Answer
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."
Share your thoughts with others.
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.
Go to Question 2
Introduction
Imagine you're playing a board game called GENES-R-US. You roll the dice and pick a card. It says: You're a 29-year-old pregnant woman. You've just been told you have a gene that almost always causes breast cancer in early adulthood. Your daughter-to-be has inherited this gene. Do you:
A) Abort the fetus to avoid a disease that won't strike for decades?
B) Carry the pregnancy to term and hope your daughter will not develop cancer until a cure has been found?
If you think such a scenario is science fiction, think again.
In the 1990s, researchers isolated the long-sought gene responsible for two inherited forms of breast cancer. The flawed versions of this gene, dubbed BRCA1 and BRCA2, are thought to put women at extraordinarily high risk of developing breast cancer. In 2005, it was announced that British women undergoing in-vitro fertilization would soon have the option of selecting embryos to implant based on whether or not they contain the flawed gene. This process is known as pre-implantation genetic diagnosis, or PGD. It's already used to screen for cystic fibrosis, haemophilia, Huntingdon's disease and Duchenne muscular dystrophy.[1]
As geneticists bag their quarry with increasing speed, unresolved medical and ethical issues continue to surface. Society has yet to settle, or in some cases even address, the complex questions that abound in this brave new world. And the road ahead surely contains many more conundrums created by newfound knowledge.
The virtual explosion in genetics research during the last 20 years has led to the identification of not one, but two human genomes -- male and female -- and genes that underlie heart disease, colon cancer, cystic fibrosis, Duchenne muscular dystrophy, Huntington's disease, and most recently, Parkinson's disease, as well as a variety of other ailments that have plagued human beings for millennia. Researchers around the world continue their feverish hunt for other elusive disease-causing genes.[2]
Such advances bring many tangible benefits to society and to people who suffer from genetic disorders. For example, the discovery of the malfunctioning cystic fibrosis (CF) gene led to the identification of a protein that produces the abnormally thick mucus that clogs the lungs of people with this disorder. Researchers have used that information to fashion new therapies for this disorder.
Recently, researchers took a historic first step by inserting a healthy version of the CF gene into the lung of a patient with cystic fibrosis. This process is known as genetic enhancement.
These examples represent a new frontier in genetic discoveries. The Human Genome Project, completed in 2003, charted the estimated 100,000 genes that orchestrate human life. This ambitious undertaking means that people of the future may obtain a computerized printout of their genetic code. Couples in such a world may ask for -- and get -- a detailed DNA profile of an embryo floating in a petri dish.
Such knowledge can prove potent. Insurance companies may refuse to offer coverage to a healthy infant whose DNA foretells a heart attack 40 years later. Indeed, some of the thorny aspects of genetic testing have already surfaced. Geneticists offer a blood test for Huntington's disease, yet this illness has no cure. Thus, people who opt for the test may spend years waiting for the first signs of their deterioration.
Scientists and ethicists routinely discuss the ethical difficulties raised by the project to map the human genome. Yet such discourse must move out of the realm of academia. Society must weigh in on the debate, as it touches nearly every aspect of what it will mean to be human in the 21st century.
What do you think? Take the interactive poll and see how you would react to some of these real-life ethical dilemmas.
Each summer, at the Short Course in Medical and Experimental Mammalian Genetics held at The Jackson Laboratory in Bar Harbor, Maine, researchers meet to discuss scenarios that illustrate the many facets of genetic counseling.
Article and poll adapted from Fackelmann, Kathy A. "Beyond the Genome: The Ethics of DNA Testing," Science News Online, November 5, 1994.
1Henderson, Mark. "How embryo screening may be the new way to beat cancer." The (London) Times, November 4, 2004.
2Connor, Steve, "War of the sexes: How chromosome study shows male and female genetic differences." The Belfast Telegraph, March 17, 2005.
2Carroll, Linda, "Parkinson's Research Focuses on Links to Genes and Toxins" New York Times, February 10, 2004
Question 1
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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. |
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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.
Answer
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."
Share your thoughts with others.
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.
Question 2
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A 30-year-old woman has been diagnosed with familial adenomatous polyposis, an inherited condition that puts her at extremely high risk of colon cancer. Indeed, most people with this condition, if untreated, will develop the cancer by age 40. The patient's own mother died of colon cancer at age 32. Despite this grim history, the woman refuses to share the diagnosis with her family, including her four siblings and her husband. In addition, she does not want her two children to be tested for the genetic flaw. Researchers know that the mutant gene responsible for this disorder lies on the long arm of chromosome 5. This flaw results in hundreds or thousands of polyps, small wartlike growths, carpeting the lining of the colon. Some of the polyps will become malignant. |
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Something to consider:
Who "owns" the information encoded in a person's genes? Bear in mind the fact that the rest of the family shares a common heritage with this woman.
Answer
Many respondents raised the concept of beneficence in their solutions.
Anna DelPrato of Massachusetts writes, "I was astonished and outraged that there should be any doubt as to whether or not the woman's family should be told that they may be carrying a harmful gene." A Georgia high school student says, "I don't see how the counselor could just stand by and watch these unsuspecting relatives careen down a path toward a horrible death any more than I could watch a runaway train hurtling toward a kindergarten playground and not shout out a warning."
A college student from Louisiana urges the counselor to tell the rest of the family. The patient is "placing her entire family at risk of death just to protect her pride or job." This student, who is 18, says he speaks from experience: "I have familial adenomatous polyposis."
Yet some readers believe the right of confidentiality remains paramount.
A Michigan college student writes, "A patient's right to privacy has to be honored, even if family members are at risk."
Says Kathleen M. Vyborny of Illinois, "The woman's information does not point to any identifiable victim, and there is no near certainty that any disease will immediately develop." Eileen Roy of California adds that "The family is perfectly able to seek testing on their own behalf if they desire it."
Share your thoughts with others.
On this case, the experts agreed: All would warn the family.
This troubling case pits the woman's wish to keep her diagnosis private against her family's right to know of their legacy, Pergament says. "As important as confidentiality is, it is not as important as a person's life." He would counsel the woman extensively about the need to tell the family. If she still wouldn't, Pergament would try to find a way to notify the relatives without violating the contract with the woman.
"This patient has a moral obligation to tell her relatives," Murray adds. If the woman still refused after counseling, Murray says her physician would be justified in notifying the family of its risk.
Caplan would also override privacy concerns in this situation. "I think there is a duty to warn if you can prevent a real harm from befalling somebody else."
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.
Question 3
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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. |
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Answer
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."
Share your thoughts with others.
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.