Abstract
How gene editing technologies should be regulated and whether Human Germline Genome Editing (HGGE) should become lawful remain very divisive questions in the legal, political and bioethical fields. At the same time, there is universal agreement that any changes in legislation should be preceded, or accompanied, by broad public deliberation. What does, however, a truly broad societal debate on HGGE regulation actually entail? In this paper, we focus on this issue and articulate a specific understanding of broadness for societal debates on the regulation of technological developments. We then apply it to the context of HGGE and show that a truly broad societal debate on its regulation would require reflecting: (1) on the significance of public preferences regarding genetically-related children for law and policy; and (2) on the potential of HGGE as a tool for global disease burden reduction. We conclude by outlining the implications for policymakers and further research.
| Original language | English |
|---|---|
| Pages (from-to) | 687-714 |
| Journal | Law, Innovation and Technology |
| Volume | 16 |
| Issue number | 2 |
| DOIs | |
| Publication status | Published - 2024 |
| Externally published | Yes |
Bibliographical note
Publisher Copyright:© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Funding
Part of the work of the author is conducted as part of PRESAGE, a consortium project funded by the NWO (Dutch Research Council), one of the most important public science funding bodies in the Netherlands (file number NWA.1389.20.075). The funder had no role in the drafting of this manuscript and the views expressed therein are those of the author and not those of the funder. The author would like to thank Professor Britta van Beers for their discussions together related to the topic and for providing feedback on preliminary versions of the article.
| Funders | Funder number |
|---|---|
| Nederlandse Organisatie voor Wetenschappelijk Onderzoek | NWA.1389.20.075 |
Keywords
- Human germline genome editing
- law and policy
- normative analysis
- public engagement
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