Implementation and Implications of Sickle Cell Trait Screening in the NCAA

摘要 2010 年，美国大学体育协会 (NCAA) 采用了强制性镰状细胞特征 (SCT) 针对第一级 (DI) 学院和大学学生运动员的筛选政策。目前，全省学校 NCAA 的三个部门正在实施该政策。迄今为止，已发表的研究还很少 SCT在学生运动员中的实际执行还是NCAA筛选政策的体现。许多重要的 关于这一有争议的强制基因筛查计划的问题仍然存在。因此，有必要 更好地了解政策的挑战、局限性和风险，并制定解决这些问题的策略。 我们的资助 (R01HG010364-01A1) 有两个目标：1) 评估实施、风险和次要问题 NCAA SCT 筛选政策的好处，并确定内部变化的贡献者和影响 这些领域使用混合方法，2) 为当前 NCAA SCT 政策提供指导， 实践和其他类似的公共卫生政策和实践。目前，我们已完成数据采集 并正在致力于数据分析以实现目标 1。更好地解释结果并制定策略 应对政策中的挑战，我们将召开一次由选定的研究人员参加的全国峰会， 机构和政策层面的从业者和决策者。峰会参与者将审查调查结果 从目标 1 开始，审查 NCAA 和 NATA 现有的 SCT 管理指南，合作制定 根据需要修改当前程序的建议，并确定和传播最佳方案 NCAA SCT 政策未来实施的实践。我们的研究立足于政策 实施文献还将使我们能够考虑我们的研究结果如何为其他基于人口的 基因筛查工作。 该补充文件将有助于国家峰会（目标2）的规划和执行，并推进 对目标 1 结果的解释、应用、翻译和传播。具体而言， 峰会将提供一个独特的机会来分享有关程序的前所未有的信息， 不同专家组对 NCAA 政策的看法和结果。它还将使关键 检查 NCAA 政策和其他公共卫生的实际和感知的收益、风险和有效性 遗传学政策，并加快努力解决令人关注的领域。总体而言，该项目将建立一个有用的 NCAA 政策和类似政策的未来实施决策的实证基础 旨在预防疾病和保护公众健康的政策和计划。

ABSTRACT In 2010 the National Collegiate Athletic Association (NCAA) adopted a mandatory sickle cell trait (SCT) screening policy for student-athletes in its Division I (DI) colleges and universities. Currently, schools in all three divisions of the NCAA are implementing the policy. To date, very little published research is available on SCT in student-athletes or on the actual implementation of the NCAA screening policy. Many important questions remain regarding this controversial mandated genetic screening program. Therefore, it is necessary to better understand the policy's challenges, limitations, and risks, and to develop strategies to address them. Our funded grant (R01HG010364-01A1) has two aims: 1) assess implementation, risks, and secondary benefits of the NCAA SCT screening policy and determine contributors and implications of variation within these domains using a mixed methods approach and 2) provide guidance on the current NCAA SCT policy and practice and other similar public health policies and practices. Currently, we have completed data collection and are working on data analysis to address Aim 1. To better interpret the results and develop strategies to address the challenges in the policy, we will convene a national summit involving selected researchers, practitioners, and decision-makers at institutional and policy levels. Summit participants will review the findings from Aim 1, examine existing SCT management guidelines from the NCAA and NATA, collaboratively develop recommendations for modifications to current procedures as needed, and identify and disseminate best practices for future implementation of the NCAA SCT policy. Grounding of our research in the policy implementation literature will also allow us to consider how our findings can inform other population-based genetic screening efforts. This supplement will facilitate the planning and execution of the national summit (Aim 2) and advance the interpretation, application, translation, and dissemination of the results from Aim 1. Specifically, the summit will provide a unique opportunity to share unprecedented information about the procedures, perceptions, and outcomes of the NCAA policy with a diverse group of experts. It will also enable critical examination of real and perceived benefits, risks, and effectiveness of the NCAA policy and other public health genetics policies, and expedite efforts to address areas of concern. Overall, the project will establish a useful empirical foundation for decision-making concerning future implementation of the NCAA policy and similar policies and programs aimed at preventing illness and protecting the public's health.