Psychology

Article 1 Your DNA decoded and Article 4 Truth and Consequences at Pregnancy high

 

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MARK ANDERSON

Ten years ago, it cost billions of dollars to map a single human genome. Today, it’s about $20,000 and likely to get even cheaper. If the average consumer can afford to have her own genetic map drawn up, what will it mean for medicine and how we approach our health care?

In early 2008, Henry Louis Gates Jr. stepped off his flight at LaGuardia Airport and began the process of having an elaborate set of blueprints drawn up: the map of himself, his entire human genome.

The Harvard professor of African American studies had at the time just hosted PBS’ successful miniseries, African American Lives 1 & 2. The miniseries, which Gates jokingly calls “Roots in a Test Tube,” traced the genealogical and genetic heritage of prominent figures and celebrities such as Oprah Winfrey, Morgan Freeman, Tina Turner and Chris Rock.

Also on Gates’ flight were officials from the Cambridge, Massachusetts-based genetics company Knome, who told Gates they were interested in working with him on other projects involving DNA testing. Already prompted by the miniseries’ fans to do a show about all Americans, Gates told the Knome representatives that this time he wanted to make a PBS series based on testing the full DNA (or “genome”) of some of his guests.

Every living thing on Earth is built from instruction manuals—an organism’s genes—found inside its cells. The complete set of instruction manuals is called a genome. For humans, the complete set is 6 billion characters long. We all inherit half of our body’s instruction manual (3 billion characters) from our mother and half from our father. When these strands bond together, the connections create units of information called “base-pairs.” Base-pairs can take on one of four values, signified by the names of the molecules from which they’re made: A, C, G or T.

Sequencing a person’s genome means discovering the value of all 3 billion DNA base-pairs—every A, C, G and T—in your body’s instruction manual. It’s the full host of biological blueprints that encodes uniquely who you are.

In 2003, only one human genome had been sequenced in the world, and it cost 50 cents per character. Today, just seven years later, the price has dropped to an astonishing 1/300,000 of a dollar per character. Within two to four years, because of rapidly advancing technology and economies of scale, the price is expected to fall by another factor of 10 or more—bringing the total cost of a full genome down to about $2,000.

The era of affordable genomes hasn’t yet arrived, but it isn’t far off—and mapping personal genomes at the price point of a laptop computer will change the face of medicine and, in a sense, the world.

For his 2009 series Faces of America, Gates traced the genealogical and genetic heritage of guests such as Eva Longoria Parker, Yo-Yo Ma, Meryl Streep, Stephen Colbert, Dr. Mehmet Oz and figure skater Kristi Yamaguchi. And, although Gates wanted to do full genomes of two of his guests, his scientific advisers recommended instead sequencing the genomes of both Gates and his father, 97-year-old Henry Louis Gates Sr. (Scientists hadn’t yet sequenced any African American’s genomes, nor had they sequenced a father-son pair.)

In fact, perhaps the most heart-wrenching moment in Faces of America comes when the program’s genetic experts subtract Gates Sr.’s 3 billion DNA base-pairs from Gates Jr.’s genome. And there, in bold blue and yellow lines, lies the stark genetic outline of the younger Gates’ mother, who died in 1987. “I put my father in this series,” Gates says. “And the big shock is, I got my mother back.” What Gates discovered about his mother was largely symbolic. He, like everyone, carries the blueprint of each of his parents inside his every cell for every moment of his life.

However, Gates also learned a boatload of information about his own life and health. A person’s genome carries crucial information about individual weaknesses to disease, susceptibility to various cancers, the effectiveness and ineffectiveness of various drugs and, ominously, some of a person’s more likely ultimate causes of death.

ALEX MORRIS

The education of a teenage mother.

Before the sun has risen over the Bronx River, an alarm chimes in 17-year-old Grace Padilla’s bedroom. Sliding from the lower bunk, she pads to the bathroom, flips on the light, brushes her teeth, then gathers up her hair into a short ponytail, which she wraps with a long row of black extensions and knots into a tight bun. She’s quick and efficient, with none of the preening one might expect of a high-school junior. At 6:30 A.M., she goes back into the bedroom to wake her 2-year-old daughter.

Along with her grandparents, her mother, her sister, and her child, Grace lives in a small two-bedroom apartment on the second floor of a nondescript brick building in Hunts Point, where nearly half the residents live below the poverty line and roughly 15 percent of girls ages 15 to 19 become pregnant each year. It’s the highest teen-pregnancy rate in the city, more than twice the national average.

“Lilah, wake up,” Grace whispers, leaning in close. Lilah bats her mother away with a tiny hand and nestles up closer to Grace’s own mother, Mayra, who had moments before returned home from her night shift as a cashier at a local food-distribution center and slipped, exhausted, into Grace’s place in the bed.

“Come on, let’s go get dressed,” Grace pleads, pulling her daughter from under the covers as Lilah begins crying, flailing her arms and legs.

“Come on,” Grace begs. She fights to keep her mounting frustration in check and then counts down the seconds before she’ll make Lilah go stand against the wall, her usual form of punishment. “Five … four … three … two … one.”

The threat is enough. Lilah’s body goes slack, her screaming dissipates to a whimper. Grace is able to wrestle her into the clothes she’d laid out beforehand. But the child’s screams have woken Grace’s grandparents, who are now in the galley kitchen, arguing in Spanish. Her grandfather has Alzheimer’s. He accidentally makes decaffeinated coffee, which infuriates his wife.

At 7:20, Grace smoothes a tiny hat over Lilah’s curls, bundles her into a coat, then jostles schoolbooks into a bag. In the empty lot across the street, a rooster starts to crow.

When Grace arrives at Jane Addams High School for Academics and Careers, she joins the daily parade of mothers—pushing strollers, grasping the chubby fists of toddlers, perching bundled babies on cocked hips—making their way to basement room B17, the headquarters of the school’s Living for the Young Family Through Education (LYFE) center. Run by the Department of Education, the LYFE program operates in 38 schools in the five boroughs, teaching parenting skills and providing on-site day care to teen parents who are full-time students in New York City’s public schools. Jane Addams hosts one of the most active branches in the city, with sixteen mothers currently in the program.

While the students sign in on a clipboard, social worker Ana C. Martínez flits among them with her checklist of concerns. Is this baby eating enough? (Yes.) Does that one still have a cough? (No.) When will the heat be turned back on in one young mother’s apartment? (Uncertain.) If it isn’t soon, has she considered going to a shelter? (She has.)

“How’s the baby?” Martínez asks Grace.

“She’s fine,” Grace answers.

Satisfied, Martínez turns her attention to Lilah. “Can I get a hug?”

“No,” the child replies coyly, pretending to hide behind her mother’s legs.

“Pretty please?”

Lilah finally concedes, jumping into the woman’s arms.

Martínez laughs. “We have to play that game every morning, don’t we?”

The girls cluster around a table laid out with bagels and jam, which Martínez serves every morning, both to entice her charges to be at school on time and also to make sure they get enough to eat (“Some don’t at home,” she clucks). She admits that the LYFE program, which serves 500 families and costs taxpayers about $13 million a year, has its naysayers, people who think that it makes life too easy for the mothers and diverts money from students who’ve made more-responsible choices. “But the reality is, teens are having kids, and we’ve got to work with them,” she says. “They’re entitled to an education.”

Grace greets Jasmine Reyes—a soft-spoken senior whose 2-year-old daughter, Jayleen, is Lilah’s best friend in day care—before going over to peer at Nelsy Valerio’s infant. When Iruma Moré enters the room with her 8-month-old daughter, Dymia, Grace beelines for the baby, unwrapping her from a pile of blankets.

“Dymia, Dymia, Dy-mi-a,” she chants, bouncing the child on her lap. “She’s so little,” Grace marvels wistfully.

Iruma giggles. “I try to feed her all the time,” she says, as she drops into a chair next to a locker crammed full of diapers. Though all four of Iruma’s older sisters were teen mothers, she didn’t know her school had day care until her sophomore year. “I started seeing the mothers coming in with their babies and stuff, and I always used to wonder where they take them,” she says. One day, she looked through a doorway and it was like peering into a magic cupboard—a roomful of babies with soft skin and fine hair. Iruma thought she might like to have one of her own. By her junior year, she was pregnant. “I wasn’t using nothing, no protection, so I mean, I knew it was gonna come sooner or later.”

The nursery is a clown’s paradise, brightly painted and well outfitted with funds donated by makeup artist Bobbi Brown. (In addition to the traditional high-school curriculum, Jane Addams teaches a number of vocations, including cosmetology, which Grace is studying.) Grace and Iruma each commandeer a crib and begin to strip down their daughters to their underwear, so that a caretaker can check the children for marks. Then the mothers fill out a form about when their child last ate, the child’s mood, how the baby has been sleeping. Just before the bell rings for second period, they leave the nursery and head upstairs to school. For the next seven hours, they’ll get to be kids again themselves.

Grace got pregnant in January 2006, less than a month after her 14th birthday and soon after she lost her virginity to a 15-year-old boy from the neighborhood named Nikko Vega. He was the only person she’d slept with, or even wanted to. After he broke up with a girlfriend (“A ho,” Grace sniffs), she began cutting her eighth-grade classes to meet him at his apartment. Even then, she had full curves and a round and inviting face. She was normally sweet, but if pressed, she could fire off a string of expletives so fast the words blurred together. Nikko liked that about her. One day, the two of them found themselves playing more than Nintendo, and they just let it happen.

“It was heat-of-the-moment stuff,” Grace says of having sex for the first time. Getting pregnant wasn’t even on her mind. But it was on Nikko’s: “A couple of hours after, I was thinking, like, Damn.” He eventually asked Grace if she should go on birth control, but they knew that would make her mom suspicious. They decided to take their chances, though it bothered Nikko to be so reckless. “A lot of people I knew had kids young, and I didn’t want to be one of them,” he admits. He had hoped to go to college on a football scholarship, had even made a pact with his friends to put off fatherhood. “Like, ever since we were younger, we all spoke about, ‘No kids.’ All of us.”

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