Question: My client went to her physician for her prenatal examination. She was told that she is required to take a test for HIV. Can a doctor require her as an expectant mother to take the HIV test?
Answer: No, she is not required to take the test. The doctor may be required to encourage her to take an HIV test, but she has the right to refuse the test. However, in some states, if her HIV status is unknown, the doctor may be able to perform HIV testing on her newborn without her consent.
HIV testing of pregnant women has been a controversial subject since the advent of testing in the mid-1980's. Without medical intervention, the risk of an HIV-positive mother transmitting the HIV virus to her fetus during pregnancy, labor, or delivery ranges from zero to 65%. (1) Even if the mother does not pass the virus to her fetus during these stages, she may pass the virus to her newborn through breastfeeding. (2) In 1994, the National Institutes of Health announced findings from clinical studies showing that administering zidovudine [also known as ZDV or AZT (azidothymidine)] to pregnant women infected with the HIV virus reduced the risk of viral transmission to the fetus by about two thirds. The U.S Public Health Service issued recommendations based on these studies for ZDV therapy for pregnant women and newborns in August 1994. (3) The changes in medical practice using this therapy has resulted in increasing numbers of women testing for HIV during pregnancy and reduced the number of infants diagnosed with AIDS by 43% in 1996 over the number in 1992. (4) With an effective medical means of reducing perinatal HIV transmission, the debate for mandatory testing of pregnant mothers heated up.
The 1996 reauthorization of the Ryan White CARE Act, the major federal funding program for HIV services, led to discussion of mandatory testing, however, the final amendments call for HIV counseling and voluntary testing, as recommended by the Centers for Disease Control (CDC). (5) However, the amendments also urge mandatory testing of infants whose mothers have not undergone prenatal testing, with the threat of denying CARE Act (Title II) funding to states that have not either significantly reduced perinatal transmission, increased maternal testing to 95%, or instituted mandatory infant testing. (6)Congress directed the Secretary of Health and Human Services, in conjunction with the Institute of Medicine (IOM), to evaluate the issue of perinatal transmission and mandatory testing. (7) The IOM's 1999 report calls for universal HIV testing(8), with patient notification, as a routine component of prenatal care. (9) Nevertheless, the report preserves a woman's right to refuse the test. (10)
According to an as yet unpublished study of the fifty states and U.S. territories, (11) most states have implemented the CDC's guidelines for counseling and testing. Forty-five states have policies on counseling/testing of pregnant women. (12) Twenty-two states have policies on testing monitoring, or treatment of newborns. (13) Only 19 states have adopted laws or regulations concerning HIV testing and counseling of pregnant women. (14) As of June 1998, only the states of Idaho, Kansas, and Vermont have not passed laws or set policies regarding testing and counseling of pregnant women. (15)
In four states, Michigan, Mississippi, Tennessee, and Texas, a woman will be tested unless she specifically objects. (16) Prenatal care providers must offer the test in at least three states, Indiana, New Jersey, and Rhode Island. (17) Even in states that seek to pressure a woman into testing, a woman may refuse to be tested for HIV. (18) Nevertheless, a woman often may not know that she has that option.
Even if a woman refuses an HIV test, her newborn may be tested without her permission. (19) The IOM Report noted the limited utility of newborn testing in preventing perinatal transmission of HIV. (20)
Mandatory testing runs up against several barriers. As a public policy matter, some pregnant women who know that they must undergo an HIV test may avoid settings, like hospitals, if they know that they will be tested. (21) In avoiding these settings, these women would miss out on prenatal care and prenatal counseling. (22) Even if a woman agrees to the test and tests HIV-positive, there is no guarantee that she will accept the AZT prophylactic treatment or adhere to the treatment regime.
Testing for HIV, as any other invasive procedure, should require the patient's consent. HIV testing laws of many states require a patient's informed consent. (23) The current CDC guidelines recommend consent "in accordance with prevailing legal requirements." (24)
Many states have laws specific to the confidentiality of HIV test results and AIDS diagnoses. (25) Confidentiality of the results can be crucial to diminishing the possibility of future discrimination or domestic violence.
1. D. Hermann & W. Schurgin, Legal Aspects of AIDS, St. Paul, Minn: West Group, 1991 (1999 Cum. Supp.), 1:28.
2. D. Webber, editor, AIDS and the Law, 3rd Ed., Wiley Law Publications, 1997, §1.11
3. CDC. Recommendations of the U.S. Public Health Service Task Force on the Use of Zidovudine to Reduce Perinatal Transmission of Human Immunodeficiency Virus. MMWR 1994;43 (No. RR-11).
4. Institute of Medicine, Reducing the Odds, Preventing Perinatal Transmission of HIV in the United States, Washington, D.C., National Academy Press, 1999 (hereinafter, "Reducing the Odds") at 15. The entire report is searchable on the web at www.nap.edu.
5. 42 U.S.C. §300ff-33.
6. 42 U.S.C. §300ff-34(e)(2). The threat of a funding cut-off has not been particularly effective since Congress has not appropriated the $10 million authorized under 42 U.S.C. §300ff-33(c)(2).
7. 42 U.S.C. §300ff-36(a). 8. By "universal," the report recommends HIV testing of all women, regardless of risk factors and prevalence rates found where the women live. Reducing the Odds at 112.
9. Reducing the Odds at 109-110.
10. Reducing the Odds at 110.
11. The study is cited in Reducing the Odds at 69-70.
18. E.g. Arkansas' law is entitled, "Testing of pregnant women required." However, the statute relieves the physician of responsibility for not conducting testing if the medical record contains documentation that the patient refused testing. Similarly, Florida requires that an HIV test be "offered to each pregnant woman." If she objects to testing, the objection should documented in the medical record.
19. See e.g. Indiana Stats. Annot. §16-41-6-4; N.Y Pub. Health Law §2500-f (McKinney Supp. 1997)
20. Reducing the Odds at 17. Tests of newborns can also yield false positive tests.
21. D. Webber, supra, §2.2
23. See e.g. Calif. Health and Safety Code §§120990, 121020. Even in the states mentioned above, counseling must accompany the testing. The ability of women to refuse testing infers that consent to testing is required.
24. U.S. Public Health Service Recommendations for Human Immunodeficiency Virus Counseling and Voluntary Testing for Pregnant Women, 44 MMWR 1995 (No. RR-7) at 8.
25. D. Herman & W. Schurgin, supra, §8:24 Supp.