Whose Life Is It? : Weighing the Ethics of Keeping Unborn Babies Safe from HIV
If you knew thousands of babies could be saved from the deadly AIDS virus, would you want your government to do everything in its power to save them?
If that meant stigmatizing poor women or incarcerating mothers to force them to take their medicine, would you feel differently?
The questions are no longer hypothetical.
For the first time in the bleak history of the AIDS epidemic, a way has been found to stop the spread of HIV from mother to child. Last November, a team of French and U.S. scientists announced that maternal transmission of the AIDS virus to newborns was cut by 70% when infected women were given the antiviral drug AZT during pregnancy.
But what was offered by AIDS researchers as their grandest achievement yet has produced not elation but cynicism and anxiety--and a growing ethical debate over how to get the lifesaving treatment to those who would benefit the most.
At the center of the debate is whether to legislate health care. Should pregnant women be forced to undergo HIV testing, as has been proposed by Los Angeles County Supervisor Mike Antonovich and elected officials elsewhere in the nation?
Then, if a woman tests positive for HIV and refuses treatment, should she be punished with jail?
Until now, prevailing law and medical ethics have generally allowed competent adults to refuse any medical care for themselves--including AIDS testing and treatment. (In some states, for example, convicted rapists cannot be compelled to take an AIDS test. Yet in other states, tuberculosis patients have been jailed for refusing treatment.)
“Lack of care already causes a lot of bad outcomes in pregnancy and we don’t do anything about that,” fumes bioethicist Vicki Michel of USC’s Pacific Center for Health Policy and Ethics. “We don’t say we’re going to go to the ends of the Earth to make sure these women get all the care they need.
“But when it’s something as socially sensitive as AIDS, we’re saying we’ll not let one baby go without treatment.”
The legal obligations to respect a woman’s right to privacy pale in the face of saving the life of her unborn child, say supporters of mandatory testing.
“Women (may) keep their privacy intact, but their children will have the privacy of the grave,” says Nat Hentoff, a New York columnist and abortion foe, who supports required testing.
But protecting the rights of pregnant women has been historically volatile. And feminists are enraged over the possibility of HIV-infected women having their rights subjugated in favor of their unborn babies.
“Out front, this all sounds very good for the good of the children, but you have to understand that women are not the little ovens that babies come in. Women are separate individuals with rights and choices,” says Ginny Foat, women’s advocate and director of Caring for Babies With AIDS in Los Angeles.
“The test is not going to save anybody’s life. If you want to stop the spread of AIDS, why not castrate men--remove their penises! It’s a better deterrent than mandatory testing,” Foat says.
Advocates for the poor worry that mandatory tests also will discriminate against minorities since African Americans and Latinas account for most HIV cases among pregnant women.
For many of them, it is already difficult to get access to basic prenatal care they can afford. Will forcing them to be tested for the AIDS virus change that?
“Don’t forget, an HIV test does not occur in a medical vacuum,” says Mark Senak of AIDS Project Los Angeles. “It is a test of your insurability, your access to health care, your relationship with your partner, your family, your church. If you are a pregnant woman or a poor woman, the state has no more reason to tell you to take that test than to tell anyone else.
“Whatever you think about mandatory HIV testing, we must always return to the reality of life for the HIV-infected mother,” he says.
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Susanna, who asked that her real name not be used, is an HIV-infected mother, and today she says she feels “lucky.”
She found out she was pregnant at a county-funded clinic--at the same time she found out that she was infected with the virus that causes autoimmune deficiency syndrome. “I don’t mean I’m happy about this. Nobody’d be happy. But I have a chance to save my baby, I think, since I know he might get AIDS if I don’t take the AZT.”
Although Susanna has no symptoms of the AIDS virus, she began taking AZT five times a day in her 13th week of pregnancy. The $3,000 or more it will cost to keep her on AZT through her delivery is being paid by a federally funded health program for uninsured women.
“It’s my first baby. My only one, I guess. . . . I don’t want to take any risks,” she says. “So when the clinic said I could get an AIDS test right along with all the other tests you take when you’re having a baby, I took it. Why wouldn’t I?”
Although some cities--such as Boston--have reported that as many as half of high-risk women decline to be tested for HIV, voluntary testing seems to be holding greater promise in Southern California.
About 70% of all women offered free tests for human immunodeficiency virus at county clinics accept, says John Schunhoff, Los Angeles County AIDS program director. He and other opponents of mandatory testing say that with such positive response to voluntary testing, coerced testing could do more harm than good.
“We don’t want to drive women away from health care. We want them to participate in it,” Schunhoff says. “If the offer of the test is properly presented, and if we can keep track of the women who test positive and get them referred for treatment, this is a much better solution. I think most women want to know the truth so that they know their options as soon as possible.”
About 7,000 HIV-infected women become pregnant each year, according to national health experts. Almost 2,000 of their children are infected before or during birth, or through breast-feeding. Some women choose to terminate their pregnancies or are too sick to carry to term.
Without AZT therapy, the risk of an infant contracting HIV from its mother is between 15% and 40%, according to the Centers for Disease Control and Prevention. The virus seems most likely to be transmitted after about the fourth month of pregnancy.
If HIV testing and treatment were to become mandatory, some opponents wonder how the rigorous treatment could be enforced.
“How could one enforce a daily regimen of five doses of (AZT) during the entire second and third trimesters of pregnancy?” asks ethicist Ronald Bayer, who wrote an editorial for the New England Journal of Medicine on the implications of the AZT research. “Would anything short of incarceration make such treatment possible?”
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How AZT works to stop the spread of HIV from mother to child is still a scientific mystery.
Because the recent findings about the drug’s success were so stunning, the study--overseen by the National Institutes of Health--was halted prematurely, leaving many questions unanswered.
In the research protocol, AZT was given to the mother between her second and third trimesters and again during labor and delivery. The anti-viral treatment also was given to the infant during the first six weeks after birth.
Further research is needed to determine which one--or combination--of these steps brings the benefit. Some critics believe that the NIH study should have been three separate studies.
But to attempt that now, says pediatric AIDS researcher Dr. William Shearer, “would be a step backward, ethically.” Tinkering with a proven regimen for a fatal disease is rarely acceptable ethically, or morally.
The absence of solid data on the long-term effects of AZT on pregnant women without AIDS symptoms and on children who receive AZT in utero has tarnished the otherwise good news about the prenatal use of AZT.
AZT, also known as zidovudine or Retrovir, is an antiviral agent that has been shown to slow the progression of HIV to AIDS in some adult patients, but it has not prevented that progression or saved the lives of patients who use it.
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At 26, Deandra has been living with HIV for five years. She had her first child, who is free of infection, before she knew she was HIV-positive. She took AZT during her second pregnancy and that baby also was born with no signs of the disease.
“If someone was to have told me while I was pregnant that they’d put me in jail if I didn’t take my medicines, I’d have said ‘Forget this!’ and come back when it was time to have the baby,” says the Los Angeles woman.
“Don’t they understand? Mothers will be mothers. If you want them to do right by their children, maybe all you got to do is ask.”
