Mary F. E. Ebeling

The Body of Evidence

My investigations into the information circuits through which my data traversed led me to more questions than answers, and only deepened my confusion and uncertainty about where I might find my marketing baby. I began my detective work fiercely determined to master the network of disclosure, to understand the totality of the system and to confront the company that owns my data. My marketing baby’s bones and flesh of direct mail marketing have become the body of evidence for my hard-boiled investigation; that pile of bones speaks to me and taunts me to pursue it, to find it, to make it whole again. This body of evidence has my name on it.

The Rise of the Databased Society

This chapter focuses on the business of buying and selling consumer, health and financial data, and the skewed bargains that most patients are faced with in regard to their private information. Data brokers are companies in a variety of sectors that collect, collate, analyze, and profile individuals’ personal information. Through this process, data brokers create new data commodities that are traded and sold, usually business-to-business. For those corporations whose core business is the trade of data, most do not have contact or direct business relationships with consumers, thus the industry on a whole, remains largely hidden from public awareness and scrutiny.

Out of Death, a Birth

The story of phantom data, of digital specters and data revenants, is a true story. It is a story born from and haunted by death, in which death is made lively through data’s mobility. You could say that it is a hard-boiled ghost story. Focus is on how these data phantoms haunt health information in the USA. Such information is often assumed to be “private data,” as it is produced by patients within digitized healthcare systems, but these data in fact go on to be innovated upon, packaged into new data assets, commodified and traded among data brokers.

Coercive Consent and Digital Health Information

Most of us who access healthcare in the USA expect to receive a pile of forms when we check in at the front desks of our doctors’ offices. As patients, we often do not give a second thought to the type of contractual and transactional relationship with our doctors, nurses, with the entire healthcare industry that we are consenting to when we seek out healthcare. Do we enter into an equitable relationship or is it, by nature of the institution, always asymmetrical? We walk into the clinic and we know the drill; we are very familiar with the rituals in which we are required to participate. This humble detective is no different.

The Uncanny Lives of Data Commodities

Market logics suffuse the anonymization, repackaging, and abstraction of health data. My data was transformed into a commodity through the innovations made upon it. This is the value of the commodity and through this transmutation, the data goes on to live a life of its own in the databases of the clinic, as well as all of the other enterprises where my data was transfered and innovated upon. Some of my medical data was also sourced from my credit card transactions and prescription data, which were sold to data brokers. Out of these sociotechnical confluences, these data things are born and take on lives of their own.

Life After Death

Like all good noirs, this hard-boiled tale, this dark quest for knowledge, was doomed from the start. My object of pursuit, my marketing baby, was nothing more than an apparition, a phantom, though one that pointed to a much bigger but infinitely unknowable conspiracy. Like most noirs, this one has an ambiguous and inconclusive ending.

The Biopolitics of Lively Data

In this chapter, the property relationships between protected health data and the healthcare information industry, primarily third-party companies that have positioned themselves on the outer nodes of the legislatively constructed network of disclosure, such as electronic medical records software companies and health informatics enterprises are described and further explained. The hope is to disentangle, or at least trouble, the complex web of the health-data biopolitical economy.