Counseling Inadequate in Student-Athletes Tested for Sickle Cell

Ricki Lewis, PhD

November 12, 2012

SAN FRANCISCO — Student-athletes tested for sickle cell status do not receive adequate pre- or posttest counseling or education, according to a study presented here at the American Society of Human Genetics 62nd Annual Meeting.

Sickle cell disease heterozygosity ("carrier" or "sickle cell trait") is associated with an elevated risk for collapse under extreme exertion. The complication is rare but can be lethal.

In 2006, Dale Lloyd II, a 19-year-old freshman at Rice University in Houston, Texas, collapsed during a strenuous football practice. He died the next morning from acute exertional rhabdomyolysis.

The student's parents sued Rice University and the National Collegiate Athletic Association (NCAA). In response, the NCAA mandated testing for the sickle cell trait (heterozygosity) for all division I student-athletes. However, a student can sign a waiver absolving the organization of liability and opt out of sickle cell testing.

Niki Lovick, MS CGC, a genetic counselor at California State University, Stanislaus, in Turlock, and colleagues invited student-athletes from the 24 division I schools in California to participate in an online survey. A variety of sports were represented. Of the participants, 57.3% were female, 74.3% were white, 13.6% were black, and 13.6% were Hispanic. Just less than half were 19 or 20 years of age.

Niki Lovick, MS CGC, a genetic counselor at California State University, Stanislaus, in Turlock, and colleagues conducted an online survey of 233 student-athletes from 24 division I schools in California. A variety of sports were represented. Of the participants, 57.3% were female, 74.3% were white, 13.6% were black, and 13.6% were Hispanic. Just less than half were 19 or 20 years of age.

The survey assessed student-athletes' knowledge of sickle cell heterozygosity, whether or not they received pre- and/or posttesting counseling or education, and the impact of the NCAA ruling about genetic testing on their athletic participation and performance.

Most participants (64.3%) could not answer very basic questions about sickle cell disease, such as whether a sickle cell carrier can go on to develop the full-blown syndrome. Slightly more than half (55.7%) knew that extreme exercise is a risk factor for complications of sickle cell disease, but fewer were aware that dehydration and heat exposure are risk factors.

Sixty-eight percent of the students knew their sickle cell status. Of those, 57.4% had the test because they wanted to play on a team, 15.4% were screened as newborns, and 2.9% were tested because they were concerned about their health.

Of the 17.0% of students who signed the waiver to opt out of testing, 82.0% were not concerned that they could test positive, 10.3% found it easy to avoiding testing, and 7.7% were concerned about providing results to the school.

Pretest counseling or education about sickle cell disease carrier status was uncommon; 78.3% of the students reported receiving no such information. When students did have pretest counseling or education, it did not significantly increase their ability to answer basic questions, Lovick noted.

Four of the students tested positive. "This is a small number, but more than expected," Lovick said. If all division I schools required testing, 300 to 400 carriers per year could be identified, perhaps saving 1 or 2 people, she added.

Two of the 4 students who carry the mutation received posttest counseling, and 2 reported changing their practice habits (drinking and resting more). The 4 reported that learning their carrier status did not alter their performance behavior.

In general, coaches did not recommend abstaining from exercise, but encouraged student-athletes who were carriers to take simple precautions to lower the risk for collapse and death. One carrier reported different treatment from the coach after the test, in the form of more frequent water breaks.

Limitations of the study include the small number of division I schools that responded to the survey (8 of 24 in California; there are 346 in the country) and the small number of students who tested positive for sickle cell disease carrier status. In addition, the survey did not clearly define the types of counseling or education provided to the students, Lovick explained.

"Student-athletes who tested positive for sickle cell disease carrier status did not experience a major impact on their participation in sport," Lovick concluded. She suggested that state newborn screening programs might work with the NCAA to make testing more beneficial to student-athletes, and perhaps save a few lives.

Ms. Lovick has disclosed no relevant financial relationships.

American Society of Human Genetics (ASHG) 62nd Annual Meeting: Abstract 145. Presented November 8, 2012.

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