Baby's health v. mother's privacy: an HIV dilemma.

When routine blood tests show that a newborn has HIV antibodies, should the mother be told? Newborns in some 44 states, of which New York is one, are tested automatically for certain medical conditions, including HIV. Thus far, the HIV test results have been used only for statistical purposes; no one, including parents, can get individual results. Debate has recently sprung up over whether these tests should remain blind. (Kevin Slack, Battle Lines Drawn Over Newborn HIV Disclosure, N.Y. Times, June 26, 1994, at A23.)

Before birth, babies make few antibodies; the mother's antibodies pass through the placental barrier and protect the child from disease before birth and for some time afterward. The HIV antibodies detected in a newborn actually come from the mother. Only about a quarter of the babies who test positive at birth turn out to be infected. The real (but indirect and involuntary) subjects of the test are the mothers.

By law, direct HIV tests of adults' blood must be voluntary, and the results are confidential. If the test is paid for by health insurance, the insurance company is supposed to be notified that it took place but not what the results were.

Disclosing an infant's mandatory test results would violate the mother's privacy and potentially expose her and the family to discrimination, civil rights groups argue. Patients whose HIV-positive status became known have lost housing, jobs, and health insurance and have become social pariahs.

Many people are afraid to learn they have the virus for practical reasons. Some employers and health insurers do not want to pay for HIV and AIDS treatment. Some insurance policies specifically exclude coverage for HIV or for all preexisting conditions, or exclude preexisting conditions for a period after the person first gets the insurance. This being so, some people think they are better off not knowing their own status. The threat of learning the test results might even drive mothers who fear they are infected away from prenatal care, civil liberties groups contend.

Recent changes in the law have fixed some of these problems, and health reform could fix more. But the law in these matters is corrective, not preventive.

"People infected with the virus are protected under the Americans with Disabilities Act and the Fair Housing Act," said attorney Robert Stein, who teaches a seminar on AIDS policy at Georgetown Law Center. "The law provides legal remedies for discrimination, but it doesn't prevent it. And some families are too close to the edge financially to take risks. If they lose their health insurance or get fired or get evicted, they are in desperate straits."

Not everyone believes that mothers don't want to know something this essential to caring for their newborns. New York State Assemblywoman Nettie Mayersohn argues that if HIV-positive mothers get the test results immediately, they can bottle-feed and avoid transmitting the virus via breast milk. Earlier this year, Mayersohn introduced a bill requiring that mothers be notified, but it never got out of committee. She plans to reintroduce it next session.

At the federal level, Gary Ackerman (D-N.Y.) introduced H.R. 4507, the Newborn HIV Notification Act, a similar bill. At TRIAL press time the act was under consideration by the Subcommittee on Health and the Environment of the House Energy and Commerce Committee.

Civil liberties groups argue that focusing on the postnatal tests is counterproductive. They want doctors to counsel pregnant women who might be infected to get themselves tested voluntarily right away.

This might help mothers avoid transmitting the virus to their infants during delivery. New research suggests that this is often when transmission of the virus takes place.

One study found that women with high blood virus levels are more likely to pass the virus on than those with low levels. Another study found that taking the drug AZT late in pregnancy reduces blood virus levels and the risk of transmitting the virus to the infants. (Lawrence Altman, High H.I.V. Levels Raise Risk to Newborns, 2 Studies Show, N.Y. Times, Aug. 17, 1994, at C8).