RT Article
T1 An imbalanced approach to governance? An analysis of the WHO's position on human genome editing
JF Bioethics
VO 37
IS 7
SP 656
OP 661
A1 Thaldar, Donrich
A1 Shozi, Bonginkosi
LA English
PB Wiley-Blackwell
YR 2023
UL https://www.ixtheo.de/Record/1854423789
AB In 2021, the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the ‘Committee’) published its policy recommendations. It proposes, inter alia, a set of nine values and principles to inform the governance of human genome editing (HGE) and makes recommendations regarding how HGE can be regulated. While these proposals contain valuable contributions to the discourse on the global governance of HGE, they also contain elements that call for heightened attention to the risks of the technology, and a countervailing focus on the potential benefits of the technology is missing. The Committee ostensibly prioritises restricting HGE technology in the interest of society as a collective but, in doing so, neglects to consider the interests and rights of individuals. In this article, we suggest that this approach is imbalanced insofar as it fails to give sufficient weight to the promise of this technology in considering the regulation of risks and disregards the importance of the fundamental liberties underlying the use of HGE in its discussion of values and principles that should guide governance. How this is problematic is illustrated with reference to the Committee's openness to using patents as HGE governance tools and its blanket rejection of ‘eugenics’. It is concluded that while the Committee makes some sensible recommendations on global governance, the Committee's approach of emphasising restrictions on HGE without also giving weight to the value of an open and liberal policy space is not something that liberal democratic states ought to follow.
K1 Patents
K1 Innovation
K1 human genome editing
K1 Freedom
K1 Eugenics
K1 Bioethics
DO 10.1111/bioe.13193