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非裔美国人参与癌症基因研究的招募策略。

Strategies for enrollment of African Americans into cancer genetic studies.

作者信息

Ewing Altovise, Thompson Nicole, Ricks-Santi Luisel

机构信息

Department of Health, Behavior and Society, The Johns Hopkins University Bloomberg School of Public Health, 624 N. Broadway St., Room 904, Baltimore, MD, 21205, USA,

出版信息

J Cancer Educ. 2015 Mar;30(1):108-15. doi: 10.1007/s13187-014-0669-z.

Abstract

The enrollment of ethnically diverse populations in genetic and genomic research is vital to the parity of benefits resulting from research with biological specimens. Herein, we discuss strategies that may effectively improve the recruitment of African Americans into genetics studies. Specifically, we show that engaging physicians, genetic counselors, and community members is essential to enrolling participants into genetic studies. We demonstrate the impact of utilizing African American genetic counselors on study enrollment rates and implementing a two-page consent form that improved on a lengthy and inefficient consenting process. Lastly, we provided participants with the option of donating saliva instead of blood for study purposes. Descriptive statistics were used. Using the aforementioned strategies, recruitment goals for the Genetic Basis of Breast Cancer Subtype Study at Howard University (HU) were met. Our overall results yielded 182 participants in 18 months. Recruitment strategies that involve the engagement of physicians, genetic counselors, and community members may help researchers increase the enrollment of ethnically diverse and hard-to-reach participants into genetic studies.

摘要

在基因和基因组研究中纳入种族多样化人群,对于确保利用生物样本开展的研究能平等惠及各方至关重要。在此,我们探讨一些策略,这些策略可能有效地提高非裔美国人参与遗传学研究的招募率。具体而言,我们表明让医生、遗传咨询师和社区成员参与对于招募参与者进入遗传学研究至关重要。我们展示了利用非裔美国遗传咨询师对研究招募率的影响,以及实施一份两页的同意书,改进了冗长且低效的同意过程。最后,我们为参与者提供了为研究目的捐赠唾液而非血液的选择。使用了描述性统计方法。通过上述策略,霍华德大学(HU)乳腺癌亚型研究的基因基础研究招募目标得以实现。我们的总体结果是在18个月内招募了182名参与者。涉及医生、遗传咨询师和社区成员参与的招募策略,可能有助于研究人员提高种族多样化且难以接触到的参与者参与遗传学研究的招募率。

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