The Virginian-Pilot
                            THE VIRGINIAN-PILOT  
              Copyright (c) 1995, Landmark Communications, Inc.

DATE: Wednesday, February 22, 1995           TAG: 9502220453
SECTION: FRONT                    PAGE: A1   EDITION: FINAL  
SOURCE: BY MARIE JOYCE, STAFF WRITER
DATELINE: NORFOLK                            LENGTH: Medium:   95 lines

CORRECTION/CLARIFICATION: ***************************************************************** Children with Tay-Sachs disease, a fatal genetic disorder, are not disfigured, as stated in a story Wednesday about genetic testing of embryos. Correction published in The Virginian-Pilot and The Ledger-Star on Saturday, February 25, 1995, on page A2. ***************************************************************** DOWN SYNDROME BREAKTHROUGH? PRE-EMPTIVE STRIKE JONES INSTITUTE TO WEED OUT EMBRYOS BEFORE IMPLANTATION

The Jones Institute for Reproductive Medicine will begin clinical trials this year to screen embryos for Down syndrome before implanting them in a woman's uterus, allowing couples to select babies who are free of the genetic disorder, institute president Gary D. Hodgen said Tuesday.

The institute, part of Eastern Virginia Medical School, last year made history by using a similar procedure to screen for the fatal genetic disorder Tay-Sachs. The work led to the birth of the world's first child guaranteed free of Tay-Sachs.

Down syndrome, which causes mental retardation and physical defects, is far more common than Tay-Sachs - about one in every 800 children born in the United States, compared with one in 400,000 for Tay-Sachs.

In Down syndrome, an extra chromosome is attached to the 21st pair of a person's 23 pairs. Chromosomes, in the nuclei of cells, contain hereditary material that determines growth and development.

The extra chromosome causes mental retardation that is usually mild to moderate. Physical symptoms usually include certain facial characteristics and often defects in the heart and intestines.

Hodgen says the screening would be used in cases in which a couple is already pursuing in-vitro, or test-tube, conception to help overcome fertility problems. But the procedure could also be available to older women, who have a dramatically higher risk of giving birth to children with the syndrome.

Here's how this type of genetic screening works:

The woman takes medication to help stimulate ovulation. Eggs are removed from her ovaries and inseminated in a petri dish.

Genetic material is removed from the embryos' cells and are checked for the extra chromosome.

Normal embryos are implanted in the woman's uterus.

Hodgen said those couples going through in-vitro fertilization to treat infertility would not be pressured to have the test. During clinical trials, the procedure will be offered to patients for free.

``What we want these couples to have is a healthy child,'' Hodgen said. But ``the couple makes the decision.''

Medical ethicist Richard McCormick, who specializes in reproductive issues, said the Jones Institute is venturing into murky ethical waters as it broadens the use of in-vitro genetic screening.

Children with Tay-Sachs have severe disfigurement and always die, usually by age 5. People with Down syndrome often have shorter life spans, because it commonly causes congenital heart problems, but average life expectancy is 55 years.

``You're edging closer and closer and closer to prefab children, to eugenics,'' said McCormick, a Jesuit priest at the University of Notre Dame who served on the ethics committee of the American Society for Reproductive Medicine with Howard Jones, one of the founders of the Jones Institute.

``If my real abhorrence is to club foot, (do) you start doing that for club foot or hairlip?'' he said.

Hodgen said the institute chose Tay-Sachs for the first use of the screening technique ``because we wanted to demonstrate there are applications with diseases that are almost complete disasters for quality of life as well as longevity.''

He acknowledged that Down syndrome is comparatively mild. ``One does not see with the same clarity the usefulness of the test . . . to society,'' Hodgen said. ``But ask an individual couple how willing they are to deal with it.''

Some couples can accept a Down syndrome child, but others feel they can't, he said.

``Although we have a great plurality of opinion in society about this, more or less society decides this is a decision to be made by the individual couple,'' Hodgen said.

Currently, couples who don't want a child with Down syndrome have one alternative - abortion. Amniocentesis, a process in which a doctor removes and tests fluid surrounding the fetus, can detect the chromosomal problem.

There are no good statistics on the number of people who choose to abort a child with Down syndrome, said Dr. Julie Ann Neidich, director of obstetrics and genetics at Stanford University's medical school.

At Stanford's facility, Neidich estimates, about 90 percent opt to end the pregnancy. But that may not be an accurate picture, she said, because those who don't believe in abortion may refuse to have the test.

Hodgen's disclosure came the day before he was to receive a statewide award for his work on Tay-Sachs. He has been chosen the Virginia Outstanding Scientist of the Year by the Science Museum of Virginia, and will be recognized in a ceremony before the General Assembly in Richmond today. by CNB