Perspectives on Mandatory HIV Testing of Pregnant Women in New Jersey
By Rachel Walden — January 2, 2008
On Dec. 26, New Jersey Gov. Richard Cody signed into law a provision requiring that pregnant women be tested for HIV, and that newborns be tested if the mother’s status is not known.
The purpose of the legislation is to prevent transmission of HIV from mother to fetus. It allows women to opt out of testing, and requires healthcare providers to provide information about “the benefits of being tested, the medical treatment available to treat HIV infection, and the reduced rate of transmission to a fetus if an HIV-infected pregnant woman receives treatment.”
The law has generated mixed reactions. An RH Reality Check blogger noted issues such as the forced nature of the intervention on the woman for the sake of the fetus, and the possibility that women will feel that they are not able to refuse the test. While the N.J. law does not include any criminal penalties for refusing the test, the refusal will be noted in the woman’s medical record.
On privacy and choice, Women’s Bioethics Blog asks, “Does a woman cede certain personal rights when she decides to carry a pregnancy to term?”
Others have pointed out that a better strategy may be expanding access to prenatal care in general, rather than focusing specifically on mandatory HIV testing. Another blogger believes the test is not an invasion of privacy, but notes that a stigma of blame still exists with regards to HIV/AIDS that must be addressed.
Some have asked how New Jersey plans to care for those women who find that they are HIV positive. It appears that the N.J. Department of Health and Senior Services does provide drugs to those with HIV and AIDS who meet certain income caps and lack other means of covering the expensive prescriptions.
What do you think? Was it necessary or useful to move from an opt-in to an opt-out strategy for HIV testing? What does it mean when an intervention is forced for the sake of the fetus? Does the benefit to the woman of knowing her status and being able to seek care outweigh the lack of choice? These are complicated questions, and I’d love to hear your thoughts.
Rachel, thanks for highlighting this important issue (and I hadn’t realized that the NJ measure, which was just a bill when I was writing about this issue, had now become law!). It’s a very complex issue. What appears to be an obvious public health measure becomes more complicated from a civil rights standpoint. Even if testing is opt-out (rather than opt-in) and not strictly mandatory, can we really be sure that physicians will take the time to explain to patients what they are being tested for and counsel them on what an HIV diagnosis means for their lives?
The counseling is definitely something I worry about. I wonder how well HIV pre-test counseling (and follow-up) will be done when the test is simply included in a battery of other prenatal tests.
While there are no doubt, many issues surrounding this law, I think if NJ is prepared to provide treatment for the women who test positive, this is a good initiative. Lots of public health measures are mandatory (think vaccinations and immunizations in some cases). While there is a stigma associated with having HIV, wouldn’t you want to know your status so that you could potentially protect your unborn child? No law is perfect when it is first put into effect, but I think this is a good idea.
As a health care professional I think it is crazy not to test pregnant women for HIV. I think they have a right to know what their status is for their health and the health of the baby. I also don’t think NJ did this only for the fetal rights, it is a financial thing. A baby born with HIV is more expensive than a baby born HIV free. That child is automatically given medicaid if the parents don’t have insurance. That comes directly from the state budget.
Also as far as I know all women delivering in NYC must get tested for HIV along with other STI’s. I think it is a no brainer here, and we should consider this from a public health perspective.
Birdsword, thanks for your comment. I think it’s great for everybody to get tested (pregnant or not), and it’s useful for a pregnant woman to know her status, but there’s just something about “mandatory” that makes people uncomfortable. As Colleen said, availability of treatment for woman as well as child is an important factor. It’s touchy, and I appreciate people’s thoughts on this.
Thanks for putting together this great summary of the issue, Rachel. I agree with you that it opens up a lot of complicated questions.
Julia Kaye here at NWLC just posted on this today: http://nwlc.blogs.com/womenstake/2008/01/opting-out-of-t.html
I understand what you mean by the word mandatory. I guess what I am trying to say is that many tests are mandatory on pregnant women, you just don’t know about them. For example, in some states a patient can refuse a TB test-but she won’t be allowed to take home her baby until she gets a chest x-ray to leave the hospital. Same thing goes for hepatitis B and other tests.
While I agree with the opinion that testing for HIV is a responsible action for everyone and especially for pregnant women, I also acknowledge that there are very serious ramifications for women who test positive. Not only is it a matter of getting treatment, but HIV still carries a huge stigma — people lose their jobs, their homes, their friends. Sometimes even when the initial test is a false positive and follow-up tests are negative, the original result follows people around. She won’t be able to get life insurance, and god forbid she ever loses her current health insurance benefits. It’s not a “no-brainer”.
It’s not the care provider who has to deal with these consequences, it’s the woman. She should always have the choice of whether or not to test, and her choice should not be held against her.
I wrote a long post about this on the tinfoil hat. I was getting into too many long conversations on too many sites.
Wendy, “and her choice should not be held against her” – that’s precisely one of the things I worry about.
Hilary, thanks – you have some interesting points in your post, and it definitely would have been a very long comment here! 🙂
Birdsword, I don’t know if you meant “you don’t know” in the general sense, but I am aware of other routine tests on pregnant women – I happen to live in one of the states that already had opt-out/mandatory HIV testing. Still, I think it’s a conversation worth having, and appreciate the comments.
Thanks. I cut and pasted it in a hurry. I went back and did some much needed editing, cut some, and added a bit about the slippery slope.
It is definitely a conversation worth having. Let’s say a woman is coerced into having the test and finds out she is positive. What if she wants to refuse AZT? Refuse her cesarean? Then what? How far do we take it?
I agree that this is a complicated issue and I can see the argument on both sides. I agree with Colleen that if NJ is able to follow up and actually provide health care for HIV positive women, then it’s a good thing (though I’m skeptical as to that actually happening given our general state of healthcare these days). On the other hand, the “mandatory” nature of this test worries me in that it somewhat disempowers women and distrusts the knowledge they have about their own health. It reminds me of the requirement in many hospitals for newborns to have eye drops administered right after birth in case their mother has gonorrhea (which can potentially cause blindness if it spreads to the baby). This standard procedure, often done even if a woman knows she doesn’t have gonorrhea, is another example of a somewhat paternalistic policy supposedly “for the woman’s own good.”
I think I was misunderstood here. I posted my position on my blog site. Feel free to visit
Roberta, thanks for that – it’s always good to have more detail/discussion going.
What if testing were mandatory but anonymous. Many universities and other sites offer this option… Just a thought.
I think it is a good idea to have expecting mothers tested for HIV (too bad it cannot be anonymous results). If they find out they are HIV positive, they can almost eliminate (less than 1% chance) the chances of baby getting HIV by following the CDC guidelines (C-section birth, 6 weeks of AZT treatment for baby and mother) and making sure the mother doesn’t breast feed (HIV virus can be transmitted through breast milk).