太平洋岛民参与生物标本研究的保留。

Patchareeya P. Kwan, Greta Briand, Cevadne Lee, J. Lepule, Karen Llave, K. Pang, M. Sabado, L. Santos, S. Tanjasiri, Vanessa Tui’one, Dorothy Schmidt-Vaivao, P. Palmer
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引用次数: 6

摘要

背景和意义尽管癌症、糖尿病和心血管疾病等慢性疾病的发病率很高,但太平洋岛民(pi)在旨在确定不良健康结果生理原因的临床和遗传研究中的代表性不足。正在研究的pi的遗传数据和生物标本样本有限。本文描述了为什么pi对捐赠生物标本样本进行研究持保留态度。方法数据来自一项试点研究,旨在评估南加州pi对生物标本研究的知识、态度和信念。利用基于社区的参与性研究方法,社区和学术合作伙伴从60名平均年龄61岁(SD 13岁)的PI成年人中收集了定量和定性数据。结果“恐惧”、“上帝或灵性”和“缺乏信息或知识”是不参加生物标本研究的主要原因。65岁以下的受访者比65岁以上的受访者更担心捐献生物标本样本(p<0.012)。性别差异无统计学意义(p=0.84)。结论我们的研究结果强调了在少数民族社区开展相关和适当的生物标本教育的必要性,以消除误解,并建立支持,以增加PI和其他少数民族参与生物标本相关研究。
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Reservations to Participate in Biospecimen Research among Pacific Islanders.
Background and Significance Despite high rates of chronic diseases like cancer, diabetes and cardiovascular disease, Pacific Islanders (PIs) are underrepresented in clinical and genetic studies designed to identify the physiological causes of poor health outcomes. There are limited genetic data and biospecimen samples from PIs under study. This paper described why PIs have reservations about donating their biospecimen samples for research. Methods Data were drawn from a pilot study designed to assess the knowledge, attitudes and beliefs surrounding biospecimen research among PIs in southern California. Utilizing a community-based participatory research approach, community and academic partners collected quantitative and qualitative data from a total of 60 PI adults with a mean age of 61 years (SD 13 years). Results "Fear", "God or Spirituality" and "Lack of Information or Knowledge" were the most cited reasons for not participating in biospecimen research. Respondents younger than age 65 years expressed more concerns about donating their biospecimen samples than those older than age 65 years (p<0.012). No significant gender differences were found (p=0.84). Conclusion Our results emphasize the need to conduct relevant and appropriate biospecimen education among minority communities in order to address misconceptions and build support to increase PI and other minority participation in biospecimen-related studies.
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