Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis
Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis
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DOI：
10.1159/000099083
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发表时间：
2007-01-01
期刊：
影响因子：
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通讯作者：
Hall, Wayne D.
中科院分区：
文献类型：
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作者：
Treloar, Susan A.;Morley, Katherine I.;Hall, Wayne D.
目的：这项探索性的先导性研究旨在调查在一项关于子宫内膜异位症的大型遗传流行病学研究中提供流行病学信息、血液样本以及获取临床记录和数据的参与者的动机和反思。子宫内膜异位症是一种影响女性的常见多因素疾病。我们还旨在探索对复杂遗传或多因素疾病的总体理解。方法：对16名不同特征的子宫内膜异位症研究对象进行深入访谈。结果：受访者一般使用利他主义参考框架描述他们参与遗传研究的情况。出现的主题包括毫无疑问的参与意愿和同意，对隐私问题的很少关注，渴望从研究人员那里获得更多关于病情的信息，而不是科学进步，参与研究对家庭交流的好处，以及关于基因对子宫内膜异位症的影响的不同观点。子宫内膜异位症的特殊特征也影响了对研究参与体验的反思。结论：随着社区中越来越多的个人和家庭参与常见疾病的遗传流行病学研究，需要更广泛的研究来更好地了解他们的期望，以期改善研究人员与研究参与者的沟通。版权所有(C)2007 S.Karger AG，巴塞尔。
Objective: This exploratory, pilot study aimed to investigate motivations and reflections of participants who had provided epidemiological information, blood samples and access to clinical records and data in a large genetic epidemiological study of endometriosis, a common multifactorial disorder affecting women. We also aimed to explore understanding of complex genetic or multifactorial conditions in general. Methods: In-depth interviews were conducted with 16 endometriosis study participants with diverse characteristics. Results: Interviewees generally described their participation in the genetic study using altruistic frameworks of reference. Themes that emerged included unquestioning willingness and consent to participate, little concern about privacy issues, desire for more information from the researchers about the condition rather than scientific progress, the benefits of research participation to family communication, and differing ideas about genetic influences on endometriosis. Specific features of endometriosis also influenced reflections on research participation experience. Conclusions: As increasing numbers of individuals and families in the community become involved in genetic epidemiological studies of common diseases, more extensive research will be needed to better understand their expectations with a view to improving researchers' communications with study participants. Copyright (c) 2007 S. Karger AG, Basel.