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.

Baseball’s Use of DNA Raises Questions

Confronted with cases of identity and age falsification by Latin American baseball prospects, Major League Baseball is conducting genetic testing on some promising young players and their parents.

Many experts in genetics consider such testing a violation of personal privacy. Federal legislation, signed into law last year and scheduled to take effect Nov. 21, prohibits companies based in the United States from asking an employee, a potential employee or a family member of an employee for a sample of their DNA.

Dozens of Latin American prospects in recent years have been caught purporting to be younger than they actually were as a way to make themselves more enticing to major league teams. Last week the Yankees voided the signing of an amateur from the Dominican Republic after a DNA test conducted by Major League Baseball’s department of investigations showed that the player had misrepresented his identity.

Some players have also had bone scans to be used in determining age range.

In a written statement, Major League Baseball said that it used DNA testing in the Dominican Republic “in very rare instances and only on a consensual basis to deal with the identity fraud problem that the league faces in that country.” The statement added that the results of the tests were not used for any other purpose.