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Psychological Aspects of Cancer pp 31–64Cite as

Psychological Aspects of Hereditary Cancer Risk Counseling and Genetic Testing

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Abstract

Hereditary cancer risk counseling is the process of identifying families at risk for hereditary cancer syndromes with the ultimate goal of minimizing cancer-related morbidity and mortality. We review psychological and behavioral outcomes of counseling and genetic testing for widely studied cancer syndromes, such as hereditary breast and ovarian cancer and hereditary colorectal cancer, as well as newer areas of inquiry, such as hereditary melanoma. We review both short- and longer-term psychological outcomes, including perceived costs and benefits. Our review suggests that rather than constituting a new stressor to which people must respond and adapt, hereditary cancer risk counseling and genetic testing may instead be conceptualized as powerful tools that patients and their families may use in ongoing efforts to manage hereditary cancer risk. Specifically, hereditary cancer risk counseling and genetic testing promote sustained improvements in adherence to screening recommendations, as well as other risk-reducing behaviors such as prophylactic surgery, but do not appear to create lasting increases in depression or anxiety. Further, there appear to be different patterns of psychological outcomes that are likely shaped both by specific personal and familial antecedents of the decision to seek genetic testing and properties of the cancer syndromes themselves. We present an integrative framework for understanding these diverse outcomes that may guide the design of future studies, and we discuss methodological issues that may inform our understanding of psychological and behavioral outcomes. Such understanding will help maximize the benefits of personalized medicine for cancer prevention through early detection and treatment.

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Acknowledgments

The authors were supported in part in the preparation of this chapter by Award Number R01CA158322 from the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. The authors acknowledge the use of core facilities supported by The National Institutes of Health 5P30CA420-14 awarded to Huntsman Cancer Institute from National Cancer Institute (NCI) Cancer Center Support Grants, the genetic counseling core facility supported by the Huntsman Cancer Foundation, and The National Institutes of Health Office of the Director 1KL2RR025763-01 National Center for Research Resources awarded to the University of Utah. We thank Marjan Champine and Tammy Stump for helpful comments on an earlier version of this manuscript and Angela Newman for assistance with its preparation.

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Authors and Affiliations

  1. Department of Psychology, University of Utah, 380 South 1530 East, Room 502, Salt Lake City, UT, 84112, USA

    Lisa G. Aspinwall Ph.D. & Jennifer M. Taber M.S.

  2. High Risk Cancer Clinics, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, 84112, USA

    Wendy Kohlmann M.S., CGC

  3. Department of Dermatology, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, 84112, USA

    Sancy A. Leachman M.D., Ph.D.

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  1. Lisa G. Aspinwall Ph.D.
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  2. Jennifer M. Taber M.S.
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  3. Wendy Kohlmann M.S., CGC
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  4. Sancy A. Leachman M.D., Ph.D.
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Correspondence to Lisa G. Aspinwall Ph.D. .

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  1. Kimmel Cancer Center, Thomas Jefferson University, S. 10th Street 233, Philadelphia, 19107, Pennsylvania, USA

    Brian I. Carr

  2. STARZL TRANSPLAN INST, University of Pittsburgh, 5TH AVE 7 MONTEFIORE 3459, PITTSBURGH, 15213, Pennsylvania, USA

    JENNIFER STEEL

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Aspinwall, L.G., Taber, J.M., Kohlmann, W., Leachman, S.A. (2013). Psychological Aspects of Hereditary Cancer Risk Counseling and Genetic Testing. In: Carr, B., STEEL, J. (eds) Psychological Aspects of Cancer. Springer, Boston, MA. https://doi.org/10.1007/978-1-4614-4866-2_3

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