Voluntary Testing for Pregnant Women
 
Cheryl Mascitelli

 During the past decade, the human immunodeficiency virus (HIV) has become a leading cause of mortality among women. This population is now accounting for the most rapid increase in cases of acquired immunodeficiency syndrome (AIDS) in recent years. As the numbers of cases of HIV infection have increased among women, particularly of childbearing age, increasing numbers of children have become infected as well. "Various studies conducted to date indicate that between 1/4 and 1/3 of infants born worldwide to women infected with HIV have become infected with the virus themselves" (HIV InSite, 1997). This is due to the route of transmission known as vertical transmission, from mother to infant. Thus, HIV infection has now also become a leading cause of mortality among young children, and virtually all of these infections can be attributed to vertical transmission.

More than 4 million American women get pregnant each year, an estimated 8,000 of them HIV infected. (USA Today, 1999) HIV can be transmitted from an infected woman to her unborn fetus or newborn during pregnancy, during labor and delivery, and even during the postpartum period via breastfeeding. "Reports show vertical transmission rates ranging from 13% to 40%" (HIV InSite, 1995b). This translates into approximately 1,000-2,000 HIV-infected infants being born each year in the United States. Although transmission of HIV to a fetus can occur as early as the second month of development, research suggests that at least one half of vertically transmitted infections from non-breastfeeding women occur shortly after or during the birth process (HIV InSite, 1995a).

Due to the seriousness of vertical transmission, there have been proposals made with the aim of screening pregnant women for HIV (Hardy, v), specifically, proposals of mandatory testing for pregnant women. These proposals suggest that every woman seeking prenatal care—whether it be in a gynecologist's office, a health clinic, the hospital, etc.—should be tested for HIV. This testing should be done whether the woman agrees or not, and if she refuses, prenatal care would be withheld. The rationale behind such a proposal is that if HIV testing is mandated, all pregnant women will have to be tested in order to receive prenatal care. Those who are HIV positive would be treated with drugs that will decrease the likelihood of vertical transmission. Thus, through mandatory testing, the instances of vertical transmission would decrease.

Since mandatory testing of pregnant women infringes on the woman's liberty and her right of privacy, the issue, is whether or not such a program is ethically justifiable, despite these infringements. In order to examine mandatory testing of pregnant women as a potentially effective way to reduce vertical transmission, I plan to analyze this proposal using the five criteria Childress proposes in his article, "Mandatory HIV Screening and Testing," criteria that, he explains, must be met in order to justify infringement of a person's rights when conducting mandatory testing. These five criteria are effectiveness, proportionality, necessity, least infringement, and explanation and justification to the patient. (Childress, 53) The first three must be met in order to justify infringement at all. The last two that must be met once a mandatory testing program has passed the first three, and has been implemented. I am going to examine these conditions regarding rights infringement, and determine whether all five are met by the proposal for mandatory testing of pregnant women.

The first condition for justification of mandatory testing is effectiveness. This condition requires that a policy that infringes on the human rights of an individual must be effective in realizing an important goal, specifically the goal of protecting public health (Childress, 54). Mandatory testing is without a doubt a way to test pregnant women for HIV. The important goal that mandatory testing would be striving for is the reduction in risk of transmission from the infected mother to her fetus.

Once a woman has been diagnosed as HIV positive, there are effective treatments that significantly reduce the risk of transmission from the mother to her baby. Research has shown that zidovudine, or AZT reduces, vertical transmission by as much as two-thirds in some infected women and their babies (HIV InSite, 1995a). "Results from a multi-center, placebo-controlled clinical trial indicated that AZT administering to a selected group of HIV infected women during pregnancy reduced the risk of HIV transmission by approximately two-thirds: 25.5% of infants born to mothers in the placebo group were infected, compared with 8.3% of those born to mothers in the AZT group." (HIV InSite, 1995a).

This AZT treatment is a three-part regimen given antepartum (while the woman is carrying the fetus), intrapartum (during labor), and postpartum (for the first 6 weeks of life) (HIV InSite, 1998). Treatment recommendations for pregnant women infected with HIV are based on the belief that therapies should not be withheld during pregnancy if they benefit both the woman and the baby. When a pregnant woman is diagnosed as being HIV positive, she is encouraged to begin treatments. There are two reasons for which treatment is encouraged. One that I have already discussed is the reduction in risk of transmission to the unborn fetus. The second has not yet been mentioned, although it is the more obvious. Beginning treatments as early as possible not only benefits the unborn fetus, but also significantly slows the progression of the virus in the mother. Overall, early diagnosis enables women to seek and receive the care they need for themselves and reduced the chances of transmitting HIV to their infants.

Currently, there are no known long-term effects of AZT on the baby, and it has been proven to benefit the woman considerably, as indicated above. With this information, pregnant women should base their decisions about treatment as if they were not pregnant, with the additional consideration of the potential (but unknown) impact on the fetus (HIV InSite, 1998). Although AZT therapy is not 100% effective, and the long-term risks to both the mother and her child are not known, the dramatic reduction in HIV transmission proves that every HIV infected pregnant woman should be offered AZT therapy to reduce the risk of transmitting the virus to her unborn child (HIV InSite, 1998). AZT treatments reduce the risk of transmission by nearly 70%, an incredible reduction. Thus, mandatory testing meets the criteria of effectiveness.

The second condition that Childress proposes is proportionality. This condition requires that it be demonstrated that the proposed policy will produce positive benefits for the individual and society as a whole, that these benefits will outweigh the negative effects of rights infringement or any other consequences (Childress, 54).

The main goal of any testing is to reduce the spread of HIV to unborn fetuses and infants. In and of itself, mandatory testing of pregnant women will not help to reduce the spread of the HIV virus; therefore something else must be done. The main goal of mandatory testing is to reduce the rate of HIV vertical transmission by determining a pregnant woman's HIV status as early in the pregnancy as possible. Although such testing will determine a pregnant woman's HIV status, it will do nothing to insure that she will consent to treatment, and therefore will do nothing to insure the reduction in risk. The only way to insure that the woman will adhere to treatment is if it is mandated, which would be difficult or impossible to enforce.

Beyond the infringement on the woman's right of privacy, mandatory testing can also significantly reduce the number of women seeking prenatal care. The state of Illinois implemented mandatory premarital testing in 1988. Only 1 in 6,500 people were found to be HIV positive, but the number of couples seeking marriage licenses in the state decreased by 25% (Graubard, 412). This concept can be applied to the mandatory testing of pregnant women. If women know that they are going to be required to take an HIV test and quite possibly be forced to undergo AZT therapy if they are HIV positive, and they are opposed to this, then they will avoid prenatal care completely, which will ultimately cause more health risks for the unborn fetuses.

In addition to the reduction of prenatal care, mandatory testing would also infringe on the physician-patient relationship. If a patient cannot trust and confide in her physician, then this essential relationship will break down.

Finally, common knowledge of a woman's HIV status can lead to many adverse reactions. "Reported rates of abandonment, loss of relationships, severe psychological reactions, and domestic violence have ranged from 4% to 13%. Providing infected women with or referring them to psychological, social, or legal services may help to even minimize such potential risks and enable women to benefit from the many health advantages of early HIV diagnosis" (HIV InSite, 1995a).

However, testing for the HIV virus is essential in order to reduce the risks of vertical transmission. Knowledge of a pregnant women's HIV status as early in the pregnancy is crucial to the outcome. In order for HIV infected women and their babies to benefit optimally from AZT and other medical treatments, it is important for women to know if they are HIV positive before or early in pregnancy (HIV InSite, 1995a),

The reduction of vertical transmission is more significant than an infringement of human rights or any other negative consequence that the pregnant woman might experience. I do not mean to imply that the infringement on the women's rights is insignificant, or that it produces insignificant consequences, but compared to the astounding benefits of treatment, mandatory testing can be justified according to this criterion of proportionality.

Necessity is the third condition that must be met in order to justify encouraged mandatory testing. This condition implies that there is no other way to realize the desired goal that does not infringe upon the patient's rights (Childress, 54). The HIV virus is one that results in death, and one for which there is no known cure. However, each HIV infection passes through certain stages, and although some patients progress through the stages differently, the result is ultimately death. Until a cure is found for this horrible virus, the only option that the medical profession can offer is to slow its natural progression through drugs. Obviously, this rigorous drug treatment is not given unless the patient has been diagnosed as being HIV positive. And the only way to determine HIV status is through testing.

Mandatory testing does indeed achieve the desired goal, which is to test pregnant women for HIV. However, it does not satisfy the second condition of this criterion because there exist another way to reach this goal that infringes less upon the patient's rights: voluntary testing.

Voluntary HIV testing is much different from mandatory testing. The only similarity is that each tests pregnant women for HIV. Mandatory testing requires that every woman seeking prenatal care be tested first. Voluntary testing offers a much different approach. It implies that when a woman seeks prenatal care, her physician encourages her to get tested. This process is actually a combined strategy of HIV counseling for all pregnant women and voluntary HIV testing. Voluntary testing means that after a woman receives appropriate counseling from her physician, she is able to make an informed decision about having a test for HIV (HIV InSite, 1995a). Rather than forcing women to be tested, this procedure simply ensures informed choice. Studies show that when a physician talks with a pregnant woman about what the HIV test means for her and her baby, most women choose to be tested. "For example, in one inner-city hospital in Atlanta, Georgia, 96% of women chose to be tested after being provided HIV counseling and offered voluntary HIV testing as part of prenatal care" (HIV InSite, 1995a). Offering all pregnant women voluntary testing in the context of HIV counseling establishes the kind of trusting relationship between the woman and her physician that is essential for discussions about prenatal care and treatment options if she is indeed HIV positive. Therefore, it is believed that voluntary testing is more successful at achieving the goal of getting more pregnant women to get tested for HIV than mandatory testing. Thus, mandatory testing fails to meet the necessity criterion and cannot be justified ethically as a way to achieve the desired outcome.

The final two criteria are simply guidelines to be followed once a proposal has met the first three criteria. I have argued that mandatory testing is not ethically justifiable and that voluntary testing is therefore the best option. These last criteria are important to insure the effectiveness of voluntary testing programs.

The fourth condition that must be met as follows. If it is absolutely necessary to infringe on the rights of individuals to achieve an important goal, then the plan which infringes the least must be chosen (Childress, 55). I think that this condition is at the very core of the encouraged voluntary testing proposal. Women are strongly encouraged to get tested, but are always given the chance to refuse and yet still receive prenatal care. Due to the fact that testing is voluntary, the women are giving up as few rights as possible. Mandatory testing is a definite infringement on a pregnant woman's life. Voluntary testing is a way to reach the similar goal, and, in this case—to surpass it. As I stated earlier, more women have consented to testing when HIV counseling has proceeded their physician's encouragement. In order to infringe as little as possible on a woman's liberty and her right of privacy, confidentiality must be insured. Voluntary testing does not infringe on the rights of any pregnant women, as long as confidentiality is insured. This is a way of minimizing negative outcomes that might result from the knowledge of a woman's HIV status. A woman has the right to say no, and if she does consent to the test, the results will be kept confidential within the context of the physician-patient relationship.

Once patients have consented to voluntary testing, they can be diagnosed properly and treated accordingly. If the woman who has been diagnosed is pregnant, there is no other known way to reduce the risk of transmission unless her HIV status is determined and proper AZT treatments are followed. Thus, the importance of HIV testing of pregnant women is immeasurable.

Mandatory testing reduces the percentage of women who would ordinarily seek prenatal care, and also infringes on the physician-patient relationship. Voluntary testing has been shown not only to encourage women to consent to being tested, but to surpass the percentage of women who undergo mandatory testing. Therefore, the most effective way to accomplish these goals is through voluntary testing.

The last condition that Childress proposes consists of explanation and justification. This condition is also one that is to be met once a program has been implemented. It says that basic respect for patients requires that when their rights are infringed upon, they must be informed of that infringement and the reasons for it completely explained (Childress, 55). Voluntary testing meets this fifth and final condition better than mandatory testing. The main component of voluntary testing is not the actual administering of the HIV test, but rather the HIV counseling that precedes it.

Providing HIV counseling and then voluntary testing to women of childbearing age in gynecological settings, sexually transmitted disease clinics, family planning clinics, and so often. is crucial regardless of their HIV status. Counseling is not just for women who turn out to have HIV; it is the way in which doctors explain to the healthy women how to remain that way. For women who are not infected, counseling acts as a precautionary measure, hopefully reducing their risk of becoming infected. Counseling for women who are already infected gives them the opportunity for early diagnosis and treatment, allowing them to make informed reproductive decisions in the future (HIV Insite, 1995b).

Offering all women voluntary testing in the context of HIV counseling establishes a relationship of trust between a woman and her health care provider, which is essential for discussions about care and treatment options. Once a woman has been notified by her physician that she is indeed HIV positive, she will receive further counseling that will explain the treatment options available to help slow the progression of the virus and reduce the risk of transmission to her unborn fetus. This is a crucial aspect of the voluntary testing proposal. Voluntary testing also increases the number of women that will actually consent to the test. The physician should not influence discussions of treatment options. The final decision to accept or reject AZT treatment during pregnancy, or ever, should be the responsibility of the woman.

In regard to voluntary testing, there are a few guidelines that physician's should adhere to, even before knowing the HIV status of their patients. Physicians should ensure that all pregnant women are given HIV counseling and are encouraged to be tested for HIV infection, which will allow women to know their HIV status as early as possible. It is important that women are told before being encouraged to take an HIV test that if they do not consent, they will not be refused prenatal care, or be discriminated against in any way (HIV InSite, 1995b). Once women have been diagnosed as HIV positive, they should receive counseling which will educate them about the virus, the benefits of drug intervention, and the interaction between pregnancy and HIV infection. They should be provided with information concerning AZT therapy as an effective way of reducing the risk for vertical transmission. This information, like the initial HIV counseling, should be non-directive (HIV InSite, 1995b).

Data from universal, routine HIV counseling and voluntary testing programs in several areas indicate that high test-acceptance levels can be achieved without mandating testing. Mandatory testing might even be counterproductive, increasing the potential for negative consequences of HIV testing and resulting in some women avoiding prenatal care altogether (HIV InSite, 1995b). But if physicians act as facilitators who counsel pregnant women and then encourage them to be tested, the goal of reducing the risk of vertical transmission might be achieved, and with fewer negative consequences.

Works Cited

Childress, James F. "Mandatory HIV Screening and Testing." AIDS & Ethics. Ed. Reamer, Frederic G. New York: Columbia UP, 1991: 50-77.

Graubard, Stephen R. Living with AIDS. The MIT Press: Cambridge, MA, 1990.

Hardy, Leslie M., ed. HIV Screening of Pregnant Women and Newborns. Washington, DC: National Academy Press, 1991.

"HIV and Infant Feeding." UNAIDS. May 1997. (Article, HIV InSite, hivinsite.ucsf.edu/topics/international/).

"HIV test ordered for all pregnant women." USA Today. February 2, 1999. (Article, USA Today, www.usatoday.com/life/health/aids/).

Levine, Robert J. "AIDS and the Physician-Patient Relationship." AIDS & Ethics. Ed. Reamer, Frederic G. New York: Columbia UP, 1991: 188-214.

"PHS Guidelines for HIV Counseling and Voluntary Testing for Pregnant Women." Factsheet Public Health Service. CDC. July 1995. (Article, HIV InSite, HIVInSite.ucsf.edu/topics/women/).

"Public Health Service Task Force Recommendations for the Use of Antiretroviral Drugs in Pregnant Women Infected with HIV-1 for Maternal Health and for Reducing Perinatal HIV-1 Transmission in the United States." MMWR Reports, Vol. 47, January 30, 1998: No. RR-2. (Article, HIV InSite, hivinsite.ucsf.edu/medical).

"US Public Health Recommendations for Human Immunodeficiency Virus Counseling and Voluntary Testing for Pregnant Women." US Department of Health & Human Services—Public Health Service. July 7, 1995. (Article, HIV InSite, hivinsite.ucsf.edu/medical/).