Addressing these concerns may lead to a promising future for the global governance of human genome editing.
WHO in 2019 established the Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, which has recently published a Draft Governance Framework on Human Genome Editing. Although the Draft Framework is a good point of departure, there are four areas of concern: first, it does not sufficiently address issues related to establishing safety and efficacy. Second, issues that are a source of tension between global standard setting and state sovereignty need to be addressed in a more nuanced fashion. Third, it fails to meaningfully engage with the extent to which the conceptualisation of human dignity may justifiably vary between jurisdictions. Fourth, the meaning of harm to the interests of a future person requires clarity. Provided these four areas of concern can be addressed, the future of the global governance of human genome editing may hold promise.

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