36313.3.1 Respect for Patient Autonomy
This principle, which focuses on the patient’s right to self-governance, has been a
guiding value in health care since the late 1960s and early 1970s. Enhancing patient
autonomy is a major goal of genetic counseling. The NSGC Code of Ethics
(Appendix B) says that genetic counselors “enable their clients to make informed
independent decisions, free of coercion, by providing or illuminating the necessary
facts and clarifying the alternatives and anticipated consequences.” Patient auton-
omy is also a major tenet of the Reciprocal-Engagement Model of genetic counsel-
ing, specifically, “patient autonomy must be supported” (McCarthy Veach et al.
2007 , p. 719). As discussed in Chap. 10 , the term “nondirective” that was histori-
cally used to describe the strategy by which genetic counselors enhanced patient
autonomy is problematic; it is more appropriate to consider the skills genetic coun-
selors employ to protect patient autonomy.
Bartels et al. ( 1997 ) investigated counselor descriptions of directive behaviors
and found a distinction between directing the process and directing the outcome of
genetic counseling. Process refers to conducting a genetic counseling session in
ways that benefit the patients you see. For instance, you are responsible for orient-
ing the patient to the session (describing the format, outlining the purpose, etc.). You
also may need to help patients clarify the meaning of genetic information in their
lives and help them identify their own values and decision strategies.
Directing the outcome means you influence a patient to act in concert with your
values. This kind of influence violates the spirit of respecting the patient’s right to
self-governance. In a situation where you believe you must tell a patient what to do,
for example, whether to have predictive testing for a late-onset disorder, you must
carefully consider your reasons for taking this step. You might ask whether you are
responding to the patient’s needs/values or to your own needs/values. Situations
where you direct the outcome should be the exception and not the rule in your coun-
seling practice. As noted in Chap. 10 , however, it is crucial to differentiate between
clinical information and recommendations and other types of advice or influencing
responses in genetic counseling. Patients who see genetic counselors usually expect
the counselor to have clinical expertise that could be helpful to them.
Genetic counselors committed to protecting patient autonomy sometimes ques-
tion whether they must always do what the patient prefers and whether they must
sacrifice their own values in the name of enhancing patient autonomy. The answer
to those questions is “no.” As a professional, you also have an obligation to abide by
your professional and personal values. Being clear about your own values and moti-
vations, as well as patient motivations, can help clarify where value conflicts may
occur. The NSGC Code of Ethics (Appendix B) indicates that genetic counselors
may “refer clients to an alternate genetic counselor or other qualified professional
when situations arise in which a genetic counselor’s personal values, attitudes and
beliefs may impede his or her ability to counsel a client.” This may be an appropri-
ate response in situations where you believe that providing assistance to a patient
13.3 Guiding Ethical Principles for Health Professionals