Implementation and Implications of Sickle Cell Trait Screening in the NCAA

镰状细胞性状筛查在 NCAA 中的实施及其意义

• 批准号: 10471742
• 负责人: CHARMAINE DAWN MARIE ROYAL
• 金额: $ 9.61万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-20 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10471742
• 关键词: Address; Adopted; Affect; African American student; Area; Athletic; Attitude; Behavior; Benefits and Risks; Cessation of life; Complication; Data; Decision Making; Detection; Dimensions; Education; Effectiveness; Financial Hardship; Foundations; Future; Genetic; Genetic Counseling; Genetic Risk; Genetic Screening; Guidelines; Head; Health; Health Policy; Individual; Institution; Institutional Policy; Instruction; Intervention; Knowledge; Legal; Literature; Modification; Monitor; North Carolina; Outcome; Participant; Perception; Physicians; Policies; Procedures; Public Health; Publishing; Race; Recommendation; Reporting; Research; Research Personnel; Resolution; Risk; Sampling; Schools; Sickle Cell Trait; Source; Sports; Stigmatization; Structure; Surveys; Telephone Interviews; Testing; United States; Universities; Variant; Work; base; behavioral outcome; college; cost; economic cost; effective intervention; ethical legal social implication; experience; frontier; implementation outcomes; implementation process; member; mortality; population based; prevent; programs; risk minimization; screening; screening policy; screening program; social stigma; student athlete; symposium; trait; waiver

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. Results from a preliminary study we conducted of NCAA DI institutions in North Carolina reveal that athletic staff at most of the schools found it beneficial to know the SCT status of their student-athletes, but felt they need clearer guidance and instructions from the NCAA on the policy implementation. We also found that that some athletic staff and student-athletes believed that black students were the only ones at risk and should be the targets for screening. There has been little education for coaches, athletic trainers, and student-athletes on reasons for screening all student-athletes. Of the few student-athletes with SCT in our sample, only about one-half changed the way they participate in their sport based on their status. These and our other preliminary findings provide important information concerning the procedures, perspectives, and behavioral outcomes at some institutions in one US state. A larger and more representative sample is needed to better understand the policy’s challenges, limitations, and risks, and to develop strategies to address them. This proposal builds upon our previous work in North Carolina. The Specific Aims are to: 1) assess implementation, risks, and secondary benefits of the NCAA SCT screening policy and determine contributors to and implications of variation within these domains and 2) provide guidance on the current NCAA SCT policy and practice and other similar public health policies and practices. For Aim 1, data will be generated from online surveys and semi-structured telephone interviews with athletic staff and student-athletes at NCAA DI, DII, and DIII colleges and universities. For Aim 2, we will collaborate with the NCAA to convene a national summit involving selected stakeholders at institutional and policy levels to review the findings from Aim 1 and develop best practice recommendations for future implementation of the SCT screening policy. The proposed research will provide unprecedented and invaluable information on the procedures, perceptions, and outcomes of the NCAA SCT screening policy. It will uncover real and perceived benefits, risks, and effectiveness of the policy, and facilitate efforts to address the areas of concern. The project will also 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.

摘要 2010年，全国大学生体育协会（NCAA）通过了一项强制性的镰状细胞特征（SCT）。 在其第一组（DI）学院和大学的学生运动员筛选政策。目前，所有学校 NCAA的三个部门正在实施这项政策。到目前为止，很少有已发表的研究 关于SCT在学生运动员或NCAA筛选政策的实际实施。许多重要 关于这项有争议的强制性基因筛查计划，仍存在一些问题。 我们对北卡罗来纳州的NCAA DI机构进行的初步研究结果显示， 大多数学校的体育工作人员发现，了解学生运动员的SCT状态是有益的，但他们认为， 他们需要NCAA在政策执行方面提供更明确的指导和指示。我们还发现 一些体育工作人员和学生运动员认为，黑人学生是唯一有风险的人， 成为筛选的对象。对教练、运动训练员和学生运动员的教育很少 对所有学生运动员进行筛选的原因。在我们的样本中，少数患有SCT的学生运动员中， 一半的人根据他们的地位改变了他们参与体育运动的方式。这些和我们其他的初步调查 研究结果提供了有关程序，观点和行为结果的重要信息， 美国一个州的一些机构。为了更好地了解这一点，需要更大和更具代表性的样本。 政策的挑战、限制和风险，并制定应对策略。 这个建议建立在我们以前在北卡罗来纳州的工作基础上。具体目标是：（1）评估 NCAA SCT筛查政策的实施，风险和次要好处，并确定贡献者 和这些领域内的变化的影响和2）提供对当前NCAA SCT的指导 政策和做法以及其他类似的公共卫生政策和做法。对于目标1，将生成数据 从在线调查和半结构化的电话采访体育工作人员和学生运动员， NCAA DI，DII和DIII学院和大学。对于目标2，我们将与NCAA合作， 由机构和政策层面的选定利益攸关方参加的国家首脑会议， 目标1：为今后实施SCT筛查政策制定最佳做法建议。 拟议的研究将提供有关程序的前所未有的宝贵信息， NCAA SCT筛查政策的看法和结果。它将揭示真实的和感知的好处， 风险和政策的有效性，并促进解决关切领域的努力。该项目还将 建立一个有用的经验基础，决策有关未来实施的NCAA 政策和类似的政策和计划，旨在预防疾病和保护公众的健康。