Public Goods, Private Data: HIV and the History, Ethics, and Uses of Identifiable Public Health Information

PUBLIC HEALTH REPORTS, Vol. 122, pp. 7 - 15, Supplement 1, 2007

Wayne State University Law School Research Paper No. 09-14

11 Pages Posted: 18 Jun 2009

See all articles by Amy L. Fairchild

Amy L. Fairchild

Columbia University - Mailman School of Public Health

Lance Gable

Wayne State University Law School

Lawrence O. Gostin

Georgetown University - Law Center - O'Neill Institute for National and Global Health Law

Ronald Bayer

Columbia University - Mailman School of Public Health

Patricia Sweeney

affiliation not provided to SSRN

Rob Janssen

affiliation not provided to SSRN

Abstract

Public health departments collect a vast array of identifiable information in the course of mandatory reporting efforts and other surveillance activities. These undertakings span a range of conditions from infectious threats and chronic diseases including cancer, to immunization status and birth defects. This article examines key ethical questions regarding the uses of public health data and establishes a code of restraint for using identifiable data to achieve affirmative public health duties. The code of restraint suggests that: 1) The failure to use data for public health purposes, including research and direct interventions, must be justified; 2) Strict norms of privacy and confidentiality must govern the sharing of data and de-identified or anonymized data must be used whenever possible; 3) Releases must be done in a manner that minimizes and fairly distributes possible burdens resulting from them; 4) When releasing de-identified datasets, care must be taken to insure that individuals are unidentifiable; 5) Alternative pathways must be exhausted before it is justifiable to release an individual’s identifiable information; and 6) Only under exceptional circumstances is it acceptable to use identifiable public health information for non-health ends.

Suggested Citation

Fairchild, Amy L. and Gable, Lance and Gostin, Lawrence O. and Bayer, Ronald and Sweeney, Patricia and Janssen, Rob, Public Goods, Private Data: HIV and the History, Ethics, and Uses of Identifiable Public Health Information. PUBLIC HEALTH REPORTS, Vol. 122, pp. 7 - 15, Supplement 1, 2007, Wayne State University Law School Research Paper No. 09-14, Available at SSRN: https://ssrn.com/abstract=1421899

Amy L. Fairchild

Columbia University - Mailman School of Public Health ( email )

Center for the History and Ethics of Public Health
600 West 168th St., 6th Floor
New York, NY 10032
United States

Lance Gable (Contact Author)

Wayne State University Law School ( email )

471 Palmer
Detroit, MI 48202
United States

Lawrence O. Gostin

Georgetown University - Law Center - O'Neill Institute for National and Global Health Law ( email )

600 New Jersey Avenue, NW
Washington, DC 20001
United States
202-662-9038 (Phone)
202-662-9055 (Fax)

Ronald Bayer

Columbia University - Mailman School of Public Health ( email )

Center for the History and Ethics of Public Health
600 West 168th St., 6th Floor
New York, NY 10032
United States

Patricia Sweeney

affiliation not provided to SSRN

Rob Janssen

affiliation not provided to SSRN

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