Recently, President Bush signed GINA, the Genetic Information Nondiscrimination Act, into law. GINA makes it illegal for employers or health insurers to discriminate based on genetics. Virtually the entire genetics community has lauds this legislation, yet few have written why its wrong that employers and services review objective facts to make decisions.

“It’s not fair…” but why?

Genetic Tests Unfairly Favor the Employer

Scenario: many of my employees complain of condition X. I test their genes. The tests claim that the majority of the employees are:

• “40% susceptible” to that condition. I cast doubt on my employee’s testimonies because they were not genetically predisposed. Thus, I refuse liability.
• “300% susceptible” to that condition. I cast doubt on the claims environmental hazard claim because they were genetically predisposed. Thus, I refuse liability.

Seem too slimy to be possible?

Ok, pick a common work-related condition: Carpal Tunnel Syndrome. Now pick a job where Carpal Tunnel is an obvious environmental hazard: Railroad Bolt Pounder. Say an employee is diagnosed with Carpal Tunnel, has surgery, and returns to work in three weeks. Say I’m the employer, and after the surgery which I had already approved, I mandate that my employee must undergo a genetic test to provide “additional, objective medical information to determine whether or not your condition is work-related.” The results of that genetic test aren’t interpreted as percentage-risks for a specific disease, but look like this:

“This individual does not possess either the duplication or deletion of thePMP-22 gene associated with CMT1A and HNPP respectively. The analyses performed here also did not detect any DNA sequence alterations in the coding region of the PMP22 gene associated with a wide spectrum of peripherial neuropathies and the TTR gene causing a variety of Amyloidosis syndromes. Therefore, this individual is unlikely to be affected with or predisposed to developing the disease phenotypes of CMT1A, HNPP, CMT1, and TTR-associated Amyloidosis syndromes.”

Seem even more outrageous?

Yet, this is the exact scenario of Gary Avary of Nebraska, an employee of Burlington Northern Railway (BNSF). A doctor diagnosed Gary with work-aggravated Carpal Tunnel Syndrome and recommend surgery, which Gary’s employer approved. Gary received the surgery and returned to work after a three week medical leave.

Two months later, BNSF subjected Gary to a genetic test regarding his predisposition to Carpal Tunnel without his permission.

• “Nurse Derails Genetic Testing”, LA Times, 2/25/01
• Athena Diagnostic’s Carpal Tunnel Syndrome Evaluation (the test used in this story)
• Sample Test Results for Carpal Tunnel Syndrome from Athena (pdf)

Quick Quiz: Gary has Carpal Tunnel Syndrome. Gary tests negatively for a mutation associated with Carpal Tunnel Syndrome. Does Gary have Carpal Tunnel Syndrome?

Without GINA, BNSF says: no. GINA “helps” employers like BNSF score higher on my quizzes.

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