Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study

Vermeulen Eric; Rebers Susanne; Aaronson Neil K.Brandenburg Alexander P.van Leeuwen Flora E.Schmidt Marjanka K.

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Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study

机译：病人的态度的回归研究残余后偶然发现组织:一个混合方法研究

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Aims: To investigate the attitudes of patients toward the return of individual research results from scientific research with residual tissue. Methods and Findings: We recruited 1319 patients from 6 Dutch hospitals. In total, 673 patients (51% response rate) completed the questionnaire and 146 were interviewed. Based on the questionnaire data, the majority of respondents (92%) wanted to be informed of incidental findings about both a curable (92%) and an incurable (76%) disease. Respondents' wishes to be informed about incidental findings did not vary significantly as a function of patient demographics or type of disease. The interview data show that respondents wished to be informed about incidental findings because they considered it to be normal practice; they expected the information to be of benefit for their health. Information should be provided by their physician. Yet, most respondents (84%) would consent to research even if they would not be informed about incidental findings, primarily because they recognized that there might be practical problems in providing such information, and because they valued scientific research highly. Conclusions: We conclude that, while the majority of patients want to be informed about incidental findings, they also recognize that this may be difficult.

机译：目的:探讨病人的态度对个人研究的回归结果从科学研究剩余组织。方法和结果:我们招募了1319名病人从6荷兰医院。反应率(51%)完成了问卷调查, 146人采访。调查问卷数据,大多数的受访者(92%)想要附带的通知结果治愈(92%)和无法治愈的疾病(76%)。被告知没有偶然的发现显著不同的病人人口结构或类型的疾病。数据显示,受访者希望被告知对偶然的发现,因为他们考虑这是正常的做法;对健康信息的好处。应该提供的信息医生。即使他们不会同意研究了解偶然发现,为主因为他们认识到,可能会有实际问题提供此类信息,因为他们重视科学研究高度。大多数病人想要了解偶然发现,他们也承认这一点这可能是困难的。

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《Genetic testing and molecular biomarkers》 |2018年第3期|178-186|共9页
作者
Vermeulen Eric; Rebers Susanne; Aaronson Neil K.Brandenburg Alexander P.van Leeuwen Flora E.Schmidt Marjanka K.;
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Netherlands Canc Inst, Div Psychosocial Res & Epidemiol, Amsterdam, Netherlands;

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正文语种英语
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Incidental Findings; Respondents; Attitudescientific researchQualitative ResearchBiological Specimen Banks;

机译：偶然发现,受访者;AttitudescientificresearchQualitative ResearchBiological标本银行;

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Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study

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