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@umdnj.edu).
The July 2002 Health Policy and Ethics Forum on ethics in publichealth research and practice addresses a number of thorny issuesfacing public health institutions. One of the mostfundamental issues confronting public health workers is theproblem of protecting confidentiality in public health activities.This problem raises the question of what is and what is notresearch in the public health arena. The "Notes on the individualethical principles" of the Public Health Code of Ethics acknowledgethat the code "begs the question of which information needsto be protected." The code also fails to address the criticalquestion of who is to decide and how.
The need for public accountability for protecting confidentialityand privacy in the public health arena is not addressed. Thecode and the forum fail to deal with the potentially conflictinggoals of protecting health in the community and protecting individualrights to privacy. This omission is comparable to physicians’failing to recognize the difference between trying a provendrug in a specific patient and participating in drug trials.In failing to acknowledge the conflict of interest, the publichealth community mirrors the failure of clinical investigatorsto see their conflicts of interest. The omission is particularlysurprising because the importance of legal oversight of institutionalreview boards (IRBs) is examined, but the role of IRBs in publichealth institutions is not.
To protect participants in human research studies from conflictsof interest and other biases, IRBs have been created to overseethe design and execution of human research projects. The argumentthat public health activities are not research because theyare not "designed" to develop "generalizable knowledge" doesnot abrogate the obligation of the public health community toprotect privacy.7 The methods used to protect private informationshould be transparent. Loss of confidentiality is often themajor risk to participants in public health activities thatmay not be designated as research. In this day of ubiquitouscomputers and increasing genomic analysis, the possibility ofthe misuse of private information is far greater than in the past.4 We might do well to remember that eugenics was once heldto be a civic duty by some public health advocates.
The solution may lie in establishing IRB oversight for all publichealth activities, those deemed nonresearch as well as thosedesignated research. All such activities present the potentialfor 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.
7. Wedeen RP. Consent in epidemiology: implications of history for public policy. Arch Environ Health. 2000;55:231–239.