A husband and his pregnant wife seek genetic counseling. Each carries one flawed copy of the gene responsible for achondroplasia; thus both are dwarfs. Recently, a California research team described the mutation in a gene on chromosome 4 that causes achondroplasia.
The counselor explains that genetic testing can determine whether the fetus has inherited the achondroplasia mutation. In the discussion, the couple inform the counselor that they will abort any fetus that carries two mutant genes. That's not surprising, since children born with two such genes rarely survive beyond infancy. Indeed, the couple had had such a child.
This time around, they say, they want a baby who is heterozygous for the achondroplasia trait. Such a child inherits a flawed gene from one parent and a healthy gene from the other parent. That genetic combination means the child will be a dwarf -- just like the parents.
At the same time, the parents say, they will abort any fetus that does not inherit one copy of the mutant gene.
Some things to consider include:
- The fact that achondroplasia is a fairly serious disorder. The bones can be abnormal in structure, sometimes requiring the use of a wheelchair.
- Yet many dwarfs live long, healthy lives and don't regard their condition as a disability. In addition, some couples with achondroplasia worry about the problems involved in raising a normal-size child.
- Under Roe v. Wade, women in the United States have the right to obtain an abortion during early pregnancy for a variety of personal reasons.
Many respondents believe only the couple should make such a personal decision. This view reflects the principle of autonomy.
Ann S. Pellegrino of Indiana says, "The job of the center is to provide the couple with the information they request, not to judge the morality of how the couple will use that information." She continues, "Healthy fetuses are aborted every day in this country by couples who feel, for whatever reason, that they will not be able to raise the child properly."
Ray N. Franklin III of Colorado says, "When the issue comes down to a choice of abortion or pregnancy, the choice is solely the woman's and is intensely personal."
Others felt the center should refuse to do the test. Many thought the principle of doing no harm outweighed the couple's right to make the decision to bear only a child with achondroplasia.
A Massachusetts high school student writes, "There's a chance the child might be ridiculed or not treated nicely by other kids." Robert C. Colgrove, also of Massachusetts, adds, "It should not be the job of a professional caregiver to help impose a genetic disease upon another human being."
Several respondents thought the couple's desire to select a dwarf fetus smacked of eugenics. California reader Don Coolidge says, "I find the parents' wish ethically abhorrent and in no way different from the Chinese practice of aborting females."
Here's what the experts had to say.
Arthur L. Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine in Philadelphia, argues against the couple's request. Knowing the parents intend to abort a healthy fetus runs counter to the mission of detecting disease-causing genetic defects. "There's nothing wrong with the fetus," he says, "and so you don't want to be involved in ending pregnancies for reasons that have nothing to do with your medical skills."
Although some dwarfs don't regard their condition as a disability, Caplan rejects that view: "I think that is simply inconsistent with medicine's view." He likens the dwarf couple's request to the practice of aborting a healthy fetus simply because it is the "wrong" sex.
Ethicist Alexander M. Capron of the Law Center of the University of Southern California in Los Angeles points out that by deciding to carry to term only a fetus destined to be a dwarf, the couple will expose their future child to "serious physical as well as social burdens." He adds that "while a woman has a right under Roe v. Wade to abort for whatever reasons convince her, physicians are under no obligation to supply information simply because a client wants it."
"An abortion of a healthy fetus because it is healthy is very difficult to justify morally," adds Thomas H. Murray, director of the Center for Biomedical Ethics at Case Western Reserve University in Cleveland. "I would urge the genetic counselor not to collaborate with the couple."
The geneticists and genetic counselors, who work daily with patients, tend to take a very different view, one that relies on the concept of nondirective counseling.
Genetic counselor Rosalie A. Goldberg of the Montefiore Medical Center in New York City points to the code of ethics adopted in 1991 by the National Society of Genetic Counselors in Wallingford, Pa. Those guidelines say counselors should respect their clients' beliefs and feelings and allow them to make independent decisions, a crucial aspect of nondirective counseling.
Geneticist Eugene Pergament of Northwestern University Medical School in Chicago agrees. "The dwarf couple may feel it would be psychologically difficult to raise a normal-size child," he points out. "The counselor and geneticist shouldn't let their personal feelings interfere with the couple's choice," he adds.
Sources: This article and reader responses appeared in Science News magazine in the November 5, 1996 and the December 17, 1996 issues. These cases were described by the organizers of the Bar Harbor ethics discussion: Clair A. Francomano of the Johns Hopkins University School of Medicine in Baltimore, Judith G. Hall of the University of British Columbia in Vancouver, Laird G. Jackson of the Thomas Jefferson Medical College in Philadelphia, and John A. Phillips III of the Vanderbilt University School of Medicine in Nashville.