Bump Tracker: Nine Months of Big Data

Sometimes this slick new marketing world backfires. In her article, “The Pregnancy is Gone but the Promotions Keep Coming,” April Salazar describes what happened when she received a package of formula from Enfamil. The samples came as she approached what would have been her due date with the box reading jauntily, “You’re almost there!” But instead, of welcoming a baby, April and her husband had made the difficult choice to terminate her pregnancy months earlier after learning the baby had a lethal disorder. She had never signed up for free formula samples. What she had done was sign up at a popular pregnancy site, likely the same one I did, to track the growth of her baby. She’s not alone. Many women receive these welcoming packages from formula companies, ostensibly celebrating the due date of a baby, but instead offering only a heartbreaking reminder of what could have been. With some 10-20 percent of pregnancies ending in miscarriage (and this number is likely higher), this is an anguish shared by many—most of whom never signed up for formula in the first place but whose due dates were sold by data brokers, pregnancy websites, maternity stores and even obstetrician offices.

In a now famous case reported by the New York Times, a man learned of his teenage daughter’s pregnancy only after she received coupons for maternity clothing and nursery furniture from Target. The dad angrily complained to managers that the company was promoting teen pregnancy before sheepishly apologizing that, “It turns out there’s been some activities in my house I haven’t been completely aware of.” This invasion of privacy was made possible by newly engineered computer systems. Five years ago, big data explorations were fracturing under software running on generic hardware. A new strategy, pioneered by Oracle, takes an architectural approach to combining hardware and software. These advances are making data mining even more comprehensive, able to combine a pregnant teenager’s on and offline behavior for better targeting.

Massive data brokers such as the firm Epsilon, whose high profile customers include Wells Fargo, Toyota, Macy’s, as well as Target, are benefitting from these engineered systems, such as Oracle’s Exadata. The technology might be more sophisticated but concerns linger over the security of these massive data banks. Epsilon had what was once called “the biggest if not the most expensive, security breach of all time” when part of the company’s 40-billion-member email lists were hacked, resulting in widespread phishing scams and a loss of $4 billion. It raises the question, if these companies are collecting data both on and offline, what other information could be breached? Will pregnancy data be stolen as well as sold?

Data mining provides some benefits to consumers. It may be creepy that Target knows to send me diaper coupons so soon after I learn I’m pregnant, but I have a better chance of benefitting from them than I do, say, coupons for denture cream. Still, it seems we should have some say in who knows we’re pregnant. This, however, is not what government regulators have decided.

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The sale of consumer information is regulated by the Government Accountability Office (GAO), which in 2013 found that there is no comprehensive privacy law governing the collection and sale of consumer data and that, under current law, consumers have no right to know what information has been gathered about them or control how personal information is collected, even sensitive health information such as pregnancy.

While data miners pry into our private lives, the biological data that makes up a pregnancy is rapidly changing. Unheard of only a few years ago, today prenatal genetic testing is becoming routine in the United States. Blood is drawn from a pregnant woman early in pregnancy and fragments of the fetal genes, which make up roughly 10 percent of the DNA floating in her blood at the end of the first trimester, are teased out. The fetal DNA is then sequenced, the chromosomes counted. The test acts as a screen for genetic diseases caused by extra or missing chromosomes—such as Down’s syndrome, Edward’s syndrome, and Turner’s syndrome—many of which are severe and can be lethal. Revealing this genetic information to parents gives a world of choice when deciding how to cope with a medical disorder. These genetic tests are slowly replacing the need for risky medical interventions. Before the tests were widely available, the only alternative was amniocentesis and chronic villus sampling (CVS). These tests use a needle inserted through the abdomen and into the womb to either sample the amniotic fluid or the placenta. Both procedures carry a small risk of miscarriage and are undoubtedly more dangerous than a simple blood draw.

Genetic testing can also be performed earlier, giving parents the option to end pregnancies afflicted by medical disorders. Prenatal genetic screening is widely available from multiple companies, including Harmony, Verifi, MaternitiT21 and Panorama, although insurers may only cover the cost if a woman falls into a high-risk category because of her age (over 35) or medical history. In the two years noninvasive genetic testing has been available, it’s benefitted hundreds of thousands of women. Many believe the screening will soon become just another tube of blood of the many taken from pregnant women at their doctor’s office.

But while the blood draw is simple, the results are not always clear for parents. The test is not meant to diagnose but instead acts as a screen. Because of this, test results are presented in terms of risk, say, one in 10, or one in 10,000. This can be a little confusing for parents unaccustomed to looking at probabilities. While a doctor performs an amniocentesis or CVS, genetic test results are handed down from a private company. This means there’s no standard method for delivering the medical data—or for discussing the decisions that may come next. Some parents receive the news that their child is likely to have Down’s syndrome in a two-minute phone call. This is the moment when genetic counseling is most needed but may not always be offered. Roughly two-thirds of parents whose fetus has been diagnosed with Down’s syndrome will choose abortion. The percentage is much higher for other trisomies, which often cause a short, painful life.

Presented by

Nathalia Holt is a microbiologist and author of Cured: How the Berlin Patients Defeated HIV and Forever Changed Medical Science and Rise of the Rocket Girls: The Women Who Propelled Us From Missiles to the Moon to Mars.

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