ROANOKE TIMES

                         Roanoke Times
                 Copyright (c) 1995, Landmark Communications, Inc.

DATE: FRIDAY, March 1, 1991                   TAG: 9103010166
SECTION: VIRGINIA                    PAGE: B3   EDITION: METRO 
SOURCE: CHARLES HITE MEDICAL WRITER
DATELINE:                                 LENGTH: Long


FEDERAL RULES BLAMED FOR LAG IN MEDICAL RESEARCH

The federal government is stifling research that could lead to more effective treatment of genetic diseases, infertility, cancer, diabetes, Parkinson's disease and other disorders.

That's the view of two speakers who are to appear this week at Hollins College for a two-day symposium on reproductive technology and ethics.

Federal funding restrictions for research on human embryos and fetuses amount to "an ideological suppression of science," says John Fletcher, director of the Center for Biomedical Ethics at the University of Virginia.

Private funding has diminished because it has been caught up in abortion politics, says Dr. Howard Jones, director of a nationally known fertility clinic at Eastern Virginia Medical School.

Jones' clinic plans next spring to test 3-day-old embryos for genetic abnormalities. Researchers will extract a single cell from a four- or eight-celled embryo, then screen its DNA for life-threatening genetic defects. Only those embryos not affected by disease would be implanted in a mother's uterus.

Studies involving test-tube fertilization and early development of embryos are needed, Jones and Fletcher say, if researchers are ever to improve the disappointing record of in-vitro fertilization and other techniques designed to help the estimated 2.4 million infertile couples in America. Nearly half of the in-vitro clinics in the country have failed to achieve a live birth and only 12 percent of women entering treatment are successful.

Since 1979, federal regulations have excluded funding of most research on embryos. In 1988, the government also banned funding of research involving transplantation of human fetal tissue obtained from induced abortions. Researchers believe such transplants could treat Parkinson's disease - a chronic disorder of the nervous system - and some forms of diabetes.

The major barrier to federal funding of embryo research has been the lack of a national Ethics Advisory Board, Fletcher and Jones say. The board was created in 1978 to advise the secretary of health and human services about the ethical acceptability of such research. But the board was allowed to lapse in 1979. Without it, regulations prohibit the government from funding such research.

Frustrated by the failure of the Reagan and Bush administrations to reauthorize the board, two major medical societies announced last month that they would establish a private one.

Jones says the private board should help reassure private funding agencies that embryo and fetal research has been reviewed by a broad-based committee concerned about ethical questions.

Fletcher says the board will bring ethical focus on research that has been unregulated and disorganized for more than a decade.

Abortion opponents believe the board is simply a "rump panel" set up by abortion rights advocates to "override federal policies that protect the fetus," says Douglas Johnson, legislative director of the National Right to Life Committee.

Jones, Fletcher and others who support the board want to use embryos and fetuses as "experimental guinea pigs" and would ignore the protections given other human subjects, Johnson says. "The division is between those who regard the unborn as members of the human family and those who see the unborn as raw material."

Fletcher says current regulations of embryo research make no sense. "Does it make sense you can do extremely risky research with living children, such as cancer research that may kill a child, and yet we can't touch embryos? Are embryos more valuable than that child?"

The government's policy on embryo and fetal research, Fletcher adds, is at odds with the government's support of the " human genome project" - an effort to collect, map and sequence all human genes so scientists can better diagnose and treat genetic disease.

Obviously, Fletcher and Jones say, there have to be limits on experimentation involving human embryos. Many ethical questions arising from such research need to be addressed, they add. Among them:

Is it acceptable to create embryos specifically for research? Or should research be allowed only on "spare" embryos that remain after a couple has undergone in vitro fertilization?

If a woman considers providing tissue from an abortion, what rules are needed to ensure she is adequately informed, yet not encouraged to have an abortion she may not otherwise have had?

Is it proper to take samples for genetic testing from a fertilized egg even before it is implanted in the uterus?

Resolving many of these issues depends largely on coming to an agreement on the moral status of the embryo, Fletcher and Jones say.

Some argue that a fertilized egg has the moral status of an adult human. Others argue that "pre-embryos" - fertilized eggs less than 14 days old that have not attached to the uterine wall - should be treated with greater respect than human tissue, but not the full respect given to actual persons. These embryos are not humans, they add, because they do not have brains.

Fletcher argues that embryo and fetal research will help reduce the huge toll of genetic disorders: Almost one-fourth of newborn deaths result from genetic or chromosomal causes; of every 100 babies born, about four will have congenital malformations; and about one-third of children admitted to pediatric units in the western world need treatment for the complications of genetic disorders, congenital defects or mental retardation.

Fletcher and Jones will hold a news conference Friday at Hollins. Jones and his wife, Dr. Georgeanna Jones, will give a keynote address Friday night.

Fletcher and Janet Gallagher, a New York attorney specializing in health law, will give lectures Saturday morning followed by an afternoon panel discussion that includes patients who have undergone infertility treatment.



 by CNB