TY - JOUR
T1 - Imperatives of governance
T2 - human genome editing and the problem of progress
AU - Hurlbut, J. Benjamin
N1 - Funding Information: School of Life Sciences,Arizona State University,Tempe,AZ 85287. Email: [email protected]. This publication was made possible in part through the support of a grant from Templeton Religion Trust. The opinions expressed in this publication are those of the author and do not necessarily reflect the views of Templeton Religion Trust. Publisher Copyright: © 2020 by Johns Hopkins University Press.
PY - 2020/12/1
Y1 - 2020/12/1
N2 - 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.
AB - 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.
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U2 - 10.1353/pbm.2020.0013
DO - 10.1353/pbm.2020.0013
M3 - Article
C2 - 32063595
SN - 0031-5982
VL - 63
SP - 177
EP - 194
JO - Perspectives in Biology and Medicine
JF - Perspectives in Biology and Medicine
IS - 1
ER -