Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

Who owns clinical data? (1022)

Angela Ballantyne 1
  1. Bioethics Centre, Dunedin

Who owns clinical health data? Claims of data ‘ownership’ are increasingly central to debates about the appropriate management of clinical data. Here I explore competing narratives about clinical data ownership. Potential owners include: (1) patients (e.g. calls for patients to be financial reimbursed for secondary uses of ‘their’ clinical data); (2) public sector agencies (attempting to provide cheaper, more efficient health services for populations); (3) private companies (trading in EHRs, mining data and selling data analytic services); and (4) calls for Indigenous Data Sovereignty (e.g. Te Mana Raraunga in New Zealand). I argue that the language of ownership acts as an umbrella concept that bundles together various different concerns, in particular the disenfranchisement of citizens in the existing data ecosystem. Too often, we jump straight from ‘ownership’ to a simplistic account of private property. But we can distinguish between two senses of ownership: data can be ‘about the patient’ without necessarily ‘belonging to the patient’. This distinction allows us to recognise and manage patients’ interests in data, without concluding that patient consent is necessary for all future uses; and allows us to acknowledge other interests in the data. Clinical data is equally ‘about’ families, communities, diseases and health systems. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and collectives and their data, and the solution is to reengage and reconnect patients and collectives to the data research enterprise. I present examples of this process of reconnection.