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decisions in the course of their lives without our help” (p. 383). In most situations,
genetic counselors should employ their skills to facilitate patient decision-making,
as discussed in Chap. 7 , rather than offer specific “advice.”
10.1.3 Advice Topics in Genetic Counseling
As mentioned in the introduction to this chapter, clinical recommendations (e.g.,
standards of care, management guidelines, etc.) are an appropriate and necessary
component of genetic counseling. Other aspects of genetic counseling where advice
may be particularly appropriate include (1) the genetic counseling process (e.g., “To
help you come to a decision that works for you, I suggest that we talk through each
of the different options”) and (2) patient behavior (e.g., “Perhaps you should take a
couple of days to think this over”; or “You might benefit from talking to some of the
other parents in the local muscular dystrophy support group”). Genetic counseling,
however, rarely involves telling a patient what decision to make (e.g., “I think having
additional children might not be the best decision for you under the circumstances”;
or “In light of your family history, you should definitely have carrier screening”).
Patients may seek guidance and advice from genetic counselors about other
issues related to genetic counseling or testing, such as strategies for disclosing test
results to their relatives. Certain patient populations may be particularly desirous of
advice. Two studies demonstrate that some parents desire advice about communi-
cating with their children. Mac Dougall et al. ( 2007 ) interviewed couples who had
used assisted reproductive technology to conceive, asking them about the timing
and manner of their disclosure of this information to their child. Parents either
endorsed early disclosure with subsequent conversations or waiting for the “right
time” in the child’s development. The parents who endorsed the “right time”
approach reported uncertainty about how to share the information and about the
outcome of the conversation, and they expressed a desire for more advice in that
regard. Dennis et al. ( 2015 ) surveyed parents as well as individuals affected with a
sex chromosome aneuploidy. They asked about the timing and content of parents’
disclosure of that information to the affected child, resources parents used to pre-
pare for the communication, parents’ feelings of preparedness and their concerns,
and recommendations for how to approach communicating with one’s child. Like
Mac Dougall et al. ( 2007 ), they found “parents utilizing the ‘right-time’ strategy
reported greater feelings of uncertainty about the disclosure process and outcome,
and expressed a desire for guidance or advice” (p. 90). The results of these investi-
gations illustrate individual differences in parents’ desire for advice, supporting the
need to tailor your approach to each patient/family.
Patenaude and Schneider ( 2017 ) describe the major types of questions parents
have about disclosing the results of their hereditary cancer testing to their children
and conclude that “While psycho-educational aids can remind counselors of rele-
vant topics to discuss with parents and can offer parents broad guidance about what
children of different ages may be concerned about, families differ in so many ways
10 Providing Guidance: Advice andfiInfluencing Skills