Bioconstitutional Imaginaries and the Comparative Politics of Genetic Self-knowledge

Benjamin Hurlbut (Corresponding author), Ingrid Metzler, Luca Marelli, Sheila Jasanoff

Publications: Contribution to journalArticlePeer Reviewed

Abstract

Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing.
Original languageEnglish
Pages (from-to)1087-1118
Number of pages32
JournalScience, Technology & Human Values
Volume45
Issue number6
Early online date18 May 2020
DOIs
Publication statusPublished - Nov 2020

Austrian Fields of Science 2012

  • 509017 Social studies of science

Keywords

  • bioconstitutional image
  • Social science
  • Alzheimer disease
  • PERSONAL GENOMICS
  • ALZHEIMER-DISEASE
  • politics
  • biotechnology
  • law
  • bioethics
  • MEDICINE
  • APOLIPOPROTEIN-E
  • genetics
  • bioconstitutionalism
  • power
  • RISK-ASSESSMENT
  • governance

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