Ceballos Rachel M, Knerr Sarah, Scott Mary Alice, Hohl Sarah D, Malen Rachel C, Vilchis Hugo, Thompson Beti
Fred Hutchinson Cancer Research Center, Seattle, WA, USA University of Washington, Seattle, USA
University of Washington, Seattle, USA.
J Empir Res Hum Res Ethics. 2014 Oct;9(4):10-21. doi: 10.1177/1556264614544454. Epub 2014 Aug 5.
Latinos are under-represented in biomedical research conducted in the United States, impeding disease prevention and treatment efforts for this growing demographic group. We gathered perceptions of biomedical research and gauged willingness to participate through elicitation interviews and focus groups with Latinos living on the U.S.-Mexico border. Themes that emerged included a strong willingness to participate in biomedical studies and suggested that Latinos may be under-represented due to limited formal education and access to health information, not distrust. The conflation of research and clinical care was common and motivated participation. Outreach efforts and educational interventions to inform Latinos of participation opportunities and clarify harms and benefits associated with biomedical research participation will be essential to maintain trust within Latino communities.
在美国进行的生物医学研究中,拉丁裔的参与度不足,这阻碍了针对这一不断增长的人口群体的疾病预防和治疗工作。我们通过与生活在美国-墨西哥边境的拉丁裔进行启发式访谈和焦点小组讨论,收集了他们对生物医学研究的看法,并评估了他们参与研究的意愿。出现的主题包括强烈的参与生物医学研究的意愿,这表明拉丁裔参与度不足可能是由于正规教育有限和获取健康信息的机会有限,而非不信任。研究与临床护理的融合很常见,也是参与研究的动力。开展外展工作和教育干预,让拉丁裔了解参与机会,并阐明参与生物医学研究的危害和益处,对于维持拉丁裔社区内部的信任至关重要。