Sickle cell testing of athletes stirs discrimination fears

By Rob Stein
Washington Post Staff Writer
Monday, September 20, 2010; 12:19 AM

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."
Sickle cell anemia creates sickle-shaped red blood cells, which block vessels, causing chronic problems with intense pain, life-threatening infections and organ damage.
A person born with two copies of the gene gets the illness. People who carry only one - known as having the sickle cell trait - are generally healthy. But during highly stressful physical exertion their blood cells can become sickle-shaped, preventing the delivery of oxygen to tissues and organs. Since 2000, as many as 10 Division I college football players who had the trait without knowing it have died suddenly following workouts.
"There have been players who cease activity on a hot day because of complaints of fatigue - they are sweating heavily and cramping and not understanding the evidence of sickling. Those cases have been managed as exertional heat illness - and it wasn't, with tragic consequences," said Scott A. Anderson, head athletic trainer at the University of Oklahoma, who has spearheaded the drive for testing. "The more you know, the better the athlete can protect themselves."
Students can opt out if they prove that they have already been tested or sign a waiver insulating their school from liability, though the NCAA is considering revoking that option. Even if students can refuse, critics worry that they will fear antagonizing coaches or other athletic officials, putting their scholarships and possible future professional careers in jeopardy. Coaches may be hesitant to intensively train and play those who test positive, and professional teams may be less inclined to draft them.
"The stigma and its consequences - both self-imposed and done by coaches, peers, and the institution - are likely to be far, far out of proportion to the actual risk," said Duster, who chaired the Human Genome Project's National Advisory Committee on Ethical, Legal and Social Implications.
While acknowledging that the trait may carry some risk, critics of the new policy also say the magnitude remains far from clear. Many athletes with the trait play safely in extreme conditions. And athletes who do not carry the gene have suddenly died for other reasons, most notably heart problems.
"What doesn't exist is scientific data to support the screening," said Elliott Vichinsky, director of hematology-oncology at Children's Hospital in Oakland and director of the Northern California Sickle Cell Center. "There are a lot of other people at risk for heat-related illness from exertion."
The best solution, they argue, would be better monitoring, training and care for all athletes - a strategy that worked for the military. That would avoid targeting the estimated 8 percent of blacks who carry the sickle cell trait gene, compared with about 0.2 percent of whites and 0.5 percent of Hispanics. In 2008-09, 24.8 percent of male Division I student-athletes and 16 percent of female Division I student-athletes were black, according to NCAA statistics.
"If you want to protect people, there's an easy way to do that: change the training protocol for everyone," said Lanetta Jordan, the Sickle Cell Disease Association of America's chief medical officer.
In addition, critics worry that students who test positive for the trait and their families will misinterpret the results as meaning they have sickle cell anemia, particularly if the news is not delivered by a doctor or genetic counselor.
"If you are going to test for sickle cell trait, it should not be done in the locker room by a coach," Howell said.
But supporters argue that such concerns are easily outweighed by the benefits.
"There have been no known case of any athletes being denied participation in sport because of their sickle trait status," Anderson said. "Information beats ignorance."
Others, while raising questions about the testing, hesitate to condemn the program as ill-conceived.
"I see it as an experiment," said Lawrence C. Brody, also of the National Human Genome Research Institute. "It's an opportunity for us to learn."

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