Linking Education to Action: A Program to Increase Research Participation

描述(申请人提供)：公正的伦理原则要求研究的利益和负担在人群中平均分配，但少数群体和妇女在研究中的代表性仍然不足，特别是在与癌症结果有关的试验和基因研究中。调查团队最近在近400名受过教育的、专业的非裔美国女性中收集的数据显示，只有52%的人认为在美国进行的研究是道德的，38%的人曾参与过与健康相关的研究，22%的人自己寻找研究机会。此外，更多的女性愿意参与基因研究，而更多的女性愿意参与病历回顾研究或临床试验，而对于临床试验和病历回顾研究，女性完全不愿意参与的比例是相同的。这些都是令人信服的发现，如果我们要制定计划，在少数族裔妇女中更多地参与各种类型的研究，就需要更多的洞察力。这项拟议的研究利用了梅奥诊所和Links，Inc.之间的伙伴关系，Links是一个专业的非裔美国妇女志愿者服务组织，覆盖全国。其目的是：(1)了解与参与癌症预防和治疗试验、基因研究和涉及病历审查的研究有关的具体伦理问题，并找出有关旨在保护人类研究对象的法规方面的知识差距；(2)确定可接受的基于网络的方法，以提供文化上量身定做的、可理解的、可广泛传播的关于研究参与的教育和信息；以及(3)在选定的链接章节中开发和试点基于网络的“教育到行动”计划，评估与研究中的伦理标准相关的知识和态度的变化，衡量参与研究的行为意愿，在ResearchMatch注册表中实际登记为志愿者，以及自我报告的研究志愿者精神的对等讨论。这些目标将通过使用涉及325名非裔美国成年女性的定性(目标1和目标2)和定量(目标3)研究方法，并通过利用Links，Inc.的专业知识、成员资格和组织结构来实现，最终得出一个新颖的、基于网络的计划，该计划展示了减少非裔美国女性参与研究的伦理担忧的可行性和成功，并提高了关于确定适当的临床研究机会的知识和理解。

DESCRIPTION (provided by applicant): The ethical principle of justice requires that the benefits and burdens of research are equally distributed across populations, yet minorities and women are still underrepresented in research, particularly in trials related to cancer outcomes and in genetic studies. Data recently collected by the investigative team among nearly 400 educated, professional, African American women, a demographic that is understudied yet well-positioned to promote and engage in research, demonstrated that only 52% believed research conducted in the U.S. is ethical, 38% had ever been a participant in a health-related research study and 22% sought out a research opportunity on their own. Furthermore, more women were willing to participate in a genetic study than in a medical record review study or a clinical trial and the percentage of women "not at all willing" to participate was the same for a clinical trial a for a medical record review study. These are compelling findings that require greater insight if we are to develop programs to increase participation in a variety of types of research studies among minority women. The proposed study leverages a partnership between Mayo Clinic and The Links, Incorporated, a professional, African American women's volunteer service organization with national reach. The aims are to: (1) understand specific ethical concerns related to participation in cancer prevention and treatment trials, genetic studies, and research involving medical record review, and identify gaps in knowledge regarding the regulations designed to protect human research subjects; (2) identify acceptable web-based approaches to providing education and information about research participation that are culturally tailored, understandable, and feasible to disseminate broadly; and (3) to develop and pilot-test an "education-to-action" web-based program among selected Links Chapters, assessing changes in knowledge and attitudes related to ethical standards in research and measuring behavioral intention to participate in research, actual registration as a volunteer in the ResearchMatch registry, and self-reported peer-to-peer discussion of research volunteerism. These aims will be accomplished by using qualitative (Aims 1 and 2) and quantitative (Aim 3) research methodologies involving 325 African American adult women and by leveraging the expertise, membership and organizational structure of The Links, Inc., to ultimately arrive at a novel, web-based program that demonstrates feasibility and success in decreasing ethical concerns about research participation among African American women and improving knowledge and understanding with regard to identifying appropriate clinical research opportunities.