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Anticipated reactions to genetic testing for hereditary non‐polyposis colorectal cancer susceptibility*

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Genetic testing for cancer susceptibility (e.g. hereditary non‐polyposis colorectal cancer) is available for some families with a history of colon cancer. Our aim was to investigate participants' anticipated emotional and behavioral reactions to genetic testing for colon cancer and whether gender or clinical risk influences these reactions. 437 asymptomatic participants with a colorectal cancer family history completed a questionnaire about anticipated emotions and actions, under different genetic testing scenarios. More women than men anticipated feeling worried, regretful, and angry if tested positive. People at lower‐risk anticipated more surprise and disbelief than those at higher‐risk. People anticipated feeling more guilt, regret and less relief if they were not tested than if they were. High‐risk results were anticipated to increase depression and worry. Most people still wanted screening if at low risk, anticipated leading healthier lifestyles whatever the result, but would make more plans for the future if they were at high risk. Clinical implications are that as anticipated emotional effects of not being tested may be more severe than having a test, people choosing to forgo testing should feel able to reconsider their decision anytime. Most people did not anticipate strong emotional reactions but thought it would change their lifestyle and would like continued clinical surveillance whatever the result.
Title: Anticipated reactions to genetic testing for hereditary non‐polyposis colorectal cancer susceptibility*
Description:
Genetic testing for cancer susceptibility (e.
g.
hereditary non‐polyposis colorectal cancer) is available for some families with a history of colon cancer.
Our aim was to investigate participants' anticipated emotional and behavioral reactions to genetic testing for colon cancer and whether gender or clinical risk influences these reactions.
437 asymptomatic participants with a colorectal cancer family history completed a questionnaire about anticipated emotions and actions, under different genetic testing scenarios.
More women than men anticipated feeling worried, regretful, and angry if tested positive.
People at lower‐risk anticipated more surprise and disbelief than those at higher‐risk.
People anticipated feeling more guilt, regret and less relief if they were not tested than if they were.
High‐risk results were anticipated to increase depression and worry.
Most people still wanted screening if at low risk, anticipated leading healthier lifestyles whatever the result, but would make more plans for the future if they were at high risk.
Clinical implications are that as anticipated emotional effects of not being tested may be more severe than having a test, people choosing to forgo testing should feel able to reconsider their decision anytime.
Most people did not anticipate strong emotional reactions but thought it would change their lifestyle and would like continued clinical surveillance whatever the result.

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