03.23.17

By: Louise Aronson
Source: The New York Times

Don’t Discriminate Against Mutants Like Me

SAN FRANCISCO — You can’t tell by looking at me, but I’m a genetic mutant. My mother is, too, as were my aunt and grandmother.

Our mutation is a chromosomal defect that puts us at increased risk for cancers of the colon, uterus, ovaries, stomach, small intestine, pancreas, kidney, urinary tract and brain — mostly organs it’s hard to do without.

I could tell you about another mutant relative, too, but I won’t. Not after House Republicans proposed the so-called Preserving Employee Wellness Programs Act. I’m a doctor as well as a patient, so I’m taking the risk of disclosing my own defect in hopes of showing how this act would harm not just mutants like me, but also most Americans.

The legislation would enable companies to coerce employees into participating in wellness programs that could require them to undergo genetic testing and provide genetic information about themselves and their families. Although discriminating against workers with genetic abnormalities would be prohibited, it would be very difficult to prove that discrimination had taken place. Employers might simply invoke other reasons for hiring and firing decisions.

I was first tested and learned of my mutation in the 1990s. For years thereafter, my doctors and I had to do some fancy footwork in medical records and insurance claims so that I could get the cancer screening I needed without revealing information that might hurt both my insurability and my employability. It was stressful and scary, and it influenced where I chose to work — always for large organizations with no-questions-asked insurance options and extensive coverage.

Then, in the early 2000s, my home state, California, passed laws preventing employers and insurers from discriminating based on medical or genetic conditions. Still, I didn’t relax fully until 2008, when the Genetic Information Nondiscrimination Act prohibited employers nationwide from requesting, requiring or purchasing genetic information, and from discriminating on the basis of that information. It also prohibited insurance companies from denying or canceling coverage because of genetic test results. After that, it seemed my insurer, employer and government were working together to keep me healthy.

Not anymore. Even if the Preserving Employee Wellness Programs Act doesn’t pass, those of us with genetic mutations, as well as people covered by a similar provision in the Americans With Disabilities Act, now know the protections we received aren’t lifetime guarantees. They can be overturned, and some very powerful people would like to do so.

Bottom line? If Congress passes this law, it will be opening the door to state-sanctioned health discrimination. And if employers can get and act upon workers’ private health information, everyone will be in trouble, not just mutants like me. The overweight, pregnant, diabetics, people with high blood pressure or poor exercise habits — all could potentially be penalized.

In business, as in medicine, there is no point in asking a question or doing a test unless you plan to act on the results. Since all of these risk factors can increase the chance of illness, and illness costs money, it’s hard to see this legislation as anything other than a vehicle for discriminating against the afflicted.

For patients like me, mutations only signal increased risk; they don’t tell you who will get cancer, what type or when. For some mutations, different labs offer different interpretations of the same results. This legislation would put genetic information into the hands of people who probably don’t know what to do with it, or how to protect it.

It would also decrease participation in genetic research that benefits millions. Mutation-related cancers act like spotlights in a crowd, pointing investigators toward key cellular functions and thus informing the diagnosis and treatment of all cancers.

Finally, it could discourage patients from seeking preventive care. Among the wonders of this time in medical history are my knowledge of my mutant gene and my ability to do something about it; available procedures can lower my lifetime risk of developing cancer, which would otherwise be 40 percent to 65 percent.

Every year or two, I’m screened for intestinal cancers so that tumors can be caught early. I dread these procedures. Day 1 is starvation followed by a night of swallowing huge quantities of nauseating liquid and hours on the toilet. Day 2 is missed work, anesthesia, hangover and recovery.

For my 50th birthday, I had my past-their-use-by-date reproductive organs removed before they could hurt or kill me. All my parts went to cancer research, which is great, though I now understand why people write both tragedies and comedies about menopause.

All this could save my life, but it hasn’t been fun, and it can be a hard sell for patients, particularly if they have other health issues or can’t miss work. Adding the fear of financial penalties or unemployment runs counter to good medicine and smart public policy.

The Genetic Information Nondiscrimination Act has helped preserve my health. The absurdly titled Preserving Employee Wellness Programs Act would do just the opposite. Congress and the president should kill that bill, not their fellow Americans.