Privacy and policy for genetic research

  • DeCew J
  • 3

    Readers

    Mendeley users who have this article in their library.
  • N/A

    Citations

    Citations of this article.

Abstract

I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research: (1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research. © 2004 Kluwer Academic Publishers. Printed in the Netherlands.

Author-supplied keywords

  • Dynamic negotiation
  • Genetic data
  • Medical records
  • Privacy
  • Public policy

Get free article suggestions today

Mendeley saves you time finding and organizing research

Sign up here
Already have an account ?Sign in

Find this document

Authors

  • J W DeCew

Cite this document

Choose a citation style from the tabs below

Save time finding and organizing research with Mendeley

Sign up for free