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. The parent grant 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. This supplement will allow for the provision of more appropriate and equitable incentives for the expected 13,305 survey respondents, which will increase our capacity to obtain a robust response rate and achieve our Aims.

Public Health Relevance

The sickle cell trait (SCT) screening program of the National Collegiate Athletic Association (NCAA) is regarded as one of the largest mandated genetic screening programs in the United States (US). Estimates suggest that over 2,000 NCAA Division I student-athletes with SCT will be identified under the screening policy and that, without intervention, about seven NCAA Division I student-athletes would die suddenly from a complication of SCT over a 10-year period. Our proposed project will facilitate the identification and resolution of issues that may impede the successful detection of SCT carriers and the application of effective interventions; it also aims to advance research and practice pertaining to the implementation of similar public health policies that target healthy subpopulations deemed to be at disproportionate risk.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Kaufman, Dave J
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Duke University
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United States
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