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.
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Posted by: LuciaDaniels34 | June 27, 2011 at 05:22 PM
Nicole and Hilary-
Your two comments perfectly encapsulate my ambivalence on the issue. On the one hand, as you point out, Nicole, I absolutely agree that we should strongly encourage HIV testing for everyone, particularly individuals who have engaged in unprotected sex. With that said, I agree with Hilary that it can be a slippery slope, and take pause at any public health initiative that exclusively subjects one population—in this case, pregnant women—to potential violations of their right to bodily autonomy. As I note in my post, the “opt-out” policy is not as it seems; because the newborn will still be tested if the mother opts-out, the woman effectively loses the option of not being tested. While I feel very strongly that everyone should know their HIV status, I hesitate to require any one population (and solely that one population) to know.
Of course, many would argue that it is more important for pregnant women to know their status than others since they can take immediate steps to prevent transmitting the virus to their fetus—which is a very valid point. But – as Hilary questions – if a pregnant woman does find out that she is HIV+, could she then be required to take a course of medication to help prevent transmission? Whether or not it would be the “right” thing to do, such a requirement could have severe implications for women’s reproductive rights. And let’s not forget that fundamental reproductive rights have been called into question lately…such as in Gonzalez v. Carhart, in which the Supreme Court, for the first time, upheld an abortion prohibition lacking a safeguard for women’s health, undermining a core principle of Roe v. Wade. In other words, let’s not take any civil liberties for granted these days!
Thanks for weighing in!
Posted by: Julia @ NWLC | August 12, 2008 at 11:25 AM
I wrote about this here.
I am concerned about a nuance of the mandated HIV testing in pregnancy. Where does her right of refusal step in? What if she is HIV positive, but wants to refuse a cesarean section (deemed to prevent transmission), refuse AZT for herself or her infant (also to reduce transmission) or to choose to breastfeed (controversially may be linked to transmission, but the evidence is mixed on this.)
Once we start chipping away at the right of refusal, based on trying to prevent transmission to the baby, where do we stop?
Posted by: Hilary | August 10, 2008 at 05:25 PM
Having worked in the HIV/AIDS community for several years, I am aware of both the positive and negative implications of such an Opt Out policy. However, I have to think that some women are ignorant about their actual level of risk, either from general ignorance about HIV transmission or ignorance of what their sexual partner/s are up to, etc. With so many women HIV+, certainly most of these through heterosexual contact, doesn't it make sense to test or at least strongly encourage testing for women who are obviously engaging in unprotected heterosexual sex? I think that the prenatal testing is an almost universal entry point into health care, even women who don't go to the doctor for annual exams, etc. will eventually end up at a health care facility while pregnant or at the time of delivery.(Not meaning that every woman gets pregnant in her lifetime, but most do.)It's a broad net cast in hopes of alerting women to their status and getting them into care as soon as possible.
It is a complex issue without easy answers. No matter what tactic or policy we choose, there are going to be unintended consequences for individuals. But in this case we must focus on the general public health.
Posted by: Nicole J. | August 08, 2008 at 02:28 PM
SB –
I think your comments are right on. Vaccines required for school-entry and smoking bans are comparable examples of the Individual Rights vs. Community Health dilemma. I would suggest, though, that we are careful to recognize the social distinctions between HIV/AIDS and, say, the measles. HIV/AIDS is intimately tied to issues of homophobia, xenophobia, racism, sexism (I could keep going with these “isms”…) as well as the stigmatization of drug-users and yes, certain pregnant women. People who are HIV+ are sometimes construed as having "brought it upon themselves" with risky behaviors or “immoral” lifestyle choices (there is also some overlap with the stigmatization of former smokers now suffering from lung cancer).The guilty/innocent undercurrent in public discussions of HIV is none-the-more apparent than in the unstated assumption that testing mandates prevent against "selfish and irresponsible" HIV+ pregnant women passing on the virus to their "innocent and pure" newborns.
…Which leads me to wonder how and why the question of mother-to-child HIV transmission became so important in New Jersey – and how it relates to representations of HIV+ people. According to the Kaiser Family Foundation, NJ currently has 17,572 people living with AIDS, and 32.4% of them are women. NJ's percentage of women with AIDS (out of the total number of AIDS cases) is the third-highest in the U.S. Meanwhile, according to the AP’s December 26 article (cited in my blog), seven infants were born with HIV in 2005, out of the state’s 115,000 births per year. This number is by no means negligable. But it leads me to wonder why the prevention of mother-to-child transmission became the focus of this discussion, as opposed to the prevention of HIV transmission to all women (or really, to all New Jersians).
On the other hand, pregnant women themselves will certainly receive more HIV testing and counseling as a result of this intervention, and I do believe that the NJ legislature had this benefit in mind when drafting the law. You’re right, SB – it’s a very tricky issue, and each time I begin to strongly articulate my feeling that this law is flawed, I am paused by the thought of the practical gains that could result from it. Though at what expense...? Ultimately, I agree with you when you said that you’d “like to see social reforms such that medical professionals communicate more effectively and humanely with their patients, and communities are less discriminatory against HIV positive women. Then this kind of law would be less worrisome.”
Posted by: Julia @ NWLC | January 08, 2008 at 12:47 PM
Squeaker –
You’re absolutely right—you should never have had to jump through hoops to receive important and basic STI testing, including HIV, during a pelvic exam. I’m glad that your new N.P. took care of it (and that the tests came back clean!). At the same time, I feel that there is a middle ground between New Jersey’s proposal and the professional negligence you described. I would support either a strong opt-in policy (in which the patient is informed of the range of recommended STI tests, including HIV, and asked whether she would like to have any or all of them performed) or a legitimate opt-out policy (in which the provider informs the patient of the STI tests s/he will be performing and the reasons for doing so and asks the patient if she would prefer to not have one or any of them performed – and then adheres to her wishes). I am troubled by New Jersey’s policy because the “opt-out” option feels like a façade.
By singling out one population (although NJ’s justifications for focusing on pregnant women are apparent) and removing their ability to choose whether or not to learn their HIV status, the new law undermines the rights of individual women and has the potential to set a dangerous precedent (or rather, to continue down a slippery slope) with regards to the rights of pregnant women to privacy and autonomy.
Posted by: Julia @ NWLC | January 08, 2008 at 11:59 AM
On the one hand, as you note, it is crucial to inform pregnant women about HIV/AIDS and the risks to their babies, as well as the option of testing. However, knowing how medical professionals tend to abuse patient rights (around informed consent and refusal of treatment, etc.), I am also concerned that the whole process will become coercive. On balance, I find your argument against this law to be the more convincing one.
At the same time, I'd like to see social reforms such that medical professionals communicate more effectively and humanely with their patients, and communities are less discriminatory against HIV positive women. Then this kind of law would be less worrisome.
Your blog seems to tap into a recurrent dilemma in public health.... how to balance population-level health and individual health, and how to work for the public good while still protecting individual rights and preferences regarding health matters. It also comes up in the requirement that parents vaccinate their children (unless they have religious objections) in order to enroll in school.... and in legislation that bans indoor smoking, which limits the individual's right to smoke but protects the rest of us from carcinogenic second-hand smoke. Tricky issues!
Posted by: SB | January 05, 2008 at 07:18 PM
Living on the other coast, I am still surprised that HIV testing, and other STD testing, is not a standard part of the annual gyno exam. A few years ago when I moved to a new health care provider and decided I wanted to have STD and HIV tests, I had to specifically request them. I later found out that my N.P., who had repeatedly assured me that she would run the tests, completely forgot! (Not that I could easily tell from the practically illegible results that were mailed back to me.) The next year I had a new N.P. who finally followed through with my wishes and performed the tests. Luckily everything came back clean, but the tests should have been standard from the start (or at least not such a difficult request). It would have made my life much simpler.
Posted by: Squeaker | January 04, 2008 at 05:36 PM