Election makes prenatal tests a massive campaign issue
Common tests spark controversy in presidential race
Republican presidential candidate Rick Santorum has attacked President Obama's healthcare law initiative, which intends to give free screenings for birth defects to all pregnant women by requiring insurers to cover the costs of the test. (For a related story about the future of prenatal blood tests, see story, below.)
Santorum's young daughter was born with Trisomy 18, a genetic disorder in which a person has a third copy of material from chromosome 18, instead of the usual two copies. Symptoms of Trisomy 18 include clenched hands, feet with a rounded bottom, low birth weight, and mental deficiency. Santorum has said in interviews that he believes the law is a gateway to abortion, because it is a way to encourage more women to have abortions that will "cull the ranks of the disabled in our society."
Bernard W. Freedman, JD, MPH, clinical bioethicist and health law attorney at Clinical Bioethics Consults, Los Angeles, says, "Santorum's comments are ethical because he is running for office, and he has the right, and the electorate has the right to know his perspective on the subject of abortion. It is preferable that he does so than to have a hidden agenda."
While Santorum has connected common prenatal testing to abortion, Bruce Jennings, MA, director of bioethics, Center for Humans and Nature, Dobbs Ferry, NY, says, "The term 'gateway' is a derisive term in this context that does not further clarify thought or ethical action." However, prenatal testing does provide information guiding decisions concerning abortion, he explains. Sometimes it is a factor leading to a decision to abort; sometimes it is a factor leading to a decision to carry the pregnancy to term. "The vast majority of abortions occurs in the first trimester and is largely influenced by considerations in the woman's life other than prenatal test results," Jennings says.
According to research1 in the Journal of the American Medical Association (JAMA), the use of next-generation sequencing will enable the detection of a larger number of harmful genetic variants, thereby expanding the number of pediatric disorders evaluated without substantially increasing the costs of newborn screening.
Jennings says there are ethical implications pertinent to three dimensions of offering free prenatal screenings:
- making tests available: access and equity questions;
- providing information to the pregnant woman, and others, about the fetus before birth: the right to know, the obligation to know, the burden of knowledge;
- the decisions the pregnant woman makes concerning medical care as a result of this information: whether or not to terminate the pregnancy.
Personal medical information is just that: personal and intended for the sole use of the patient. Freedman says that you must ask what the reasoning is behind the screening.
"The intent of a provider of the screening should not make screening unethical unless there is a misuse of the results of the screening, which would include surreptitious efforts to influence or manipulate behavior or the free exercise of choice, such as to counsel for abortion. To do so is not ethical," he says. "Similarly, attempts to prevent screening for birth defects in order to withhold the free exercise of choice to prevent abortion, is not ethical."
Genetic testing to genetic intervention
Amniocenteses have been used for many years, but it might not have been equally available to marginalized populations. This figures in to the issue of ethnic, racial and socioeconomic disparities in care. Some might choose abortion, and others might benefit in preparing for a child with genetic predisposition to disease.
"From a medical ethics point of view, distributive justice protects autonomous decision-making and guards against governmental paternalism," says Freedman.
Not knowing something but fearing it can lead to abortion; in such cases tests can sometimes prevent abortions. Jennings says, "there are many times in which a woman or a couple may say they would terminate a pregnancy in the face of a positive test for some disability beforehand and in the abstract, but actually follow a different course in the context of the pregnancy and in the context of their own beliefs and feelings and the information they receive and the support that may be available to them."
As technology extends from genetic testing to genetic interventions and clinical uses, we will pass through many enhancements of therapy that should be the cause for ethical celebration, as in more effective treatments for cancer, for example, says Jennings. "But the fantasy that talks of perfect children is the same fantasy of control that talks of positive biological enhancement and a radical extension of the lifespan, even a technologically mediated form of deliberate biological evolution of human beings," says Jennings.
Reference
- Goldenberg A, Sharp R. The ethical hazards and programmatic challenges of genomic newborn screening. JAMA 2012; 307:461-462.
Sources
- Bernard W. Freedman, JD, MPH, Clinical Bioethicist, Health Law Attorney at Clinical Bioethics Consults, Los Angeles. Email: [email protected].
- Bruce Jennings, MA, Director of Bioethics, Center for Humans and Nature, Dobbs Ferry, NY. Email: [email protected].
Is analysis of fetal DNA ethical? A blood test that was created at Stanford (CA) University is said to be able to detect genetic defects, such as Down syndrome, very early in a woman's pregnancy and is a great deal less invasive, unlike amniocentesis. There are legal and ethical implications associated with this emerging technology. The findings about the tests were reported1 in the Journal of the American Congress of Obstetrics and Gynecology. The simple blood test carries a relatively low price tag at only $1,200 per kit, and it analyzes fetal DNA. The controversy begins with parents knowing soon after conception, everything about their child including any genetic defects, as well as gender and hair color. "Prenatal testing has been described in that way as a tool for the production of perfect 'designer babies.' As such, biotechnology does little to advance human flourishing, but much to diminish our humanity and to commodify our children," says Bruce Jennings, MA, director of bioethics at Center for Humans and Nature, Dobbs Ferry, NY. The tests that are on the market only seek major abnormalities on three chromosomes: 13, 18, and 21. They can also tell whether a fetus is a boy or girl. The case study that was reported in the Journal of the American Congress of Obstetrics and Gynecology accurately detected all 89 cases of Down syndrome in 532 maternal blood samples. It also detected 35 of 36 cases of Edwards syndrome and 11 of 14 cases of Patau syndrome. The tests count the millions of DNA molecules from both the mother and baby and can detect excessive genetic material that signals a birth defect. Reference
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