Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling
![handle is hein.journals/stanlp6 and id is 245 raw text is: Patient Autonomy and Value-
Neutrality in Nondirective Genetic
Counseling
by
Robert Wachbroit &
David Wasserman
In the cc
In recent years, medical
scientists have identified a large genetic cc
number of genetic mutations asso- value-n
ciated with disease. This research
has focused on a broad range of i
disorders, from rare conditions like
Huntington's disease to certain impo,
forms of breast and colon cancer.
With the use of genetic testing,
mutations linked to such diseases are now or will soon be
detectable long before the appearance of any symptoms.'
Often, these tests are used to detect mutations in germ cells
andfetuses-mutations associatedwith disease in the patient's
offspring, or potential offspring, as well as in the patient
herself. The proliferation of genetic tests, and their signifi-
cance for individuals beyond the patient tested, have in-
creased the importance of genetic counseling-the effort to
enable patients to understand and respond appropriately to
Robert Wachbroit, Ph.D. and David Wasserman, J.D. are Re-
search Scholars at the Institute for Philosophy and Public Policy
at the School of Public Affairs, at the University of Maryland.
Research for this paper was supported by a grant from the Na-
tional Institutes of Health Center for Human Genome Research.
ntext of
unseling,
'utrality
;sible.
genetic test results and diagnoses.
Despite some occa-
sional dissents, the standard view
ofgenetic counseling is thatitmust
be nondirective. Yet there has
been a great deal of confusion
over what nondirective means.
Seymour Kessler, a leading writer
on genetic counseling, observes:
[t]he terms directiveness and nondirectiveness have
been part of the lexicon of genetic counseling for many
decades. Yet one has little confidence that a consensus exists
about the meaning given to these terms.'2
One reason for the lack of consensus, we will argue,
is that two distinct concerns fall under the rubric of
nondirectiveness-value-neutrality and respect for patient
autonomy. Much of the literature on genetic counseling does
not regard these concerns as independent. The Institute of
Medicine's (IOM) report on Assessing Genetic Risks, for
example, asserts that [the commitment to nondirectiveness
in genetic counseling arises from respect for the patient's
autonomy in decision making.3 The Report urges coun-
selors to suppress the expression of the values and biases
VOLUME 6:2 1995
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Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling
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