Background Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public’s opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. Methods A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson’s chi-square (χ 2 ) test. Results Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (χ2, p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, χ2, p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%). Conclusions In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.

中文翻译：

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公众支持以医疗保健为中介的遗传性癌症风险信息披露：瑞典一项基于人群的调查结果

背景 如果亲属被识别、告知并参加筛查计划，则对遗传性癌症风险增加的家庭中的高危个体进行有针对性的监测是一种有效的预防策略。尽管有潜在的好处，但许多符合条件的高危亲属仍然不知道他们的癌症风险。本研究描述了公众对遗传性结直肠癌 (CRC) 风险信息披露的看法，以及对信息来源和方式的偏好。方法通过瑞典公民网络面板对公众的随机样本进行评估。向受访者展示了作为家族中高危亲属的情景，该家族估计患有 CRC 的遗传风险增加；10%（中等）或 70%（高）终生风险。结肠镜检查作为预防措施提出。使用 Pearson 卡方 (χ2) 检验分析结果以识别组间的显着差异。结果 在 1800 名受邀参与者中，977 人完成了调查（54%）。在中度和高风险情况下，分别有 89.2% 和 90.6% 的人希望收到有关 CRC 潜在遗传风险的信息 (χ2, p = .755)。女性 (91.5%) 的知情意愿高于男性 (87.0%, χ2, p = .044)。比较不同年龄组、教育水平、居住地和是否有孩子时，没有发现显着差异。风险信息的首选来源是中度和高风险情况下的医疗保健专业人员（80.1% 和 75.5%）。然而，分别有 18.1% 和 20.1% 的人更愿意由家庭成员告知。假设医疗保健专业人员披露了这些信息，最喜欢的信息方式是信件和电话（38.4% 和 33.2%）。结论 在这项研究中，大多数受访者希望了解 CRC 的潜在遗传风险，并希望医疗保健专业人员传达这些信息。两种呈现的 CRC 终生风险水平并没有显着影响被告知的兴趣。我们的数据提供了对瑞典人口需求和偏好的洞察，为开发互补的医疗保健辅助沟通途径提供了基本原理，以充分发挥靶向预防遗传性 CRC 的潜力。结论 在这项研究中，大多数受访者希望了解 CRC 的潜在遗传风险，并希望医疗保健专业人员传达这些信息。两种呈现的 CRC 终生风险水平并没有显着影响被告知的兴趣。我们的数据提供了对瑞典人口需求和偏好的洞察，为开发互补的医疗保健辅助沟通途径提供了基本原理，以充分发挥靶向预防遗传性 CRC 的潜力。结论 在这项研究中，大多数受访者希望了解 CRC 的潜在遗传风险，并希望医疗保健专业人员传达这些信息。两种呈现的 CRC 终生风险水平并没有显着影响被告知的兴趣。我们的数据提供了对瑞典人口需求和偏好的洞察，为开发互补的医疗保健辅助沟通途径提供了基本原理，以充分发挥靶向预防遗传性 CRC 的潜力。