Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges

Hurlbut, J. Benjamin; Jasanoff, Sheila; Saha, Krishanu; Ahmed, Aziza; Appiah, Anthony; Bartholet, Elizabeth; Βaylis, Françoise; Bennett, Gaymon; Church, George M.; Cohen, I. Glenn; Daley, George Q.; Finneran, Kevin; Hurlbut, William B.; Jaenisch, Rudolf; Lwoff, Laurence; Kimes, John Paul; Mills, Peter; Moses, Jacob; Park, Buhm Soon; Parens, Erik; Salzman, Rachel; Saxena, Abha; Simmet, Hilton; Simoncelli, Tania; Snead, O. Carter; Rajan, Kaushik Sunder; Truog, Robert D.; Williams, Patricia; Woopen, Christiane

doi:10.1016/j.tibtech.2018.04.009

Cited by 27 publications

(11 citation statements)

References 2 publications

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“…Societal con sensus on germline editing is something that must be judged by national authorities, just as governments make political judgements about their citizens' views on other complex social issues. A useful approach to consider is the proposed Global Genome Editing Obser vatory 9,13,14 , a network of organizations and individuals to track developments and facili tate public conversations, both within nations and across cultures.…”

Section: The Commitmentsmentioning

confidence: 99%

Adopt a moratorium on heritable genome editing

Lander¹,

Βaylis²,

Zhang³

et al. 2019

Nature

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Section: The Commitmentsmentioning

confidence: 99%

Adopt a moratorium on heritable genome editing

Lander¹,

Βaylis²,

Zhang³

et al. 2019

Nature

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348

205

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“…Robust public engagement must also be global and inclusive, involving a range of publics whose voices have, to date, been overlooked or minimized [8]. While scientists' contributions are important, their voices should not dominate; social values and implications must be at the center.…”

Section: Fostering Public Empowermentmentioning

confidence: 99%

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction

Andorno

Βaylis

Darnovsky³

et al. 2020

Trends in Biotechnology

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governance in the EU, realize the subsidiarity principle as strengthened by the Lisbon Treaty ii , and focus on regulating issues where there is consensus across the EU. Therefore, we propose that the EC initiates an investigation of this model. The approach towards coexistence policies in the EU may serve as an example.In the third of our articles [14], we present certain reform details regarding the postauthorization requirements as well as discuss the current political landscape in the EU and whether any regulatory reform is currently feasible. Author ContributionsD.E. took the initiative and prepared the first draft of the manuscript. All other co-authors each contributed a section to the manuscript and were involved in finalizing the manuscript.

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“…It thereby marginalizes deliberation about what concepts of human integrity, well-being, and progress should guide the development of biotechnology. Instead, it makes specific, fetishized technologies like CRISPR the exclusive focus of reactive ethical debate (Hurlbut 2018).…”

Section: The Unthinkable Has Become Conceivablementioning

confidence: 99%

Imperatives of Governance: Human Genome Editing and the Problem of Progress

Hurlbut¹

2020

Perspectives in Biology and Medicine

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The ability to make direct genetic changes to the DNA of future children poses profound challenges for governance. Over the last several years, efforts to establish frameworks of ethical deliberation and governance for human genome editing have focused largely on technical criteria for proceeding with research and rules and mechanisms for regulating it. Less attention has been given to the question of who decides, and on the basis of what authority. The power to decide is exercised not only in giving answers to ethical questions or suppling policy advice, but in designating what questions should (and should not) be asked in the first place. The ways problems are framed and terms of collective debate are set is a crucial element of governance. This essay examines how certain framings that have dominated in influential arenas of deliberation about human germline genome editing underwrite (false) imperatives of governance. These imperatives have shaped not only ethical deliberation and governance agendas, but the trajectory of science itself. The essay focuses in particular upon the case of He Jiankui, arguing that his project is not an aberration, but, rather, an expression of ideas about science, ethics, and progress that are widely shared within the scientific community.T he ability to make direct genetic changes to the DNA of future children poses profound challenges for governance: should it be done? For what

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Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges

Cited by 27 publications

References 2 publications

Adopt a moratorium on heritable genome editing

Adopt a moratorium on heritable genome editing

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction

Imperatives of Governance: Human Genome Editing and the Problem of Progress

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