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40 Jurimetrics 21 (1999-2000)
Genetic Privacy and the Law: An End to Genetics Exceptionalism

handle is hein.journals/juraba40 and id is 33 raw text is: GENETIC PRIVACY AND THE LAW:
AN END TO GENETICS EXCEPTIONALISM
Lawrence 0. Gostin
James G. Hodge, Jr.*
ABSTRACT: While the proliferation of human genetic information promises to achieve
many public benefits, the acquisition, use, retention, and disclosure of genetic data
threatens individual liberties. States (and to a lesser degree, the federal government) have
responded to the anticipated and actual threats of privacy invasion and discrimination by
enacting several types of genetic-specific legislation. These laws emphasize the differences
between genetic information and other health information. By articulating these
differences, governments afford genetic data an exceptional status.
The authors argue that genetic exceptionalism is flawed for two reasons: (1) strict
protections of autonomy, privacy, and equal treatment of persons with genetic conditions
threaten the accomplishment of public goods; and (2) there is no clear demarcation
separating genetic data from other health data; other health data deserve protections in a
national health information infrastructure. The authors present ideas for individual privacy
*Lawrence 0. Gostin is Professor of Law, Georgetown University Law Center; Professor of
Public Health, Johns Hopkins University School of Hygiene and Public Health; Co-Director,
Georgetown/Johns Hopkins Program on Law and Public Health. James G, Hodge is Adjunct Professor
of Law, Georgetown University Law Center; Associate Professor, Johns Hopkins School of Hygiene
and Public Health; Fellow, Greenwall Fellowship Program in Bioethics and Health Policy.
The work presented in this article is supported by a grant from the National Institutes of Health
for a three-year project entitled Genetics Legislation: Syntax, Science, and Policy. This project, in
cooperation with the National Conference of State Legislatures (NCSL), is designed to assist state and
federal legislators in their attempts to regulate genetic information. The authors also acknowledge
their appreciation for assistance from the Centers for Disease Control and Prevention which has
provided expertise and financial support toward the development of the Model State Public Health
Privacy Act upon which some of the privacy-related recommendations are based. The authors are
grateful to Lisa M. Matovcik, Lance A. Gable, Mark Lowry, Aimee Doyle, and Bradley Malin for
their research assistance.

FALL 1999

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