Jan 032017
 January 3, 2017  Posted by  Breaches, Featured News, Healthcare, U.S.

Sarah Zhang has a fascinating article in The Atlantic that raises important questions about privacy and confidentiality in historical-medical research. But the main point of the research – what we are now learning about California’s sterilization program – is so important on so many levels that figuring out how to address it sensitively and with regard for the privacy rights of surviving individuals is crucial.

In 2007, only after historian Alexandra Minna Stern had spent years researching eugenics in the American west, culminating in a published book, did she find the motherlode.

During the height of the eugenics movement, California sterilized 20,000 patients deemed feeble-minded or insane. Stern, who is a professor at the University of Michigan, wrote about the sterilization program in her book, but she had only a patchwork of records to work with.

One day in 2007, a secretary pointed her toward a neglected filing cabinet at the state department of mental health’s office in Sacramento. Inside were 19 reels of coiled microfilm, containing sterilization recommendation forms with the names, ages, family histories, and diagnoses of nearly 20,000 patients. These forgotten records covered patients recommended for sterilization at California state hospitals from 1919 to 1952. “The microfilm was in very good shape,” says Stern. “I don’t think anyone had looked at it since the 70s.”

Recognizing the value of such a complete record, Stern had the microfilm duplicated. (Good thing because the original microfilm was later lost when the department reorganized following California’s budget cuts.) From there, the project morphed into something resembling contemporary data science more than traditional historical research. Stern hired a team of students to turn microfilm into a searchable database of health records—powered by HIPAA-compliant clinical trial software. And along the way, the team encountered the promises and pitfalls of big data as applied to history.

Recently, Stern co-authored a paper estimating that as many as 831 of the patients sterilized are still alive.

Read more on The Atlantic.

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