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社区对生物样本库参与的认知:对德克萨斯州三个城市的墨西哥裔美国人的定性研究

Community Perceptions of Biobanking Participation: A Qualitative Study among Mexican-Americans in Three Texas Cities.

作者信息

Heredia Natalia I, Krasny Sarah, Strong Larkin L, Von Hatten Laura, Nguyen Lynne, Reininger Belinda M, McNeill Lorna H, Fernández María E

机构信息

School of Public Health, The University of Texas Health Science Center at Houston, Houston, TX, USA.

出版信息

Public Health Genomics. 2017;20(1):46-57. doi: 10.1159/000452093. Epub 2016 Dec 8.

Abstract

BACKGROUND

Most biospecimens in the US are collected from non-Hispanic Whites, limiting the generalizability of findings. There is a need to increase participation in biobanking among ethnic and racial minorities. The purpose of this study was to use qualitative methods to identify factors that may influence Mexican-American individuals' willingness to participate in biobanking.

METHODS

We conducted 15 focus groups in three Texas cities with Mexican-American individuals, in both Spanish and English.

RESULTS

Lack of knowledge about medical research and biobanks, lack of information about the specifics of biobanking participation, lack of communication of the results, fear of pain or harm, and distrust of the healthcare system or health research were identified as barriers to biobanking participation. Facilitators to participation were altruism, safety, understanding biobanking procedures and purposes, perceived benefits to participation, and culturally appropriate recruitment strategies. Although Mexican-Americans living in Texas are willing to donate biospecimens for altruistic reasons, such as helping society or advancing science, they want more information about what biobanking entails. They want to be assured that participation will not cause them harm and that the research is conducted with good intentions.

CONCLUSION

Results from this study can inform educational materials or interventions to increase Hispanic participation in biobanking.

摘要

背景

美国的大多数生物样本是从非西班牙裔白人中收集的,这限制了研究结果的普遍性。有必要提高少数族裔和种族群体参与生物样本库建设的比例。本研究的目的是运用定性方法来确定可能影响墨西哥裔美国人参与生物样本库建设意愿的因素。

方法

我们在得克萨斯州的三个城市,用西班牙语和英语对墨西哥裔美国人开展了15个焦点小组访谈。

结果

对医学研究和生物样本库缺乏了解、缺乏生物样本库参与细节的信息、结果反馈不畅通、害怕疼痛或受到伤害以及对医疗系统或健康研究不信任,被确定为参与生物样本库建设的障碍。参与的促进因素包括利他主义、安全性、了解生物样本库程序和目的、感知到的参与益处以及符合文化习惯的招募策略。尽管生活在得克萨斯州的墨西哥裔美国人愿意出于利他主义原因,如帮助社会或推动科学发展,捐赠生物样本,但他们希望了解更多关于生物样本库的信息。他们希望得到保证,参与不会对他们造成伤害,并且研究是出于善意进行的。

结论

本研究结果可为提高西班牙裔参与生物样本库建设的教育材料或干预措施提供参考。

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