Book Review

Boundaries of Privacy: Dialectics of Disclosure

N Engl J Med 2003; 348:1505-1506April 10, 2003

Article

Boundaries of Privacy: Dialectics of Disclosure
(SUNY Series in Communication Studies.) By Sandra Petronio. 268 pp. Albany, State University of New York Press, 2002. $81.50 (cloth); $27.95 (paper). ISBN: 0-7914-5515-7 (cloth); 0-7914-5516-5 (paper).

Privacy is one of the hot new issues in medical practice today. With the federal medical privacy regulations authorized by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) poised to go into effect on April 14, 2003, physicians, other health care professionals, and administrators cannot avoid paying attention to patients' medical privacy. And given that the HIPAA regulations will result in substantial changes in the handling of medical information, this is not a bad time to be thinking about the foundations of privacy in health care and in other areas of our lives.

Physicians need not undertake this task on their own. The study of privacy is a multidisciplinary enterprise involving participation by philosophers, legal scholars, political scientists, and experts in the relatively new field of communication. Sandra Petronio, author of Boundaries of Privacy, falls into this last category; she teaches in the Department of Communication — and also in the School of Medicine — at Wayne State University in Detroit. Here, she presents an elaborated version of her theory of “communication privacy management,” which, judging from the reference list, has attracted no small number of acolytes in her field.

What can we glean from the work of Petronio and other theorists of communication that might be of use in thinking about privacy in health care? Without pretending to encapsulate her entire complex theory, we can extract a few key conclusions. First, as persons and members of groups, we all actively construct our own rules about what information we will disclose and to whom. The nature of those rules may be affected by a number of variables, including cultural expectations, our sex, the specific context, and the risk–benefit calculus for the revealing of information. Although the rules are often implicit — we may not be able to articulate why we give or withhold certain information in a particular setting — our behavior is by no means random.

Second, privacy boundaries are often negotiated. The best example is probably the readjustment of boundaries as two people begin a relationship that grows in intimacy and evolves into a marriage. But similar negotiations, again not always explicit, occur in physician–patient relationships. Patients rely on their cultural expectations and the degree of trust they feel to determine what to reveal to their doctors, and physicians themselves decide how much personal information to share with the people for whom they care. Finally, when boundaries are not clearly defined or the parties to a relationship differ in their privacy rules, turbulence results. Anger, termination of a relationship, or withholding of additional information may ensue.

Application of these concepts to the impending changes in the regulation of medical privacy (although the author does not take them in this direction) leads to some interesting predictions. Since the new rules allow medical information to be shared for many purposes without the patient's consent (unless there is a state law to the contrary), people seeking medical care may feel deprived of the control over privacy boundaries that they have come to expect. The resulting turbulence could affect patients' willingness to disclose information and their relationships with physicians. But the flexibility allowed by the rules for physicians and patients to negotiate higher levels of protection for some or all revealed information (e.g., “We agree that we will not release anything from your chart without your written consent”) may allow patients to regain some sense of control over their privacy boundaries. We will know soon enough whether these predictions are borne out.

Boundaries of Privacy is not a book you will want to curl up with in front of the fireplace. Like much work in social science today, the writing is mired in jargon and the theory is unnecessarily complex. But there is real value in physicians' being aware of what other disciplines are thinking about issues that affect the delivery of medical care, and we have something to learn from communications theory about the ways we protect — or fail to protect — the information that our patients convey.

Paul S. Appelbaum, M.D.
University of Massachusetts Medical School, Worcester, MA 01655