Who owns an individual’s personal medical information? In the past, the privilege of accessing that sensitive data belonged solely to patients, their doctors, and, perhaps, laboratories. Today, such information is often made much more widely available for scientific research and even for commercial use by pharmaceutical firms, particularly in the form of “big data” for studies that seek to find previously unknown patterns—a trend that is only likely to increase. This slim but informative book describes the sources of what the authors call “bioinformation” and the current and possible future beneficial uses of such data, such as identifying patients whose genes make them particularly susceptible to certain adverse medical conditions. Parry and Greenough also explore the ethical implications of using and sharing the data, including the possibility of privacy violations and other abuses, such as using health information to stigmatize groups of people. They close with a discussion of possible legal and institutional frameworks that would maximize the benefits and minimize the harms of large-scale medical data collection.
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