Surveillance Capitalism and the Right to Medical Privacy
摘要
This chapter examines medical privacy issues presented by surveillance capitalism outside the legally confidential clinical context. Working with family resemblance accounts of privacy, I argue that for-profit medical data commodification practices, including data collection, aggregation, predictive modeling, and sale, undermine informational and decisional medical privacy without sufficient justification. Although some privacy infringements may be justifiable with voluntary informed consent, for medical research or to prevent significant and likely harm to public health, for-profit data commodification practices do not usually serve the public interest, and meaningful voluntary informed consent usually is not obtained. These privacy infringements expose people to a number of harms, including chilling effects, emotional distress, intrusive targeted advertising, manipulation, decisional interference, and in some cases, legal repercussions, particularly in the wake of the Dobbs decision. I conclude by calling for improved legal and technical privacy protections, transparent privacy policies, and the minimization of unnecessary medical data collection.