ALLENTOWN, Pa. _ The quest to root out genetic diseases such as cystic fibrosis or sickle cell anemia got a powerful tool a decade ago with the development of an embryo-screening technology.
Today, in a temperature-controlled lab tucked in a nondescript building in Salisbury Township, Pa., reproductive endocrinologist Bruce Rose also uses the emerging technology in a more controversial way: To help couples choose the sex of their babies.
The practice _ condemned in some religious and medical circles mostly because it involves discarding unwanted embryos _ was non-existent a decade ago, but is now offered in nearly half of the nation’s fertility clinics.
“We have the capability, we know it’s effective and we think it’s a choice patients should be allowed to make,” said Rose, who performs three to five gender-selection procedures a year from his practice, Infertility Solutions.
The technique _ Pre-Implantation Genetic Diagnosis _ is banned in many European countries for sex selection. However, no regulations or laws about how it should be used exist in the United States.
But Rose, who also uses the technology to screen for genetic diseases, said the procedure fulfills a centuries-old quest to choose the sex of a baby _ though he said the procedure is too costly, complex and invasive to spark any kind of widespread demand.
Critics worry that using the technology to choose gender is a first step toward designer babies, a move that could tempt couples to one day ask doctors to probe embryos to control traits like eye color or sexual orientation.
“Gender is not a disease and not something clinics should be testing for,” said Art Caplan, executive director of the Center for Bioethics at the University of Pennsylvania. “It’s not the way medicine should be going. It’s really the first step towards designing babies.”
For area clinics offering PGD for gender selection _ in Salisbury, Bucks County and Reading _ family balance is the primary motivator for clients.
“This is not a situation in which any one is saying that boys or girls are better than one another,” said Rose, who began using PGD for sex selection in 2004. “It’s for family balancing. They have a couple of boys and just want to see what life would be like with a girl baby. Those who go through this do this totally out of love _ not for low-end reasons.”
According to a 2006 study by Johns Hopkins Genetics and Public Policy Center, 42 percent of the country’s 415 fertility clinics surveyed offered clients the service of choosing the gender of their baby, though guidelines for the procedures vary widely from clinic to clinic.
For example, the Reproductive Science Institute, which has offices in Bucks County and Reading, advertises PGD on its Web site, but states that it will administer PGD for gender selection only if a woman is between 18 and 39, married and has at least one other child.
Though some local fertility doctors advertise the procedure on their Web sites, few area doctors will openly discuss it. Little information exists on exactly where and how often the procedure is performed for sex selection.
The Johns Hopkins survey, which kept clinics’ location and names confidential, found that many doctors grappled with ethical challenges and refused to use the high-tech procedure to meddle with fate.
“Couples for millenniums have attempted to control the sex of future children; there are all kinds of folk tales on how to do it. Well, here is a way for it to be done scientifically,” said Susanna Baruch, the director of reproductive genetics at Johns Hopkins and lead author of the study, which does not take a position on the issue. “Science has permitted it, but who is responsible for setting limits if limits are appropriate? Are the doctors responsible or are the patients?”
Baruch said most hospitals refuse to allow PGD for gender selection, a position that is reflected locally. Lehigh Valley Hospital reserves PGD for medically justifiable cases only. St. Luke’s Hospital doesn’t offer the procedure. Sacred Heart Hospital, a Catholic-run institution, refuses to screen embryos outside the body for any reason.
Yet Caplan, the bioethicist, agrees some gray areas exist when it comes to high-tech tinkering. Using the procedure to choose gender for family-balancing reasons “is arguable,” he said.
“I think there may be a family with four boys who wants a girl; that argument has a little bit of clout if they want a different child-bearing experience,” he said. “It makes a little sense.”
Denise Cummins, a labor and delivery nurse from Sacramento, Calif., said it’s difficult to explain the emotional pull that led her to make a choice that most people question.
But the mother of five boys wanted a girl, and she learned about the embryo-screening technique to stack the odds in her favor. She poured more than $11,000 into the first procedure, which identified the gender of a fertilized egg before it was implanted in her womb. It didn’t result in a pregnancy the first time. But after her second try a year later, which cost another $12,000, she got her girl.
“It was a desire that was in my heart and I couldn’t explain why it was there or why it wouldn’t go away,” Cummins said. “I wanted a daughter, and I wanted a guarantee of gender and that seemed like the only way to do it.”
Rose said he uses two procedures to help couples choose one sex over the other _ MicroSort, a sperm-sorting method that’s done before conception and doesn’t necessarily create excess embryos. Then there is PGD, the more controversial and more accurate procedure that involves creating embryos, fertilizing them through in-vitro fertilization _ removing a cell from the embryo and testing it for male or female chromosomes. Embryos of the desired sex are then transferred to the womb. Embryos of the undesired sex are frozen, donated or discarded _ a decision left up to the patient to decide, Rose said.
The Rev. John Hilferty, chairman of Sacred Heart Hospital’s ethics committee, said the destruction of embryos is the moral equivalent of abortion. The procedure, he wrote in a prepared statement, “violates the fundamental moral teachings of the Catholic Church” since it involves “choosing embryonic human beings with normal or desirable genetic characteristics to continue living and then destroying those embryonic human beings with unwanted characteristics.”
Rose said the fate of the embryo should be left up to the patient.
“Once an embryo is created, it is up to the person they belong to _ the source of the cell that made up that embryo _ to decide what they think is best for that embryo,” Rose said.
Not many people get to that point, though. Less than 5 percent of patients undergoing in-vitro fertilization opt for PGD to choose the gender of their baby, he said. Once the procedure is explained, the complexities and risks dissuade most people from attempting it, Rose said.
“If you could select the sex of a baby, for example, by just eating celery for two weeks, people would do gender selection,” said Rose, adding that insurance doesn’t typically cover the procedure. “But the whole process of going through it and getting involved in this part of life is not something most people want to do.”
However, he believes it’s important that patients are informed and allowed to make their own choices.
“If people have the ability to pay for the technology and think it will enrich their lives by having another child of a different sex, I think it’s a good thing,” he said. “We make choices all the time that are much more expensive and much more frivolous.”
Jolene Sedano believes in gender selection, but even as a mother who worked to sway the gender of her third child, there were boundaries that she wouldn’t cross.
The 31-year-old remembers the day she was told by doctors her third baby would be a boy, news that left her in tears _ since she had two boys and desperately wanted a girl.
“That’s when we thought about going high-tech,” she said.
But PGD, she said, wasn’t an option since it required discarding or donating embryos.
“Being a Catholic, I couldn’t do that. It’s discarding of life and it’s against my faith,” Sedano said. “I looked into sperm sorting, but at the end of the day, we thought it was too much of playing God.”
Instead, Sedano purchased a book, “Choose the Sex of Your Baby” that introduced her to a gender-swaying method _ dubbed the Shettles technique _ one she believes helped her produce a girl. The Shettles’ theory suggests that _ since male sperm swim faster, but die faster than female sperm _ couples should have sex three days before ovulation to conceive a girl. Though she opted against PGD, she understands the emotional experience that drives people to more invasive options.
“There are too many people out there like me who feel bad about their feelings to want a girl or a boy,” Sedano said. “It’s a desire, not disappointment that drives this. There is nothing wrong with boys, but you want the chance to raise both.”
Wendy Schillings, a reproductive endocrinologist at Lehigh Valley Hospital, said she is approached weekly by patients who want to know what they can do to have a boy or a girl. Most of them aren’t seriously seeking gender selection, she said, but they have a preference. Some, however, want to know how technology can help.
“Once I tell them what’s involved, they back away on their own,” Schillings said.
David Adamson, president of the American Society for Reproductive Medicine, said the group recommends against sex selection for nonmedical reasons, though the decision to offer the service is ultimately in the hands of doctors and clinics. Overall, doctors are not the ones pushing it, he said.
“The reason it’s occurring is because patients are demanding it,” said Adamson, adding that the practice, at this time, is not widespread enough for consequences to skew the population. “It’s driven by people’s desires. There have and will be some people who for whatever reason prefer to have one gender over the other.”
New York fertility specialist Norbert Gleicher was one of the first doctors in the nation to offer the procedure for gender selection. Gleicher, chairman of the Center for Human Reproduction in Manhattan, said he wrote the ASRM a letter in 2001, asking the group to take a position on gender selection procedures. In a 2001 statement, the society’s ethics committee discouraged PGD for non-medical reasons, but found that sperm-sorting _ the form of gender selection that doesn’t require the discarding of embryos _ is acceptable for family balancing.
“Up to that point, no one in the profession offered any form of gender selection,” said Gleicher, who added that it was almost taboo for doctors to talk about. “There were doctors up and down Park Avenue offering sperm-sorting, but nothing was proven to work and it wasn’t taken seriously. Now, we have a technology that’s really accurate.”
Though the ASRM ruled that sperm sorting was ethically acceptable, but PGD, was not, Gleicher said he felt it was his obligation to give patients a choice in the type of technology used.
“A decade ago, if I was approached about gender selection, I simply said, `we don’t do that,'” he said. “Once it was declared ethically appropriate, I have the obligation to offer it in the best and most responsible way. If there is a superior method of doing something, we have an obligation of telling patients and making it available to them.”
Annette Lee, of Abington Reproductive Medicine in Montgomery County, however, refuses to do PGD for gender selection. She said her clinic performs PGD to screen for gender-linked diseases but refers patients who want the procedure strictly for gender-selection to other area clinics.
“It’s more of an ethical dilemma for myself,” she said. “A lot of us went into this field to help people create babies. In this case, it seems like you’re knowingly creating embryos that have no chance. It goes against what we set out to do.”
Lee also said PGD offers little guarantee of success _ since there is no way of knowing how many embryos of the desired sex can be produced. She said it can be a long, drawn-out procedure that doesn’t result in pregnancy.
“There’s a 50 percent chance that a couple may spend $15,000 and end up with nothing,” said Lee, adding that older women face greater odds.
Cummins experienced that disappointment first hand _ when her first shot at PGD didn’t work.
“It was emotionally devastating to go through all that, know you have two female embryos and not get pregnant,” she said. “I never thought it wouldn’t work because I’m fertile. But it’s not a guarantee.”
On her second try, Cummins merged two gender-selection technologies, investing in MicroSort the sperm-sorting method and PGD. In April 2004, her baby girl Leigha was born.
“I did what I felt I needed to do,” said Cummins, who works as a labor and delivery nurse. “I’m thrilled with my boys and adore them. That wasn’t the issue. Something in my heart yearned for a girl, that relationship between mother and daughter. There was a drive in my heart led me down this path. I don’t have one regret.”
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