公众对大型队列基因研究结果反馈的期望。
Public expectations for return of results from large-cohort genetic research.
作者信息
Murphy Juli, Scott Joan, Kaufman David, Geller Gail, LeRoy Lisa, Hudson Kathy
机构信息
Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC 20036, USA.
出版信息
Am J Bioeth. 2008 Nov;8(11):36-43. doi: 10.1080/15265160802513093.
Abstract
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.
摘要
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样本库，以研究基因和环境在人类健康中的作用。开展了一项初步的公众参与研究，以评估公众对拟建生物样本库的态度和担忧，包括对个人研究结果反馈的期望。共有141名不同年龄、收入、性别、族裔和种族的成年人参加了在全国六个地点举行的16个焦点小组。焦点小组参与者表达了能够获取个人研究结果的强烈愿望。认识到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，队列研究参与者应能持续选择接收哪些结果。
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