Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
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DOI：
10.1136/jme.29.2.93
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发表时间：
2003-04-01
影响因子：
4.1
通讯作者：
Mackay, J
中科院分区：
文献类型：
--
作者：
Richards, MPM;Ponder, M;Mackay, J
对参加过一项大型遗传性乳腺癌流行病学研究的患有乳腺癌的女性(N=21)进行了访谈，内容包括她们参与研究的经历、对数据保密的态度以及个人和总体研究结果的反馈。在表明研究的遗传性质方面，收集家族史信息似乎比登记资料单更重要。虽然参与者欢迎对研究结果的一般反馈，并批评没有提供这种反馈，但个人信息的反馈被证明是复杂的，有时甚至是困难的。建议在流行病学研究中，只有在有特定原因的情况下，才应对基因检测信息进行个人反馈。
Women (N=21) who had had breast cancer and had been enrolled in a large genetic breast cancer epidemiological study were interviewed about their experience of participation in the study, their attitudes to the confidentiality of data, and the feedback of personal and general research results. Collection of family history information seemed more salient in indicating the genetic nature of the study than the enrolment information sheet. There were no concerns about confidentiality.While participants would have welcomed general feedback about the results of the study and were critical that this had not been provided, the feedback of personal information proved complicated and, sometimes, difficult. It is suggested that individual feedback of genetic test information in epidemiological studies should be undertaken only when there are specific reasons.