Clinics can create babies with genetic defects on demand — yes, demand

But what if doctors started doing the opposite?

Creating made-to-order babies with genetic defects would seem an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them.

And a recent survey of U.S. clinics that offer embryo screening suggests it's already happening.

Three percent, or 4 clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability.

Some doctors have denounced the practice, others question whether it's true. Blogs are abuzz with the news, with armchair critics saying the phenomenon, if real, is taking the concept of designer babies way too far.

"Old fear: designer babies. New fear: deformer babies," the online magazine Slate wrote, calling it "the deliberate crippling of children."

But the survey also has led to a debate about the definition of "normal" and inspires a glimpse into deaf and dwarf cultures where many people do not consider themselves disabled.

Cara Reynolds of Collings-wood, N.J., who considered embryo screening but now plans to adopt a dwarf baby, is outraged by the criticism.

"You cannot tell me that I cannot have a child who's going to look like me," Reynolds said. "It's just unbelievably presumptuous and they're playing God."

Embryo screening, formally called preimplantation genetic diagnosis, is done with in vitro fertilization, when eggs and sperm are mixed in a lab dish and then implanted into the womb. Before implantation, a cell from a days-old embryo is removed to allow doctors to examine it for genetic defects.

The entire procedure can cost more than $15,000 per try.

The survey asked 415 clinics to participate; 190 responded and 137 said they have provided embryo screening. The most common reason was to detect and discard embryos with abnormalities involving a missing or extra chromosome, which can result in miscarriage or severe and usually fatal birth defects.

The survey is being published in an upcoming print edition of the medical journal Fertility and Sterility. It appeared in the online edition in September. Clinics were asked many questions about embryo screening, including whether they'd provided it to families "seeking to select an embryo for the presence of a disability."

"We asked the question because this is an issue that has been raised primarily by bioethicists as something that could happen," said Susannah Baruch of Johns Hopkins University's Genetics and Public Policy Center.

"It's sparking a lot of conversations," she said. "These are difficult issues for everybody."

While it's technologically possible, whether any deaf or dwarf babies have been born as a result of screening is uncertain. The survey didn't ask. Participating clinics were promised anonymity, and seven major screening programs contacted by The Associated Press all said they had never been asked to use the procedure for that purpose.

Screening pioneer Dr. Mark Hughes, who runs a Detroit laboratory that does the screening for many fertility programs nationwide, said he hadn't heard of the technology being used to select an abnormal embryo until the survey.

"It's total nonsense," Hughes said. "It couldn't possibly be 3 percent of the clinics" doing screening for this purpose "because we work with them all."

He said he wouldn't do the procedure if asked.

"To create a child with a disability because a parent wanted such a thing ... where would you draw the line?" Hughes wondered.

"It's just unethical and inappropriate, because the purpose of medicine is to diagnose and treat and hopefully cure disease," he said.

For the same reasons, Yury Verlinsky, another genetic-screening pioneer and director of Chicago's Reproductive Genetics Institute, said he also would shun those requests.

Dr. Jeffrey Steinberg, whose Fertility Institutes clinics in Los Angeles, Las Vegas and Guadalajara, Mexico, screen embryos for sex selection, said he'd likely consult ethicists if he were ever asked to help couples select a deaf or dwarf baby.

"Clearly it crosses some bounds," he said.

He'd get a provocative response from University of Minnesota bioethicist Jeffrey Kahn.

"It's an ethically challenging question and certainly it will trouble people, but I think there are good, thoughtful reasons why people who are deaf or ... dwarves could say, 'I want a child like me,' " Kahn said.

The traits are, for some, an important part of their cultural identity.

"If people in a shared culture all have the common clinical defect, then it's maybe not a defect in the traditional sense," Kahn said.

More challenging would be if normal-sized parents said they wanted a dwarf child, and yet, he added, "Why is that different from dwarf parents saying, 'We want only an average-size child?' "

Embryo screening — scientifically known as preimplantation genetic diagnosis — has not been performed at the UA, which operates one of two genetic-counseling programs in Tucson.

"We would do it if someone asked, but no one has asked us," said Dee Quinn, a University of Arizona genetic counselor.

Because screening costs $15,000 per try, "It's a big decision for families to make, not only emotionally but financially," she said.

Screening is done when an artificially conceived embryo has only eight cells, before it is implanted in a woman's uterus, Quinn said. One of the cells is removed and tested, and the remaining seven cells "just keep multiplying the way they do until you get a baby," she said.

"This can only be done when we can genetically identify a disabling condition, but there are a number of conditions for which we still don't know the gene responsible," she said.

Quinn said she respects the rights of parents to make their own decisions about whether such testing is ethical or appropriate.

"Some families feel they could not raise a child with physical disabilities, and other families say, 'Oh, that would be fine with us, but we couldn't raise a child with intellectual disabilities,'" she said.

The UA program helps about 500 couples and families each year with childbearing decisions, Quinn said.

— Jane Erikson