9
This article was downloaded by: [University of Tennessee At Martin] On: 06 October 2014, At: 04:54 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Journal of American College Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/vach20 Athletes’ Perceptions of National Collegiate Athletic Association–Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and College Health Professionals Raymona H. Lawrence DrPH, MPH a & Gulzar H. Shah PhD, MStat, MS a a Jiann Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia Accepted author version posted online: 14 Mar 2014.Published online: 21 May 2014. To cite this article: Raymona H. Lawrence DrPH, MPH & Gulzar H. Shah PhD, MStat, MS (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, DOI: 10.1080/07448481.2014.902840 To link to this article: http://dx.doi.org/10.1080/07448481.2014.902840 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions

Athletes’ Perceptions of National Collegiate Athletic Association–Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and College Health Professionals

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Page 1: Athletes’ Perceptions of National Collegiate Athletic Association–Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and College Health Professionals

This article was downloaded by: [University of Tennessee At Martin]On: 06 October 2014, At: 04:54Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House,37-41 Mortimer Street, London W1T 3JH, UK

Journal of American College HealthPublication details, including instructions for authors and subscription information:http://www.tandfonline.com/loi/vach20

Athletes’ Perceptions of National Collegiate AthleticAssociation–Mandated Sickle Cell Trait Screening:Insight for Academic Institutions and College HealthProfessionalsRaymona H. Lawrence DrPH, MPHa & Gulzar H. Shah PhD, MStat, MSa

a Jiann Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GeorgiaAccepted author version posted online: 14 Mar 2014.Published online: 21 May 2014.

To cite this article: Raymona H. Lawrence DrPH, MPH & Gulzar H. Shah PhD, MStat, MS (2014) Athletes’ Perceptions ofNational Collegiate Athletic Association–Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and CollegeHealth Professionals, Journal of American College Health, 62:5, 343-350, DOI: 10.1080/07448481.2014.902840

To link to this article: http://dx.doi.org/10.1080/07448481.2014.902840

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) containedin the publications on our platform. However, Taylor & Francis, our agents, and our licensors make norepresentations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of theContent. Any opinions and views expressed in this publication are the opinions and views of the authors, andare not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon andshould be independently verified with primary sources of information. Taylor and Francis shall not be liable forany losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoeveror howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use ofthe Content.

This article may be used for research, teaching, and private study purposes. Any substantial or systematicreproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in anyform to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

Page 2: 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, VOL. 62, NO. 5

Major Article

Athletes’ Perceptions of National CollegiateAthletic Association–Mandated Sickle Cell Trait

Screening: Insight for Academic Institutionsand College Health Professionals

Raymona H. Lawrence, DrPH, MPH; Gulzar H. Shah, PhD, MStat, MS

Abstract. Objective: The study objective was to explore ath-letes’ perspectives of National Collegiate Athletic Association(NCAA)–mandated sickle cell trait (SCT)–screening policy by ex-amining race- and gender-related differences in athletes’ percep-tions regarding risk of having SCT and concern about loss of playingtime. Participants: Participants were 259 athletes at a southeast-ern United States campus during April–August of 2010. Methods:Athletes completed a 21-question survey. Results: The majority ofathletes (81.7%) perceived that they would have a high level of con-cern if found to carry the SCT. African Americans were 9.07 timesmore likely than Caucasians to perceive risk of having the SCT. Themajority of athletes disagreed (38.4%) or did not know (50.8%) ifthey would lose playing time related to carrying the SCT. Con-clusion: Campus health professionals must be aware of athletes’perspectives on NCAA’s SCT screening so that athletes are notunnecessarily subjected to stress or harm.

Keywords: athletes’ perspectives, discrimination, NationalCollegiate Athletic Association (NCAA), sickle cell trait

In the United States, sickle cell disease (SCD) andsickle cell trait (SCT) primarily affect African Amer-icans. Clinically, it is imperative to distinguish between

SCD and SCT. Between 80,000 and 100,000 Americanshave SCD.1,2 SCD occurs in about 1 in every 500 AfricanAmerican births, compared with 1 in every 36,000 HispanicAmerican births, and 1 in every 100,000 Caucasian births.3

SCD often causes anemia, episodes of pain, organ damage,and can cause great social and financial burden on families

Dr Lawrence and Dr Shah are with the Jiann Ping Hsu Collegeof Public Health at Georgia Southern University in Statesboro,Georgia.

Copyright © 2014 Taylor & Francis Group, LLC

affected by the disease. Therefore, SCD is recognized as amajor public health concern, as it can dramatically affect thehealth and quality of life of those diagnosed with the disease.

Although SCD is noted as a substantial health problem,SCT generally has been regarded as a benign condition.About 2 million Americans, or 1 in 12 African Americans,carry the SCT.3 People with SCT do not typically experiencethe anemia or joint pains that people with SCD have, andmost often have a normal life expectancy. However, aware-ness of SCT status, especially during childbearing years, isimportant because 2 individuals who carry the SCT have a25% chance of conceiving a child who has SCD.

In addition to the reproductive implications of carrying theSCT, some research has identified associations between SCTand death from extreme exertion.4,5 Heat, altitude, or otherextreme conditions can cause the cells of an individual withSCT to change into a sickle shape and clog blood vessels,which can lead to problems with the spleen or kidney, re-nal failure, muscle breakdown (exertional rhabdomyolysis),venous thromboembolism, or sudden death.6–9 These occur-rences are rare. Therefore, controversy continues to surroundSCT and its association with exercise-related morbidity andsudden death because it is difficult to determine through au-topsy if sickled cells are the cause of death or are the resultof death-related hypoxia (lack of oxygen).3,10

Knowledge of SCT became increasingly important for col-legiate athletic trainers, coaches, physicians, and health edu-cators (hereafter referred to as college health professionals)after the death of Dale Lloyd, an athlete at Rice Universitywho carried the SCT, opened the door to major revisionsto the National Collegiate Athletic Association’s (NCAA’s)SCT-screening policy. Lloyd’s death after collapsing at

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football practice was attributed to acute exertional rhabdomy-olysis (rapid breakdown of muscle tissue due to extreme ex-ertion), which was associated with SCT. Lloyd’s family suedthe NCAA and Rice University. As a result of this lawsuit,the NCAA agreed to require SCT testing and subsequentlydeveloped a new policy, implemented in 2010, which initiallymandated SCT testing for all Division I collegiate athletesand was later extended to Divisions II and III. Therefore, rou-tine SCT testing is now part of the preparticipation medicalexamination all NCAA-governed athletes complete unlessthe athlete (1) provides results of a prior SCT-screening test,or (2) signs a written release.11

Most babies in the United States are screened for SCTat birth.12,13 However, many times this information is notretained throughout the life span, and often athletes are un-aware of their SCT status when entering the college athleticenvironment.14 It is estimated that 3%–4% of NCAA Divi-sion I football players have SCT,15 and, unfortunately, thedeath of an athlete and subsequent lawsuit is not isolated tothe Dale Lloyd case. Other instances of note are that the Uni-versity of Central Florida was found to be negligent in thedeath of football player Ereck Plancher in June 2011,16 and alawsuit was filed against Ole Miss in the death of 20-year-oldfootball player Bennie Abram, which occurred in Februaryof 2010.17 Several athletes’ deaths were attributed to SCTduring the years 2000–2010 with the Lloyd lawsuit initiat-ing the NCAA-mandated SCT screening for all athletes whoplay NCAA-governed sports on college campuses regardlessof race or ethnicity.11

Prior to the NCAA’s SCT-screening mandate, testing forSCT was not unheard of among NCAA Division I-A colleges.A study by Clarke et al18 found that 59 (64%) of 92 partici-pating colleges in Division I Football Bowl Subdivision werescreening athletes for SCT. African American athletes werescreened exclusively in 44 colleges (76%), and 9 colleges(21%) screened all athletes.18 Many colleges and universi-ties voluntarily screened for SCT carrier status before theNCAA made SCT screening a policy. However, beginning in2010, all Division I, NCAA-governed colleges and universi-ties were required to carry out the SCT-screening mandate,with little to no instruction on how to safely and effectivelyimplement this policy on their campuses.

The Healthy Campus 2020 initiative charges campus lead-ers to help students attain high-quality, longer lives free ofpreventable disease, disability, injury, and premature death.19

However, without specifications as to how to implement thispolicy, implementation was initially left up to campus healthleaders and therefore sparked concern among SCD/SCT ex-perts and advocates. One area of concern for implementationwas the use of the Sickledex test. The Sickledex test is a low-cost (less than $10), qualitative screening procedure used bymost athletic teams to test for SCT status. The Sickledextest is less accurate than the preferred method of hemoglobinelectrophoresis, which costs over $100 per athlete, and Sick-ledex is known to be limited by false-positive and false-negative results.20,21 Experts in the field of SCD/SCT havereservations about the policy, labeling it as a social and clin-

ical experiment1 and expressing concerns about the lack ofconsistency of SCT health education delivery, the possibilityof discrimination towards athletes who are SCT carriers,22

and protection of the individual rights of athletes as it relatesto stigmatization or loss of playing time for the athlete.12

Studies have shown that pediatricians23 and sports medicineproviders14 believe that there is a possibility of discrimina-tion towards athletes regarding current and future athleticopportunities and the ability to obtain insurance. It is alsoimportant to note the position of the American Society ofHematology (ASH) on SCT screening in athletics. ASH isthe world’s leading professional society concerned with thecauses and treatments of blood disorders. ASH policy statesthat the organization (1) does not support SCT testing or dis-closure of SCT status as a prerequisite for participation inathletic activities, (2) recommends universal precautions toreduce exertion-related injury and death, and (3) believes thatthe NCAA policy has the potential to harm the student athleteand the larger community of SCT carriers.24 To understandexperts’ concerns regarding discrimination in screening, it isimportant to briefly describe the history of SCT screeningas it relates to race in the United States. SCT screening hashistorically been plagued with issues of the politics of racewith African Americans voicing concerns about genocide,unequal access to health care and health care funding, andbroken promises related to medical breakthroughs—likelystemming from the effects of the legacy of the TuskegeeSyphilis Study.25

Despite the multiplicity of concerns regarding SCT test-ing from clinicians and community advocates, these issueshave not been adequately explored in any empirical study in-volving athletes who are actively participating in an NCAA-governed athletic program. We were particularly interestedin the SCD/SCT experts’ concerns regarding the possibilityof discrimination toward athletes who are SCT carriers andwanted to determine if the athletes shared these same con-cerns. We also recognized the need for further research to im-prove understanding of “the psychosocial effects of targetedscreening on individuals.”22(pS437) Therefore, the purpose ofthis research article is to quantitatively examine race- andgender-related differences in athletes’ perceptions regardingrisk of having the SCT, and level of concern that if diagnosedwith SCT, he/she would be given less playing time.

METHODS

Theoretical FoundationsCritical race theory26 was used as the conceptual lens

through which the entire study was viewed, and it was specif-ically used to determine how, if at all, race affected athletes’perceptions of SCT screening and to determine if AfricanAmerican athletes perceived the implications of the NCAA’sSCT-screening policy to be more severe than did Caucasianathletes. Constructs of the Health Belief Model27 were used todetermine perceptions about susceptibility, severity, benefits,and barriers of SCT and to determine the athletes’ percep-tions of SCT testing.

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Student Athletes’ Perceptions of Sickle Cell Trait Screening

Study Setting and ParticipantsThis research uses primary data collected at a midsized

university in the southeastern United States. The study cam-pus mandated SCT screening for its athletes before theNCAA policy was released. The eligibility requirements toparticipate in this study were being male or female collegestudents 18–24 years of age, currently attending school atthe study campus, and current members of the intercollegiateathletic teams. The study used a census (rather than a sample)of all 270 athletes who were on intercollegiate athletic teamsat the study campus during April–August 2010. All studyprocedures were reviewed and approved by the InstitutionalReview Board of the study campus.

InstrumentationAt the time of the study, there were no validated in-

struments specific to athletes’ perceptions of the NCAA’sSCT-screening mandate. Therefore, the researchers devel-oped a 21-question paper-and-pencil survey based on theSickle Cell Disease Assessment Survey.28 Knowledge ques-tions were based upon the online sickle cell education moduleand quiz developed by Piedmont Health Services and SickleCell Agency.29 Athletes were asked questions concerningawareness that they had been tested for SCT, perceptions ofvoluntary and mandatory SCT testing, risk of having SCT,knowledge of SCD/SCT, and perceptions of discriminationand loss of playing time as a result of carrying the SCT.Before data collection, the instrument was pretested on 14students: 10 white males, 3 white females, and 1 black male.Changes were made to the survey based on the students’feedback.

Data CollectionThe researcher trained athletic trainers from each intercol-

legiate athletic team on the study campus to administer thesurvey to athletes. Training included instructions on how toadminister the survey, stressed the importance of confiden-tiality, and emphasized the fact that athlete participation inthe survey was voluntary and that athletes were not to beencouraged by the athletic trainers in any way to participatein the study. Upon completion of training, athletic trainersadministered the survey to the athletes. All athletes, of aparticular team, met in a central location that was predeter-mined by the researcher and the team’s athletic trainer as aquiet, comfortable environment that was suitable for surveycompletion. The athletic trainer obtained written informedconsent from all athletes via the form provided by the re-searcher. After completion of the survey, the athlete returnedthe survey in a sealed envelope, provided by the researcher,to ensure confidentiality. Neither the athletic trainer nor theresearcher were aware if the survey contained in the enve-lope was completed or not at the time. The athletic trainerthen returned all sealed envelopes to the larger envelope pro-vided by the researcher and returned the entire packet to theresearcher. Athletes were not incentivized for completingthe survey because it is against NCAA policy to incentivizeathletes.

Data AnalysisThe dependent variables for this research were “perception

about receiving less playing time if diagnosed with SCT,”which was used as a proxy to understand athletes’ perceptionsof discrimination via loss of playing time, and “perceptionsabout risk of having the SCT,” measured by a 5-point Likertscale of Strongly agree to Strongly disagree. The statementused to measure the level of agreement about less playingtime was “If I were diagnosed with sickle cell trait, I wouldbe given less playing time,” and the statement used to measurethe athlete’s perceived risk of having SCT was “I am at riskof having the sickle cell trait.”

We initially modeled our data using ordered logit, but theassumption of parallel lines was violated. In addition, the5-point Likert scale resulted in small- and zero-sized cells.For our final multivariate model, we converted the 5-pointscale into a 3-point scale: 1 = Strongly agree or agree, 2= Don’t know, and 3 = Strongly disagree or disagree. Forthe multivariate analysis of these ordinal dependent vari-ables, our final model was multinomial logistic regression(NOMREG command in SPSS; IBM SPSS, Armonk, NewYork).

RESULTSTwo hundred seventy surveys were distributed to the ath-

letes on campus. Of the 270 surveys distributed, 259 werereturned completed in a sealed envelope. Of the 259 ath-letes surveyed, 61% were males and 39% females, 27.8%black/African American, 0.4% Native Hawaiian or otherPacific Islander, 68.0% white/Caucasian, and 1.9% Hispanicor Latino. Among this cohort, 10.8% played baseball, 2.7%golf, 5.0% women’s swimming and diving, 10.4% track andfield, 34.4% football, 4.2% women’s soccer, 6.6% men’s soc-cer, 4.2% volleyball, 3.9% women’s basketball, 2.3% men’sbasketball, 3.9% women’s tennis, and 7.3% softball. The ma-jority of respondents were white/Caucasian (68.0%), male(61%), football players (34.4%), and had adequate sicklecell knowledge (76.1%). The demographics of the studypopulation are presented in Table 1.

In relation to mandatory genetic testing, 16.2% were notat all likely to support, 15.4% were somewhat likely, 34.4%were neither likely nor unlikely, 22.0% were somewhat likely,and 12.0% were very likely to support. A total of 3.9% ofthe athletes strongly agreed they were at risk for SCT, 9.7%agreed, 25.7% didn’t know, 28.8% disagreed, and 31.9%strongly disagreed they were at risk for SCT. Approximately26.7% of the athletes perceived that they would have a veryhigh level of concern if found to have the SCT, 55.0% per-ceived a high level, 8.9% would be unconcerned, 7.8% per-ceived a low level, and 1.6% perceived that they would havea very low level of concern if found to have SCT. Morethan one third of participants in the study (34.4%) were in-different on support of mandatory genetic testing, 31.9%strongly disagreed they were at risk for SCT, and 55.0% werehighly concerned about SCT. When questioned “If I werediagnosed with sickle cell trait, I would be given less playing

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TABLE 1. Demographic Characteristics andPerceptions About Sickle Cell Trait

Variable n Valid percent

GenderMale 158 61.0Female 101 39.0

Race/EthnicityBlack/African American 72 27.8Other (Native Hawaiian or other

Pacific Islander, Hispanic orLatino, other)

11 4.2

White or Caucasian 176 68.0Sports played

Baseball 28 10.8Golf 7 2.7Women’s swimming and diving 13 5.0Track and field 27 10.4Football 89 34.4Women’s soccer 11 4.2Men’s soccer 17 6.6Volleyball 11 4.2Women’s basketball 10 3.9Men’s basketball 6 2.3Women’s tennis 10 3.9Softball 19 7.3

How likely to support mandatorygenetic testing?

Not at all likely 42 16.2Somewhat likely 40 15.4Neither likely or unlikely 89 34.4Somewhat likely 57 22.0Very likely 31 12.0

Adequate sickle cell knowledgeYes 197 76.1No 62 23.9

I am at risk of sickle cell traitStrongly agree 10 3.9Agree 25 9.7Don’t know 66 25.7Disagree 74 28.8Strongly disagree 82 31.9

Level of concern about sickle celltrait

Very low 4 1.6Low 20 7.8Unconcerned 23 8.9High 142 55.0Very high 69 26.7Missing 1 0.4

If I were diagnosed with sickle celltrait, I would be given lessplaying time

Strongly agree 6 2.4Agree 21 8.4Don’t know 127 50.8Disagree 56 22.4Strongly disagree 40 16.0Missing 9 3.5

time,” 2.4% of athletes strongly agreed, 8.4% agreed, 50.8%didn’t know, 22.4% disagreed, 16.0% strongly disagreed, and9 responses were not included.

Table 2 shows the results of multinomial regression of theperception that if the respondent were diagnosed with SCT,he or she would be given less playing time. After statisticallycontrolling for other independent variables in the multivari-ate model, male athletes were 3.38 times more likely thanfemale athletes to strongly agree or agree that they would getless playing time in the event that they are diagnosed withSCT. Neither the race of the athletes nor their knowledge ofSCT had any significant relationship with the fear of gettingless playing time if diagnosed with SCT. None of the 3 in-dependent variables—gender of the respondents, their race,level of knowledge about sickle cell trait—was significantlyassociated with strongly disagreeing or disagreeing (vs theneutral category—don’t know) with the statement “If I werediagnosed with sickle cell trait, I would be given less playingtime” (see Table 2).

African American or black American athletes were9.071 times more likely to strongly agree or agree that theywere at risk of having SCT. Being a male or having theknowledge of the disease was not statistically significantlyassociated with this perception. Again, gender of the respon-dents, and their race, was not statistically significant, butlevel of knowledge about sickle cell trait was significantlyassociated with strongly disagreeing or disagreeing (vs theneutral category—don’t know) with the statement “I am atrisk of having the sickle cell trait” (see Table 3).

COMMENT

Findings and DiscussionIn this article, we considered SCD/SCT experts’ concerns

about the possibility of discrimination resulting from themandatory NCAA’s SCT-screening policy. We explored ath-letes’ perceptions of this policy and examined race- andgender-related differences in athletes’ perceptions regardingrisk of having the SCT, and level of concern that if diagnosedwith SCT that he/she would be given less playing time. Thereare currently no published studies that empirically examinethe perceptions of NCAA mandatory SCT testing from ath-letes’ points of view. Therefore, this study fills a critical gapin the literature by describing the experiences of those whoare actually governed by this policy. Key findings of the studywere that (1) athletes had no clear position on their percep-tions of mandatory genetic testing, (2) African Americanathletes perceived an elevated level of risk of having theSCT as compared with Caucasian athletes, (3) athletes withhigher knowledge of SCD/SCT were more likely to disagreeor strongly disagree that they were at risk of having SCT,(4) athletes perceived that their level of concern would behigh if they were diagnosed with SCT, and (5) athletes didnot share SCD/SCT experts’ concerns that they would bediscriminated against (via loss of playing time) if diagnosedwith SCT. These findings are further elucidated below.

Athletes’ Perceptions of Mandatory Genetic TestingThere was no clear majority between opponents and pro-

ponents when athletes were asked how likely they were to

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Student Athletes’ Perceptions of Sickle Cell Trait Screening

TABLE 2. Multinomial Logistic Regression of Perception That “If I Were Diagnosed with Sickle Cell Trait, I WouldBe Given Less Playing Time”

Strongly agreed or agreed vs Strongly disagreedor disagreed Don’t know vs Strongly disagreed or disagreed

95% CI for OR 95% CI for OR

Characteristics of athletes OR p value Lower bound Upper bound OR p value Lower bound Upper bound

Athletes’ knowledge ofsickle cell disease

1.014 .945 0.686 1.497 0.821 .080 0.658 1.024

Race/EthnicityBlack or AfricanAmerican

0.893 .827 0.325 2.457 0.943 .852 0.511 1.742

Other race/ethnicity∗ 1.737 .483 0.371 8.123 0.262 .112 0.050 1.368White Reference

Gender of the athleteMale 3.383 .017 1.238 9.243 1.681 .066 0.966 2.924Female Reference

Note. OR = odds ratio; CI = confidence interval.∗Race or ethnicity other than white non-Hispanic or black/African American.

support mandatory genetic testing during the preparticipa-tion sports physical. This study occurred during the time thatthe NCAA policy was changing from recommended SCTscreening to mandated SCT screening. However, the studycampus mandated screening for all of its athletes before thechanges were made to the NCAA policy, which is noted byClarke et al18 as a common practice that occurred before theNCAA mandate. Athletes are accustomed to preparticipationsports physicals and NCAA mandates. Therefore, this mayhave affected their perceptions of mandatory genetic testingduring the preparticipation sports physical. Although athletes

had no clear stance on the NCAA’s SCT mandate, it is im-portant to note that within the general public, screening forsickle cell carrier status is voluntary,12 not mandated, and istypically provided by trained health care professionals whocan address the implications of carrying the trait. Therefore,it is necessary for college health professionals to becomewell educated on policies such as the Genetic InformationNondiscrimination Act of 2008,30 which protects individualsfrom discrimination in employment, and the Ethical, Legaland Social Implications program research, which has pri-oritized research on the implications of the availability and

TABLE 3. Multinomial Logistic Regression of Perception That “I Am at Risk of Having the Sickle Cell Trait”

Strongly agreed or agreed vs Strongly disagreedor disagreed Don’t know vs Strongly disagreed or disagreed

95% CI for OR 95% CI for OR

Characteristics of athletes OR p value Lower bound Upper bound OR p value Lower bound Upper bound

Athletes’ knowledge ofsickle cell disease

1.350 .125 0.920 1.980 0.728 .006 0.582 0.912

Race/EthnicityBlack or AfricanAmerican

9.071 .000 3.824 21.516 1.575 .202 0.784 3.162

Other race/ethnicity∗ 3.454 .163 0.605 19.732 1.680 .485 0.392 7.204White Reference

Gender of the athleteMale 0.867 .736 0.377 1.993 1.514 .197 0.806 2.847Female Reference

Note. OR = odds ratio; CI = confidence interval.∗Race or ethnicity other than white non-Hispanic or black/African American.

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use of genetic information such as a positive SCT-screeningresult.31

Athletes’ Perceptions of Risk of Having SCTThe majority of athletes disagreed that they were at risk

of having SCT. However, of significant concern is thatamong those who did agree that they were at risk for SCT,African American athletes were over 9 times more likelythan Caucasian athletes to perceive this risk. SCT primar-ily affects African Americans. Therefore, if stigmatizationor other forms of discrimination did occur, it would nat-urally disproportionately affect African American athletes.Studies have identified challenges facing African Americanathletes on college campuses that include a legacy of racismand discrimination as well as stereotyping, which can causedepression and other health problems.32–34 Therefore, itis important that college health care providers develophealth education practices and policies that avoid exacer-bating the issues of race in athletics via mandatory SCTscreening. Collegiate health care providers must be highlyaware of the anxiety that can be accompanied by a pos-itive SCT result in athletes of every race/ethnicity35 andprepare to address the concerns of athletes as well as theirfamilies.

Athletes’ Knowledge and Level of Concern if DiagnosedWith SCT

A large majority of athletes agreed that their level of con-cern would be high or very high if they were diagnosedwith SCT. Neither gender nor race was a significant pre-dictor of SCT knowledge, as was seen in another study.35

However, athletes with higher knowledge of SCD/SCT weremore likely to respond “disagree or strongly disagree” than“don’t know” when asked if they perceived that they wereat risk of having SCT. This illustrates the need for healtheducation concerning SCT not only if an athlete is diagnosedwith SCT, but also before an athlete is tested. Jordan et alstates, “An important aspect of the public health approach toscreening for SCT . . . should include health education to ex-plain the benefits and risks of testing, and genetic counselingto explain the results and their implications.”12(pS406) The in-dividual delivering these results should be an informed prac-titioner such as a physician or genetic counselor and shouldprovide screening results and communicate the implicationsof SCT to an athlete22 and be an individual who can providetrustworthy counseling.35 Universities that do not have thesepractitioners on staff may need to partner with sickle cellcenters36 or other medical practices qualified to address thecomplexities of SCD/SCT.

There is also a need for universities to critically exam-ine SCT-screening and reporting methods, as current testingmethods such as the Sickledex test can provide false re-sults.20,21 College health providers should ensure that thereis a plan for timely follow-up with athletes following SCTscreening to confirm results as well as to educate them aboutthe implications of having the trait. It is also important to notethat athletes who are not found to have SCT should be given

that information as well. Knowledge of the SCT-screeningresult may reduce anxiety associated with the athlete notknowing whether or not he/she is a SCT carrier and is impor-tant for the athlete’s future reproductive decision making.

Athletes’ Perceptions of Loss of Playing Time ifDiagnosed With SCD

The majority of athletes disagreed, or were not sure, ifthey would receive less playing time if diagnosed with SCT.Race was not significantly associated with the perceptionthat one would lose playing time if diagnosed with SCT.However, males were 3 times more likely than females tofear loss of playing time. This finding illustrates the factthat athletes in this study did not share SCD experts’ con-cerns regarding fears of discrimination via loss of playingtime or other athletic opportunities related to a diagnosis ofSCT.1,12,14,22,23 This may have been because athletes werenot aware of the history of SCT screening beyond the con-text of athletics. However, it is important for college healthprofessionals and coaches to understand the history of SCTscreening so that they do not perpetuate the legacy of issuesthat have plagued SCT screening since its inception. Coachesand athletic trainers should also guard against an overly pa-ternalistic response to SCT carriers to avoid discriminationtowards those athletes via restricting their playing time outof fear. Koopmans et al23 found that in a study of pediatri-cians, respondents would treat athletes with SCT differentlyand more than half believed that the coach should reduceplaying time under certain conditions such as hot and hu-mid days and games played at high altitude. The willingnessof pediatricians to treat athletes who are SCT carriers dif-ferently shaped their beliefs that these players would facediscrimination in athletic opportunities.23 To avoid the re-striction of playing time for SCT carriers will require edu-cation on SCT, its physiological as well as social and be-havioral implications, and the creation of a well-designedplan for content and delivery of health education andpractice.

LimitationsThese findings illustrate possible implications of SCT test-

ing in the context of organized sport. The authors acknowl-edge the small sample size and the fact that this study wasdone at one Division I, NCAA-governed program in thesoutheastern United States. Therefore, results are not nec-essarily generalizable to all NCAA-governed athletics pro-grams. However, it should be noted that it is extremely diffi-cult to gain entry into most athletic programs and a study thatgathers the perspectives of athletes concerning this NCAApolicy has not yet been published. Therefore, this study wasdesigned to generate formative empirical data to address theconcerns of SCD/SCT experts and the athletes who are gov-erned by this policy. Although the conclusions are valid onlyfor this study campus, this study should encourage furtherinvestigation and discussion among clinicians, researchers,policy makers, and the like.

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Student Athletes’ Perceptions of Sickle Cell Trait Screening

ConclusionsIt is imperative that campus health professionals are made

aware of athletes’ perspectives on the NCAA screening pol-icy so that athletes are not unnecessarily subjected to stressor harm. The potential for discrimination against an athletewho has the SCT via loss of playing time can be reduced ifcampus health professionals are well educated on the medi-cal and social implications of SCT, as well as the history ofSCT screening, and athletes are provided education that isdelivered by qualified health professionals, and is accurate,timely, and sensitive to the athlete’s fears and needs.

Although our work is an important start, much more workin this area is needed. Future studies should expand our workto include Division I–III athletics programs of varying sizeand location. More work is needed to determine the experi-ences of athletes who are SCT carriers. There is also a needfor further study of the culture of athletics to critically deter-mine what, if any, policies or procedures can be put into placethat would make the preparticipation sports physical withinthe athletic environment an appropriate, or more appropriate,venue for SCT testing.

FUNDINGNo funding was used to support this research and/or the

preparation of the manuscript.

CONFLICT OF INTEREST DISCLOSUREThe authors have no conflicts of interest to report. The

authors confirm that the research presented in this articlemet the ethical guidelines, including adherence to the legalrequirements, of the United States and received approvalfrom the Institutional Review Board of Georgia SouthernUniversity.

NOTEFor comments and further information, address correspon-

dence to Raymona H. Lawrence, DrPH, MPH, Jiann PingHsu College of Public Health, Georgia Southern Univer-sity, PO Box 8015, Statesboro, GA 30460, USA (e-mail:[email protected]).

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Lawrence & Shah

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Received: 27 November 2013Revised: 3 March 2014

Accepted: 5 March 2014

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