Posted by Peerapong Tantamjarik
In today’s New York Times Dr. Klitzman, a psychiatrist at Columbia University, writes a short essay describing how a mother reviewed her paper medical chart at a clinic and, without informing any clinic staff, removed certain pages from her records. Those pages contained information revealing that she was at risk for Huntington’s Disease, a fatal genetic disorder for which famous folk singer, Woody Guthrie, died of. As the mother put it, “I stole it for my kids’ sake” – which is not all too hard to fathom. She was frightened that because Huntington’s is hereditary, her kids would be denied health coverage if insurance companies found out about it.
Dr. Klitzman was disturbed by her actions; after all, to whom does the chart belong? The health information is the mother’s, but the paper chart belongs to the clinic. But the scenario presents a larger concern regarding privacy of health information, and how patients’ confidence in the appropriate security and usage of such information could guide their actions in response, including the secret taking of chart pages. As a legal matter, states vary greatly in the protections against genetic discrimination and privacy. Some provide overarching prohibitions against genetic discrimination and disclosure, while others protect for only specified genetic conditions. Even where the law prohibits genetic discrimination, is that any consolation for patients such as the mother in Dr. Klitzman’s essay? We have laws prohibiting discrimination of all kinds, but it still happens. Same with prohibited disclosures. When the AIDS epidemic struck in the 80s, many individuals refused to get tested and screened out of fear of discriminatory backlash because at that time, AIDS was portrayed as a disease affecting homosexuals. Even though such testing could have saved lives, the fear of discrimination based on the health information leaking out deterred individuals from seeking help (and disrupted public health efforts to contain the disease). Similarly, at the individual level, this mother’s removal of relevant medical information from her chart could compromise not only her care, but her children’s care in the future, as any impediment between doctor-patient communication would. But can you blame her?