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.