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- Believe genetic counseling is essentially the same thing as psychotherapy, and
therefore it may involve extensive probing into their innermost experiences and
motivations. - Have unrealistic expectations about what genetic counseling can offer and become
resistant upon realizing their expectations cannot be met (e.g., the counselor can-
not guarantee a healthy baby). In a study of informed consent for genomic sequenc-
ing, a genetic counselor described this interaction with a patient who had unrealistic
expectations of the testing: “I felt like I needed to absolutely pour cold water on
her in the sense that no matter what was stated, she overstated it...And she was just
so far over the top with her own desires for information and I was having a lot of
trouble getting her to hear what was being said and that this was not being prom-
ised and that we could not figure all this out” (Tomlinson et al. 2016 , p. 66). - View the genetic counselor’s goals as different from their own (e.g., a patient who
believes the counselor’s agenda is to persuade her to have presymptomatic testing
when she does not wish to do so). Kaimal et al. ( 2007 ) found that some parents
resist pursuing testing for their child’s hearing loss because of cultural differences
in perceptions of deafness as a disability and because they do not understand the
varied purposes of testing. They recommended the following actions to address
this resistance: “It is also important [for providers] to differentiate between testing
to rule out associated medical issues that can have a significant impact on medical
management from genetic (DNA) testing to determine a mode of inheritance. A
parent may be quite willing to consent to an EKG on their child to rule out a car-
diac conduction defect while at the same time, not see the utility in determining
whether a connexin mutation exists as a cause for isolated deafness. Providing
parents with testing options also exhibits the health care provider’s trust in their
decision-making ability and allows parents to maintain a sense of control” (p. 785). - Do not understand or accept genetic information. For example, Shaw and Hurst
( 2008 ) found that some British Pakistani mothers who experienced problems and
unexpected infant deaths postnatally “...blamed medical services for not detecting
abnormalities early and suspected medical malpractice or negligence. Their com-
plaints can be viewed as expressions of women’s covert resistance to being blamed
or blaming themselves for their child’s problem...and [resistance] to accepting
genetic explanations, but also indicate a need for counseling to address patients’
understandings of the problem in their pregnancy, infant or child” (p. 380).
Disconnection with the Counselor
Some patients:
- Are testing the genetic counselor’s level of support and competence.
- Dislike something about the genetic counselor but do not voice their negative
reaction directly. - Are culturally distant from the counselor with respect to gender, ethnicity, social
class, religion, previous experiences with prejudice and discrimination, etc.
9 Patient Factors: Resistance, Coping, Affect, andfiStyles