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.
For me, like most parents, the simple black and white test results box gave reassuring news and even something extra. Amidst it’s chromosome counting is the identification of sex chromosomes. It reveals XY for a boy and XX for a girl. Trembling with excitement, my husband and I learned we’d be welcoming a little girl. When we told our 4-year-old daughter she delighted in the news, made possible by a technology not available when she was born. (Not that the results surprised her; she’d been expecting a sister all along.) For the first time in history, sex is revealed early in pregnancy, often only a few weeks after seeing those double lines on a test. While it brings expectant parents joy, it’s the control over our reproduction that some ethicists worry over, citing among other concerns like the woes of gender imbalance in countries such as China and India. It’s not just gender that has people worried. We have the potential to screen for much more. In 2012 the first noninvasive test of whole genome fetus screening was published, opening the door to a whole new level of genetic understanding. In addition to the risk of childhood diseases, parents can peek into their child’s medical future, uncovering their risk of breast and ovarian cancer, diabetes, even physical traits such as hereditary baldness and eye color. The boundaries lie only in the ever-widening limits of our scientific knowledge. Genetic tests could lead to fantastic medical care—greater screenings for cancer; early treatment for diabetes—but they could also potentially sully the unbounded potential a newborn has in her parents’ eyes. For better or worse, these tests are a part of both our present and future. In the United States newborn genetic screening is mandatory, although the tests performed vary from state to state. How long until prenatal genetic screening becomes just as essential?
A human being is never more hidden from the world than inside the womb. Perhaps this is why people are drawn to the swollen bellies of pregnancy, rubbing them gently and asking endless questions. We want to know what’s concealed. A noninvasive prenatal test was key to the first peek inside: the ultrasound. The images were grainy black and white, hardly resembling a baby at all but parents didn’t care. They were elated to sneak a glimpse inside the womb. The technology diagnosed abnormalities, but for most parents the screening simply brought them closer to the life growing inside. What for all of human history was hidden now revealed. Our new era of pregnancy technology has the same ability to save lives while bonding us closer to our babies.
Yet there is also the risk of knowing too much. In the 40 years since ultrasounds became standard practice in the US, they too have transformed. The once grainy images have been replaced with 3D/4D ultrasounds that construct the features of the face. The detail is incredible. I gasped as I watched the fetus—I now knew was the size of a large banana—inside me break into a smile. But the image was odd; the baby looked something like a melting Skeletor. It was a reminder that the data will keep getting bigger, the images will gain clarity, and yet none of it can possibly compare to holding the real thing in your arms.
An earlier version of this story incorrectly reported that non-invasive prenatal genetic testing has a lower rate of false positives for Down's syndrome than amniocentesis. Biomarker screening, not amniocentesis, entails a higher false-positive rate than non-invasive genetic screening.