Book Review

Privacy and Health Care

N Engl J Med 2001; 345:844September 13, 2001

Article

Privacy and Health Care
(Biomedical Ethics Reviews.) Edited by James M. Humber and Robert F. Almeder. 190 pp. Totowa, N.J., Humana, 2001. $44.50. ISBN: 0-89603-878-5

Medical privacy is a core ethical principle of the health professions, and it is considered to be essential by much of the public. Yet medical privacy has proved to be an elusive concept that has engendered disagreement over its definition, dispute over its importance relative to other interests, and endless political debate over the appropriate way to protect it.

Contemporary concern about medical privacy may be attributed to various sources. First, the ability of computers to compile and transmit vast amounts of information instantly has aroused concern about safeguarding the confidentiality of computerized records of all sorts, including medical records. Second, the commercial value of medical information and the exploitation of such information by marketers has raised suspicions that someone's medical record may be used when the primary motivation is not the health of that person. Third, because medical records may contain sensitive information, such as the results of genetic tests, mental health reports, and human immunodeficiency virus status, wrongful disclosure of medical information could lead to embarrassment, stigmatization, or discrimination.

Despite numerous attempts, Congress has been unable to enact medical-privacy legislation. When it enacted the federal Health Insurance Portability and Accountability Act of 1996, Congress gave itself until August 1999 to enact privacy legislation and, if it failed to do so, directed the Department of Health and Human Services to issue privacy regulations. After Congress failed to meet its self-imposed deadline, the Department of Health and Human Services issued detailed privacy regulations, which are scheduled to take effect in April 2003. These regulations, however, are extremely contentious, and it is likely that there will be an ongoing process of review and amendment up to and perhaps even after the date when the rules take effect.

Because the details of any regulatory scheme involving medical privacy are so difficult to resolve, it is essential that in crafting any law or policy there is a clear sense of the basic principles at stake. Unfortunately, too often even fundamental notions of the goals and acceptable costs of privacy protection have been neither articulated nor examined. The new book Privacy and Health Care helps to provide a context for this ongoing debate. The relatively brief collection of seven essays explores such issues as the ethical principles underlying privacy, privacy and medical research, and privacy and health insurance. The authors represent the fields of law, medicine, bioethics, philosophy, and consumer advocacy; the editors are professors at Georgia State University in Atlanta.

The chapters are somewhat uneven, both in length and in depth of analysis. The timing of publication is also unfortunate, since most of the chapters were written when it was not clear whether or when the privacy regulations of the Health Insurance Portability and Accountability Act would be issued. This problem is ameliorated somewhat by a postscript describing, in general terms, some of the key features of the regulations.

Despite these shortcomings, the book contains some important insights. The first chapter — entitled “Is Too Much Privacy Bad for Your Health?”— is by Georgia State law professor Charity Scott. Professor Scott clearly and astutely explores the many tradeoffs between medical privacy and other interests. She explains that privacy operates in a reciprocal way with other important values; for instance, more stringent medical-privacy rules reduce our ability to use medical records for public health, medical research, quality assurance in health care, and law enforcement. Scott reminds us that before we can strike the appropriate balance between privacy and other interests, we need to recognize what interests are at stake and the costs and benefits of various levels of protection of medical privacy.

A key aspect of the debate on medical privacy remains unexplored by this book and virtually all writing on the subject. What is commonly referred to as medical privacy is more accurately termed medical security, because the focus is on preventing unauthorized access to personal medical information. Although preventing unauthorized disclosure of medical information to third parties is important, it is also essential to prevent third parties without a need to know from gaining authorized access to personal medical information. Employers, insurers, and other third parties with economic leverage over the person can simply make the signing of a general medical release a condition of employment, insurance, or other transactions. Such practices are almost always lawful. True medical privacy will not be possible until policy makers resolve the even more difficult and contentious issue of compelled disclosure.

Mark A. Rothstein, J.D.
University of Louisville School of Medicine, Louisville, KY 40202

Citing Articles (1)

Citing Articles

1. 1

   Jian Xiao, Jing Liu. (2009) Thermo-fluidic devices and materials inspired from mass and energy transport phenomena in biological system. Frontiers of Energy and Power Engineering in China 3:1, 47-59
   CrossRef