The Body Politic: Mandatory HIV Testing of Newborns

New York State currently mandates that all newborns be tested for HIV. Protecting infants is one thing. But what does that mean for a mother's privacy?

By Nina Schuyler

Picture a newborn threatened by a deadly illness. Now imagine a drug that can significantly reduce the chances of the infant contracting the disease. Seems simple, right? But, what if the only way to find out whether the infant is at risk is to reveal the health status of the mother and — here's the catch — the mother refuses?

This complex clash of interests describes the current situation surrounding mandatory testing of infants for HIV. New York was the first state to test all newborns for HIV, but other states and the federal government may not be far behind.

Proponents of mandatory testing say that transmission of HIV from mother to newborn is significantly reduced by administering drugs such as AZT. Failing to take advantage of these drugs is not only foolhardy, but downright heartless.

According to the New York Department of Health, nearly 75 percent of women will take an HIV test during pregnancy, when one is offered. If a pregnant woman tests positive she is placed on AZT. After birth, the infant is tested and if the mother's HIV antibodies are found in the baby's blood the infant also goes home with a six-week prescription for AZT. In this scenario, the rate of transmission is reduced by two-thirds.

The New York Department of Health estimated that prior to passage of the state's law in 1996, as many as 60 percent of infants who retroactively tested positive for HIV had been discharged from the hospital unidentified and untreated. Ninety percent of these infants died by the age of five. But, if AZT is given to the newborn within 48 hours of birth, the rate of transmission is reduced by half.

At first blush it might seem strange that anyone would oppose a law intended to protect infants' health. The problem is that the infant's blood test reveals more than the health status of the baby.

"The test shows the presence of the mother's HIV antibodies in the newborn's blood," says William Borkowski, M.D., a professor of pediatrics at New York University Medical Center. "It shows the infant has been exposed to the virus, but has yet to be fully infected." In actuality, then, a mandatory HIV test of a newborn is an HIV test of the mother. And that has spurred strong opposition.

In a lawsuit filed against the governor of New York, the HIV Law Project argues that the law violates a pregnant woman's constitutional right to privacy and the Fourth Amendment not to be subjected to unreasonable searches and seizures.

"The best public health comes from a collaboration between a mother and a health care provider," says Victoria Nielson deputy litigation director at the HIV Law Project in New York. "It does not come from coercive testing."

Other groups have joined the HIV Law Project, but for different reasons. "Some women may not want to know their HIV status because they lack a support network or face the likelihood of domestic violence," says Galen Sherwin, president of the New York chapter of the National Organization for Women, which opposes the law. "And anyone who gains access, either purposefully or inadvertently, to the mother's or infant's medical record would know the mother's HIV status." A positive status often leads to discrimination — loss of job, housing and health insurance.

Opponents of the law say the state's funds are better spent providing prenatal care to all women and offering voluntary HIV testing.

Law scholars say that it's difficult to predict the outcome of the lawsuit because it is treading on new legal ground.

"Testing someone's blood to detect the presence of a virus or drugs is a search within the meaning of the Fourth Amendment of the U.S. Constitution and requires individualized suspicion," says Erwin Chemerinsky a constitutional law professor at University of Southern California Law School.

Without such suspicion, as in the case of a pregnant woman entering the health care system for care, a state must show it has a compelling interest, one of the highest legal burdens of proof. "It's difficult to say whether a state could meet this burden," says Chemerinsky.

In the meantime, at least one other state has passed a law similar to New York's. In 1999, Connecticut implemented a law requiring that all infants be tested for HIV within 24 hours of birth. AIDS activists and the Connecticut Hospital Association immediately filed a lawsuit and presented the same arguments as opponents to New York's law. The lawsuit is still pending.

On the federal level, Representative Tom Coburn (R-OK) is looking for a way to tie mandatory testing of newborns for HIV to the Ryan White CARE Act, which was enacted in 1990 and allocates $1.4 billion to states and cities for the care of HIV and AIDS infants. The Act is up for reauthorization in September. Five years ago, Coburn tried to make mandatory testing of newborns a federal law. Although the bill had over 218 co-sponsors from both parties in the House, it failed to win Senate approval.

But, times have changed. "We have more studies that show the effectiveness of treating newborns with AZT," says Rowland Foster, Coburn's legislative director. Coburn is also finding new friends.

The American Medical Association, was initially against mandatory testing of infants because there was little doctors could do to treat pregnant women with HIV. With the discovery of AZT and its dramatic effect on reducing the rate of transmission, the AMA reversed its position. With over 296,000 members, about half the nation's doctors, that reversal may influence lawmakers and public opinion.

"We are prepared to make another push this year to make sure no newborn falls through the cracks," says Foster. "If that means intruding on a woman's privacy rights, we think it's worth it."

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