Inalienable data: Ethical imaginaries of de-identified health data ownership

Abstract

Many legal, ethical, and regulatory frameworks allow de-identified health data to be shared for research without patients’ opt-in consent. However, there may be public concerns about this practice, as people may feel they should have some say in how such data is used. This paper introduces the concept of the “inalienability of de-identified data,” to describe a key assumption underlying that public concern and preference. The assumption, derived from ethnographic research with public and professional stakeholders in AI driven medical image analysis over the past two years, refers to a sense of felt ownership over de-identified health data, even where the subject has been obscured as referent and no clear legal rights of data ownership otherwise exist. The concept is important to medical ethics because it underpins public expectations regarding the rights people should have over the sharing of medical data (including expectations for consent). We note that where those expectations go counter to current legal and bioethical frameworks for de-identified data sharing, they provide a challenge for public support of big data and artificial intelligence driven health research.