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for a given situation” (Section I:1) and “Enable their clients to make informed deci-
sions, free of coercion, by providing or illuminating the necessary facts, and clarify-
ing the alternatives and anticipated consequences” (Section II:4).
This chapter focuses on skills associated with these key competencies. It is
important to recognize that while the information (content) of any genetic counsel-
ing interaction will vary depending on the indication or focus of the session and may
change over time, the skills genetic counselors employ in providing information and
facilitating decisions are transferrable across all situations and specialty practice
areas and remain constant over time.
7.1.6 Communicating Risk Information
Information giving involves the genetic counselor providing data, facts, and details
in an attempt to help patients be as fully informed as possible about their genetic
diagnosis and/or risks, including the psychosocial and related medical implications
and recommendations, testing options, and potential outcomes. This can be a daunt-
ing task. In many situations, you will have to provide complicated and/or ambigu-
ous information about topics such as uncertain risks, sensitivity and specificity of
tests, and variable phenotypes (Austin 2010 ; Facio et al. 2014 ; O’Doherty and
Suthers 2007 ).
To emphasize that the skills employed in providing information are transferable
and do not change over time, we note the following statement by Yager ( 2014 ).
Citing Kessler’s ( 1997 ) seminal work on teaching versus counseling models of
genetic counseling, Yager says the information genetic counselors provide “...needs
to be accurate, current, and expressed in a way that is understandable to patients
who may have no medical or scientific background. The information-giving (teach-
ing) part of genetic counseling is a complex and difficult task in that it not only
requires a depth of knowledge but also a high level of interpersonal skill (e.g., read-
ing a patient’s nonverbal confusion after an attempted explanation or recognizing
that sometimes a carefully placed question may reveal what the patient is not under-
standing)” (p. 935).
The types of information you present during genetic counseling sessions can be
broadly categorized as: (1) information that sets the agenda and describes what to
expect during the session; (2) information pertinent to patients’ reasons for seeking
genetic counseling (e.g., genetic risk, testing options, testing results, disease informa-
tion, support services); (3) information that facilitates patients’ decision-making pro-
cesses (e.g., options, outcomes); and (4) follow-up information about what will happen
after the session (e.g., support resources, medical recommendations, referrals).
Although patients vary in their information needs, they generally desire rele-
vant medical and genetic information communicated in a way that conveys care,
concern, and empathy as well as support in communicating this information to
others. Yet, individual differences (e.g., gender, education, age, known or unknown
mutation in family, affected or not affected) and cultural differences will influence
7 Providing Information and Facilitating Patient Decision-Making