Often lack of informed consent or consent extracted under duress
LONDON (TrustLaw) - When Promise Mthembu went to a public hospital to have an abortion 14 years ago, the doctor told her he would terminate the pregnancy on one condition – she had to agree to be sterilised.
Mthembu, who is from Durban, South Africa, had been diagnosed with HIV two years earlier and she believes that was the reason behind the doctor’s ultimatum. Although she did not want to be sterilised, she felt she had no time to explore other choices and reluctantly agreed.
“It was explained to me but I felt as if it was coercion,” she told TrustLaw. “By law, I should be asking for sterilisation. It should not be offered to me as a condition.”
Mthembu, who already had a young daughter before undergoing the procedure, is still angry with the doctor. The sterilisation was done in such a way that it could not be reversed, she said, and her six attempts to conceive by IVF since then have failed. She said she takes anti-depressants from time to time.
“He possibly destroyed my life,” she said of the doctor. “After the operation I felt like hiding my face all the time. I felt I was not a full woman anymore because I could no longer reproduce.”
Mthembu has since discovered that her experience is not unique. Since January, the NGO she heads, Her Rights Initiative (HRI), has been collaborating with other partners to document cases of coerced sterilisation of HIV-positive women in South Africa. So far, Mthembu has interviewed 30 women from the province of KwaZulu-Natal who say they were forcibly sterilised, the majority at public hospitals. She said HRI is waiting for data from other provinces and that its legal partners are exploring the possibility of litigation.
The cases are not confined to South Africa. In nearby Namibia, eighteen HIV-positive women who allege they were sterilised at public hospitals without their informed consent have sued the government. The High Court of Namibia began hearing three of the cases in October 2009. The trial concluded in January and a judgment is expected later this year.
The International Community of Women Living with HIV/AIDs (ICW) began documenting the practice of forced and coerced sterilisation in 2008 after holding a series of workshops with HIV-positive women in Namibia. Of the 230 women ICW researchers interviewed at the workshops, 40 said they had been sterilised against their will, the organisation said in a report published in March 2009.
CASES OF CONSENT UNDER DURESS OR LACK OF INFORMED CONSENT
In some of the cases, medical staff had failed to obtain consent from the women, who only found out they had been sterilised after the procedure had been carried out. Some women were asked to sign consent forms authorising sterilisation in order to access services, such as abortions, caesarean sections or assistance with the delivery of their babies, while others were presented with consent forms while they were in labour.
A number of women gave their consent based on misinformation, the report said. For example, they were told that their HIV status would put the lives of future children at risk. They were also misled about the risks of their child contracting HIV, said Aziza Ahmed, a former ICW legal fellow who conducted interviews with the women and co-authored the report.
“You are not giving true consent if the information is not full and accurate information about what you’re consenting to,” said Ahmed, who is now an assistant professor of law at Northeastern University in Boston. “In the U.S., for example, if you have full care delivered in the appropriate manner the chance that an HIV-positive woman will have a child with HIV is less than two percent. It’s very possible now for an HIV-positive woman to have a healthy child without HIV.”
Language barriers and the inability of many women to read or speak English also affected their treatment, ICW said. Many doctors in Namibia are foreign and do not speak local languages and hospitals often have no translators.
Ahmed said the women who were sterilised found the experience distressing, especially as their culture places a high value on motherhood. Those who hoped to get married worried about finding husbands who would accept them, while those with partners feared being abandoned for women who could bear children.
THE PERSONAL AND CULTURAL COSTS OF FORCED STERILISATION
“There are a whole set of consequences, from depression, the feeling of trauma, feeling frustrated with the medical system and there’s the reality of our world: in the Namibian context having a child is often conflated with womanhood,” she said.
Ahmed added that the sterilisations were happening in a much broader context of violations of the rights of HIV-positive women in the healthcare setting. According to UNAIDS, women account for more than half of all reported HIV infections in Namibia, where the HIV prevalence rate for adults is 15.3 percent.
“There’s a bias against HIV-positive women,” Ahmed said. “There’s a lot of discrimination that goes on (including) dissuading women from getting pregnant, not wanting to touch women while in labour, not giving adequate information about birth control.”
The 18 women who sued the Namibian government allege that they were sterilised because of their HIV status. Linda Dumba-Chicalu, a lawyer from the Legal Assistance Centre, which is representing the women, said they are from very poor backgrounds and have minimal education. Although they would like to have more children, IVF treatment is too expensive for them and is only available in South Africa. They are asking for compensation of 1 million Namibian dollars (approximately $150,000) each, but also want an opportunity to be heard in court, Dumba-Chicalu said.
“We’re asking the government to come up with a statement to say that there will be no more sterilisation of HIV-positive women without their informed consent,” she said.
Gladys Kamboo, a spokeswoman for the Namibian Ministry of Health and Social Services, said she could not comment as legal proceedings were still ongoing.
Our Standards: The Thomson Reuters Trust Principles.
