Public Expectations for Return of Results from Large-Cohort Genetic Research

被引：207

作者：

Murphy, Juli ^{[1
]}

Scott, Joan ^{[1
]}

Kaufman, David ^{[1
]}

Geller, Gail ^{[3
,4
]}

LeRoy, Lisa ^{[2
]}

Hudson, Kathy ^{[1
,5
]}

机构：

[1] Johns Hopkins Univ, Berman Inst Bioeth, Genet & Publ Policy Ctr, Washington, DC 20036 USA

[2] ABT Associates Inc, Cambridge, MA 02138 USA

[3] Johns Hopkins Univ, Berman Inst Bioeth, Dept Med, Baltimore, MD USA

[4] Johns Hopkins Univ, Dept Pediat, Baltimore, MD USA

[5] Johns Hopkins Univ, Dept Pediat, Washington, DC USA

来源：

AMERICAN JOURNAL OF BIOETHICS | 2008年 / 8卷 / 11期

关键词：

Results; biobank; engagement; genetics; public opinion; focus groups; cohort study;

D O I：

10.1080/15265160802513093

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

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.

引用

页码：36 / 43

页数：8

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