REVIEWED BY CAROL A. TAUER, PhD
James M. Humber and Robert F. Almeder, eds.
Humana Press, Totowa, NJ, 2001, 190 pp., $49.50 (hardcover)
This collection of essays is very timely, given current discussions of the
federal Final Rule on "Standards for Privacy of Individually Identifiable Health
Information," scheduled to be implemented by April 2003. Because the Catholic
Health Association and its members have expressed concern about various aspects
of these regulations, a volume devoted to the ethical and legal aspects of medical
privacy is welcome.
The collected essays are revisions of presentations made at a conference held
in November 1999. Completed in early 2000, the essays refer to proposed federal
regulations that were later substantially revised. For example, the Final Rule
applies to personal medical records in all forms, although the proposed regulations
applied only to electronic records. The Final Rule requires patient consent
for routine disclosures of health records, although the earlier version allowed
disclosure without consent for purposes of treatment, payment and "health care
operations." The comments of the contributors to this volume may have influenced
such changes, many of which were made in response to public comments. However,
it is unfortunate that the changes were not noted in the various essays where
pertinent, at least in footnotes.
The book does include an updated postscript provided by one of the editors.
It presents not only a concise summary of the Final Rule but also an interpretive
commentary. If readers are not to be misled by now-obsolete statements in some
of the other essays, they must compare them with this postscript.
The essays themselves cover a wide range of topics related to medical privacy.
Charity Scott's essay, "Is Too Much Privacy Bad for Your Health?" is a superb
overview of the law and ethics of medical privacy. It is clear, balanced, and
accurate (bearing in mind that Scott was working with the proposed rather than
final federal privacy rules).
David Korn's discussion of medical privacy in relation to research is also
an outstanding contribution. Presumably speaking on behalf of his organization,
the Association of American Medical Colleges, he points out the pitfalls of
too much privacy protection, including the possibility that such protection
could hamper research. Korn takes strong advocacy positions that could be debated.
For example, after tracing historically how medical research has relied on patient
archives, both records and stored tissue samples, he argues that because we
have all been beneficiaries of this research, we are obligated to make a similar
contribution of our personal medical information for future research. Here he
invokes the ethical principle of justice.
The most deeply philosophic contribution is Patrick Boleyn-Fitzgerald's argument
that the ethical principle of equality, rather than the principle of autonomy,
is the basis for protecting medical privacy. Although Boleyn-Fitzgerald offers
interesting examples to bolster his case, his line of argument is unconvincing.
For example, he notes that the autonomy of employers or insurers seeking a patient's
medical information is in ethical conflict with the autonomy of the patient
who wants to keep it private. Because the principle of autonomy seems to support
both claims, he argues that autonomy cannot be the justification for protecting
patient privacy. But surely my autonomy with regard to controlling my own medical
information has a different moral status from that of a person or organization
wishing to have access to my information, for whatever purpose.
In actuality, Boleyn-Fitzgerald's defense of equality as the basic ethical
principle is really a defense based on nonmaleficence (do not harm). For he
concludes: "Respecting privacy contributes to a safe space for patients. A patient
need not worry that seeing a doctor will result in harm to their personal relationships,
a loss of insurance, or denial of a career opportunity" (p. 65, emphasis added).
Both Korn's and Boleyn-Fitzgerald's essays raise questions that need to be
responded to. The volume as a whole would be stronger if the various authors
had engaged each other's ideas more directly. While Korn advocates placing fewer
restrictions on the use of medical data, and Bill Allen and Ray Moseley propose
more restrictions, Korn's discussion focuses on the context of medical research,
whereas Allen and Moseley are concerned about the privacy of genetic tests in
relation to health insurance. Hence these two essays do not really engage each
other.
Similarly, authors take positions on such debatable topics as whether genetic
information should be protected more stringently than other medical information,
and what should be the relationship between federal and state privacy laws (i.e.,
whether federal laws should preempt state laws). But the debate on these topics
is not really engaged by the authors, and their arguments seem to miss each
other.
No one except the editor, in his postscript, addresses the interesting issue
of the penalties for violation of laws and regulations on medical privacy. From
the perspective of a health care organization, the penalties imposed may seem
very onerous. Yet as the editor notes, they are not nearly severe enough to
deter truly malicious or criminal invasions of medical records by hackers, for
example. This aspect of the federal regulations has been overlooked by most
commentators, including the other authors in this book.
The volume has several helpful features to assist the reader. Each essay is
preceded by a carefully written abstract of the essay. Thus the reader can use
the abstracts to decide which essays to read in their entirety. The index is
detailed and helpful. The postscript on the Final Rule, added in view of significant
changes that were made to the proposed regulations, is crucial to understanding
the current state of affairs in federal privacy regulation, as well as to understanding
the other essays in the book.
Carol A. Tauer, PhD
Senior Scholar
Minnesota Center for
Health Care Ethics
Minneapolis