Literature DB >> 35281674

Toward Anticipatory Governance of Human Genome Editing: A Critical Review of Scholarly Governance Discourse.

John P Nelson1, Cynthia L Selin2, Christopher T Scott3.   

Abstract

The rapid development of human genome editing (HGE) techniques evokes an urgent need for forward-looking deliberation regarding the aims, processes, and governance of research. The framework of anticipatory governance (AG) may serve this need. This article reviews scholarly discourse about HGE through an AG lens, aiming to identify gaps in discussion and practice and suggest how AG efforts may fill them. Discourse on HGE has insufficiently reckoned with the institutional and systemic contexts, inputs, and implications of HGE work, to the detriment of its ability to prepare for a variety of possible futures and pursue socially desirable ones. More broadly framed and inclusive efforts in foresight and public engagement, focused not only upon the in-principle permissibility of HGE activities but upon the contexts of such work, may permit improved identification of public values relevant to HGE and of actions by which researchers, funders, policymakers, and publics may promote them.

Entities:  

Keywords:  CRISPR; human genome editing; participatory governance; public engagement; responsible innovation; technology foresight

Year:  2021        PMID: 35281674      PMCID: PMC8916747          DOI: 10.1080/23299460.2021.1957579

Source DB:  PubMed          Journal:  J Responsible Innov        ISSN: 2329-9037


  78 in total

1.  No closure in sight for the 10/90 health-research gap.

Authors:  S Ramsay
Journal:  Lancet       Date:  2001-10-20       Impact factor: 79.321

2.  Participating despite questions: toward a more confident participatory technology assessment : commentary on: "Questioning 'participation': a critical appraisal of its conceptualization in a Flemish participatory technology assessment".

Authors:  David H Guston
Journal:  Sci Eng Ethics       Date:  2011-10-11       Impact factor: 3.525

3.  CRISPR/Cas9 and Germline Modification: New Difficulties in Obtaining Informed Consent.

Authors:  Joanna Smolenski
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

4.  Global notes: the 10/90 gap disparities in global health research.

Authors:  D Vidyasagar
Journal:  J Perinatol       Date:  2006-01-01       Impact factor: 2.521

Review 5.  Public engagement as a means of restoring public trust in science--hitting the notes, but missing the music?

Authors:  Brian Wynne
Journal:  Community Genet       Date:  2006

6.  Don't edit the human germ line.

Authors:  Edward Lanphier; Fyodor Urnov; Sarah Ehlen Haecker; Michael Werner; Joanna Smolenski
Journal:  Nature       Date:  2015-03-26       Impact factor: 49.962

7.  Compelling Reasons for Repairing Human Germlines.

Authors:  George Church
Journal:  N Engl J Med       Date:  2017-11-16       Impact factor: 91.245

8.  Highly efficient endogenous human gene correction using designed zinc-finger nucleases.

Authors:  Fyodor D Urnov; Jeffrey C Miller; Ya-Li Lee; Christian M Beausejour; Jeremy M Rock; Sheldon Augustus; Andrew C Jamieson; Matthew H Porteus; Philip D Gregory; Michael C Holmes
Journal:  Nature       Date:  2005-04-03       Impact factor: 49.962

9.  Heritable Genome Editing: Who Speaks for "Future" Children?

Authors:  Bartha Maria Knoppers; Erika Kleiderman
Journal:  CRISPR J       Date:  2019-10

10.  Human Embryo Editing: Opportunities and Importance of Transnational Cooperation.

Authors:  Duanqing Pei; David W Beier; Ephrat Levy-Lahad; Gary Marchant; Janet Rossant; Juan Carlos Izpisua Belmonte; Robin Lovell-Badge; Rudolf Jaenisch; Alta Charo; David Baltimore
Journal:  Cell Stem Cell       Date:  2017-10-05       Impact factor: 24.633

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