by Julia Kaye, Program Assistant
National Women’s Law Center
I am always proud to report that New Jersey is leading the way on a progressive health or human rights issue–and in the past year and a half the state certainly has been. Protecting women’s access to prescription birth control, repealing the death penalty, legalizing civil unions and partnering with local health insurance companies to ensure that low-income families can afford health insurance for their children are some of the reasons I’m proud to be a Jersey girl. That and Bon Jovi.
It would seem, then, that I should be thrilled by the latest news out of Trenton that New Jersey is “at the forefront of the national fight against HIV transmission to babies”— but I’m not sure I am. Last week, Acting Gov. Richard J. Codey signed a measure into law requiring that HIV testing be included in the package of routine prenatal care for pregnant women, and that certain “at-risk” newborns be tested as well. The law is being portrayed as a move from “opt-in” testing to “opt-out,” but let’s be clear: This law is a testing mandate on pregnant women, and it has some troubling implications that may counter-balance the good that could result from it.
According to the law, health care providers are required to perform HIV tests on pregnant women unless they specifically object, and to provide them with information about HIV/AIDS. The law assures us that “testing of all pregnant women for HIV shall be voluntary and free of coercion,” but what the media has referred to as the law’s “opt-out” policy is not as it seems. “If a woman refuses,” the New York Times reports, “it will be noted, and an HIV test will be performed on the newborn unless the mother has religious objections.” An HIV test on a newborn detects whether the infant has HIV antibodies in its bloodstream, transferred from mother to fetus during the pregnancy. This required test of newborns does not, in fact, prove that the child is HIV positive (the antibodies can be passed down without the virus, giving the infant a “false positive” result), only that the mother is. So much for opting-out.
New medical advances have made it possible to drastically reduce the risk of mother-to-child HIV transmission—if the mother is aware of her status and engages in preventive measures during her pregnancy and labor, and then abstains from breast-feeding. It’s easy to see why this law is appealing, but the risks of mandated testing are high. Here are some of the concerns:
- Intrusion on Privacy: Instead of the empowering, pro-active step in the prevention and/or treatment process that testing usually is, required testing is a governmental and medical intrusion on privacy. “If the state has the power to force a test,” the ACLU asks, “does it have the power as well to force unwanted treatment? What about taking away a parent’s right to decide the treatment for her child?” (Check out Jill Morrison's blog on the prosecution of pregnant women who use drugs for more.)
- Sexist Assumptions: It suggests that women are not capable or responsible enough to judge whether they are at risk for HIV and determine whether they should be tested.
- Undermines the Testing-Prevention Connection: Implying that mothers are not capable of making this decision for themselves can cause diminished self-confidence, a low sense of self-worth, and little motivation for change, all factors that make people less likely to adhere to a treatment regimen (HIV+) or to protect themselves with preventive behaviors (HIV-).
- Racial Implications: Though the New Jersey legislature may not realize it, a testing mandate reinforces dangerous stereotypes of mothers of color. The majority of women with HIV/AIDS are Black or Latina, and many of the public discussions of testing mandates in the 90’s relied heavily upon—and exacerbated—false stereotypes of HIV+ mothers (of color) as reckless, irresponsible and unfit to make important decisions for their own health and the health of their families.
- Places Individual Women at Risk: Though it would be ideal if everyone knew their HIV status, there are some women who may be at risk of abuse if their partners find out that they are HIV+.
It isn’t surprising that New Jersey lawmakers believe this new law is in line with the state’s impressive legal feats of the past year; their intentions are certainly as good. It’s true—more people should receive HIV testing and counseling, especially pregnant women who could, armed with the knowledge that they are HIV+, prevent the spread of the virus to their fetus.
On balance, however, the negative impact of a testing mandate is too great to overcome the positive intentions. Rather, New Jersey could accomplish its goal without the downsides if it made testing widely available, affordable (free!), and more “routine” for all state residents, not just pregnant women. At the same time, it should continue to require that health care providers counsel their patients on HIV/AIDS, the risks of mother-to-child-transmission, and ways to prevent it – beginning with the HIV test. Mandated testing unfortunately undermines New Jersey’s otherwise steadfast commitment to protecting human rights, of which we have recently seen so many examples.