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基于社区的伙伴关系,以确定生物样本研究参与的关键因素。

Community-based partnership to identify keys to biospecimen research participation.

作者信息

Erwin Deborah O, Moysich Kirsten, Kiviniemi Marc T, Saad-Harfouche Frances G, Davis Warren, Clark-Hargrave Nikia, Ciupak Gregory L, Ambrosone Christine B, Walker Charles

机构信息

Roswell Park Cancer Institute, Cancer Prevention and Population Sciences, Buffalo, NY, USA.

出版信息

J Cancer Educ. 2013 Mar;28(1):43-51. doi: 10.1007/s13187-012-0421-5.

Abstract

Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.

摘要

报告显示,参与生物样本库建设存在诸多障碍,包括不愿接受采血程序,以及对保密性、隐私和歧视问题的担忧。该研究确定了关键因素和有影响力的观点,以解决这些障碍,并为改善种族多样化社区的招募和研究参与度提供方法。采用了一种混合方法、基于社区的参与性研究方向来收集形成性结果,以开发一项试点干预措施。方法包括九次关键 informant 访谈、三个焦点小组(n = 26)和64份社区调查。结果显示:(1)对制药公司赞助商剥削行为的担忧增加;(2)对研究参与的金钱补偿看法不一;(3)社区调查中超过30%的人愿意参与生物样本库研究。研究参与和生物样本捐赠可能会受到研究赞助商的影响。对于非裔美国参与者来说,参与研究的金钱激励可能比白人参与者更为重要。

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