Speculative Biodata, Materializing Value

• In Event: Constituting the Health Research Participant: Value, Assetization and Data Practices in Health Research

Abstract

My paper focuses on how biodata assets haunt health information networks in the United States. Such information is often assumed to be “private, bio-based data,” as it is produced by patients under legislative privacy protection, but these data undergo innovations and are packaged into data assets that are sold to data brokers. I discuss how innovation dematerializes and transforms health information from “dead” matter into “lively” data, a process that gives birth to both biodata assets that are used speculatively, and to a rematerialization of biodata for target marketing and for credit risk scores, such as the FICO score.

The biodata asset is imbued with a “phantom-like objectivity” that takes on a power and agency of its own (Marx 1976, Vol. 1:128). The social conditions of both capitalist medicine and algoritmic regimes in the U.S. help to construct the biodata asset. In fact, a market and risk scoring logic suffuse the anonymization, repackaging, and abstraction of health data (Rajan 2006, 42). This is the value of the biodata asset, and through this transmutation, the data goes on to live a life of its own in the databases of clinics, pharmaceutical companies, health informatics analysts, data brokers, credit card companies, and credit bureaus that directly profit from the buying and selling of biodata assets.

Throughout the paper I consider how these interventions raise questions about what is considered public and private information, open data mandates, biodata ownership claims, and how those tensions are exploited by US capitalist medicine and the healthcare industries, especially those companies working in digital health.

Author

• Mary Ebeling, Drexel University