NO EASY ANSWERS
On certain dark days Alyson Babson wonders what the success of genetic screening could mean for the future of her daughter, Maggie. “If we stop having kids with CF,” she asks, “how will we get more drugs and therapies for those who do have it?”
“There is something strange,” adds Biesecker, the genetic counselor, “in that as a society we’re pouring money into cystic-fibrosis research–while pushing abortion of cystic-fibrosis fetuses.”
But experts say there’s little possibility that cystic fibrosis will disappear. “If the purpose of this screening program were to try to eliminate cystic fibrosis, it would be unsuccessful and also inappropriate,” says Michael Mennuti, M.D., the secretary of the American College of Obstetricians and Gynecologists. “First of all, the test won’t get to everyone. Some important percentage will decide not to have the test, and some proportion wouldn’t terminate even after prenatal diagnosis. And there will still be an enormous interest in finding the definitive treatment and cure for this disease.”
The Rays are a perfect example of how eugenics–the science that aims to improve the human race by tinkering with genetic stock–works in the crazy muddle of modern life. In January 2000, eight of Cindy Ray’s embryos–then just eight-celled balls–were tested by a geneticist who searched the DNA for mutations in the cystic-fibrosis gene. Four of the embryos were CF carriers; the other four were free of mutations and were implanted in Cindy’s womb.
The Rays hoped that one of the four would develop into a child, but they got more than they bargained for. A sonogram at ten weeks turned up three heartbeats. “I had hopped out of one frying pan and into another,” says Cindy, adding, “We laughed for 30 minutes and cried for three days.” The triplets arrived two months early, and each spent from six to eight weeks in neonatal intensive care. The extra embryos will likely be donated to science. “Let’s face it,” Cindy says. “I’m not going to use any more of them to make babies.”
The in vitro-fertilization procedure that created the triplets cost $10,000; the genetic diagnosis, another $3,500. Insurance didn’t cover those costs, but it paid for the triplets’ births and hospitalizations–to the tune of $300,000. Cindy could have “reduced” her pregnancy to twins through a partial abortion, but that was not an option she would consider.
The Rays made a complex philosophical decision, one of the thousands, perhaps millions, of moral reckonings Americans are making in the era of cutting-edge medicine. Guided by their Mormon faith, the Rays oppose abortion to eliminate a fetus with cystic fibrosis. But they feel no such qualms about an embryo, which may be just a few weeks or days younger. “I don’t believe embryos are alive yet,” says Cindy Ray. “They can’t live to grow to be babies in a petri dish. I know it seems contradictory that I would never abort a child with CF but would go through such painstaking effort to have a child without CF. But if you look at it another way, technology is a gift from God, since there are some bleak cases of cystic fibrosis. But,” she adds, “there are wonderful people, like Cindy Lynn, too. And, you know, we would clone her. We really would.”
SHOULD YOU BE SCREENED?
IF YOU OR YOUR HUSBAND IS CAUCASIAN AND YOU BECOME PREGNANT, YOUR OBSTETRICIAN WILL PROBABLY OFFER YOU CYSTIC-FIBROSIS SCREENING (AN ESTIMATED 175,000 PEOPLE WERE TESTED IN PILOT PROGRAMS THIS YEAR). TO MAKE YOUR DECISION, YOU NEED TO CONSIDER SEVERAL THINGS.
* The test isn’t 100 percent accurate. Most medical labs will check for only the 25 most common mutations. The result: Your child could be one of some 300 babies whose disease wouldn’t be caught by the CF screen.
* The test can’t tell you how severe your child’s condition may be. CF has more than 1,000 mutations, and they can greatly affect its seriousness, but scientists don’t yet know which gene combinations produce which symptoms. What’s more, several other factors, such as stress, family relationships, financial worries, and exposure to infection, can modify the effects of the disease.
* If you are not Caucasian, you are still at risk. Testing generally isn’t offered to non-Caucasian women, because their risk is substantially lower, but you may want to consider it anyway. About one in 29 Caucasians in America carries a single copy of the CF gene, compared to about one in 46 Hispanics, one in 60 African Americans, and one in 90 Asian Americans. That translates into a risk factor of one out of 2,500 Caucasian babies being born with CF, versus one in 8,500 for Hispanic couples, one in 15,000 for African American couples, and one in 32,000 for Asian American couples. Mixed-race couples in which one partner is white may also want to be tested. Many insurers pay for the test; if yours won’t, you’ll pay about $260.
* If you skip testing, your newborn can still be screened. At least eight states (New York, Wisconsin, Wyoming, Colorado, Massachusetts, Pennsylvania, New Jersey, and California) now require, or soon will require, hospitals to screen newborns for CF. You can also ask your pediatrician to have your baby tested.
For more information on cystic fibrosis, contact the Cystic Fibrosis Foundation (www.cff.org) or the International Association of Cystic Fibrosis Adults (www.iacfa.org). For information on genetic screening, look up statements on the American College of Obstetricians and Gynecologists’ website (www.acog.org) or on the site of the American College of Medical Genetics (www.acmg.net).