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LETTER |
Correspondence: Requests for reprints should be sent to Richard P. Wedeen, MD, Department of Veterans Affairs New Jersey Health Care System, 385 Tremont Ave, East Orange, NJ 07018-1095 (e-mail: wedeen{at}umdnj.edu).
The July 2002 Health Policy and Ethics Forum on ethics in public health research and practice addresses a number of thorny issues facing public health institutions.1–5 One of the most fundamental issues confronting public health workers is the problem of protecting confidentiality in public health activities. This problem raises the question of what is and what is not research in the public health arena. The "Notes on the individual ethical principles" of the Public Health Code of Ethics acknowledge that the code "begs the question of which information needs to be protected."6 The code also fails to address the critical question of who is to decide and how.
The need for public accountability for protecting confidentiality and privacy in the public health arena is not addressed. The code and the forum fail to deal with the potentially conflicting goals of protecting health in the community and protecting individual rights to privacy. This omission is comparable to physicians’ failing to recognize the difference between trying a proven drug in a specific patient and participating in drug trials. In failing to acknowledge the conflict of interest, the public health community mirrors the failure of clinical investigators to see their conflicts of interest. The omission is particularly surprising because the importance of legal oversight of institutional review boards (IRBs) is examined, but the role of IRBs in public health institutions is not.1
To protect participants in human research studies from conflicts of interest and other biases, IRBs have been created to oversee the design and execution of human research projects. The argument that public health activities are not research because they are not "designed" to develop "generalizable knowledge" does not abrogate the obligation of the public health community to protect privacy.7 The methods used to protect private information should be transparent. Loss of confidentiality is often the major risk to participants in public health activities that may not be designated as research. In this day of ubiquitous computers and increasing genomic analysis, the possibility of the misuse of private information is far greater than in the past.4 We might do well to remember that eugenics was once held to be a civic duty by some public health advocates.
The solution may lie in establishing IRB oversight for all public health activities, those deemed nonresearch as well as those designated research. All such activities present the potential for loss of confidentiality.
References
1. Putney SB, Gruskin S. Time, place, and consciousness: three dimensions of meaning for US institutional review boards. Am J Public Health. 2002;92:1067–1070.
2. Glantz LH. Nontherapeutic research with children: Grimes v Kennedy Krieger Institute. Am J Public Health.2002;92:1070–1073.
3. Mastroianni AC, Kahn JP. Risk and responsibility: ethics, Grimes v Kennedy Krieger, and public health research involving children. Am J Public Health. 2002;92:1073–1076.
4. Pang T. The impact of genomics on global health. Am J Public Health. 2002;92:1077–1079.
5. London L. Ethical oversight of public health research: can rules and IRBs make a difference in developing countries? Am J Public Health. 2002;92:1079–1084.
6. American Public Health Association. Public Health Code of Ethics. Available at: http://www.apha.org/codeofethics/ethics.htm. Accessed October 9, 2002.
7. Wedeen RP. Consent in epidemiology: implications of history for public policy. Arch Environ Health. 2000;55:231–239.[Medline]
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