@article{9de53866fb3a4c34a5f286b49569dbb3,
title = "Perceived risk following melanoma genetic testing: A 2-year prospective study distinguishing subjective estimates from recall",
abstract = "A major goal of predictive genetic testing is to alert people to their risk before illness onset; however, little is known about how risk perceptions change following genetic testing and whether information is recalled accurately over time. In the United States, a CDKN2A/p16 mutation confers 76 % lifetime risk of melanoma. Following genetic counseling and test reporting, subjective risk estimates and recall of counselor-provided risk estimates were assessed 5 times over the next 2 years among 60 adult members of 2 extended CDKN2A/p16 kindreds. No sustained changes from baseline in risk perceptions were reported. Unaffected carriers (n=15) consistently reported significantly lower subjective risk estimates (46 %) than they were actually given (76 %, p<0.001) or recalled having been given (60 %, p<0.001). Noncarriers' (n=27) risk estimates decreased following results disclosure, but rebounded, with both subjective and recalled estimates subsequently exceeding what they were told by the counselor (both ps<0.001). Affected carriers' (n=18) risk estimates for developing a new melanoma corresponded well to counselor-provided information (p=0.362). For all 3 patient groups, results were consistent across multiple risk measures and remained similar when demographic, phenotypic, and baseline behavioral contributors to melanoma risk were statistically controlled. These findings are consistent with other studies of risk perception, but additional studies of more diverse populations are needed to understand the reasons behind both the persistence of initial risk estimates and their divergence from information provided by the counselor during genetic counseling. Additionally, determining whether holding subjective risk perceptions that differ from counselor-provided information ultimately affects adherence to management recommendations will help guide the presentation of risk information in genetic counseling practice.",
keywords = "CDKN2A/p16, Genetic counseling, Genetic testing, Melanoma, Perceived risk",
author = "Aspinwall, {Lisa G.} and Taber, {Jennifer M.} and Wendy Kohlmann and Leaf, {Samantha L.} and Leachman, {Sancy A.}",
note = "Funding Information: Acknowledgments The authors gratefully acknowledge the generous participation of all the family members in this study without whom this project would not have been possible; Marybeth Hart, Erin Dola, and Lisa Wadge for their contributions to the development of the study; Amber Kostial, Emily Bullough, Michelle Welch, Hoda Wali, Candace Larson, and Taylor Haskell for their service as Study and/or Clinic Coordinators; and Angela Newman for assistance with preparation of the manuscript. This work was supported by a Funding Incentive Seed Grant, Office of the Vice President for Research, University of Utah, and a Cancer Control and Population Sciences Pilot Project Award from the Huntsman Cancer Institute awarded to Lisa G. Aspinwall and Sancy A. Leachman. Support was also received from the Huntsman Cancer Foundation (HCF), the Tom C. Mathews, Jr. Familial Melanoma Research Clinic endowment, the Pedigree and Population Resource of Huntsman Cancer Institute, and the Utah Population Database. This research was supported by the Utah Cancer Registry, which is funded by contract N01-PC-35141 from the National Cancer Institute SEER Program with additional support from the Utah State Department of Health and the University of Utah. The authors acknowledge the use of core facilities supported by the National Institutes of Health through National Cancer Institute (NCI) Cancer Center Support Grant 5P30CA420-14 awarded to Huntsman Cancer Institute, the genetic counseling core facility supported by the Huntsman Cancer Foundation, and National Center for Research Resources grant 1KL2RR025763-01 awarded to the University of Utah by the National Institutes of Health Office of the Director. The authors were supported in part in the preparation of this article by Award Number R01 CA158322-01 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.",
year = "2014",
month = jun,
doi = "10.1007/s10897-013-9676-1",
language = "English (US)",
volume = "23",
pages = "421--437",
journal = "Journal of Genetic Counseling",
issn = "1059-7700",
publisher = "Kluwer Academic/Human Sciences Press Inc.",
number = "3",
}