Ethics and Global Governance of Human Germline Genome Editing: The Problem of Techno-Scientific Colonialist Paternalism
By Gabriela Arguedas-Ramírez,
CRISPR Journal (paywall)
| 04. 21. 2020
Abstract
I want to enrich the debate about the ethics and governance of human germline editing (HGE) by emphasizing an underappreciated, yet important, set of concerns regarding exclusionary practices, norms, and efforts that impede a broader discussion about the subject. The possibility for establishing a binding, global, regulatory framework is influenced by economic and geopolitical factors as well as historical processes and sociopolitical problems, such as anti-scientific social movements and the politicization of science. Likewise, it is influenced by different understanding, epistemic resources, and goals between the CRISPR/genome editing community and the rest of society. In this Perspective, I explain the concept of “techno-scientific colonialist paternalism” and why it negatively affects our discussion around HGE. I also discuss the pitfalls of scientific self-regulation, and finally, I advocate that the implementation of HGE should cease to allow time and care for a thoughtful global discussion to emerge.
Related Articles
Flag of South Africa; design by Frederick Brownell,
image by WikimediaCommons users.
Public domain, via Wikimedia Commons
What is the legal status of heritable human genome editing (HHGE)? In 2020, a comprehensive policy analysis by Baylis, Darnovsky, Hasson, and Krahn documented that more than 70 countries and an international treaty prohibit it, and that no country explicitly permits it. Policies in some countries were non-existent, ambiguous, or subject to possible amendment, but the general rule remained, even after one...
By Tamsin Metelerkamp, Daily Maverick | 11.18.2024
The National Health Research Ethics Council (NHREC) has confirmed that heritable human genome editing (HHGE) remains illegal in South Africa, after changes in the latest version of the South African Ethics in Health Research Guidelines sparked concern among researchers that...
By Bernice Lottering, Gene Online | 11.08.2024
South Africa’s updated health-research ethics guidelines, which now include heritable human genome editing, have sparked concern among scientists. The revisions, made in May but only recently gaining attention, outline protocols for modifying genetic material in sperm, eggs, or embryos—changes that...
By Jantina de Vries, EthicsLab | 11.15.2024
The conversation around human heritable genome editing (HHGE) in South Africa is marked by controversy and conflicting interpretations of the law. At the center of this debate lies a team of lawyers based at a South African university, who have...