Latanya Sweeney

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As Health Records Go Digital, Where They End Up Might Surprise You

Jordan Robertson | Bloomberg | June 5, 2012

Two years ago, Latanya Sweeney created a graphic on the widespread sharing of medical files that shocked lawmakers, technologists and doctors.  Sweeney, who founded the Data Privacy Lab at Harvard University, produced a “health data map” that looks like a windshield cracked by a few big rocks...

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Eaten Alive: A Patients’ Perspective on De-Identification of Personal Health Information

In 2018, the majority of people do not know that their PHI, like their EHR data, prescription data, insurance claims, and genetic data via direct-to-consumer (DTC) tests, are de-identified and sold for research and commercial purposes at massive profits. Medical health data trading is a multi-billion dollar industry. The process of de-identification supplies data that may be aggregated for a variety of analyses, such as basic scientific discoveries, policy & legal reviews, process refinement, pharmaceutical marketing, and other efforts. Data de-identification isn’t new but it is rampant. I’m gravely concerned about the free-for-all that is de-identification. You should be too.

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How Data Brokers Make Money Off Your Medical Records

Adam Tanner | Scientific American | February 1, 2016

A growing number of companies specialize in gathering longitudinal information from hundreds of millions of hospitals' and doctors' records, as well as from prescription and insurance claims and laboratory tests. Pooling all these data turns them into a valuable commodity. Other businesses are willing to pay for the insights that they can glean from such collections to guide their investments in the pharmaceutical industry, for example, or more precisely tailor an advertising campaign promoting a new drug...

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Q&A with Andy Oram: How Can We Tell Whether Predictive Analytics Are Biased?

Andy Oram | Zoom Data | May 24, 2017

The fear of reproducing society's prejudices through computer algorithms is being hotly discussed in both academic publications and the popular press. Just a few of the publications warning about bias in predictive analytics include the New York Times, the Guardian, the Harvard Business Review, and particularly a famous and hotly contested article by Propublica on predictions of recidivism among criminal defendants...

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Strengthening Protection of Patient Medical Data

Adam Tanner | The Century Foundation | January 10, 2017

Americans seeking medical care expect a certain level of privacy. Indeed, the need for patient privacy is a principle dating back to antiquity, and is codified in U.S. law, most notably the Privacy Rule of the 1996 Health Insurance Portability and Accountability Act (HIPAA), which establishes standards that work toward protecting patient health information. But the world of information is rapidly changing, and in this environment, U.S. rules fall precariously short in protecting our medical data...

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