Introduction
In this essay, I will argue for the idea that you have an ownership claim on the sort of health data generated when you go to the doctor. I will ground this argument in Locke’s ideas about property and use this argument to demonstrate how certain violations might follow from uses of this data in big data biomedical research.
Big Data
But what is big data? The term refers to the analysis of a variety of large datasets to quickly identify new trends and insights (Howe III & Elenberg, 2020). Big data can be extremely useful in biomedical research. Large data sets can be used to train artificial intelligence on everything from diagnosing pneumonia to identifying malnutrition.
Big data offers big promises to researchers, but it requires lots of data. This data can come from different places and is regulated in different ways. The measurements your physician takes may be subject to HIPAA, whereas the same measurements taken by a personal fitness tracker would not be. For the purposes of this essay, I want to focus on the kinds of data generated when patients or subjects interact with physicians and researchers, as this data is more likely to be used in the context of biomedical research and medicine than other forms of data, such as the information collected by a fitness wearable. People can choose whether or how to use devices or applications that collect and use their health data. People cannot so easily opt to forego healthcare, and so I think it is useful to focus on the sorts of data used in medical practice and research.
Your Data
I now want to present an argument about people’s relationship to their health data.
If data is about you, then you are necessarily its subject. It would not exist without you. John Locke famously contended that if you own anything, you own your own body (2003). He also argued that you own those things you mix with your body or for which you exert labor. The sort of data physicians take on you is unique in that it intimately describes your body. It can describe things as essential to you as your heartbeat or your genetic code. Few things are as inherently personal. Much health data is a result of the most basic labors we do. Our respiratory rate describes our very breathing. If anything is to count as our property, it should be things so intimately related to us. Thus:
- Data about a person is that person’s.
- It is prima facie wrong to use something that is another person’s without their consent and/or in a manner to which they would object.
- Therefore, it is wrong to use other people’s data without their consent.
Some philosophers distinguish wrongs from harms, so we’ll treat both here. Wrongs have to do with violating rights and harms have to do with thwarting interests (Beauchamp & Childress, 2017, p. 118). If you have a property claim on health data you almost definitely have associated rights and can be wronged. On the other hand, you may be harmed if your interests are thwarted. If someone uses data without your consent in any way, your interests may be thwarted as you might not have been interested in them doing so.
Some, however, have objected to the idea that property rights might apply to data. For instance, I. Glenn Cohen thinks that labor is not really involved on subjects’ part in the generation of health data (2019, p. 212). Instead, he claims that your health data was co-produced by you and your healthcare provider as they employed their medical expertise to gather it. It is, he says, a by- product of you seeking healthcare. I would argue that if data is a byproduct of your seeking healthcare, it is still a production, even if unintentional, of your efforts. You may not have been driving steel, but you were doing something. Additionally, if your health data is a co-production, why would both producers would not have claims on it. You were still involved, if only as a subject. Even if Cohen is correct about a diminished involvement in data production by data subjects, it is unclear why exactly the data wouldn’t count as subjects’ property in some way.
If you are not yet convinced of even a weak claim on health data, consider the following. Health data is intimately personal not unlike information about one’s sexual orientation. Even if we do not suppose that people own such information, most people believe that it is wrong to out people who may be subject to discrimination based on their sexual orientations. We tend to think that privacy matters with personal information, and the extension of this notion to health data is seen in U.S. law with the HIPAA Privacy Rule. These notions about privacy and confidentiality with personal information seem to suggest subjects having some claim on it.
Objectionable Uses of Your Data in Research
For all that has been said about unauthorized data use, it might not be exactly clear how harm can arise from it. I want to give an example now. Consider the Havasupai Indian tribe. Arizona State University (ASU) collected DNA samples from the Havasupai under a broad consent. Some members of the tribe believed that their genomic data was to be used expressly for research about the tribe’s susceptibility to diabetes, but it was also used in studies which investigated topics, such as their ancestral origins, which undermined the religious and cultural beliefs of the tribe. ASU eventually acknowledged that they had done wrong (Beauchamp & Childress, 2017, p.146).
Anonymization of data is often discussed as a way to prevent its misuse. The reasoning might follow something like “if the data cannot be traced to a person, then it cannot hurt them.” I think, however, that the above example helps demonstrate why this might not be the case. Data about the Havasupai, for instance, needed only to be linked to the tribe to be used as it was. Anonymization in the sense of de-association from individuals would not have sufficed. Similarly, people may have difficulty with even their anonymized data being used in studies to which they object. The data still came from them - anonymization just changes the ability of anyone to identify who that individual is. This suggests that existing protections and regulations relying on anonymization may not be as robust as supposed and perhaps could benefit from revision.
I have argued that certain forms of health data can be treated similarly to other property and that. harms can result in cases where the manner in which health data is used conflicts with the wishes and beliefs of the data subject. Part of my argument involves health data’s personal nature, and thus should not automatically be taken to extend to other forms of data. Big data research has a lot potential for medicine, and hopefully it will be done ethically.
- Beauchamp, T. L., & Childress, J. F. (2017). Principles of Biomedical Ethics (7th ed.). Oxford University Press.
- Cohen, I.G. (2018). Is There a Duty to Share Healthcare Data?. In I.G. Cohen, H.F. Lynch, E. Vayena, & U. Gasser (Eds.), Big Data, Health Law, and Bioethics (pp. 209-222). Cambridge University Press
- Howe III, E.G., & Elenberg, F. (2020). Ethical Challenges Posed by Big Data. Innovations in Clinical Neuroscience, 17(10-12), 24–30.
- Locke, J. (2003). The Project Gutenberg eBook of Second Treatise on Government. Gowan, D., & Grief, C. (Ed.). Project Gutenberg. https://www.gutenberg.org/files/7370/7370-h/7370-h.htm
