A 37-year-old pregnant woman worries about her family’s history of mental retardation. Genetic testing shows this woman is a carrier of the mutant gene for fragile X syndrome, an inherited form of mental retardation. U.S. and Dutch researchers have demonstrated that carriers and people with this condition show repetitive DNA segments in a gene called FMR-1). The woman is offered prenatal testing and says she will abort any affected fetus. She also indicates that she will abort a female fetus that is a carrier of the flawed gene. She states that she wants her legacy of this inherited disorder to end.
This case raises the issue of whether the woman should have the right to abort a healthy fetus that happens to be a carrier of a genetic mutation. In a sense, the mother is making her future daughter’s decision for her. By choosing an abortion, the patient has ensured that she will not have grandchildren who carry the flawed gene.
An overwhelming percentage of adult respondents said do the test — this woman (and every woman) has the right to abort a healthy carrier.
Students, however, split 50/50 on this question. Many students who opposed the woman’s decision took issue with her right to make a future daughter’s decision for her.
In addition, says one Georgia high school student, “This woman knew beforehand about her family’s history of mental retardation and should have considered this before getting pregnant.”
Yet many adult readers applauded the woman’s decision.
“This is a perfect example of how applied genetics can benefit society,” says William M. Coulter of Pennsylvania. “By making this decision, the woman takes steps to remove a harmful gene from the pool, increasing her chance of having a healthy child and improving the overall health of society.” Frederick E. Mangelsdorf of New York says, “a fine and noble woman this is, worrying about the future… Do what she wants.”
“This case is on the frontier of how we define health,” says Californian Richard H. Tew. “Appearing healthy can no longer by itself define ‘healthy.’ The woman’s decision to abort even a carrier heralds what will be the norm in not many years.”
Now for the expert opinion.
“Legally, she has the right,” points out Murray, but he adds that the choice flirts with eugenics. “This one leaves me feeling very uneasy.”
Caplan says that, unlike the dwarf parents, this woman seeks to abort a fetus carrying a known genetic flaw. He would offer her extensive counseling, yet if she held firm in her decision to abort, he would go along with it. Fragile X is a serious genetic disorder, one that causes much harm in the families who carry the gene for it, he points out.
Capron says, “Although many people might reach the opposite conclusion, it does not seem unreasonable for a woman with the [fragile X] gene to want to avoid ‘burdening’ her daughter with the same moral dilemma.”
It’s not the counselor’s place to override this woman’s decision, Pergament says. “I’m not sure I’m willing to begin that slippery slope of telling her what to do,” he says. “I would give her the information.”
Many readers question the direction DNA testing may be taking. “I feel that we have begun to use genetic testing for purposes other than what it was originally intended for,” writes Robert M. Heun of Massachusetts. A Virginia high school student concurs: “The health of a fetus should be the dominant concern. Not the personal [desires] of the parents.”
Heun and others also worry that the selection of fetuses may backfire, “decreasing the variations necessary to allow our species to survive.”
At the same time, says Jim Comstock of Texas, “Let us ponder ethics and morality all we wish, but let us not shut the door to discovery.”
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.