Journal of Genetic Counseling

, Volume 26, Issue 6, pp 1292–1300 | Cite as

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy

  • Mary Anne McDonald
  • Melissa S. Creary
  • Jill Powell
  • Lori-Ann Daley
  • Charlotte Baker
  • Charmaine DM Royal
Original Research

Abstract

Sickle cell trait (SCT) is usually benign. However, there are some conditions that may lead to SCT-related problems and put athletes with the trait at particular risk. In 2010 the National Collegiate Athletic Association (NCAA) issued a policy that required all Division I (DI) student-athletes to confirm their SCT status or sign a liability waiver to opt out of testing. Athletic trainers and team physicians play key roles in the policy implementation and we examined their perceptions and practices. Between December 2013 and March 2014 we interviewed 13 head athletic trainers and team physicians at NCAA Division I colleges and universities in North Carolina. We used an interview guide with open-ended questions covering knowledge of SCT, historical screening and education practices, current implementation, and policy benefits and challenges. Participants were knowledgeable about SCT and thought the policy was beneficial in providing SCT health information to and for student-athletes. Schools varied in provision of genetic counseling, offering the waiver, SCT tests administered, and other aspects. Challenges included: insufficient guidance from the NCAA; financial considerations; and misunderstanding of the relationships of race and ancestry to SCT risk. Athletic staff found the policy valuable, but felt it needs clarity and standardization.

Keywords

Sickle cell trait Genetic screening Race Policy implementation Genetic counseling Sports medicine 

Notes

Acknowledgements

The authors are grateful to the athletic trainers and team physicians who took the time to participate in the study. We also appreciate the intellectual contributions of Doriane Coleman at Duke Law School, and Althea Grant at the Centers for Disease Control and Prevention, in the early phase of the project. This research was supported, in part, by a grant from the National Collegiate Athletic Association (NCAA), Indianapolis, Indiana. The NCAA is only a funding partner; not a driver of our research project or outcomes.

Compliance with Ethical Standards

Conflict of Interest

Author McDonald, Author Creary, Author Powell, Author Daley, Author Baker, and Author Royal declare that they have no conflicts of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained orally from all participants in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

References

  1. Acharya, K., Benjamin, H. J., Clayton, E. W., & Ross, L. F. (2011). Attitudes and beliefs of sports medicine providers to sickle cell trait screening of student athletes. Clinical Journal of Sport Medicine: Official Journal of the Canadian Academy of Sport Medicine, 21(6), 480–485. doi: 10.1097/JSM.0b013e31822e8634.CrossRefGoogle Scholar
  2. Aloe, A., Krishnamurti, L., & Kladny, B. (2011). Testing of collegiate athletes for sickle cell trait: What we, as genetic counselors should know. Journal of Genetic Counseling, 20(4), 337–340. doi: 10.1007/s10897-011-9366-9.CrossRefPubMedGoogle Scholar
  3. American Society of Hematology. (2012). Statement on Screening for Sickle Cell Trait and Athletic Participation. Retrieved July 29, 2015, from http://www.hematology.org/Advocacy/Statements/2650.aspx
  4. Baskurt, O. K., & Meiselman, H. J. (2007). Sickle cell trait should be considered asymptomatic and as a benign condition during physical activity. Journal of Applied Physiology, 103(6), 2142–2142. doi: 10.1152/japplphysiol.00886.2007.CrossRefPubMedGoogle Scholar
  5. Bediako, S. M., Lanzkron, S., Diener-West, M., Onojobi, G., Beach, M. C., & Haywood, C. (2016). The measure of sickle cell stigma: Initial findings from the improving patient outcomes through respect and trust study. Journal of Health Psychology, 21(5), 808–820. doi: 10.1177/1359105314539530.CrossRefPubMedGoogle Scholar
  6. Bernard, H. R., & Ryan, G. (2010). Analyzing qualitative data: Systematic approaches. Thousand Oaks, CA: Sage Publications.Google Scholar
  7. Blinder, M., & Russel, S. (2014). Exertional sickling: Questions and controversy. Hematology Reports, 6(5502), 66–70. doi: 10.4081/hr.2014.5502.
  8. Bonham, V. L., Dover, G. J., & Brody, L. C. (2010). Screening student athletes for sickle cell trait--a social and clinical experiment. The New England Journal of Medicine, 363(11), 997–999. doi: 10.1056/NEJMp1007639.CrossRefPubMedGoogle Scholar
  9. Brown, G. (2013, January 19). DIII approves sickle cell measure. Retrieved from http://www.ncaa.org/about/resources/media-center/news/diii-approves-sickle-cell-measure
  10. Caughey, M. C., Loehr, L. R., Key, N. S., Derebail, V. K., Gottesman, R. F., Kshirsagar, A. V., & Heiss, G. (2014). Sickle cell trait and incident ischemic stroke in the atherosclerosis risk in communities study. Stroke, 45(10), 2863–2867. doi: 10.1161/STROKEAHA.114.006110.CrossRefPubMedPubMedCentralGoogle Scholar
  11. Drehner, D., Neuhauser, K. M., Neuhauser, T. S., & Blackwood, G. V. (1999). Death among U.S. air Force basic trainees, 1956 to 1996. Military Medicine, 164(12), 841–847.PubMedGoogle Scholar
  12. Eichner, R. (2010). Sickle cell trait in sports. Current Sports Medicine Reports, 9(6), 347–351.CrossRefPubMedGoogle Scholar
  13. Eichner, R. (2011). Sickle cell considerations in athletes. Clinics in Sports Medicine, 30(3), 537–549. doi: 10.1016/j.csm.2011.03.004.CrossRefPubMedGoogle Scholar
  14. Ferrari, R., Parker, L. S., Grubs, R. E., & Krishnamurti, L. (2015). Sickle cell trait screening of collegiate athletes: Ethical reasons for program reform. Journal of Genetic Counseling, 24(6), 873–877. doi: 10.1007/s10897-015-9849-1.
  15. Ferster, K., & Eichner, R. (2012). Exertional sickling deaths in Army recruits with sickle cell trait. Military Medicine, 177(1), 56–59.Google Scholar
  16. Folsom, A. R., Tang, W., Roetker, N. S., Kshirsagar, A. V., Derebail, V. K., Lutsey, P. L., et al. (2015). Prospective study of sickle cell trait and venous thromboembolism incidence. Journal of Thrombosis and Haemostasis, 13(1), 2–9. doi: 10.1111/jth.12787.CrossRefPubMedGoogle Scholar
  17. Gardner, J. W., & Kark, J. A. (1994). Fatal rhabdomyolysis presenting as mild heat illness in military training. Military Medicine, 159(2), 160–163.PubMedGoogle Scholar
  18. Grant, A. M., Parker, C. S., Jordan, L. B., Hulihan, M. M., Creary, M. S., Lloyd-Puryear, M. A., & Atrash, H. K. (2011). Public health implications of sickle cell trait: a report of the CDC meeting. American Journal of Preventive Medicine, 41(6 Suppl 4), S435–S439. doi: 10.1016/j.amepre.2011.09.012.CrossRefPubMedGoogle Scholar
  19. Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82.CrossRefGoogle Scholar
  20. Harmon, K. G., Drezner, J. A., Klossner, D., & Asif, I. M. (2012). Sickle cell trait associated with a RR of death of 37 times in national collegiate athletic association football athletes: a database with 2 million athlete-years as the denominator. British Journal of Sports Medicine, 46(5), 325–330.Google Scholar
  21. Hendrickson, B. (2012, January 30). DII moves toward start of testing for sickle cell trait. Retrieved from http://www.ncaa.org/about/resources/media-center/news/dii-moves-toward-start-testing-sickle-cell-trait
  22. Jenerette, C. M., & Brewer, C. (2010). Health-related stigma in young adults with sickle cell disease. Journal of the National Medical Association, 102(11), 1050–1055.CrossRefPubMedPubMedCentralGoogle Scholar
  23. Jordan, L. B., Smith-Whitley, K., Treadwell, M. J., Telfair, J., Grant, A. M., & Ohene-Frempong, K. (2011). Screening U.S. college athletes for their sickle cell disease carrier status. American Journal of Preventive Medicine, 41(6 Suppl 4), S406–S412. doi: 10.1016/j.amepre.2011.09.014.CrossRefPubMedGoogle Scholar
  24. Jung, A. P., Selmon, P. B., Lett, J. L., & Petrella, J. K. (2011). Survey of sickle cell trait screening in NCAA and NAIA institutions. The Physician and Sportsmedicine, 39(1), 158–165. doi: 10.3810/psm.2011.02.1873.CrossRefPubMedGoogle Scholar
  25. Kark, J. (2000, December 20). Sickle cell trait. Retrieved from http://sickle.bwh.harvard.edu/sickle_trait.html
  26. Kark, J., Labotka, R., Gardner, J., & Ward, F. (2010). Prevention of exercise related death unexplained by preexisting disease associated with sickle cell trait (SCT) without hemoglobin screening or Hb specific management. Blood, 116(21), 945.Google Scholar
  27. Kark, J., Posey, D., Schumacher, H., & Ruehle, C. (1987). Sickle-cell trait as a risk factor for sudden death in physical training. The New England Journal of Medicine, 317(13), 781–787.Google Scholar
  28. Key, N., & Derebail, V. (2010). Sickle-cell trait: Novel clinical significance, (2010), Hematology, 418–422. doi: 10.1182/asheducation-2010.1.418.
  29. Koopmans, J., Cox, L. A., Benjamin, H., Clayton, E. W., & Ross, L. F. (2011). Sickle cell trait screening in athletes: Pediatricians’ attitudes and concerns. Pediatrics, 128(3), 477–483. doi: 10.1542/peds.2011-0187.PubMedGoogle Scholar
  30. Lane, P. (2001). Newborn Screening for Hemoglobin Disorders. Retrieved February 24, 2017, from http://sickle.bwh.harvard.edu/screening.html
  31. Lawrence, R., & Shah, G. (2014). Athletes’ perceptions of National Collegiate Athletic Association-mandated sickle cell trait screening: insight for academic institutions and college health professionals. Journal of American College Health, 62(5), 343–350.Google Scholar
  32. MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998). Codebook development for team-based qualitative analysis, Cultural Anthropology Methods 10(2), 31–36.Google Scholar
  33. Miles, M. B., Huberman, A. M., & Saldana, J. (2013). Qualitative data analysis: A Methods sourcebook (Third ed.). Thousand Oaks, CA: Sage Publications.Google Scholar
  34. Mitchell, B. L. (2007). Sickle cell trait and sudden death--bringing it home. Journal of the National Medical Association, 99(3), 300–305.PubMedPubMedCentralGoogle Scholar
  35. Naik, R. P., & Haywood, C. (2015). Sickle cell trait diagnosis: Clinical and social implications. Hematology / the Education Program of the American Society of Hematology. American Society of Hematology. Education Program, 2015(1), 160–167. doi: 10.1182/asheducation-2015.1.160.
  36. National Collegiate Athletic Association. (2014). 2014–15 NCAA Sports Medicine Handbook. Retrieved from http://www.ncaapublications.com/productdownloads/MD15.pdf
  37. National Institutes of Health, National, Heart, Lung, and Blood Institute. (2016, August 2). How Is Sickle Cell Disease Diagnosed? - NHLBI, NIH. Retrieved February 21, 2017, from https://www.nhlbi.nih.gov/health/health-topics/topics/sca/diagnosis
  38. Natowicz, M. R., & Alper, J. S. (1991). Genetic screening: Triumphs, problems, and controversies. Journal of Public Health Policy, 12(4), 475–491.CrossRefPubMedGoogle Scholar
  39. Njororai, W. W. S. (2012). Challenges of being a black student athlete on U.S. College Campuses. Journal of Issues in Intercollegiate Athletics, 5, 40–63.Google Scholar
  40. NVivo qualitative data analysis software; QSR International Pty Ltd. Version 10. (2012).Google Scholar
  41. Ojodu, J., Hulihan, M. M., Pope, S. N., & Grant, A. M. (2014). Incidence of sickle cell trait-United States, 2010. Morbidity and Mortality Weekly Report, 63(49), 1155.PubMedGoogle Scholar
  42. Quick, H. (2011). Privacy for safety: The NCAA sickle cell trait testing policy and the potential for future discrimination. Iowa Law Review, 97, 665–692.Google Scholar
  43. Stein, R. (2010, September 20). Colleges mandate sickle cell testing. The Washington Post. Retrieved from http://www.washingtonpost.com/wp-dyn/content/article/2010/09/19/AR2010091904763.html
  44. Tarini, B. A., Brooks, M. A., & Bundy, D. G. (2012). A policy impact analysis of the mandatory NCAA sickle cell trait screening program. Health Services Research, 47(1 Pt 2), 446–461. doi: 10.1111/j.1475-6773.2011.01357.x.CrossRefPubMedPubMedCentralGoogle Scholar
  45. The Sickle Cell Disease Association of America. (2015a). Sickle Cell Disease Global. Retrieved from http://www.sicklecelldisease.org/index.cfm?page=scd-global
  46. The Sickle Cell Disease Association of America. (2015b). Sickle cell trait and athletics: Executive summary. Retrieved July 20, 2015, from http://www.sicklecelldisease.org/index.cfm?page=sickle-cell-trait-athletics
  47. Thompson, A. A. (2013). Sickle cell trait testing and athletic participation: a solution in search of a problem?. Hematology. American Society of Hematology. Education Program, (1), 632–637. doi: 10.1182/asheducation-2013.1.632.
  48. Tsaras, G., Owusu-Ansah, A., Boateng, F. O., & Amoateng-Adjepong, Y. (2009). Complications associated with sickle cell trait: A brief narrative review. The American Journal of Medicine, 122(6), 507–512. doi: 10.1016/j.amjmed.2008.12.020.CrossRefPubMedGoogle Scholar
  49. Wailoo, K. (2006). Stigma, race, and disease in 20th century America. Lancet, 367(9509), 531–533. doi: 10.1016/S0140-6736(06)68186-5.CrossRefPubMedGoogle Scholar
  50. Witt, G. (2010). Autopsy cites sickle cell trait in A&T death. Greensboro News & Record, p. A1. http://www.greensboro.com/sports_college/track/autopsy-cites-sickle-cell-trait-in-a-t-death/article_b22ac673-3ab4-503f-b3d6-b35d69626e4e.html. Accessed 24 May 2017.

Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  • Mary Anne McDonald
    • 1
  • Melissa S. Creary
    • 2
  • Jill Powell
    • 1
  • Lori-Ann Daley
    • 1
  • Charlotte Baker
    • 3
  • Charmaine DM Royal
    • 1
    • 4
  1. 1.Center on Genomics, Race, Identity, Difference, Duke UniversityDurhamUSA
  2. 2.Department of Health Management and Policy, University of MichiganAnn ArborUSA
  3. 3.Institute of Public Health, Florida A&M UniversityTallahasseeUSA
  4. 4.Department of African and African American Studies, Duke UniversityDurhamUSA

Personalised recommendations