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As every American knows, our health care system is exasperating. I recently left a job; fortunately, I’m healthy and relatively young, so obtaining temporary insurance was not a problem. But for those who have been seriously ill – either physically or mentally – it can be difficult or impossible to find affordable insurance. Genetic information is becoming yet another reason to fear rejection, even if you’re healthy.

A recent study led by researchers at Johns Hopkins found that individuals with a history of genetic conditions (including sickle cell disease or cystic fibrosis) were twice as likely as individuals with other chronic illnesses (such as diabetes or AIDS) to report being denied insurance. Although asymptomatic individuals carrying disease-causing alleles cannot legally be singled out by insurers (according to HIPAA, the Health Insurance Portability and Accountability Act), individuals diagnosed with the disease itself have no such protection. The subjects of the Johns Hopkins study had already been diagnosed, which is likely the case for most people with known genetic diseases; there is rarely reason to test for particular gene aberrations in the absence of symptoms, unless a close family member is affected. So insurers were not breaking the law by denying the subjects coverage. Still, it is provocative that the subjects with genetic diseases were treated more poorly than those with non-genetic, but quite serious, conditions.

The umbrella of “genetic diseases” usually includes disorders caused by single aberrant genes, such as cystic fibrosis, PKU, hemophilia, and Huntingtons disease. But genetics also predispose people to diseases like breast cancer or colon cancer – conditions for which certain forms of genes are associated with significantly elevated (though not certain) risk. BRCA1 and BRCA2 mutations account for only about 5% of breast cancer cases – but a woman with one of these mutations is 3 to 7 times more likely to develop breast cancer than a woman without a BRCA mutation (reference). Still other genes, such as PALB2, are likely responsible for some non-BRCA breast cancers. It’s unclear how many cases of breast cancer are genetically triggered, because the genes responsible are still being identified. Recent studies have also found genetic risk factors for conditions as diverse as autism, schizophrenia, and Parkinson’s disease; although we know next to nothing about how aberrant genes contribute to these neurological conditions, we can say that individuals with certain alleles have elevated risk. Increasingly, these conditions are also considered “genetic.”

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