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Related Topics
Early WarningReview - Early Warning
Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases
by David H. Smith, Kimberly A. Quaid, Roger B, Dworkin, Gregory P. Gramelspacher, Judith A. Granbois, and Gail H. Vance
Indiana University Press, 1998
Review by Christian Perring, Ph.D.
Dec 3rd 2002 (Volume 6, Issue 49)

Early Warning contains 29 real cases involving ethical issues in presymptomatic testing for genetic disorders; all but six of them concern Huntington’s Disease.  Of course, identifying information is removed or altered to preserve the anonymity of the patients.  The cases are put into four main groups:

·        cases where the testing of one person will result in information a family member does not want to know

·        cases where people do not want to know about their own risk for genetic disorders

·        cases where testing decisions concerning one individual could have benefits or dangers for other people

·        cases of testing children and adults where the test may be inappropriate or the subject’s ability to consent is compromised.

The cases contain some technical discussion of genetic diseases and testing information, but the book explains the relevant details and should be accessible to a fairly general readership.  There is a glossary of technical terms at the end of the book.  The authors do not start out with any particular moral approach, but rather use a case-by-case method, making no strong distinction between clear thinking and moral theory.  They certainly write in the tradition of American medical ethics that respects the autonomy of competent subjects, but they also write from the perspective of clinicians immersed in the realities of everyday practice.  The authors do not always agree on how to proceed in each case, and their disagreements are explained in the case discussions.  The case studies vary in detail, from a short paragraph to two pages, and the subsequent discussion varies in length from two to four pages.  The book ends with a length set of guidelines extrapolated from the case analyses, and which include commentary that refers to the cases in the main portion of the book. 

Since the world of genetic medicine is progressing so rapidly, it is inevitable that some of the medical information in the book will be somewhat out-of-date, but the discussion of the ethical issues should be useful to clinicians, patients, and students of genetic ethics.  The discussion of cases is sensible and thoughtful, and normally covers most of the issues that need to be included.  Often the best way to approach difficult cases is with an open mind and an ability to find creative solutions.  When faced with extremely tough choices, one can also learn from such cases to create new policies for a testing and counseling facility to avoid facing such difficult decisions in the future.  It’s invaluable for ethicists to work through the details of real cases, and even if readers do not always agree with the recommendations of the authors, they will learn from the cases. 

Some readers may find that the fact that the bulk of cases concern Huntington’s Disease makes the discussion somewhat less useful if they are more concerned with other disorders such as some forms of cancer, for example.  The book may also disappoint someone looking for simple answers to difficult questions, because even with the list of guidelines at the end of the book, it is still largely a matter of judgment when it comes to applying the guidelines to real cases.  Nevertheless, this collection of cases probably provides the most thorough and thoughtful available discussion of the ethical issues arising in presymptomatic genetic testing.  It will be very useful as a resource to anyone teaching a course in genetic ethics.

 

© 2002 Christian Perring. All rights reserved.

Christian Perring, Ph.D., is Chair of the Philosophy Department at Dowling College, Long Island. He is editor of Metapsychology Online Review. His main research is on philosophical issues in psychiatry. He is especially interested in exploring how philosophers can play a greater role in public life, and he is keen to help foster communication between philosophers, mental health professionals, and the general public.


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