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Privacy and Policy for Genetic Research

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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.

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References

  • ACM Policy '98, Renaissance Hotel, Washington D.C., May 10-12, 1998.

  • A. Barnard. Doctors Brace for Changes in Privacy. The Boston Globe, January 11: A1, A10 & A11, 2003.

  • R.C. Barrows, Jr. and P.D. Clayton. Privacy, Confidentiality, and Electronic Medical Records. Journal of the American Medical Informatics Association 3(2): 1996.

  • T. Beauchamp and J. Childress. Principles of Biomedical Ethics, 3rd ed. Oxford University Press, New York, 1989.

    Google Scholar 

  • C. Bennett. Regulating Privacy: Data Protection and Public Policy in Europe and the United States. Cornell University Press, Ithaca, 1992.

    Google Scholar 

  • C. Culver, J. Moor, W. Duerfeldt, M. Kapp, and M. Sullivan. Privacy. Professional Ethics, 3 (3&4): 4–25, 1994.

    Google Scholar 

  • J.W. DeCew. In Pursuit of Privacy: Law, Ethics, and the Rise of Technology. Cornell University Press, Ithaca, 1997.

    Google Scholar 

  • J.W. DeCew. Alternatives for Protecting Privacy While Respecting Patient Care and Public Health Needs. Ethics and Information Technology, 1(4): 249–255, 1999.

    Google Scholar 

  • J.W. DeCew. The Priority of Privacy for Medical Information. Social Philosophy and Policy, 17(2): 213–234, 2000.

    Google Scholar 

  • D.E. Detmer and E.B. Steen, Shoring Up Protection of Personal Health Data. Issues in Science and Technology, 76, 1996.

  • J. Eilperin. New Rules Planned on Health Privacy. The Boston Globe, December 20: A3, 2000.

  • J. Foreman. Your Health History-up for Grabs?. The Boston Globe, July 20: C1, 1998.

  • C. Franklin, editor. Business Guide to Privacy and Data Protection Legislation. Kluwer Law International, Dordrecht, 1996.

    Google Scholar 

  • R. Gavison. Privacy and the Limits of Law. 89 Yale Law Journal, 421: 1980.

  • L.O. Gostin. Health Information Privacy. 80 Cornell Law Review 101: 104, 1995.

  • L.O. Gostin Making Tradeoffs Between the Collective Good of Human Health and the Individual Good of Personal Privacy, presented at an international conference, ''Electronic Patient Records in Medical Practice,'' Rotterdam, The Netherlands, October 6, 1998.

    Google Scholar 

  • B. Ladine. Medical Privacy Rules are Relaxed. The Boston Globe. August 10: A1 and A5, 2002.

  • J. Markoff. Europe's Plans to Protect Privacy Worry Business, New York Times, April 11: A1, 1991.

  • R.E. Mitchell and J.W. DeCew. Dynamic Negotiation in the Privacy Wars. Technology Review 97(8): 70–71, 1994.

    Google Scholar 

  • J. Moor. The Ethics of Privacy Protection. Library Trends 39 (1&2): 69–82, 1990.

    Google Scholar 

  • J. Moor. Towards a Theory of Privacy in the Information Age. Computers and Society, September: 27-32, 1997.

  • R. Pear. Bush Acts to Drop Core Privacy Rule on Medical Data. The New York Times, March 22: A1 and A22, 2002.

  • L. Richwine. Privacy Laws for Patients Don't Extend to Internet. The Boston Globe, November 11: 2001.

  • M. Rigby, I. Hamilton, and R. Draper. Finding Ethical Principles and Practical Guidelines for the Controlled Flow of Patient Data, Presented at an International Conference, Electronic Patient Records in Medical Practice. Rotterdam, The Netherlands, October 7, 1998a.

    Google Scholar 

  • M. Rigby, I. Hamilton and R. Draper. Towards an Ethical Protocol in Mental Health Informatics. In B. Cesnick, A.T. McCray, J.-R. Scherrer, editor, MedInfo '98: Proceedings of the 9th World Congress on Medical Informatics, pp. 1223–1227. Amsterdam, IOS Press, 1998b.

    Google Scholar 

  • P.M. Schwartz. European Data Protection Law and Restrictions on International Data Flows, 80 Iowa Law Review 471: 1995.

    Google Scholar 

  • L. Tye. EC May Force New Look at Privacy, Boston Globe, September 7: 10, 1993.

  • A. Westin et al. Health Care Information Privacy: A Survey of the Public and Leaders. 23 (1993).

  • B. Woodward. Intrusion in the Name of 'Simplification. The Washington Post, August 15, 1996; Medical identifier hearings to begin, The Boston Globe, July 20: A5, 1998.

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Authors and Affiliations

  1. Department of Philosophy, Clark University, 950 Main Street, Worcester, MA, 01610, USA;

    Judith Wagner DeCew

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  1. Judith Wagner DeCew
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DeCew, J.W. Privacy and Policy for Genetic Research. Ethics and Information Technology 6, 5–14 (2004). https://doi.org/10.1023/B:ETIN.0000036155.29288.f9

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  • DOI: https://doi.org/10.1023/B:ETIN.0000036155.29288.f9

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