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中文摘要
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试点项目摘要。 我们建议调查老年、服务不足的城市非裔美国成年人对收集生物标本用于研究的过程的文化信仰、看法和感受如何影响他们为临床研究捐赠生物标本的意愿。底特律几乎没有进行过仔细、系统和深入的研究,以确定少数族裔老年居民对向这座城市(以及其他城市)的医疗机构捐赠生物样本的感受,以便广泛测试和开发个性化药物和先进的基因组研究。国家癌症研究所,卡马诺斯癌症 KCI研究所、威斯康星州立大学医学院、约瑟芬·福特癌症中心(JFCC)及其附属医院/诊所正在增加生物库倡议的数量(例如,用于肺癌基因研究的脐带血、血液和口腔拭子、前列腺癌的组织样本、用于乳腺癌预后研究的疾病肿瘤样本、商业企业等)。然而,这一增长使得在道义和伦理上迫切需要确定我们区域最脆弱和处于危险中的人口的成员对这些问题的看法。 研究努力。他们的感受、看法、期望和担忧能够并将影响到生物质学家的收集和银行业务。这项研究试点对于在医疗服务不足的密歇根州东南部城市地区进行研究是及时的。为了一个有效的生物检疫收集、处理、银行和分析系统,我们的利益相关者和社区居民必须不断地及早和经常地参与,正确和自愿地讨论他们的观点,表达他们的关切和期望,并在一个协作的 将政策与实施联系起来。 为了联系我们的社区并开始这次合作对话,我们计划与我们的东南部密歇根州CNP II社区咨询小组(CAG)的代表一起开展一套系统的CBPR试点活动。首先,我们将进行质的研究部分。我们的CAG成员将协助我们规划和领导焦点小组,以从不同的社区成员那里获得、倾听和学习。CAG成员将就以下方面提供反馈 解释这些焦点小组的调查结果,我们将共同开发一份调查问卷,以评估老年、服务不足的非裔美国成年人的人口、健康和态度因素如何与捐赠生物样本的决定有关。我们将讨论癌症研究中收集最频繁的样本: 肿瘤病理组织、血液、口腔拭子、尿液和头发。最后,基于焦点小组和调查结果,我们将与我们的研究咨询委员会(RAC;见N3/0节:外联计划)一起制定和评估一项试点教育干预措施,以帮助老年人了解生物多样性是如何 收款和银行业务有助于减少健康结果方面的差距。
英文摘要
Pilot Project Summary. We propose to investigate how the cultural beliefs, perceptions, and feelings of older, underserved urban African American adults about the process of collecting biospecimens for research affects their willingness to donate biospecimens for clinical studies. Almost no careful, systematic and in-depth studies have been conducted in Detroit to determine how minority elder residents feel about donating biological samples to the medical institutions in this city (and beyond) for extensive testing and development of personalized medicine and advanced genomic research. The National Cancer Institute, Karmanos Cancer Institute (KCI), WSU School of Medicine, Josephine Ford Cancer Center (JFCC) and affiliated hospitals/clinics are increasing the number of biobanking initiatives (e.g., cord blood, blood and buccal swabs for lung cancer genetic studies, tissue samples for prostate cancer, disease tumor samples for prognostic breast cancer studies, commercial ventures, etc.). However, this increase makes it morally and ethically imperative to ascertain how members ofthe most vulnerable and at-risk populations in our region feel about these research efforts. Their feelings, perceptions, expectations and concerns can and will affect biospecimen collection and banking. This research pilot is timely for conducting research in the medically underserved urban southeast Michigan region. For a biospecimen collection, processing, banking and analysis system to be effective, our stakeholders and community residents must be continually engaged early and often, to rightfully and voluntarily discuss their views, voice their concerns and expectations and articulate in a collaborative context the policies for implementation. To reach our community and begin this collaborative dialogue, we plan a systematic set of CBPR pilot activities with our Southeast Michigan CNP II Community Advisory Group (CAG) representatives. First we will conduct a qualitative research component. Our CAG members will assist us in planning and conducting focus groups to elicit, listen and learn from diverse community members. CAG members will provide feedback on interpretation of these focus group findings and together we will develop a survey questionnaire to assess how demographic, health, and attitudinal factors of older, underserved African American adults are associated with decisions to donate biospecimens. We will address the most frequently collected samples in cancer research: tumor pathology tissue, blood, buccal swabs, urine, and hair. Finally, based on the focus group and survey findings, we will, togetherwith our Research Advisory Committee (RAC; see Section N3/0utreach Program) develop and evaluate a pilot educational intervention to assist older adults in understanding how biospecimen collection and banking can contribute to the reduction of disparities in health outcomes.
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Pilot Project
  • 批准号:
    8022177
  • 项目类别:
  • 资助金额:
    $3.23万
  • 财政年份:
    2010
  • 负责人:
    Kelly Brittain
  • 依托单位:
The Influence of Family and Cultural Identity on Informed Decision-Making
The Influence of Family and Cultural Identity on Informed Decision-Making
The Influence of Family and Cultural Identity on Informed Decision-Making
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