Richards M P M, Ponder M, Pharoah P, Everest S, Mackay J
Centre for Family Research, University of Cambridge, Cambridge, UK.
J Med Ethics. 2003 Apr;29(2):93-6. doi: 10.1136/jme.29.2.93.
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.
21名曾患乳腺癌且参与了一项大型遗传性乳腺癌流行病学研究的女性接受了访谈，内容涉及她们参与该研究的经历、对数据保密性的态度以及个人和总体研究结果的反馈。与入组信息表相比，家族史信息的收集在表明研究的遗传性质方面似乎更为突出。没有人担心保密性问题。虽然参与者欢迎关于研究结果的总体反馈，并对未提供此类反馈表示不满，但个人信息的反馈却很复杂，有时甚至困难。建议仅在有特定原因时才在流行病学研究中进行基因检测信息的个体反馈。
