A decade of public engagement regarding human germline gene editing: a systematic scoping review

Following the discovery of the CRISPR-Cas technology in 2012, there has been a growing global call for public engagement regarding the potential use of human germline gene editing (HGGE). In this systematic scoping review, we aim to evaluate public engagement studies considering the following questions based on three points of attention: 1) Inclusion of underrepresented groups: who have been engaged? 2) Gathering values: what output has been reported? 3) Reaching societal impact: what objectives of public engagement have been reported? A systematic literature search from 2012 to 2023 identified 3464 articles reporting on public engagement studies regarding HGGE retrieved from 12 databases. After screening, 52 full-text articles were assessed for eligibility, resulting in 36 articles that cover 31 public engagement studies. We conclude that co-created efforts are needed to engage underrepresented groups as well as to yield values rather than acceptance levels, and to concretise how engagement might result in societal impact.

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Publication Details

Journal
European Journal of Human Genetics
Published
2024-11-28
DOI
https://doi.org/10.1038/s41431-024-01740-6
Citations
4
Primary Topic
CRISPR and Genetic Engineering
Type
article
Field-Weighted Citation Impact
0.94

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article

A decade of public engagement regarding human germline gene editing: a systematic scoping review

Lidewij Henneman, Diewertje Houtman, Sam Riedijk, Isabel R. A. Retel Helmrich et al.
4 citations
European Journal of Human Genetics
CRISPR and Genetic Engineering
0.94
article

A decade of public engagement regarding human germline gene editing: a systematic scoping review

Lidewij Henneman, Diewertje Houtman, Sam Riedijk, Isabel R. A. Retel Helmrich, Martina C. Cornel, Wendy P. Geuverink, Joosje D. Kist
article en
4 citations

Abstract

Following the discovery of the CRISPR-Cas technology in 2012, there has been a growing global call for public engagement regarding the potential use of human germline gene editing (HGGE). In this systematic scoping review, we aim to evaluate public engagement studies considering the following questions based on three points of attention: 1) Inclusion of underrepresented groups: who have been engaged? 2) Gathering values: what output has been reported? 3) Reaching societal impact: what objectives of public engagement have been reported? A systematic literature search from 2012 to 2023 identified 3464 articles reporting on public engagement studies regarding HGGE retrieved from 12 databases. After screening, 52 full-text articles were assessed for eligibility, resulting in 36 articles that cover 31 public engagement studies. We conclude that co-created efforts are needed to engage underrepresented groups as well as to yield values rather than acceptance levels, and to concretise how engagement might result in societal impact.

European Journal of Human GeneticsVol. 33(5)
Erasmus MC (NL), Amsterdam University Medical Centers (NL), Vrije Universiteit Amsterdam (NL), Erasmus University Rotterdam (NL)
Nederlandse Organisatie voor Wetenschappelijk Onderzoek
Reduced inequalities
Openalex Percentile: Top 24%
CRISPR and Genetic Engineering
0.94
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A decade of public engagement regarding human germline gene editing: a systematic scoping review — Lidewij Henneman, Diewertje Houtman, et al. · European Journal of Human Genetics (2024) | TGRS Research Map | TGRS