TY - JOUR
T1 - Bioconstitutional Imaginaries and the Comparative Politics of Genetic Self-knowledge
AU - Hurlbut, J. Benjamin
AU - Metzler, Ingrid
AU - Marelli, Luca
AU - Jasanoff, Sheila
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors gratefully acknowledge support from the following organizations: National Science Foundation Award No. 1058762, Brocher Foundation, Greenwall Foundation, the Faraday Institute at the University of Cambridge, and the European Union's Horizon 2020 research and innovation program.
Funding Information:
We would like to thank Maggie Curnutte for essential research contributions to earlier versions of this paper and Giuseppe Testa for subsequent revisions. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors gratefully acknowledge support from the following organizations: National Science Foundation Award No. 1058762, Brocher Foundation, Greenwall Foundation, the Faraday Institute at the University of Cambridge, and the European Union's Horizon 2020 research and innovation program.
Publisher Copyright:
© The Author(s) 2020.
PY - 2020/11/1
Y1 - 2020/11/1
N2 - 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.
AB - 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.
KW - bioconstitutionalism
KW - bioethics
KW - biotechnology
KW - genetics
KW - governance
KW - law
KW - politics
KW - power
UR - http://www.scopus.com/inward/record.url?scp=85085498843&partnerID=8YFLogxK
U2 - 10.1177/0162243920921246
DO - 10.1177/0162243920921246
M3 - Journal article
AN - SCOPUS:85085498843
SN - 0162-2439
VL - 45
SP - 1087
EP - 1118
JO - Science Technology and Human Values
JF - Science Technology and Human Values
IS - 6
ER -