1863 Sleepless nights

Librarians Against Bush (that's most of them) have many sleepness nights worrying about the Patriot Act. The average ordinary American doesn't walk into a library, but I guess someone thinks the terrorists will and then the Bush folks will come snooping and looking at their records. Well, those librarians ought to go pull the Journal of Biomedical Information (2004;37:179-92) off the shelf and read the article by Malin and Sweeny. There is no anonymity or confidentiality or secure records. It's too late to close the barn door.

The article concerns your own health information--something most of us guard a little more carefully than our library record. In this study on database security, the authors took publicly available and de-identified hospital-discharge data from Illinois (from 1990-1997) and combined them with Census data and voter-registration data to identify patients with rare genetic diseases. They showed that 33% of patients with cystic fibrosis could be re-identified, as could 50% of patients with Huntington's disease, 70% of patients with Fanconi's anemia, and 100% of patients with Refsum's disease (very rare).

Although they focused on rare diseases, the avilability of increasing amounts of health information makes everyone rare in some ways, says the New England Journal of Medicine. Earlier they had obtained the health records of a former governor with the use of the most common of data--hospital information about state employees, who were identified only by ZIP Code, sex, and date of birth published by the state's insurance commission. Using a voter-registration list ($20), the author identified 3 persons with the same date of birth and sex as the governor, only one who had the same ZIP.

Think of the mischief that could be created by identifying people with mental illnesses, drug problems, and sexually transmitted diseases. Now throw into the mix DNA genetic sequence data which you might be asked to agree to share for a research study, and you've just added in your entire family, extended family and others who might not be happy that you've shared.

NEJM offers some suggestions for policy makers and legislators. I wish them luck.

Technorati tags: medical records, confidentiality, biomedical information