Imperatives of governance: human genome editing and the problem of progress

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4 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)177-194
Number of pages18
JournalPerspectives in Biology and Medicine
Volume63
Issue number1
DOIs
StatePublished - Dec 1 2020

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy
  • History and Philosophy of Science

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