251- Have already experienced a great deal of emotional pain (grief, anger, fear,
shame, or guilt) from their genetic concerns and are reluctant to discuss these
feelings further (e.g., they may be ambivalent, wanting answers to their ques-
tions, but scared of what those answers will be). - Fear the unfamiliar (e.g., they do not know what genetic services involve, feel
apprehensive about discussing personal matters with a stranger, etc.). - Are afraid the genetic counselor will tell other people what they said. For example,
some individuals are resistant to preconception genomic carrier screening because of
concerns about how and when information would be shared (Schneider et al. 2016 ). - Feel threatened (i.e., they fear being unable to cope with a diagnosis of a genetic
condition). For example, individuals at risk for cardiomyopathy or long QT syn-
drome may avoid testing as they do not feel able to handle the continual threat of
sudden death (Smart 2010 ).
Resentment
Some patients:
- Feel coerced (e.g., a patient was told she could only have genetic testing if she
first spoke with a genetic counselor). - Feel angry about being referred by another health-care provider (family doctor,
infertility specialist, etc.) and carry this resentment over to the genetic counselor. - See no reason to speak with a genetic counselor in the first place.
- Have a negative attitude about medical agencies and/or are suspicious of medical
personnel (Peters et al. 2011 ). - Do not believe in discussing genetic information with family members and resent
any suggestion they might do so (Peters et al. 2011 ). - Feel offended by options they consider as unacceptable and resist discussing
them. For example, some individuals at risk for HD resist discussion of abortion
because they believe the quality of life for a gene-positive individual is good
prior to becoming symptomatic (Klitzman et al. 2007 ). As one at-risk individual
expressed, “My brother has HD, but is a beautiful human being...a lot of people
out there would do anything to have 30 good years. I’m taking care of him. He’s
not draining society” (Klitzman et al. 2007 , p. 356).
Misunderstanding
Some patients:
- Do not know how to participate effectively in genetic counseling and/or testing
because they lack understanding of what the services entail. For example, resis-
tance by some individuals to DNA testing and cascade screening for hypertrophic
cardiomyopathy and long QT syndrome may be due to a perception that there are
no personal health benefits from such testing (Smart 2010 ).
9.1 Patient Resistance