A Quiet Place: The Assault on Freedom of Conscience

Issue 153 - March/April 2009
by Peggy O'Mara, Editor and Publisher

As a new reader of Mothering in 1977, I was especially interested in the letters about circumcision and vaccinations. In fact, one of the first things I did when I bought the magazine in 1980 was to arrange the letters under specific headings so that readers could more easily follow the ongoing dialogues.

As the editor of Mothering, I see circumcision and vaccination as two of many issues that fall under the broader umbrella of informed consent or freedom of conscience. Sometimes people will characterize the magazine as pro-homebirth or anti-vaccine because of our frequent coverage of these issues. In fact, we are pro-informed consent; we publish both sides of the story so that parents can be aware of all angles before they make a decision. It was in this spirit of informed consent that I first became interested in covering HIV and AIDS. In 1996, I received a letter from Michael Ellner of Health, Education, AIDS Liaison (HEAL) in New York City. Michael asked Mothering to look into the new recommendation that all mothers and newborns be tested for HIV. In the Summer 1997 issue of Mothering, I reported that universal HIV testing, like universal prenatal testing, is controversial because AIDS is rare among women of childbearing age and among newborns.

Not only is universal HIV testing for pregnant women and newborns controversial, but also are the medications prescribed for HIV and the recommendations regarding breastfeeding. Up until 1997, the World Health Organization (WHO) left the infant-feeding choice up to the HIV mother herself. By 1998, the recommendation had changed and WHO recommended safe alternatives to breastfeeding. As a retired La Leche League Leader, I was dismayed that breastfeeding was contraindicated in HIV because up until then, only one disease—untreated, active tuberculosis—contraindicated breastfeeding.

In September 1998, Mothering published the article, "AZT Roulette: The Impossible Choices Facing HIV-Positive Mothers." It is about the dilemma of women who test positive for HIV—but have no risk factors or symptoms of illness—and are coerced into taking drugs (such as AZT) that can cause premature birth, birth defects, cancer, and death. These women are accused of potentially risking the lives of their children when they question taking these drugs, and yet they are, in fact, actually risking the lives of their children when they do take them. One of the things that most concerned me in this article was the high rate of complications among babies whose mothers take AZT. In one study, for example, the rate of birth defects was 13 percent, nearly six times the normal rate. Another study was halted because of the high rate of premature births. If this weren't bad enough, pregnancy is one of the conditions listed by the manufacturer of the HIV test that can result in a false positive for the virus.

One of our readers whose life was dramatically ?affected by HIV is Kathleen Tyson, whose story appears in our May?June 1999 issue. In September 1998, Kathleen's midwife called to ask her to come in to talk about her prenatal tests. She and her husband were worried as they drove to the midwife's office, but they never expected it to be the HIV test. Kathleen had tested positive. As a vegetarian who danced, practiced yoga, and ran 10 to 16 miles a week, Kathleen felt she was in the best shape of her life. She was in a long-term monogamous relationship and had no risk factors for AIDS. Still she wanted to do the right thing, so she began taking AZT. Six weeks into the regimen, however, she stopped because she felt sick every time she took the drug and was worried about its effect on her baby. She planned to birth at home and to breastfeed, but two weeks before her baby's due date, she had an emergency cesarean because of a prolapsed cord. After she awoke from the anesthesia, she nursed her son Felix. But before the day was out she was ordered by her pediatrician to stop breastfeeding and served a summons to appear in court two days later. There she was court-ordered to cease breastfeeding her newborn baby and to give him AZT every six hours around the clock for six weeks. The bitter irony of Kathleen's experience is that the WHO recommendation regarding HIV and breastfeeding changed again because research since 1999 has shown that exclusive breastfeeding is actually a protection against HIV. The choices facing mothers who question mandatory medication for HIV are not unlike those faced by parents who choose to give birth at home in a country where 99 percent of births take place in the hospital, or parents who decide not to circumcise their son, even though the majority of their peers are doing so. These choices are not unlike those made by parents who wonder if they can delay childhood vaccines, select some but not all of them, or forego them altogether.

These parents exercise their freedom of conscience—a right supported by US courts for more than 100 years. Freedom of conscience is protected under the doctrine of informed consent, which specifically protects the right to decline. For informed consent to be valid, a decision must not be coerced.