Colleges mandate sickle cell testing

By Rob Stein
Washington Post Staff Writer
Monday, September 20, 2010

U.S. colleges and universities for the first time are requiring top student athletes to submit to testing for the gene for sickle cell anemia, a mandate aimed at preventing sudden deaths of promising young players but stirring deep fears about reviving dangerous old prejudices.

The screening hopes to identify athletes at high risk for life-threatening complications from intense physical exertion. That way, those with the gene could be monitored more closely and their training could be modified by, for example, allowing more time for rest and drinking more water.

But the prerequisite is evoking some of the most notorious episodes in the nation's history. While less known than the infamous Tuskegee syphilis experiment, for decades blacks were stigmatized by sickle cell because they carried it far more commonly than whites, marking them as supposedly genetically inferior, barring them from jobs, the military, insurance and even discouraging them from marrying and having children.

"This amounts to a massive genetic screening program, with tens of thousands being screened," said Troy Duster, a professor of sociology at New York University who studies the racial implications of science. "This could have an extraordinarily heavy impact on black athletes. You are going to be picking out these kids and saying, 'You are going to be scrutinized more closely than anyone else.' That's worrisome."

The testing is being watched closely as a case study in both the potential benefits and risks of large-scale modern genetic screening, which is proliferating as the genetic bases for more and more diseases are being deciphered.

"This could be a tip of an iceberg of genetic screening as we go forward," said Vence L. Bonham of the National Institutes of Health's National Human Genome Research Institute. "Getting it right is important, especially this one being the first one out of the gate."

Although endorsed by some doctors, sports officials, athletes and parents, the testing has raised objections from both the Sickle Cell Anemia Association of America and a federal panel that advises the government on issues related to genetic testing.

"We're very concerned that identifying someone as a carrier could be discriminatory," said R. Rodney Howell, who chairs the Health and Human Services Department's Advisory Committee on Heritable Disorders in Newborns and Children, which sent a letter to HHS Secretary Kathleen Sebelius in June expressing concern about the program. "There is no need to single out this group."

The National Collegiate Athletic Association mandated the testing in April in response to a lawsuit filed by the family of Dale Lloyd II, a 19-year-old African American freshman at Rice University who died after an intense football workout in 2006 and was later discovered to have had the sickle cell trait.

"We want to prevent this from happening to anyone else," said Lloyd's mother, Bridgette Lloyd of Houston. "Coaches and trainers need this knowledge. We don't want another young person to lose their life because of a lack of information."

Under the policy, as of Aug. 1 all new students joining NCAA Division I teams, regardless of race, must be tested for the sickle cell trait - a requirement affecting about 170,000 student-athletes. No one will be excluded from sports or restricted in training or playing based on the results, officials said. Rather, athletes who test positive will be conditioned more carefully and watched more closely to ensure they drink enough and avoid overexertion, especially on hot days and in high altitudes. The NCAA is considering expanding the testing to Division II and III players, which would extend the order to about 260,000 more students.

"We're trying to protect the health and well-being of our student athletes," said Yvette Rooks, the University of Maryland's team physician, who served on the NCAA committee that recommended the policy. "One death is too many. Anything we can do to prevent it and help people be healthier is important."

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