New U.S. laws target women of colour for HIV testing

Most states by law require voluntary, informed consent for HIV testing in the health care setting. Mandatory HIV testing is already required in some federal program, for example, for military personnel and immigrants.

HIV testing of pregnant women and newborns has been a controversial aspect of U.S. policy and law, on both federal and state levels. Imposing mandatory testing of pregnant women and newborns both significantly limits patient autonomy and creates a fundamental conflict between health care providers and their patients.

Impetus for mandatory testing in this area resulted from reports in 1994 indicating that treatment with zidovu-dine (ZDV) during pregnancy reduced the rate of HIV transmission from mother to child. In 1995, the U.S. Centers for Disease Control and Prevention (CDC) responded by recommending counseling and voluntary, not mandatory, testing. Treatment with ZDV was recommended only on a fully informed consent basis.

Although these CDC recommendations do not have the force of law, they are accepted as an appropriate standard of medical care. In addition to the concern that some pregnant women with HIV were not being HIV tested and treated with ZDV, some mandatory testing advocates were concerned that if no testing occurred during pregnancy or after birth, many infants with HIV would not receive HIV-related medical care. In most states, however, newborns were already being HIV tested on an anonymous basis, without any data linking the results to the infants or their mothers. This "blinded" testing is undertaken to track, for epidemiological purposes, the extent of HIV infection in childbearing women. Because such testing programs were in place, however, testing advocates called for them to be "unblinded," with disclosure of the test results to the mother and the newborn’s health care providers.

Last Served, First Tested

Efforts to impose nonconsensual HIV testing on pregnant women and newborns are frequently motivated by underlying assumptions based on race, class and the related stigma of unlawful drug use. In the U.S., the rate of HIV infection among women of color is highly disproportionate to that among white women. For example, in 1994, African-American women were 15 times more likely than white women to have AIDS. Mother-to-infant transmission of HIV accounts for the vast majority of pediatric AIDS cases. Thus, in New York City, nearly 90 percent of the pediatric AIDS cases were African-American or Hispanic. Likewise, the mothers of these children are either injecting drug users themselves or the sexual partners of injecting drug users. Advocates for mandatory testing thus implicitly view minority women with HIV as irresponsibly refusing, avoiding or otherwise failing to seek HIV testing for themselves or their children.

The children of these women are viewed as "innocent" victims of AIDS unlike gay men or injecting drug users and their sexual partners who, according to this argument, have brought HIV infection upon themselves by their morally blameworthy, if not illegal, behavior. Efforts to limit patient autonomy are often imposed as a substitute for enhancing and supportting the role of women in providing care for their children by addressing underlying, inter-related issues of poverty and the lack of access to adequate health care.

This issue was addressed by U.S. Congress for the first time in 1996 when a proposal requiring the disclosure of blinded testing results was rejected. Instead, as a compromise, Congress mandated pre-test counseling and voluntary, as opposed to mandatory, testing, consistent with recommendations of the CDC. Thus, states are, at the very least, required to adopt regulations or standards requiring CDC-recommended counseling and voluntary testing. States are not prohibited, however, from adopting more stringent measures.

Coercive funding, coercive testing

In order to comply with the law, states must demonstrate (by March 2000), assuming that HIV testing of newborns becomes a routine practice, a 50 percent reduction in rate of perinatal transmission (compared to 1993) or that at least 95 percent of women who have received at least two prenatal visits with a health care provider have been tested for HIV. Given that non-compliance with certain of the law’s requirements results in denial of federal HIV/AIDS funding, many states may require mandatory testing of newborns or impose coercive policies intended to increase the rate of testing and treatment during pregnancy. States can also avoid loss of federal HIV/AIDS funding by adopting programs of mandatory testing of all newborns whose mothers have not undergone pre-natal HIV testing. States that adopt mandatory newborn testing requirements must also require that health insurers not discontinue insurance solely as a result of the HIV status of the insured.

This issue has now been addressed by legislation in a few states. Since a law signed by New York City Governor George Pataki in June 1996, the city now requires mandatory disclosure of newborns’ test results. Florida requires by law that health care providers attending a pregnant woman must counsel the woman to be tested for HIV. If she objects to testing, they are to attempt to obtain that refusal in writing, which is then entered in her medical record. New Jersey similarly requires that pregnant women, or women up to four weeks after delivery, be informed about the benefits of HIV testing. The woman is to indicate receipt of counseling and her decision in writing.

The Florida and New Jersey laws, although they fall short of requiring mandatory testing, are potentially highly coercive and implicitly place the health care provider in an adversarial relationship to the patient. Additionally, although these laws apply to all pregnant women, their impact will necessarily be on low-income women of color who are most vulnerable to HIV. nm

David W. Webber is an attorney in Philadelphia, USA. He is the editor and author of AIDS and the Law (3d ed. 1997, John Wiley & Sons, Inc.).