The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene Editing

Shaw, David

doi:10.1007/s11673-019-09953-x

Cited by 9 publications

(4 citation statements)

References 2 publications

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“…The consent form was not approved by an institutional review board, either. Finally, staff members without specific training took only 120 min to explain the experiment to participants (Greely, 2019 ; Jonlin, 2020 ; Kirksey, 2020 ; Shaw, 2020 ).…”

Section: An Epic Scientific Misadventurementioning

confidence: 99%

Addressing Conflicts of Interest and Conflicts of Commitment in Public Advocacy and Policy Making on CRISPR/Cas-Based Human Genome Editing

Christian

2022

Front. Res. Metr. Anal.

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Leading experts on CRISPR/Cas-based genome editing—such as 2020 Nobel laureates Jennifer Doudna and Emmanuelle Charpentier—are not only renowned specialists in their fields, but also public advocates for upcoming regulatory frameworks on CRISPR/Cas. These frameworks will affect large portions of biomedical research on human genome editing. In advocating for particular ways of handling the risks and prospects of this technology, high-profile scientists not only serve as scientific experts, but also as moral advisers. The majority of them currently intend to bring about a “responsible pathway” toward human genome interventions in clinical therapy. Engaging in advocacy for such a pathway, they issue moral judgments on the risks and benefits of this new technology. They declare that there actually is a responsible pathway, they draft resolutions on temporary moratoria, they make judgments on which groups and individuals are credible and should participate in public and semi-public debates, so they also set the standards for deciding who counts as well-informed, as well as the standards of evidence for adopting or rejecting research policies. This degree of influence on public debates and policy making is, at the very least, noteworthy. This contribution sounds a note of caution with regard to the endeavor of a responsible pathway to human genome editing and in particular scrutinizes the legitimacy of expert-driven research policies given commercial conflicts of interest and conflicts of commitment among first-rank scholars.

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Section: An Epic Scientific Misadventurementioning

confidence: 99%

Addressing Conflicts of Interest and Conflicts of Commitment in Public Advocacy and Policy Making on CRISPR/Cas-Based Human Genome Editing

Christian

2022

Front. Res. Metr. Anal.

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“…These factors call into question the voluntary nature of the consent. Moreover, article 3 of the consent form mentions the risk of the editing procedure missing its target, and that there are different detection methods to minimize the possibility of causing significant harm 11 . However, the project team did not properly take account of the risk of missing the target because neither the significance of off-target events nor their possible consequences were addressed in the consent form 10 .…”

Section: Clinical Regulatory and Societal Conditionsmentioning

confidence: 99%

Making sense of it all: Ethical reflections on the conditions surrounding the first genome-edited babies

Chen

Labude

et al. 2021

Wellcome Open Res

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In November 2018 the birth of the first genome-edited human beings was announced by Chinese scientist, He Jiankui. The ensuing ethical controversy, institutional investigations and legal proceedings led to the revision of standards, rules and procedures at many levels. Arguably, however, these developments have not fundamentally changed the conditions or the culture that nourished He Jiankui’s vaulting ambition in the first place and enabled it to find expression. In this paper we explore the clinical, regulatory and societal circumstances of the ‘gene-edited baby’ case, the political, cultural and economic conditions that created a radical and dangerous climate for biotechnology innovation, and the responsibilities of the international research community, many of whose members were apprised of Dr He’s intentions. The aim is not to heap anathemas on the heads of implicated individuals but to draw attention to the need for different communities (researchers, authorities and domestic publics) to play a part actively in the governance of biomedical innovation and for research to be bridled by human values.

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“…The former results in genetic changes that are passed on to future generations and is currently prohibited to clinical researchers [21,96]. In 2019, the World Health Organization recommended against any clinical research on human germline editing until all technical and ethical considerations have been properly vetted and this policy is unlikely to change in the foreseeable future [97][98][99].…”

Section: Expert Opinionmentioning

confidence: 99%

Harnessing the potential of CRISPR-based platforms to advance the field of hospital medicine

McCarthy

2020

Expert Review of Anti-infective Therapy

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The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene Editing

Cited by 9 publications

References 2 publications

Addressing Conflicts of Interest and Conflicts of Commitment in Public Advocacy and Policy Making on CRISPR/Cas-Based Human Genome Editing

Addressing Conflicts of Interest and Conflicts of Commitment in Public Advocacy and Policy Making on CRISPR/Cas-Based Human Genome Editing

Making sense of it all: Ethical reflections on the conditions surrounding the first genome-edited babies

Harnessing the potential of CRISPR-based platforms to advance the field of hospital medicine

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