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首页> 外文期刊>Clinical Genetics: An International Journal of Genetics in Medicine >Attitudinal concordance toward uptake and disclosure of genetic testing for cancer susceptibility in patient-family member dyads
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Attitudinal concordance toward uptake and disclosure of genetic testing for cancer susceptibility in patient-family member dyads

机译：患者家庭成员二元组对癌症易感性的基因检测的摄取和基因检测的态度一致

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摘要

Decisions for cancer susceptibility genetic testing (CSGT) uptake and dissemination of results occur within the family context. A national survey was performed with 990 patient-family member dyads (participation rate:76.2%), with paired questionnaires examining attitudes toward CSGT uptake and disclosure of results in response to a hypothetical scenario in which a reliable CSGT was available for the specific cancer a patient was being treated. While most patients and family members responded they would uptake or recommend CSGT if available, concordance between the dyads was poor for both patient's testing (agreement rate 77.5%, weighted κ=0.09) and first-degree relatives' testing(agreement rate 78.0%, weighted κ=0.09). Most patients (93.2%) and family members (92.9%) indicated that patients should disclose positive CSGT results to family members, with dyadic agreement of 89.1% (κ=0.15). However, there were substantial disagreement regarding when disclosure should take place, who should make the disclosure (the patient or the health care professionals), and to whom the results should be disclosed. Patients and family members may hold different attitudes toward CSGT uptake of and disclosure of results within the family. Our findings reinforce the need for a family system approach to incorporate perspectives of patients as well as their family members.
机译：癌症易感性基因检测（CSGT）摄取和结果传播的决定发生在家庭范围内。一项全国性调查对990名患者-家庭成员进行了研究（参与率：76.2％），配对问卷调查了对CSGT摄入的态度并披露了结果，以回应针对特定癌症可靠CSGT的假设情况a病人正在接受治疗。虽然大多数患者和家属都回答说如果可能的话，他们会摄取或推荐CSGT，但对于患者的检测（同意率为77.5％，加权κ= 0.09）和一级亲属的检测（同意率为78.0％，权重κ= 0.09）。大多数患者（93.2％）和家庭成员（92.9％）表示患者应向家庭成员披露CSGT阳性结果，二分同意率为89.1％（κ= 0.15）。但是，对于何时应进行披露，应由谁进行披露（患者或医疗保健专业人员）以及应向谁披露结果存在很大的分歧。患者和家庭成员可能对CSGT在家庭内部接受和披露结果持不同态度。我们的发现加强了对家庭系统方法的需求，以纳入患者及其家庭成员的观点。

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