{"id":3667,"date":"2020-01-14T00:50:42","date_gmt":"2020-01-13T23:50:42","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=3667"},"modified":"2020-01-16T22:17:57","modified_gmt":"2020-01-16T21:17:57","slug":"do-you-and-should-you-own-your-clinical-data","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2020\/01\/14\/do-you-and-should-you-own-your-clinical-data\/","title":{"rendered":"Do you, and should you, own your clinical data?"},"content":{"rendered":"

By Angela Ballantyne<\/p>\n

Rhetoric of \u2018ownership\u2019 is increasingly important to debates about the ethical management of clinical data. But the precise meaning of “ownership” remains opaque. \u00a0A dominant refrain in the media and some bioethics literature is that patients own their health data: \u201cThere is broad agreement that it is individuals who should not only control their own\u00a0data but also have the right to make decisions about access to their data\u2026\u201d<\/a> Eric Topol a leading research within the United States precision medicine initiative All of Us <\/em>has issued a data manifesto for patients claiming \u201cYou need to own your data; it should be a civil right.\u201d<\/a> Building on this idea, founders of the data research co-operative Savvy, and the LUNA DNA databank, argue patients should not be excluded from buying and selling in the lucrative medical data market:\u00a0 \u201cWhenever a patient is seen by a doctor, or enters their information into a medical app or platform, they\u2019re providing the health community an invaluable resource: their data. But they\u2019re not getting compensated for it.\u201d<\/a><\/p>\n

Ownership is a claim to a type of relationship. But too often we jump from the broad idea of ownership to a narrow conception of ownership as private property. The first point I make in this paper is to present a distinction between interpretations of the word ownership as indicating something that belongings to me as a type of property (my car, my house, my phone) and ownership as a type of relationship (my University, my daughter, my family). Personal data matters because it sits in relationship to the person whom the data is about. The patient has legitimate interests in who has access to this data and the purposes for which it used. But note that many other people also sit in relationship to the patient\u2019s clinical data. An individual\u2019s clinical data tells us something about:<\/p>\n