Background: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. Methods: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. Results and Conclusion: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative’s consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples.

Keywords:
At-risk relatives, Confidentiality, Duty to warn, Genetic information
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2010
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