Department of Obstetrics and Gynecology, University of Alabama at Birmingham, 619 19th Street South, 10360F, Birmingham, Albama, 35249, USA.
Moffitt Cancer Center, Tampa, Florida, USA.
Cancer Causes Control. 2022 Aug;33(8):1059-1069. doi: 10.1007/s10552-022-01576-9. Epub 2022 Apr 11.
Inclusion of racial/ethnic minorities in cancer research can reduce disparities in health outcomes; however, data regarding barriers and motivators to participation are sparse. This study assessed African American (AA) and Latinx healthy volunteers' perspectives regarding willingness to participate in noninvasive and invasive research activities.
Using a 38-item questionnaire adapted from the Tuskegee Legacy Project Questionnaire, we assessed willingness to participate in 12 research activities, offering 27 possible barriers and 14 motivators. The sample was segmented into four subgroups by AA/Latinx and rural/urban.
Across five states and Puerto Rico, 533 participants completed questionnaires. Overall, participants were more willing to participate in noninvasive versus invasive procedures, although, all subgroups were willing to participate in research if asked. Rural AA were most willing to complete a survey or saliva sample, while rural Latinx were least willing. Urban AA were least willing to provide cheek swab, while rural counterparts were most willing. Self-benefit and benefit to others were among the top three motivators for all subgroups. Curiosity was a primary motivator for urban AA while obtaining health information motivated rural Latinx. Primary barriers included fears of side effects and being experimented on, lack of information, and lack of confidentiality.
Latinx and AAs are willing to participate in the continuum of nontherapeutic research activities suggesting their lack of participation may be related to not being asked. Inclusive enrollment may be achieved by assessing needs of participants during the design phase of a study in order to reduce barriers to participation.
将少数族裔纳入癌症研究可以减少健康结果的差异；然而，关于参与的障碍和动机的数据很少。本研究评估了非裔美国人和拉丁裔健康志愿者对参与非侵入性和侵入性研究活动的意愿。
我们使用了一项源自塔斯基吉遗产项目问卷的 38 项问卷，评估了 12 项研究活动的参与意愿，提供了 27 种可能的障碍和 14 种动机。该样本根据非裔美国人和拉丁裔以及农村/城市分为四个亚组。
在五个州和波多黎各，533 名参与者完成了问卷。总体而言，参与者更愿意参与非侵入性与侵入性程序，尽管所有亚组在被要求时都愿意参与研究。农村非裔美国人最愿意完成调查或唾液样本，而农村拉丁裔最不愿意。农村非裔美国人最不愿意提供脸颊拭子，而农村的拉丁裔最愿意。自我受益和对他人受益是所有亚组的前三个动机。好奇心是非裔美国人的主要动机，而获取健康信息则激发了农村拉丁裔的兴趣。主要障碍包括对副作用和被实验的恐惧、缺乏信息和缺乏保密性。
拉丁裔和非裔美国人愿意参与非治疗性研究活动，这表明他们缺乏参与可能与未被邀请有关。通过在研究设计阶段评估参与者的需求，可能会实现包容性参与，以减少参与障碍。
