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Early Warning contains 29
real cases involving ethical issues in presymptomatic testing for genetic disorders;
all but six of them concern Huntingtons 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 subjects 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information in the book will be somewhat out-of-date, but the discussion of the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. Its 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
Some readers may find that the fact
that the bulk of cases concern Huntingtons 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
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
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