Phantom Data
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. All of the noir elements are there: It opens with a grizzled detective who narrates the story in the first person, so that you are looking at the clues through her eyes. You (as her) are thrown into the middle of a conspiracy that you must get to the bottom of, no matter how dangerous the investigation may be. And since this is a noir, there is no doubt that it will get treacherous. There is also the ominous presence of a mysterious, shadowy figure that you catch glimpses of, maybe as they turn a corner, but you never get a good look at them, only hints that they are there. You are not quite sure exactly who they are, and whether they intend you harm or if they are trying to warn you of danger. There are clues, little crumbs of conveniently dropped information that lead you down warrens of dream-like menace and torment. As you dig deeper into the muck, the dead ends leave you ungrounded; you lose your center, and you become increasingly confused and uncertain, not only about who this mysterious person is, but also about who you are. By the end, through your stupidly naïve and agonizing pursuit to uncover the mystery and firmly grasp the truth, all you are left with is the brutal discovery that the conspiracy is much larger than you can comprehend, its complexity overwhelming and silencing. The cruelest truth of all is that the mysterious person you were after was yourself, and worst of all, you were the intended dupe the whole time.
Where is the setting of this noir narrative—the rainy, dark streets of New York City? The sprawling, sun-bleached, desolate avenues of Los Angeles? No, this story unfolds in the data warehouses nestled in some of the remotest business parks and small towns across the USA. The characters of our narrative are distributed as bits of code in databases maintained by some of America’s most secretive corporations, such as Little Rock, Arkansas-based Axciom and the internationally sprawling Experian 1 plc, which is headquartered in Dublin and has locations in thirty-eight countries.
So this is the story’s setting. Now let us look at the death that starts out our narrative, because as we know, all good noirs start with a death.
A Curious Thing Comes a-Knockin’
What a curious thing is this?
As I stood in the foyer, my back to the opened door, the mail carrier Mr. Frederick rang the doorbell before I was even fully into the house. I still had my bag hanging from my shoulder and keys in my hand.
“Wow, Mr. Frederick, this is unexpected, but hey, I always like surprises.”
I live in a mid-Atlantic city neighborhood where a lot of my neighbors have deep Southern roots and retain a form of politeness long forgotten in most other US cities. It is the type of place where I both know the last name of my mail carrier, and I greet him as “mister.”
Mr. Frederick handed me the box with a friendly smile.
“Thanks, you have a good one,” I said as I let the screen door slowly close.
“You too,” replied Mr. Frederick. He turned and bounded down the front porch stairs to continue on his delivery route.
Looking down at the unexpected package in my hand, I closed the front door. I had just returned home from the first scan of my pregnancy. At six weeks, it was quite early, but given my age (I recently turned 42) and my history of miscarriages (two so far), Dr. Gaonkar, my doctor, was being cautious. I was enrolled in a clinical trial testing a new in vitro fertilization (IVF) drug that stimulates ovarian follicle growth, so Dr. Gaonkar also needed to collect data from the scan for the study’s sponsor. As a patient, I was not told who it was, but I assumed the sponsor was a drug manufacturer.
I put down my bag and gave the box a closer look. It was a white cardboard package, wrapped around a smaller box. The return address read Similac, and the brand’s marketing copy read: “Strong moms plan for great nutrition.” I shook the box close to my ear. It sounded like liquid sloshing against the sides of thin aluminum cans.
Softly chuckling to myself, I thought how strange it was to receive a box of unsolicited baby formula samples on the very day that I saw the fetal stem of my baby, nestled in the darkness of the ultrasound screen at my doctor’s office. How could the marketers possibly know that I was pregnant? A fleeting thought crossed my mind—“Doctor Gaonkar”—but I shook it out as quickly as it entered.
“A little early for this?” I murmured halfway under my breath, addressing the box.
What a wasted effort on Similac’s part. I marveled at how incongruous and off-the-mark marketers are, over and over again. They just never get it right with me. I would never feed my baby formula, especially from the likes of Similac or, worse, Nestlé. Being the sort of professional detective that I am, I kept a vigilant eye on big conspiracies, especially ones that involve large syndicates taking advantage of the poor and disenfranchised, and baby formula-makers are well known for promoting formula to low-income mothers and mothers in developing countries, who can scarcely afford the expensive breast milk substitute or who have no access to safe drinking water to mix the powder with. 2 No, I thought to myself, when my baby is born, she or he will be nourished from my body, not from a can.
This baby was years in the making. Four years, in fact. Over that time, I had undergone twelve invasive medical procedures, including intrauterine insemination and several rounds of in vitro fertilization. After going into more than $25,000 in credit card debt to finance my many attempts to make a baby, I was now entangled in a clinical trial. This was my last option. During these attempts, every single clinical visit, procedure, lab result, and discussion with my doctor or her nurses was documented in an electronic health record kept for me in the clinic’s computer, which is connected to the university medical system’s larger database network. These data were transmitted to my health insurer, the pharmacy, and other businesses, such as the assisted reproduction financing company as well as the issuing bank of the credit card I used for co-pays and expenses not covered by insurance. When I told my doctor that my health insurance would not cover any of the IVF procedures, she offered me a brochure for Advanced Reproductive Care, Inc. (ARC), a third-party business that has a relationship with fertility specialists and clinics, such as my doctor, to provide financing for IVF expenses (at a 14 percent interest rate). As a patient, I rarely thought of what happens to all of the data that was produced from my body, from my health status or even my ability to pay for my medical expenses that were all collected inside the doctor’s office. I was too busy being a patient, and I assumed that the information was private and secure, and, therefore, protected. These digital pathways that my health data traversed have become the trails of investigation I now pursue as a detective.
Though I certainly did not feel lucky in regard to my infertility, from time to time, I did think about other patients who were facing much bigger challenges than I—I was not fighting to stay alive, I was only struggling to make a new life. The day the unsolicited baby formula samples arrived, though, I was feeling pretty lucky. After all this time and all the emotional turmoil and physical exhaustion that undergoing artificial reproductive medical procedures produces, there were two heartbeats in my body. Maybe I was under a baby spell that day, because if I had thought about it, I would have remembered that only a few months earlier, during a time when I was not pregnant after having suffered two miscarriages, I had received several taunting phone calls.
“Hello?”
“Congratulations on your pregnancy! I’m Marla from Allaboutthebaby.com and I want to talk to you today about some of our products and services that we can offer you as a …”
“I’m not pregnant.” I cut off Marla’s chirpy little spiel mid-sentence. The tears began to well up in my eyes.
“Uh, but the computer says you are.”
Caught off guard, Marla was momentarily less chirpy. She sounded perturbed, not with the fact that she just caused a stranger anguish, but with the “they” that maintains the database that she is using to make the hundreds of autodialer phone calls during her shift that evening. “They need to update this.”
“They do!” I screamed into the phone. I hung up.
Looking back now, how could I have known that in my sixth week of pregnancy there was a conspiracy in the works, with me ensnared in the center of its web? And later, standing on my doorstep, looking down at the odd delivery of an unsolicited box of baby formula, how could I have imagined that this piece of direct mail was, in fact, a ghoulish premonition? Little did I know that I was about to be haunted by a tenacious phantom, for years to come. No, on that sunny February day I was too mesmerized, enthralled really, by the lively and lovely pixels that I had just witnessed on the ultrasound screen.
A week later in the doctor’s office, the week seven scan produced a worried look on Dr. Gaonkar’s face. As she stood in front of the monitor with her face in profile, I could see that she was counting the heartbeats under her breath. She said the heartbeat really should be about one hundred beats per minute, and she has counted only eighty. And the baby’s growth seems to have stalled at six-and-a-half weeks. Nothing to worry about, really, she said. Though there are benchmarks, each baby develops on its own timescale. She faintly smiled and patted me on the shoulder. I held on to her offer of hope. Over the past four years, she had made many such offers.
Over the next week, I consciously ignored the signs. My breasts stopped hurting as much as they had been and the welcomed waves of nausea had subsided. More than the physical signals, I just “felt” that something, a presence I suppose, had left me. When my husband and I went to Dr. Gaonkar’s office for another scan during the eighth week, the vibrating pixels were silent. The baby had died. My husband held my hand as I lay prone on the gurney, looked at me with wide eyes, and put his head on my breast. We cried together.
Through our crushing grief, my husband and I somehow left my doctor’s office, hailed a taxi, and made our way home. Unlocking the door, he pushed against a pile of mail that Mr. Frederick had delivered earlier. Waiting for me on the top of the pile was the first issue of a complimentary year’s subscription to American Baby magazine. I had not subscribed to the magazine. Through anger and tears, I summoned up my sleuthing skills, and tracked down the name and phone number of the subscription service that sent me the magazine. Dialing the 1–800 number I found on the masthead, I yelled at the hapless call center employee once I got through the maze of customer service button options.
“Can you let your bosses know, those marketing geniuses that they surely are, that my baby died today and I don’t want their fucking magazine!”
“Uh oh. I am soooo sorry … I will.” I hung up before he could say another word.
On that horrendous day, I started to collect the clues for the hard-boiled noir that you now are reading. Over the months and years since I lost my baby in March 2011, I have received more than eighty separate email solicitations, social media advertisements, phone calls, mailed boxes of baby formula and diaper samples, magazines, baby photography offers, baby clothes, and direct-marketing flyers advertising everything from savings bonds to cord-blood banking. Much of the unsolicited mail I receive features softly lit photographs of dewy skinned babies, so freshly scrubbed I can almost smell the baby powder through the image, who beckon to me to buy Enfamil formula or a $1,200 Bugaboo All-Terrain stroller. The bulk of the direct mail offers, however, are for children’s life insurance. I find these marketing offers particularly ghoulish.
One of the biggest clues, a real breakthrough for this detective, arrived in the mail on November 25, 2011, ten months after my final miscarriage. I received a letter from a local university research lab that focuses on early language development in infants. The letter invited me to bring my baby in to participate in some exciting new research focused on how infants acquire language before they start speaking. The letter closed with yet another invitation: “If you have any questions, call us!”
I called them. The lab manager, Eliza, answered the phone. I said: “I received your lab’s letter and I would like to know, thank you very much, how you got my information. I am a sociologist who studies medicine and the pharmaceutical industry. I don’t have a baby to bring in to participate in your study—I had a miscarriage ten months ago.”
I was shaking a little.
Eliza gasped, which made my shaking subside a bit. “Let me look up the record right now.”
Listening silently with my ear to the phone, I heard her tap the keyboard. She told me that they bought all of their recruitment databases from Experian, specifically a database called the Newborn Network. I thought to myself: “Wait, isn’t Experian the company that runs credit reports? Why would they sell mailing lists and how do they have this erroneous information about me?” As this detective was to learn during her investigation, the Newborn Network was just the tip of the iceberg.
“So, we bought this database of new parents in a four-county area surrounding the university, and in the database, we have your nam...