Is football worth surrendering genetic privacy for generations?

The NCAA mandated testing 170,000 athletes for the sickle cell trait because of a lawsuit following the death of a freshman in 2006. See the Washington Post article: Sickle cell testing of athletes stirs discrimination fears

The NCAA apparently did not consider the effect of testing on students’ future employment, even though carrying the sickle cell trait has long been a cause of discrimination.

Better training and monitoring of athletes could help prevent the deaths of athletes with other health problems besides the sickle cell trait, and prevent exposing athletes’ entire families to discrimination.

Quotes:

  • 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.
  • Since 2000, as many as 10 Division I college football players who had the trait without knowing it have died suddenly following workouts.
  • “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.
  • “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.

Genetic Privacy Debate hits Major League Baseball

The story highlights the use of DNA testing by ‘employers’–Major League Baseball franchises. Baseball tests to verify the ages and identities of players from Latin America, but the test samples can also be used to detect familial genetic dieseases such as ALS (which Lou Gehrig had).

• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”

The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.

Baseball players are not the only ones whose DNA and genetic tests can be used against them–the same thing can happen to all of us.

According to GINA, employers and insurers can’t use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.

• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?

GINA is toothless–it forbids bad behavior but there is no way to enforce it.

And Americans’ genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of ‘covered entities’ and ‘business associates’ for purposes we would never agree with–including using genetic tests to discriminate againts us.

Face Book users control who sees the personal information they post on their walls, but Americans can’t control who sees their electronic health information. What’s wrong with this picture?

The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.

Stay tuned–sign up for our alerts and we’ll tell you what you can do to save privacy.