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3 Ethical, Legal, and Societal Considerations
Pages 17-20

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From page 17...
... By combining individual health information with a map, Snow quietly began a revolution in public health, by creating exceptionally powerful data that revealed new patterns and risk factors, said Tia Powell, director of the Montefiore Einstein Center for Bioethics at the Albert Einstein College of Medicine.
From page 18...
... But the anonymization of data proved more complicated than originally thought. Powell recalled the work of Latanya Sweeney, then a graduate student at the Massachusetts Institute of Technology, who in 1996 cross-referenced "de-identified" data from Massachusetts state employees that had been released by the Group Insurance Commission, and reidentified many of the individuals using publicly available voter rolls, which included name, address, zip code, birth date, and gender of
From page 19...
... . When HIPAA was updated in 2009 with passage of the HITECH Act,1 provisions were incorporated that were intended to strengthen privacy protection by establishing civil and criminal enforcement rules regarding the electronic transmission of health information.
From page 20...
... In response to concerns about the responsible use of genomic and other data, the Global Alliance for Genomics and Health2 was established in 2013. It brought together an international group of researchers, patient advocates, bioethicists, and privacy experts to develop best practices for sharing and protecting research data.

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