Excerpted from: Taunya Lovell Banks, Women, and Aids -- Racism, Sexism, and Classism, 17 New York University Review of Law and Social Change 351 (1989/1990) (173 Footnotes) (Full Document)
As the number of babies with Acquired Immunodeficiency Syndrome [hereinafter AIDS] or Human Immunodeficiency Virus [hereinafter HIV] infection rises, people question the right of HIV-infected women to bear children. This Article focuses on the reproductive freedom issues that arise in the context of AIDS and HIV infection in pregnant women and women of childbearing age. Policies to screen for and counsel pregnant women and women of childbearing age about HIV infection present enormous possibilities for abuse through involuntary testing and directive counseling to abort or to be sterilized. The issue of health policies for fertile women with AIDS or HIV infection is complicated by the fact that most women currently identified as at risk in the United States are poor and/or women of color.
It is estimated that nationwide, more than seventy percent of women with AIDS are African-American or Latina. Public health policies directed toward fertile women with AIDS/HIV are and will be influenced by the fact that most HIV-infected women are poor women of color. Poor women of color most often receive their health care through government provided or funded facilities. Because these facilities are most likely to deal repeatedly with HIV-infected pregnant women, women of childbearing age, and babies, they will be the institutions developing and implementing HIV screening and counseling programs for women. This Article examines potential testing and counseling methodologies to be used in public institutions and tests them for conformance with current equal protection and privacy constitutional standards.
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There is a compelling need for federal legislation which recognizes the race, class, and privacy issues involved in routine HIV prenatal screening and directive counseling. This legislation would apply to all federal facilities and any other facility receiving federal funds and would require that all HIV testing of women of childbearing age be performed with written consent. Consent forms must be written in the woman's native language. In order to preserve privacy and autonomy, special assistance by a person of the woman's choice must be provided for women who are either actually or functionally illiterate. In addition, the proposed legislation would prohibit the use of directive counseling.
If mass HIV screening programs are going to be endorsed by the government, certain prerequisites must be met. First, there must be community participation in the planning and implementation of any HIV screening program involving poor women and women of color. Each of these communities has a different culture and history that must be taken into account when designing mass screening programs.
Second, pilot projects should precede any mass screening. Pilot programs test the feasibility of any mass screening proposal directed at a targeted group or area. Pilot projects allow program adjustments to be made quickly and minimize risk of harm to the targeted population.
Third, screening procedures must be adequate. This means that where screening is routine, the written informed consent of clients should be obtained and consent forms should be simply written. Furthermore, there should be short waiting periods for tests and test results, and adequate counseling both before testing and after the receipt of test results.
There is some question about what constitutes adequate counseling. Without question, adequate counseling includes counselors who are fluent in the women's native language and who, where needed, have had cross-cultural training. Adequate counseling may mean that fifteen to thirty minutes with a client may not be enough, especially where the client has a positive test result. The shock of learning that one has a positive test may negate any attempt to counsel on safe sex and other personal matters. Any woman may not fully understand the reproductive implications of a positive HIV antibody test after only one counseling session. Even where the counselor is nondirective, misinformation about the nature of the risk of transmission to sexual partner or fetus may have the same effect as directive counseling. Careful monitoring of counseling is essential.
Finally, mass HIV screening programs must adequately protect the targeted community. This raises the issue of anonymous versus confidential HIV testing. Although several commentators claim that anonymous screening is more likely to create confidence in those who must be tested, where prolonged counseling is necessary, confidential testing may be more appropriate. Of course, in states which mandate reporting of all positive HIV antibody tests, anonymous testing may be more effective until adequate anti-discrimination and confidentiality provisions are enacted.
Because the potential for abuse of HIV-infected women's reproductive rights is great, the implications of HIV screening programs directed at fertile women cannot be ignored. Women currently identified as at greatest risk of HIV infection are poor women and/or women of color. Because these women are invisible or are considered by some to be less valued members of society, the threat to their rights is at risk of being ignored. There is too much at stake to allow that to happen. If fertile HIV-infected women lose their right to choose, then all women will lose. Our indifference to women infected with HIV will have dramatic consequences for future generations of women. At the very least some protective legislation must be enacted at the federal and state level.
Professor of Law, The University of Maryland School of Law