Introduction
The data industry has grown rapidly in the past decade, cementing itself as one of the largest and most profitable commodities and placing it alongside extractive industries like oil and natural gas. Social media interactions, online purchasing habits, engagement with media sites like YouTube or TikTok, or simple traffic to websites, all leave what is known as a digital trace—a way for algorithms to piece together all kinds of personal information about you from your behavior online.
An increasingly topical aspect of data harvesting for bioethicists is the collection and distribution of clinical health data. Over the course of administering health care, hospitals generate enormous volumes of patient data in the form of lab tests and measures of clinical wellbeing. This data is typically used for the purposes of diagnosis and informing care, but it can later be repurposed for secondary or tertiary research purposes. This raises all kinds of thorny ethical questions. What kinds of control should the patient be able to exercise with respect to their clinical data after it has been collected? And when and where should patient consent to the use of their data be mandatory? Bioethicists have spent considerable effort trying to formulate workable theory and regulatory policy to balance patient interests in autonomy and personal privacy with the public health benefits gained by repurposing clinical data, but it remains contentious exactly what the best way of promoting these dual interests consists of.
Assigned Readings
Thesis: Ballantyne puts forth several reasons to be skeptical toward conceiving clinical health data in terms of private property belonging to patients. For one, the data is “co-constructed” by medical and data science professionals who collect, process, organize, and house the data, so a property account would need to justify why the patient and the patient alone ought to enjoy exclusive property rights. Secondly, conceiving data in terms of property rights may not confer the kinds of privileges and benefits to patients’ interests that we assume it will, insofar as property rights are themselves subject to practical and legal limitations (the state can seize your property under the right circumstances, for instance). Ballantyne concludes that a better framework with less conceptual ambiguity and practical drawbacks would center on how patient data is about patients, rather than belonging to patients as a matter of property ownership.
Discussion Questions
- Why does Ballantyne think that [individual] “ownership” is the wrong model to think
about individuals’ relationship to their data (clinical data, or more generally, data about
themselves)? What reasons/arguments does she give (please list)? - What does she think is a better way to think about data ethics? She seems to still favor an
ownership model (relational rather than individual) of some sort—but why not just talk
about interests and give up on ownership all together? She advocates for a solution of reconnecting and reengaging patients in the research data enterprise—what does this mean and what do you think of this as an ethically or practically robust solution?