Dang Julie H T, Rodriguez Elisa M, Luque John S, Erwin Deborah O, Meade Cathy D, Chen Moon S
UC Davis Comprehensive Cancer Center, 4800 2nd Avenue, FSSB, Suite 2200, Sacramento, CA, 95817, USA,
J Community Genet. 2014 Oct;5(4):313-27. doi: 10.1007/s12687-014-0186-0. Epub 2014 Mar 25.
Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for non-English speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants' backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.
临床研究越来越依赖于合适的遗传材料的可用性；然而，来自种族/族裔少数群体患者和健康对照的生物样本比例未得到充分体现，这妨碍了针对所有患者群体进行公平的癌症治疗研究。美国国立癌症研究所资助的加利福尼亚州、佛罗里达州和纽约州的社区网络项目中心与当地社区合作伙伴合作，对不同种族（非裔美国人、亚裔美国人、西班牙裔和白人）的参与者开展了三项独立的形成性研究，以探讨他们对生物样本库的知识、态度和信念，以及他们捐赠生物样本的经历。我们的研究结果表明，总体而言，对于生物样本用于研究的知识和理解程度较低，且情况相似。对于非英语使用者来说，这种情况更为严重。在一些阻碍参与的因素方面，不同种族和族裔群体存在差异，例如持续存在的医疗不信任（非裔美国人）、缺乏益处（西班牙裔）、担心捐赠对身体的影响（越南人）、生物样本用于研究的用途（苗族和中国人）以及怀疑企业实体的剥削行为（白人）。然而，参与者一致表示普遍有兴趣并愿意出于利他目的参与生物样本库，特别是为了造福后代。这种兴趣伴随着强烈的告诫，即捐赠应伴随着研究赞助和所有权、生物样本的分发和使用以及符合参与者背景和经历的研究信息的透明度。这种跨文化的区域分析为关于生物样本库以及用于癌症研究的生物样本收集的观点和看法的异同提供了重要见解。
