Public Expectations for Return of Results from Large-Cohort Genetic Research
Public Expectations for Return of Results from Large-Cohort Genetic Research
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DOI：
10.1080/15265160802513093
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发表时间：
2008-01-01
影响因子：
13.4
通讯作者：
Hudson, Kathy
中科院分区：
文献类型：
--
作者：
Murphy, Juli;Scott, Joan;Hudson, Kathy
美国国立卫生研究院和其他联邦卫生机构正在考虑建立一个国家生物库，以研究基因和环境在人类健康中的作用。进行了一项初步的公众参与研究，以评估公众对拟议生物库的态度和关注，包括对个人研究成果回报的期望。共有141名不同年龄、收入、性别、种族和种族的成年人参加了全国6个地点的16个焦点小组。焦点小组的参与者表达了能够获得个人研究成果的强烈愿望。认识到一项大型队列研究可能产生的广泛研究结果，他们反复自发地建议队列研究参与者可以持续选择他们收到的结果。
The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.