The U.S. government's recent attempt to force doctors to save all handicapped infants has resulted in nervous doctors ordering a "huge amount" of tests and "keeping helplessly deformed babies alive," some 400 participants in a genetic symposium were told today from Dr. Y. Edward Hsia, a pediatrician and geneticist from the University of Hawaii.
Hsia's statements were echoed by doctors throughout the conference who said the rule from the Department of Health and Human Services, which was rejected by U.S. District Court April 14 and is on appeal by the government, has restrained parents and doctors from acting on a case-by-case basis in complex situations.
As proof of the dangers of government intervention, some doctors cited the ethical problems of mandatory screening of newborns for disease. Screening was formerly done by 12 states, including the District of Columbia, Virginia and Maryland, but now is required only in New York and Georgia, said Dr. James Bowman, a professor at the University of Chicago, because of difficulties in following up problem cases.
Instead of rules like "Infant Doe," which makes it illegal for medical personnel to stop feeding or caring for handicapped infants, LeRoy Waters, professor of ethics at Georgetown University, suggested standards of whether a child has the potential for human relationships and whether treatment would be a grave burden to the child. He also urged the federal government to set up local ethics committees that could "provide advice to people caught in the middle of these difficult decisions."
Parents of handicapped children, including opera star Beverly Sills, urged health professionals at the conference to consider the wear on a family's self-confidence and their need for babysitters and vacations. Janice Starr, of Baltimore, said "faced with the crisis of need, even the most well-adjusted people come to doubt themselves."
Sills, who also urged the Senate Labor and Human Resources Committee yesterday to spend more money for preventive health, said the administration should not tamper with food and health programs that promote infant well-being. Sills, the general director of the New York City Opera, has a 24-year-old daughter who is deaf and a 22-year-old son who is deaf, autistic, retarded and epileptic. "It is a calamity to see a young human being not able to enjoy the full measure of life," she said.
Interest in genetic screening and an increased number of older mothers has caused such a rush for tests like amniocentesis, said Virginia Corson, a social worker at Johns Hopkins University Hospital, that that hospital and others are questioning which women should get the tests.
The nationwide conference, sponsored by the Johns Hopkins Medical Institutions, also tackled the problem of lawsuits on behalf of handicapped workers who are not hired because employers fear higher insurance costs, as well as the issues of fetal surgery and fertile women sterilizing themselves to keep certain jobs. With a recent Baltimore case fresh in participants' minds, Alexander Capron, professor of law, ethics and public policy at Georgetown University, questioned the right of the state to intervene in a woman's health. In the Baltimore case a doctor asked a Baltimore Circuit Court to force a pregnant woman to get off drugs in order to protect her unborn child.