Overcoming Genetic Literacy Barriers Among Underserved Minorities

描述(由申请人提供)：人类基因组计划取得的进展引发了人们的担忧，即公众是否愿意利用这些信息做出知情的健康决定。作为提高普通公众遗传素养的一项战略，现已有工具使个人能够记录其家庭健康史。然而，公众是否能够获得这些工具，了解如何使用它们，并通过采取健康保护行动来应用信息，人们知之甚少，这可能会损害这些工具的潜在有效性。尤其是少数群体，由于无法获得文化和语言上适当的健康信息，在有效使用这类工具方面可能面临明显的障碍。因此，拟议研究的首要目标是了解非洲裔美国人和拉美裔人口对家庭历史工具的反应，并确定战略，使这些群体更适合和更容易获得这些工具。这项研究的目标有三个。首先，这项研究将通过4个焦点小组评估目标人群对家族史对健康的作用的理解和信念。还将确定宣传提高家族史认识的公共运动以及用于获取健康信息的沟通渠道。其次，这项研究将检查现有的家族史工具，包括可读性、通俗语言以及对非裔美国人和拉美裔美国人的文化和语言适当性。将使用成熟的技术评估可读性和通俗易懂的语言。将通过在社区中再举办4个重点小组来审查文化和语言的适当性。第三，这项研究将通过采访20名非洲裔美国人和拉美裔社区成员，对现有的纸质和基于计算机的收集家族史信息的工具进行用户测试。为了实现这些目标，研究小组成员将发起合作伙伴关系，并与社区组织合作，进行拟议的研究。研究结果将使人们更好地了解少数群体的遗传素养需求，并查明获取和利用家族史工具促进健康和预防疾病的障碍。将利用成果改进现有的家庭工具，使少数群体能够理解和使用这些工具(即，在文化和语言上适当)，并开发传播方法(即，交付渠道)，以便工具可以有效地惠及这些群体。这些有针对性的家族史工具和传播方法将在未来的研究中开发和评估，以确定这些工具在影响对改善健康结果至关重要的因素方面的效力。这项研究的最终目标是通过使用更适当的工具和交付方法，缩小健康差距，改善服务不足的少数群体的健康结果。

DESCRIPTION (provided by applicant): Advances stemming from the Human Genome Project have prompted concerns about the general public's readiness to utilize this information to make informed health decisions. As a strategy to increase genetic literacy among the general public, tools are now available to enable individuals to record their family health history. However, little is known about whether the public is able to access the tools, understand how to use them, and apply the information by taking health protective actions, which can compromise the potential effectiveness of the tools. Minority populations, in particular, may face distinctive barriers in the effective use of such tools due to lack of access to culturally and linguistically appropriate health information. As such, the overarching goal of the proposed study is to understand how African American and Latino populations respond to family history tools and to identify strategies to make these tools more appropriate and accessible to these groups. The objectives of this study are threefold. First, the study will assess understanding and beliefs about the role of family history for health among target populations through 4 focus groups. Awareness of public campaigns promoting family history awareness and communication channels used for obtaining health information will also be identified. Second, the study will examine existing family history tools for readability, plain language, and cultural and linguistic appropriateness for African Americans and Latinos. Readability and plain language will be assessed using well-established techniques. Cultural and linguistic appropriateness will be examined by conducting an additional 4 focus groups in the community. Third, this study will conduct user testing of existing print and computer-based tools for collecting family history information by interviewing a total of 20 African American and Latino community members. To accomplish these objectives, study team members will initiate partnerships and collaborate with community organizations to conduct the proposed study. Study findings will provide a greater understanding of the genetic literacy needs of minority populations and identify barriers for accessing and utilizing family history tools for health promotion and disease prevention. Results will be used both to refine existing family tools to make them understandable and accessible to minority groups (i.e., culturally and linguistically appropriate) and to develop dissemination approaches (i.e., delivery channels) so that tools may effectively reach these groups. These targeted family history tools and dissemination approaches will be developed and evaluated in future research to determine the efficacy of these tools in influencing factors that are essential for improved health outcomes. The ultimate goal of this research is to reduce health disparities and improve health outcomes among underserved minorities through the use of more appropriate tools and delivery approaches.