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7.2 Decision-Making: Overview
Genetic counseling patients are often confronted with a number of decisions (e.g.,
whether to undergo testing, whether to continue or terminate a pregnancy when test-
ing reveals a genetic condition, whether to have further/any children, who to tell and
what to tell them, whether and when to undergo predictive testing, and whether to
participate in related research). “Facilitating patient decision-making is a critical
component of the genetic counseling process. Many decisions are complex, multi-
tiered, time constrained, and emotionally demanding. They may have lifelong con-
sequences and affect people beyond the immediate patient(s)” (Zanko and Fox
2010 , p. 31).
Thus far in this chapter, we have discussed two key activities that facilitate
decision- making: providing information and risk communication. When patients
are presented with options for managing this information and risk, genetic counsel-
ors use their skills to support patients by facilitating their decision-making. Two
specific competencies related to facilitating patient decision-making are included in
the Accreditation Council for Genetic Counseling (ACGC) Practice-Based
Competencies: “Use a range of genetic counseling skills and models to facilitate
informed decision-making and adaptation to genetic risks or conditions” and
“Promote client-centered, informed, noncoercive and value-based decision- making”
(ACGC 2015 , p. 4; Appendix A).
“Decision-making is a complex process, especially in a domain like genetic test-
ing, which must take numerous considerations into account” (Siani and Assaraf
2016 , p. 1093). Often patients must make multiple short-term and long-term deci-
sions. For instance, women with BRCA mutations “...identified multiple decisions
to be made when living with and acting upon hereditary breast and ovarian cancer
risk. These decisions were more than just having surgery or surveillance and
included complex factors related to the person, family, procedure, and healthcare
system. Emotional, physical, and social consequences of these decisions, both
actual and potential, were important to the decision-making process and require on-
going, long-term support by health care professionals” (Underhill and Crotser 2014 ,
p. 359). You can promote good decision-making when you provide relevant infor-
mation, recognize factors that are pertinent to patient decision-making processes
and outcomes, and “introduce different perspectives as appropriate, and thoroughly
explore clients’ values and choices with them” (White 1997, p. 305).
Medical Recommendations: Shared Decision-Making
As mentioned previously, and discussed further in Chap. 10 , because genetic coun-
seling is a medically based practice, in some situations a genetic counselor will be
involved in facilitating patient decision-making about management/treatment
7 Providing Information and Facilitating Patient Decision-Making