Ferris Jabr in Scientific American (photo: Katie Tegtmeyer, Flickr):
Preventing and treating diseases are not the only reasons people have turned to pre-implantation genetic diagnosis. PGD also makes it possible for parents to predetermine characteristics of a child to suit their personal preferences. In a few cases, people have used PGD to guarantee that a child will have what many others would consider a disability, such as dwarfism or deafness. In the early 2000s, lesbian couple Sharon Duchesneau and Candy McCullough—both deaf from birth—visited one sperm bank after another searching for a donor who was also congenitally deaf. All the banks declined their request or said they did not take sperm from deaf men, but the couple got what they were looking for from a family friend. Their son, Gauvin McCullough, was born in November 2001; he is mostly deaf but has some hearing in one ear. Deafness, the couple argued, is not a medical condition or defect—it is an identity, a culture. Many doctors and ethicists disagreed, berating Duchesneau and McCullough for deliberately depriving a child of one of his primary senses.
Much more commonly, hopeful parents in the past decade have been paying upwards of $18,000 to choose the sex of their child. Sometimes the purpose of such sex selection is avoiding a disease caused by a mutation on the X chromosome: girls are much less likely to have these illnesses because they have two X chromosomes, so one typical copy of the relevant gene can compensate for its mutated counterpart. Like Marie and Antonio Freeman in Gattaca, however, many couples simply want a boy or a girl. Perhaps they have had three boys in a row and long for a girl. Or maybe their culture values sons far more than daughters. Although the U.K., Canada and many other countries have prohibited non-medical sex selection through PGD, the practice is legal in the U.S. The official policy of the American Society of Reproductive Medicine is as follows: “Whereas preimplantation sex selection is appropriate to avoid the birth of children with genetic disorders, it is not acceptable when used solely for nonmedical reasons.” Yet in a 2006 survey of 186 U.S. fertility clinics, 58 allowed parents to choose sex as a matter of preference. And that was seven years ago. More recent statistics are scarce, but fertility experts confirm that sex selection is more prevalent now than ever.
“A lot of U.S. clinics offer non-medical sex selection,” says Jeffrey Steinberg, director of The Fertility Institutes, which has branches in Los Angeles, New York and Guadalajara, Mexico. “We do it every single day. We did three this morning.”