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Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - Components of the Risk Assessment Process

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One study has shown that the addition of a colored ecogenetic relationship map (CEGRM) to the psychosocial assessment is feasible for assessing the social milieu in which an individual resides.[9] The CEGRM is a psychosocial assessment tool that expands the family pedigree to include a family systems genogram and ecomap.[10]

Education

Assessing the concept of personal cancer risk and its relationship to genetics is complex and not completely understood. However, the evidence continues to accumulate that a set of evolving factors influences a person's concept of his or her risk, which may not be congruent with evidence-based quantitative calculations. This assessment includes the following:

  • Experiential and empathetic knowledge.
  • People's beliefs regarding the basis for the occurrence of cancer in themselves and/or their relatives.
  • Sources of information and inaccuracies and/or misperceptions.
  • Literacy level, including health and numeracy.[11,12]
  • Personal theories of inheritance.
  • Patterns of decision making (deliberate vs. experiential).[13,14]

A thorough understanding of these issues can greatly inform genetic education and counseling. These factors influence the processing of risk information and subsequent health behaviors.[14]

Risk perception

The communication of risk involves the delivery of quantitative information regarding what the data indicate about the likelihood of developing illness given various preventive actions. More broadly, however, risk communication is an interactive process regarding the individual's knowledge, beliefs, emotions, and behaviors associated with risk and the risk message conveyed. Accordingly, the goal of risk communication may be to impact the individual's knowledge of risk factors, risk likelihoods, potential consequences of risk, and the benefits and drawbacks of preventive actions.

Even before the provision of risk information, the provider may anticipate that the individual already has some sense of his or her own risk of cancer. The individual may have derived this information from multiple sources, including physicians, family members, and the media.[15] This information may be more salient or emotional if a family member has recently died from cancer or if there is a new family diagnosis.[16,17] Additionally, individuals may have beliefs about how genetic susceptibility works in their family.[18,19] For example, in a family where only females have been affected with an autosomal dominant cancer susceptibility syndrome thus far, it may be difficult to convince the consultand that her sons have a 50% risk of inheriting the disease-related mutation. The social-ecological context through which risk beliefs develop and are maintained are important as potential moderators of individuals' receptivity to the cancer risk communication process and also represent the context in which individuals will return to continue ongoing decision making about how to manage their risk.[20,21] As such, individuals' beliefs, and the social context of risk, are important to discuss in education and genetic risk counseling.

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