From Asilomar to Genome Editing: Research Ethics and Models of Decision

Rufo, Fabrizio; Ficorilli, Antonella

doi:10.1007/s11569-019-00356-1

Cited by 5 publications

(2 citation statements)

References 21 publications

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“…A great deal of discussion surrounds ‘soft law’ and the culture of researchers and among policymakers (Marchant & Allenby, 2017 ). Within the biotechnology field, there is some momentum towards encouraging a research culture that is ‘non-hierarchical’ and draws extensively on public consultation (Rufo & Ficorilli, 2019 ). As we have noted, the current governance of AI is spearheaded, and even carried out, by individual industry initiatives for creating guidelines.…”

Section: Discussionmentioning

confidence: 99%

Global policymakers and catastrophic risk

Nathan

Hyams

2021

Policy Sci

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There is a rapidly developing literature on risks that threaten the whole of humanity, or a large part of it. Discussion is increasingly turning to how such risks can be governed. This paper arises from a study of those involved the governance of risks from emerging technologies, examining the perceptions of global catastrophic risk within the relevant global policymaking community. Those who took part were either civil servants working for the UK government, U.S. Congress, the United Nations, and the European Commission, or cognate members of civil society groups and the private sector. Analysis of interviews identified four major themes: Scepticism; Realism; Influence; and Governance outside of Government. These themes provide evidence for the value of conceptualising the governance of global catastrophic risk as a unified challenge. Furthermore, they highlight the range of agents involved in governance of emerging technology and give reason to value reforms carried out sub-nationally.

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Section: Discussionmentioning

confidence: 99%

Global policymakers and catastrophic risk

Nathan

Hyams

2021

Policy Sci

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“…By the time the CRISPR-Cas9 technique became available, the question of genetic modification of living organisms had already been discussed for more than 3 decades. Following the first study by Thomas and Capecchi in 1987, where recombinant DNA could be transferred as a tool to mammalian cells, the first international conference in 1975 led to the creation of the Recombinant Advisory Committee (RAC) to discuss ethical and societal issues related to the application of this new biotechnology tool ( Hurlbut et al, 2015 ; Rufo and Ficorilli, 2019 ). Subsequent landmark events where genetic engineering was applied to humans, such as the first clinical introduction of retrovirus in gene-modified cells by Rosenberg in 1989 ( Hanna et al, 2017 ), the death of Jesse Gelsinger in 1999 after gene therapy intervention to treat a metabolic disorder ( Caplan, 2019 ), and the death of X-SCID patients in a gene therapy trial in 2002 ( Couzin and Kaiser, 2005 ), were reflected in public distrust and a delay in the development of gene therapy over the first decade of the 21st century.…”

Section: Introductionmentioning

confidence: 99%

What do people think about genetic engineering? A systematic review of questionnaire surveys before and after the introduction of CRISPR

Ramos,

Almeida,

Olsson

2023

Front. Genome Ed.

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The advent of CRISPR-Cas9 in 2012 started revolutionizing the field of genetics by broadening the access to a method for precise modification of the human genome. It also brought renewed attention to the ethical issues of genetic modification and the societal acceptance of technology for this purpose. So far, many surveys assessing public attitudes toward genetic modification have been conducted worldwide. Here, we present the results of a systematic review of primary publications of surveys addressing public attitudes toward genetic modification as well as the awareness and knowledge about the technology required for genetic modification. A total of 53 primary publications (1987–2020) focusing on applications in humans and non-human animals were identified, covering countries in four continents. Of the 53 studies, 30 studies from until and including 2012 (pre-CRISPR) address gene therapy in humans and genetic modification of animals for food production and biomedical research. The remaining 23 studies from after 2013 (CRISPR) address gene editing in humans and animals. Across countries, respondents see gene therapy for disease treatment or prevention in humans as desirable and highly acceptable, whereas enhancement is generally met with opposition. When the study distinguishes between somatic and germline applications, somatic gene editing is generally accepted, whereas germline applications are met with ambivalence. The purpose of the application is also important for assessing attitudes toward genetically modified animals: modification in food production is much less accepted than for biomedical application in pre-CRISPR studies. A relationship between knowledge/awareness and attitude toward genetic modification is often present. A critical appraisal of methodology quality in the primary publications with regards to sampling and questionnaire design, development, and administration shows that there is considerable scope for improvement in the reporting of methodological detail. Lack of information is more common in earlier studies, which probably reflects the changing practice in the field.

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Personalized Medicine and Research Biobanking: From Traditional to New Informed Consent Generating a Need for Participatory Governance

Ficorilli¹

2022

Personalized Medicine in the Making

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From Asilomar to Genome Editing: Research Ethics and Models of Decision

Cited by 5 publications

References 21 publications

Global policymakers and catastrophic risk

Global policymakers and catastrophic risk

What do people think about genetic engineering? A systematic review of questionnaire surveys before and after the introduction of CRISPR

Personalized Medicine and Research Biobanking: From Traditional to New Informed Consent Generating a Need for Participatory Governance

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