Evidence map›Paper›PMID 38720104›Full record

ArticleJournal of community genetics2024

The need to set explicit goals for human germline gene editing public dialogues.

Wendy P Geuverink, Diewertje Houtman, Isabel R A Retel Helmrich, Sophie van Baalen, Britta C van Beers, Carla G van El, Lidewij Henneman, Michelle D Kasprzak, Danielle Arets, Sam R Riedijk and 1 more

Abstract read
In one paragraph

Article in Journal of community genetics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Wendy P GeuverinkDepartment of Human Genetics, Amsterdam UMC, Location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID https://orcid.org/0000-0003-0383-6711
Diewertje Houtman *Erasmus Medical Center, Department of Clinical Genetics, Rotterdam, the Netherlands.ORCID https://orcid.org/0000-0003-0661-6466
Isabel R A Retel Helmrich *Erasmus Medical Center, Department of Clinical Genetics, Rotterdam, the Netherlands.ORCID https://orcid.org/0000-0001-5257-395X
Sophie van BaalenRathenau Institute, The Hague, the Netherlands.ORCID https://orcid.org/0000-0002-1592-3276
Britta C van BeersFaculty of Law, Department of Legal Philosophy, Vrije Universiteit, Amsterdam, the Netherlands.ORCID https://orcid.org/0000-0002-4766-1709
Carla G van ElDepartment of Human Genetics, Amsterdam UMC, Location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID https://orcid.org/0000-0003-2201-2320
Lidewij HennemanDepartment of Human Genetics, Amsterdam UMC, Location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID https://orcid.org/0000-0003-3531-0597
Michelle D KasprzakWillem de Kooning Academy, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands.ORCID https://orcid.org/0000-0002-9755-6077
Danielle AretsReadership Journalism & Innovation, Fontys University of Applied Sciences, Tilburg, the Netherlands.ORCID https://orcid.org/0000-0001-8553-528X
Sam R RiedijkErasmus Medical Center, Department of Clinical Genetics, Rotterdam, the Netherlands. s.riedijk@erasmusmc.nl.ORCID https://orcid.org/0000-0003-3400-4969
‘De DNA dialogen’ consortium

Funding

Nederlandse Organisatie voor Wetenschappelijk Onderzoek NWO NWA.1389.20.075
6 · The paper itself

Abstract

Given the potentially large ethical and societal implications of human germline gene editing (HGGE) the urgent need for public and stakeholder engagement (PSE) has been repeatedly expressed. However, the explicit goals of such PSE efforts often remain poorly defined. In this program report, we outline the goals of our Dutch project called De DNA dialogen (The DNA dialogues). We believe that setting explicit goals in advance is essential to enable meaningful PSE efforts. Moreover, it enables the evaluation of our engagement efforts. The following four goals, which result from intensive consultations among the transdisciplinary projects' consortium members and based on the literature, form the foundation for how we will engage the public and stakeholders in deliberation about HGGE: 1) Enable publics and stakeholders to deliberate on "what if" questions, before considering "whether" and "how" questions regarding HGGE, 2) Investigate agreement and disagreement in values and beliefs regarding HGGE in order to agree and disagree more precisely, 3) Involve diverse publics with various perspectives, with a focus on those that are typically underrepresented in PSE, 4) Enable societally aligned policy making by providing policymakers, health care professionals and legal experts insight into how values are weighed and ascribed meaning in the context of HGGE by various publics, and how these values relate to the principles of democratic rule of law and fundamental rights. The effort to describe our goals in detail may serve as an example and can inform future initiatives striving for open science and open governance in the context of PSE.

Indexed as

Human Germline Gene EditingOpen SciencePublic EngagementSocietal Alignment

Identifiers

PMID38720104
PMCPMC11217238

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.