Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.
Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.
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DOI：
10.1002/ajmg.a.34414
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发表时间：
2012-05
影响因子：
2
通讯作者：
Ross, Lainie Friedman
中科院分区：
文献类型：
--
作者：
Lemke, Amy A.;Halverson, Colin;Ross, Lainie Friedman
关键词：
为了尊重公众，生物库的指导原则和运营应响应并包容参与者的价值观和信仰。为了增加知识和告知机构政策，我们对来自芝加哥南区两个医疗机构的个人进行了一次审慎的参与，这些医疗机构为不同的社会经济社区提供服务，以考虑有关研究结果返还的生物库政策。我们招募了在联邦合格的健康中心或大学诊所接受护理的儿童的主要照顾者参加两个全天的审议参与会议，其中包括四个教育演讲，然后是焦点小组讨论。进行了调查，以评估参与前后的态度，并进行了评价，以评估审议参与过程。所有45名参与者都自称是非洲裔美国人。焦点小组的主题包括：1）对生物库参与、广泛同意和重新联系的总体兴趣; 2）不信任的根本原因和促进信任的潜在生物库策略; 3）接收研究结果的积极和消极方面;以及4）对接收和管理其子女的研究结果的强烈兴趣。调查数据表明，对获得关于自己和子女的结果的兴趣程度相同。会前和会后的调查结果显示，主要是非显着的态度变化，在生物库的参与和研究结果的回报的兴趣水平，虽然有一个减少的关注水平，从研究数据识别。我们的研究结果揭示了共同的社区见解，这对于促进生物库研究人员和研究参与者之间的关系和政策讨论非常重要。
To be respectful of the public, biobank guiding principles and operations should be responsive to and inclusive of the values and beliefs of their participants. In an effort to increase knowledge and inform institutional policies, we conducted a deliberative engagement of individuals from two healthcare facilities in South Side Chicago that serve different socioeconomic communities to consider biobank policies regarding return of research results. We recruited primary caregivers of children receiving care at either a Federally Qualified Health Center or a university-based practice to attend two full-day deliberative engagement sessions, which included four educational presentations followed by focus group discussions. Surveys were administered to assess attitudes before and after the engagement, and an evaluation was conducted to assess the deliberative engagement process. All 45 participants self-identified as African American. Focus group themes included: 1) overall interest in biobank participation, broad consent, and recontact; 2) root causes of distrust and potential biobank strategies to facilitate trust; 3) perceived positive and negative aspects of receiving research results; and 4) strong interest in receiving and managing their children’s research results. Survey data indicated the same degree of interest in receiving results about themselves as about their children. Pre- and post-session findings showed mainly non-significant attitudinal changes in level of interest in biobank participation and return of research results, although there was a decrease in level of concern regarding identification from research data. Our findings reveal shared community insights important in facilitating relationships and policy discussions between biobank researchers and research participants.
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影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
DOI：
10.1177/1740774510373497
发表时间：
2010
期刊：
Clinical trials (London, England)
影响因子：
--
作者：
Hilner JE;Perdue LH;Sides EG;Pierce JJ;Wägner AM;Aldrich A;Loth A;Albret L;Wagenknecht LE;Nierras C;Akolkar B;T1DGC
通讯作者：
T1DGC
DOI：
10.1097/gim.0b013e3181cd6689
发表时间：
2010-02
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Bussey-Jones J;Garrett J;Henderson G;Moloney M;Blumenthal C;Corbie-Smith G
通讯作者：
Corbie-Smith G
DOI：
10.1525/jer.2009.4.4.3
发表时间：
2009-12
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
--
作者：
Kim SY;Wall IF;Stanczyk A;De Vries R
通讯作者：
De Vries R
影响因子：
5.3
作者：
Jonassaint, Charles R.;Santos, Eunice R.;Royal, Charmaine D.
通讯作者：
Royal, Charmaine D.