193- Family values: the nature of family members’ values and the ways in which they
express them can either be a support or a stress (Cura 2015 ); sense of relational
responsibility or moral obligation to other family members (Manuel and Brunger
2014 ). - Patient motivation: factors affecting patient desire and ability to make a decision
such as intelligence, education level, stress levels, willingness to participate in
genetic counseling, and need for scientific information (Pivetti and Melotti 2013 ). - Patient values: personal attitudes and values about one’s options (e.g., contracep-
tion, having a normal child, etc.) as well as about taking personal responsibility
for the decision, attitudes about medical personnel and concern for others’ feel-
ings (Cura 2015 ), attitudes toward genetic testing and pregnancy termination
(Pivetti and Melotti 2013 ; Siani and Assaraf 2016 ), and attitudes toward child-
bearing (Chan et al. 2017 ). Awwad et al. ( 2008 ) recommended “When faced with
a decision regarding an affected pregnancy, assess the patient’s personal, reli-
gious, and cultural beliefs regarding pregnancy termination. Is termination ever
permissible? For what reasons? Within what time frame?” (p. 114). - Patient emotions: for instance, regarding reproductive decisions, couples may
encounter “difficulties during the decision-making process...[experience] doubts
about the decision they made...[feel unable] to make a decision...[and experi-
ence] guilt, especially those couples who had an affected sibling” (Frets et al.
1992, p. 25). - Ambiguity/uncertainty: about, for instance, what a particular diagnosis would
mean for the health and functioning of an affected child (e.g., What is it like to
care for a child with muscular dystrophy?). - Burden: associated with the need to make a decision (e.g., a patient might feel
pressured to make a decision about testing to benefit another family member). - Patient personality: affects how the patient approaches decision-making, for
example, compulsively, fearfully, dependently, etc. - Counselor constraints: what the counselor is able and willing to provide, legal
considerations, rules, and policies, and counselor training and values (e.g., offer-
ing predictive testing to minors). - Reproductive decisions: factors may include recurrence risk, desire to have a
child, availability of prenatal diagnosis, coping skills, impact of the disorder,
family factors (e.g., finances, other resources), diagnosis, norms and values, and
reproductive alternatives (Van Spijker 1992).
Multiple studies in genetic counseling have identified additional factors that
impact patient decision-making. Dean and Rauscher ( 2017 ) explored how women
with BRCA mutations but who have not been diagnosed with cancer (previvors)
make decisions. They found BRCA mutation previvors used both logical and emo-
tional decision-making styles when making decisions about preventative surgery
and when to have children. “Logical decision-making prioritized decreasing their
personal risk of HBOC and thus undergoing preventative surgery over having any
7.2 Decision-Making: Overview