[insert your life here]

More doctors are screening embryos for disease, even gender

By Marilynn Marchione
Milwaukee Journal Sentinel


MILWAUKEE ? At 19, she learned she carries the gene that causes Duchenne muscular dystrophy, an incurable neurological disease that strikes only males.

Then she watched her younger brother die of it, his last years spent in a wheelchair, his parents spoon-feeding him baby food.

So when she was 35 and wanted a baby, she and her husband went first to an infertility specialist. He analyzed their embryos and implanted only females so she wouldn't bear a child who would face the same fate as her brother.

"I have a good reason for what I'm doing," said the woman, who is expecting in July and declined to be identified. "Why would I want to have a child and know it's going to die at age 20?"

Situations like this are why doctors at many hospitals offer pre-implantation genetic diagnosis, or PGD, to screen embryos before a pregnancy begins. About 50 infertility clinics around the country now offer it.

The Medical College of Wisconsin program screens embryos only for gender-linked genetic diseases ? those that predominantly affect males because they have only one X chromosome ? and chromosomal abnormalities such as those that cause Down syndrome.

But one Milwaukee doctor in private practice, K. Paul Katayama, sometimes does it to help couples select the sex of their baby.

He said he considers doing it "if someone has a certain ethnic background, such as Indian. In their culture, males have to take over."

The practice is controversial.

"It kind of starts to treat gender like a disease." said Robyn Shapiro, director of bioethics at the medical college. "If we can do that, what about blond hair and IQ? It's dangerous. It really is."

Arguments on both sides

As with many controversies in the field of infertility, there are arguments on both sides.

Some oppose PGD because embryos with genetic defects usually are destroyed.

"It is alarming to me, not only as a pro-lifer but as a person considered to have a disability," said ProLife Wisconsin director Peggy Hamill, who has albinism, is legally blind and at greater risk for certain diseases as a result of the lack of pigment in her eyes and skin.

Others say PGD prevents abortions because embryos are screened before pregnancy.

Some say PGD is costly and a waste of medical resources ? $1,000 to $1,500 on top of the $9,000 to $12,000 for in vitro fertilization.

Others point out that those are private costs paid by the couple. Taxpayers often end up paying the medical bills of children with genetic disorders, they note.

Even helping couples select the gender of babies isn't necessarily unethical, according to the leading organization of infertility doctors, the American Society of Reproductive Medicine. The group doesn't endorse using PGD for nonmedical purposes but sees nothing wrong with doctors using a less-reliable technique ? sperm sorting and insemination.

How screening is done

PGD starts out with traditional in vitro or lab-dish fertilization of eggs. When embryos are six to eight cells in size and about 3 days old, one or two cells are removed from each and tagged with fluorescent DNA probes that allow their chromosomes to be analyzed. Only rarely does the process damage the embryo.

Healthy ones ? or only female ones if a couple is trying to avoid genetic diseases that strike males ? are transferred to the womb the next day.

Not all abnormalities or birth defects can be diagnosed through PGD because some require more sophisticated DNA analysis and sequencing. Cystic fibrosis is an example.

PGD is primarily intended for women older than 35, who have a higher risk of chromosomal abnormalities because of their age, and people with a family history of X- or gender-linked diseases.

"For the average pregnancy, there's a 3 percent to 5 percent chance for there to be a birth defect or complication," ranging from cleft palate to heart abnormalities, said Amy White, a genetic counselor in the Wisconsin medical college program. In families with a history of genetic disorders, it's higher.

"We want to help couples have a healthy child," said David Bick, a geneticist at Children's Hospital in Milwaukee and an associate professor of pediatrics at the Medical College.

About 15 health-care professionals are involved in the program, including physicians, embryologists, certified genetic counselors, nurses and lab workers. They're trained to stay neutral on sensitive issues.

"We always ask couples what they want done with the embryos" that are left over or genetically abnormal, Bick said. Options include donating them for research, freezing them for possible future use, destroying them or donating them to other infertile couples.

He and White say they try not to influence difficult decisions about whether to risk pregnancy if all available embryos show some defect, or if the defect is for a relatively mild or somewhat treatable disease or condition.

"I always try to give patients choices because I personally don't feel I should be telling patients what to do about their reproductive health," Bick said.


Copyright © 2003 The Seattle Times Company
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PGD bothers me. Aside from playing God, it takes all the surprise, mystery, and beauty out of this amazing reproductive cycle God has blessed us with. The unnamed woman in the article claims that her actions are justified in that she doesn't want a child who will die in a mere 20 years. But how much that child (if he had been born) could have experienced! How many lessons could he have taught others unlike himself. People with "disabilities" are amazing. Their perseverance and outlook on life are an example to everyone. What would the human race be like if everyone was healthy and perfect? Lame! Everyone would be the same! I think "disabilities" are indicators of our creative God.

"We want to help couples have a healthy child," the geneticist said. As does God. However, God's way of procuring healthy children is obviously best (He's the one who came up with the idea and therefore knows it thoroughly). God's way may result in a healthy child that is different from other children and that difference may result in him/her dying before other children but God has a plan for those few years of that child's life. And He has a plan for the grief and heartache and financial stress that may come on the family. His way is best.

Think about it: How would you like to be told by your parents that you were selected from the very best embryos available. Like they went shopping for you at the local egg and sperm market. Personally, I would feel more like a choice cut of beef than their special child.