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Genome editing in humans : A survey of law, regulation and governance principles

Nordberg, Ana LU orcid (2022)
Abstract
Genome editing is a powerful new tool allowing precise additions, deletions and substitutions in the genome. The development of new approaches has made editing of the genome much more precise, efficient, flexible, and less expensive, relative to previous strategies. As with other medical advances, each such application comes with its own set of benefits, risks, ethical issues and societal implications, which may require new regulatory frameworks. Important questions raised with respect to genome editing include how to balance potential benefits against the risk of unintended harms; how to govern the use of these technologies, and how to incorporate societal values into salient clinical and policy considerations. This STOA study provides an... (More)
Genome editing is a powerful new tool allowing precise additions, deletions and substitutions in the genome. The development of new approaches has made editing of the genome much more precise, efficient, flexible, and less expensive, relative to previous strategies. As with other medical advances, each such application comes with its own set of benefits, risks, ethical issues and societal implications, which may require new regulatory frameworks. Important questions raised with respect to genome editing include how to balance potential benefits against the risk of unintended harms; how to govern the use of these technologies, and how to incorporate societal values into salient clinical and policy considerations. This STOA study provides an overview of human genome editing applications and a review of the principles that guide the governance of genome editing in humans, at EU level and worldwide. The study also formulates a series of policy options targeted at basic research and to clinical applications, both somatic and germline. (Less)
Please use this url to cite or link to this publication:
author
contributor
Antunes, Luisa
organization
publishing date
type
Book/Report
publication status
published
subject
keywords
Genome editing governance, Genome editing regulation, Human enhancement, Regulation of nonmedical treatments, Human rights, Social welfare law, Mänskliga rättigheter, Socialrätt
pages
76 pages
publisher
Panel for the Future of Science and Technology (STOA), European Parliament
ISBN
978-92-846-9455-6
language
English
LU publication?
yes
id
3971eee6-b208-468c-82a3-1a4f781a10c7
alternative location
https://www.europarl.europa.eu/RegData/etudes/STUD/2022/729506/EPRS_STU(2022)729506_EN.pdf
date added to LUP
2022-06-20 11:01:33
date last changed
2024-06-10 09:33:13
@techreport{3971eee6-b208-468c-82a3-1a4f781a10c7,
  abstract     = {{Genome editing is a powerful new tool allowing precise additions, deletions and substitutions in the genome. The development of new approaches has made editing of the genome much more precise, efficient, flexible, and less expensive, relative to previous strategies. As with other medical advances, each such application comes with its own set of benefits, risks, ethical issues and societal implications, which may require new regulatory frameworks. Important questions raised with respect to genome editing include how to balance potential benefits against the risk of unintended harms; how to govern the use of these technologies, and how to incorporate societal values into salient clinical and policy considerations. This STOA study provides an overview of human genome editing applications and a review of the principles that guide the governance of genome editing in humans, at EU level and worldwide. The study also formulates a series of policy options targeted at basic research and to clinical applications, both somatic and germline.}},
  author       = {{Nordberg, Ana}},
  institution  = {{Panel for the Future of Science and Technology (STOA), European Parliament}},
  isbn         = {{978-92-846-9455-6}},
  keywords     = {{Genome editing governance; Genome editing regulation; Human enhancement; Regulation of nonmedical treatments; Human rights; Social welfare law; Mänskliga rättigheter; Socialrätt}},
  language     = {{eng}},
  title        = {{Genome editing in humans : A survey of law, regulation and governance principles}},
  url          = {{https://www.europarl.europa.eu/RegData/etudes/STUD/2022/729506/EPRS_STU(2022)729506_EN.pdf}},
  year         = {{2022}},
}