Do you, and should you, own your clinical data?

By Angela Ballantyne

Rhetoric of ‘ownership’ is increasingly important to debates about the ethical management of clinical data. But the precise meaning of “ownership” remains opaque.  A dominant refrain in the media and some bioethics literature is that patients own their health data: “There is broad agreement that it is individuals who should not only control their own data but also have the right to make decisions about access to their data…” Eric Topol a leading research within the United States precision medicine initiative All of Us has issued a data manifesto for patients claiming “You need to own your data; it should be a civil right.” 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:  “Whenever a patient is seen by a doctor, or enters their information into a medical app or platform, they’re providing the health community an invaluable resource: their data. But they’re not getting compensated for it.”

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’s clinical data. An individual’s clinical data tells us something about:

  • the patient’s family (e.g. genetic data and big data analysis of the social determinants of health)
  • the patient’s community (e.g. the health of their demographic, geography, ethnic, or cultural groups)
  • a treatment (e.g. information about the safety or vaginal mesh or the efficacy of prostate screening)
  • the aetiology of disease (e.g. understanding which benign conditions are likely to progress to malignant cancers)
  • health systems and processes (e.g. evidence of institutional racism and barriers to fair access to health services and referrals)
  • an individual clinician’s practice (e.g. the clinician’s prescription rate of antibiotics relative to peers)

So while the patient has legitimate interests in the access to and use of clinical data, all these other groups also sit in relationship to the data and they have legitimate interests in access to and use of it. A narrow interpretation of ownership as private patient property obscures all these other parties’ connections to the data. The second point made in the paper is that data research primarily concerns the interests of collectives.  Data research is not interested in the experience of one patient or the prescription patterns of one clinician. The focus of data research is to identify patterns and correlations across populations and groups. Furthermore, the implications of much current data driven research apply to groups, not individuals – for example, shifting funding within the health system, decisions not to publicly fund certain treatments, closing down programs, changing eligibility criteria for services, the risk that AI in health care will entrench existing gender and racial biases.

Some assert that patients own their data because they have produced it. This alludes to a Lockean conception of ownership deriving from production.

“People see their health data as being the product of their bodies and actions.”

“Data provided by humans can thus be seen as a form of labour which powers AI.”

The third point of the paper is to argue that this common view is mistaken, at least with respect to clinical data. Clinical data is co-constructed via a collaborative process involving the patient, the clinician, and many other professionals within the health system. The primary clinician extracts, interprets, processes, classifies and describes the patient’s medical history. Other health professionals create radiology images, test blood samples and conduct gene sequencing. In countries with public health systems, the state pays to collect and store this data. The patient can plausibly be said to have provided the labor to write a personal diary entry about their upset stomach. But this diary entry will differ substantially in terms of content and value to their health records; and this difference is a result of the intellectual work done by the health professionals involved. Given this collaborative process of co-construction, patients lack a compelling claim to a form of exclusive, private ownership of their health data.

 

Paper title: How should we think about clinical data ownership? [OPEN ACCESS]

Author: Angela Ballantyne

Affiliations: Department of Primary Health Care and General Practice and the Bioethics Center, University of OtagoWellington, New Zealand

Competing interests: None

Acknowledgments: Thanks to Wendy Rogers, Cameron Stewart, Graeme Laurie and Liesel Theron for their advice and input to the arguments developed here, to the anonymous reviewer’s for their constructive suggestions and to the SHAPES Working Group on Big Data (CBmE, National University of Singapore) for fruitful discussions.

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