Pre-Natal HIV Testing: What About Women’s Rights?

Pregnant women with HIV routinely find their human and civil rights sacrificed in the name of the health of the fetuses they carry. The case of Ms. Tuleh, the Cameroonian immigrant who was recently held in federal detention for the crime of being HIV positive and pregnant, has been a vivid reminder of this reality. Prenatal HIV testing is often the point of departure for the perceived tension between the rights of the mother and the health of the unborn child.

Two dominant schemas, opt-in and opt-out testing, capture the different approaches to prenatal HIV testing. Under an opt-in approach, health care personnel provide HIV counseling, offer all pregnant women an HIV test, and ask for her consent either orally or in writing. Consent must be explicit. In an opt-out jurisdiction, medical providers perform an HIV test after notifying the patient that the test will be performed unless she explicitly declines testing.

In 2006 the CDC recommended opt-out testing of all pregnant women. As an incentive, millions of federal dollars became available under the Ryan White HIV/AIDS Treatment Modernization Act of 2006 for states implementing both opt-out testing of pregnant women and newborn testing. Consequently, many states are moving in this direction. The most recent legislative season saw seven states consider opt-out prenatal testing bills, at least two of which (Colorado and Montana) have been passed and signed as of this writing.

Yet this paradigm shift sacrifices women’s rights, as well as the scaffolding of strong provider-patient relationships. With perinatal HIV transmission at an all-time low, states have an opportunity to commit to positive health outcomes for mothers and children while respecting basic principles of consent for HIV testing. This can be done by returning to opt-in testing through universally counseling pregnant women about HIV, and encouraging all women to be tested.

It should not be surprising that the vast majority of pregnant women who are offered an HIV test accept testing. One study found that when offered an HIV test, more than 86 percent of women agreed to be tested. Of those who declined testing, the reasons most frequently given for doing so were: no perceived risk, administrative and scheduling difficulties, prior testing, and lack of endorsement of testing by provider. These results indicate that with the systematic removal of institutional barriers to testing, implementation of systems to streamline and facilitate testing, and universal offer and endorsement of testing by health care providers, regardless of perceived risk, we could achieve nearly perfect testing rates during pregnancy with an opt-in approach.

Meanwhile, compelling HIV testing runs the risk of alienating patients from their medical care provider, and in turn driving them from care. And while it is true that the vast majority of women will accept HIV testing, especially if the conditions outlined above are met, it is also true that a small minority of women will likely decline testing for fear of the results. Their fears may be grounded in eminently practical considerations. A woman experiencing intimate partner violence, for instance, might well fear that an HIV diagnosis would trigger an escalation of violence. Another woman may reasonably fear that her job will be in peril if she learns that she has HIV. Others may fear that estrangement from family and community would flow from an HIV diagnosis, and might choose ignorance over isolation.

Though an opt-out schema, in theory, promotes voluntary testing, in actuality the possibilities for confusion, missed communication, or coercion are great. Patients of limited English proficiency might easily not understand when their provider hastily informs them that they will be given an HIV test. Rushed providers are likely to de-emphasize the HIV test, perhaps mentioning it amidst a steady stream of information which the patient may not fully absorb. In the worst case scenario, a patient who shows reluctance to test will be coerced by the provider, leaving the patient feeling helpless, resentful, and mistrusting.

For the small minority of women who are reluctant to test, coercion and/or poor communication are neither appropriate nor effective bases upon which to build a provider-patient relationship, or to begin the process of long-term care and treatment. It is precisely in those cases where women fear testing or the test result that mandatory or coerced HIV testing drives a wedge between patient and health care provider.

By contrast, opt-in schemas, which strive for universal testing but allows for patient autonomy and freedom, puts the duty on the health care provider to recognize the distinct needs of individual patients. If the provider affirmatively offers the test and obtains the patient’s consent to testing, an opportunity is presented for the provider to recommend HIV testing as part of routine prenatal care generally, and to respond to specific fears or concerns on the part of the individual patient. This way the provider encourages patient trust, an element essential to the future care and treatment of the woman and her baby – and to the successful prevention of mother-to-child transmission.

While this prescription may seem to place unreasonable demands on health care providers, it is the only way to ensure that women who test positive do not abandon the health care system. If in our haste to boost testing rates we sacrifice the pregnant woman’s or the new mother’s trust in her provider, and ignore the importance of her buy-in and participation in her own care, we risk alienating her from the health care system. If this happens, then we are no closer to our goal of reducing mother-to-child transmission.

HIV Law Project’s recent report on this topic can be found here.

Like this story? Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

For more information or to schedule an interview with contact

  • invalid-0

    I just wanted to put forth my own viewpoint on this issue. I agree that women should be offered HIV testing in pregnancy of either sort, however, this testing must occur ONLY AFTER INFORMED CONSENT, in which the woman is aware not only of the legal implications, but of the physical and psychological implications as well.

    At the forefront the woman must be informed as to exactly how and why her care will differ if a test is confirmed positive by a secondary method, as there is the possibility of a false negative. She will need to be told about possible psychological issues having to do with waiting for results, as well as how she might feel if the test is in fact correctly positive. She must also know that some providers will recommend abortion, but that care practices typically differ by the amount of antibodies present in her blood. She may or may not be counseled to take HIV therapies. A vaginal or cesarean birth will be recommended, although both carry a risk of HIV transmission. She will have to deal with staff prejudice. She will also have to wait to know the HIV status of her baby.

    I declined an HIV test during pregnancy solely on the issue that my doctor said that it was “routine” and when I asked how my treatment would differ if the test was positive, she said “I don’t know”. Luckily for me I had a negative HIV test not long before falling pregnant with my monogamous husband.

    A whole other kettle of fish happens to be that pregnant women are barred by legal guidelines from requesting HIV testing before allowing attendants to participate in their birth. Families are unknowingly playing roulette every day with doctors and nurses who are positive for HepB&C and HIV, and have no choice to decline care for themselves or their family members.

    Let’s level this playing field and require open results of practitioner testing to medical clients, in the spirit of “I’ll show you mine if you show me yours.”

  • invalid-0

    False positive, false positive.

  • invalid-0

    I have just checked this website. This is a very good website and it provides a lot of important information. The method pre-natal HIV testing that US has adopted is really very good. You may consider it against the women’s rights but it can serve a great deal in reducing the HIV transmission form mother to child. We all know what kind of a disease HIV/AIDS is, it is not any normal disease. This disease gives its patient a slow death as well as makes the patient an outcast given the status that HIV ‘enjoys’. So if a woman who is HIV infected and still wants to conceive a baby I think she must be stopped from doing this as she’s her child life worse that death.

  • invalid-0

    Not mentioned in this article is the fact that pregnancy induces a false-positive HIV test. Yeah, lets freak out an entire population of people with a forced test with medically skewed results. Why don’t medical providers discuss the possibilities of false-positives…..they are so pertinent to pregnant women. Oh, that’s right…we don’t use informed consent!

  • invalid-0

    I think the issue at the root of these discussions is patient-health care provider communication. Whether you have an opt-in or opt-out system, there is always the possibility of coercion. We need to be teaching our medical students and doctors empathy and communication skills.

    I don’t agree with Living with HIV at all – a woman’s choice is a woman’s choice. She shouldn’t be excluded from having children just because she has HIV. However, I do think (like many other vertically transmittable diseases from mother to fetus) these tests need to be mandatory. We can’t begin to chip away at stigma if we insist on treating HIV/AIDS differently. The fact is that it is a problematic disease, but it can be controlled and treated. By knowing if a mother is HIV positive, we can work to protect her, her child, and her community.

    I by no means think this means her results should be available to anyone but her and her health care provider. We need to protect her and offer her options in terms of treatment. There needs to be dialogue, education, and communication about what this means for her and her family. Also, we need to protect the health care workers. I find the first post in this conversation problematic – anyone’s status is their own information, not others’.

  • invalid-0

    Dear Anonymous,
    Confirmatory test should be performed in the case of false positive HIV tests in pregnancy:

    There are a number of factors, including recent flu vaccination and multiple pregnancies, that may make people more likely to receive a false positive result in the initial screening test for HIV, though such results are still unusual. The risk of a false positive during confirmatory testing is extremely tiny – around 1 in 250,000 for the Western blot, for example.

  • crowepps

    This website will be even more valuable to you if you read the articles carefully.  This article is about testing women who are ALREADY pregnant to see what their HIV status is.


    My understanding is that there is treatment available which makes a huge difference in the rate of mother to child transmission, treatment which will be used only if the results of a test are available.  The reality of what that treatment entails ought to be included in the protocol of the testing so that a woman asking "and what difference will this make" can be given an honest answer.


    This article is NOT about women who already know their HIV status is positive and who nevertheless decide to get pregnant.  At this time, I’m not aware of any persons "stopped" from reproducing.  If people’s reproductive autonomy is going to be stripped from them, I can think of several groups that should be in line first – persons already convicted of sexually or physically abusing children, for instance, those who have a family history of inherited diseases which are fatal to children, those with severe psychological problems and men who have a history of failing to support their already existing children.

  • invalid-0

    @11:02 What do you mean by false positives?

  • crowepps


    His percentages are really interesting — twice as many women will get a false result and bad scare as will get actual bad news.  Not sure how credible he is.

  • invalid-0

    I find the first post in this conversation problematic – anyone’s status is their own information, not others’.

    I’m going out on a limb here and I assume that this statement is in reference to healthcare clients being barred from knowing the Hep. and HIV status of practitioners.

    Practitioners are aware of their clients HIV and Hep. status through their medical records, and from working in the healthcare system, this information does indeed pass by word of mouth to not only other practitioners who are not caring for the person, but to secretaries and janitors.

    Patients, however, are put in the situation of being attended by disease positive practitioners without their consent or knowledge. There is a direct possibility of transmission due to the very nature of the practitioner/patient physical relationship, in which there is physical contact, including contact with blood and bodily fluids, and open wounds.

    Because of this direct physical contact, as a requirement of the job, it puts a disease negative person directly in harm’s way should their attendant be disease positive.

    A lawyer, school teacher, truck driver, or any person not directly coming into physical contact with their client has the right to the privacy of their test results, as there is little to no risk of transmission, and vice versa.

    Healthcare workers are the exception, as they are a direct health risk to consumers.

    Currently there is an article running on detailing the case of a Denver, Co. surgical tech who is positive for hep. C, who is accused of stealing syringes filled with painkillers, and then replacing them with used syringes of saline. She has been linked to 19 cases of hep. C in patients, and they believe that up to 6,000 patients at two different hospitals have been exposed.

    These patients were denied the right to decline contact with a healthcare worker who was disease positive.

    Private practitioners are able to choose to decline service to disease positive patients.

    Patients should be able to choose to decline services of disease positive practitioners.

  • invalid-0

    Excellent comment.

  • invalid-0

    Excellent comment.

  • invalid-0

    I think it is not good to exclude having a baby if you have HIV. This issue needs more research and studies because we are talking about the health and rights of women.