What is the best approach to achieve human immunodeficiency virus (HIV) testing in pregnant women? This is a critical question because one of the great advances in HIV treatment has been the potential for virtual elimination of HIV transmission in perinatally exposed infants. Successful treatment, however, depends on the identification of HIV-positive women before or during pregnancy. Studies^1,2 have shown that if treatment is initiated during pregnancy, continued through labor and delivery (including appropriate use of cesarean section and antiviral medications), and administered to neonates after delivery, the HIV infection rate in these infants can be as low as 2 percent.

The preferred approach to perinatal HIV testing has been controversial. The traditional approach consists of counseling and voluntary HIV testing. Another approach, promoted by the Institute of Medicine (IOM) over the past few years, involves routine HIV testing with the right of “informed refusal” (i.e., the pregnant woman is informed that she will have an HIV test but has the right to refuse testing).

Although the differences between the two approaches are subtle, I prefer counseling and voluntary HIV testing. Studies have shown that regardless of apparent risk, 95 to 97 percent of pregnant women are willing to undergo HIV testing if such testing is strongly recommended.^3–5 However, it is not enough to merely offer an HIV test. High rates of voluntary HIV testing can only be achieved if physicians and their staff are committed to encouraging testing of every pregnant woman and every woman who is contemplating becoming pregnant.

With appropriate education about HIV infection, pregnant women acquire knowledge that benefits their own health, as well as the health of their babies. An approach that consists of patient education and voluntary HIV testing empowers women and allows them to engage in mutual decision-making with their physician. This approach also encourages a trusting relationship with the physician, which is essential for effective communication and compliance with the long, extensive, and complex treatment of HIV infection.

Routine HIV testing with the right of informed refusal has been proposed to address the problem that HIV testing is not offered to all pregnant women in the United States.⁶ The rationale is that the HIV counseling guidelines established by the Centers for Disease Control and Prevention (CDC)⁷ are onerous, costly, and burdensome to health care professionals—and, thus, a barrier to testing. It is also believed that an informed refusal policy will eliminate disparate testing of lower socioeconomic and minority groups.

Routine prenatal HIV testing with the right of informed refusal may be a more convenient and less time-consuming approach for health care professionals. However, experience in Indiana indicates that it is not necessary to employ the extensive CDC guidelines in counseling patients. Instead, health care professionals and their staff can use a one-page patient education handout to convey necessary information effectively, easily, and quickly. This form was developed by Indiana's Department of Health in association with the state's medical, health care, and public health communities. Women in Indiana are given this educational form to sign and then are universally offered voluntary HIV testing.

Like many public health professionals, I believe that routine HIV testing with the right of informed refusal will not eliminate disparate testing of minority groups. In fact, it could easily facilitate selective testing by giving health care professionals the opportunity to promote refusal of testing in patients who are not considered to be at risk for HIV infection and whom they do not wish to offend. Likewise, health care professionals could withhold information regarding testing from patients felt to be at increased risk to avoid drawing attention to the HIV test being ordered.

In minority groups, routine HIV testing with the right of informed refusal may also further isolate and alienate women who may already feel estranged from the health care system. Many of these women may be sensitive about being tested or treated without having given their explicit consent. They may be especially concerned about not being able to control what happens to them in the health care system, as well as the message that they are less than able to be a full participant in the decision-making process.

Unfortunately, HIV infection/acquired immunodeficiency syndrome (AIDS) is not like other diseases, and a prenatal HIV test is not like other prenatal tests. For many people, there is still a stigma attached to having AIDS. Sadly, HIV testing does not guarantee successful treatment of the mother or baby.⁸ No evidence or data suggest that a policy of routine HIV testing with the right of informed refusal will result in the testing of more women or the identification of more HIV-positive women. The policy also raises an important question: Will the very women the medical system wishes to identify avoid prenatal care if HIV testing is perceived as being expected or difficult to refuse?⁹

Most importantly, an informed refusal policy will de-emphasize the importance and role of patient education, which is so fundamental to the specialty of family medicine. Provision of knowledge through patient education is the only strategy that will prevent HIV infection in women. Patient-physician communication will also help to identify at-risk women who may be in the window period early in pregnancy and become HIV positive later in pregnancy. These women should undergo HIV testing a second time before delivery.¹⁰