HIV and AIDS

Forced and coerced sterilisation of HIV-Positive Women: A Human Rights Issue

Guaranteeing women’s human right to free and informed reproductive healthcare decision-making

What are the duties of [care] providers and ministries of health to ensure that women living with HIV are fully informed and have the capacity to freely decide whether or not to become pregnant, to carry a pregnancy to term or to terminate a pregnancy?

In 2006, the UNAIDS Agenda for Action on Women and AIDS  responded to the gendered impact of HIV and AIDS by calling on governments to ensure that AIDS health programmes ‘work for women’ – in particular by “…expanding access to health services that women need including comprehensive education, sexual and reproductive health services, antenatal care, prevention of mother-to-child transmission (PMTCT) programs and equitable access to antiretroviral therapy (ARV).”

The agenda has been largely developed in response to early HIV and AIDS health programming, which too often regarded women in instrumentalist terms. The programming was characterised by a focus on preventing transmission from mothers to their infants, without looking to the prevention of transmission from parents to children. Other dominant encounters with ‘mothers’ include the 15 million children orphaned or abandoned due to HIV-related ill-health or death of their parents. The common understanding had been that it was mothers who infected and who orphaned or abandoned their children.

Reproductive healthcare in the HIV and AIDS context has thus been complicated by public health concerns respecting ‘mother-to-child transmission’, and the future care of children born to women living with HIV. As a result, HIV positive women have encountered, and continue to experience, both subtle and overt pressure from health providers, partners, families, communities and the state to terminate existing, and to avoid future, pregnancies. In 1998, the South African Medical Journal published a letter from a hospital staff-member which stated “…(i) The availability of antiretroviral treatment should be conditional on voluntary or enforced sterilisation after the present pregnancy; (ii) …termination of pregnancy should be considered in HIV-infected pregnant women, either voluntarily or by law; (iii) an Act of Parliament should be considered to the effect that all HIV-infected women in their reproductive years should be sterilised.”

Although many health professionals may not openly voice such opinions, research studies and anecdotal reports indicate that such attitudes are widespread. The High Commissioner for Human Rights (OHCHR) and UNAIDS have expressly addressed this problem of coercion. In a 1998 statement, OHCHR noted that programmes targeting pregnant women “often emphasise coercive measures directed towards the risk of transmitting HIV to the foetus, such as mandatory testing followed by coerced abortion or sterilisation.”

While attitudes have slightly shifted since the introduction and greater availability of anti-retroviral therapy, too few HIV positive pregnant women are able to access the treatment and services they require. In many cases, providers do not perceive their advice as coercive but instead as providing ‘counseling and guidance’ to women who face many challenges in the bearing and raising of children as a consequence of their HIV positive status.

A human rights approach to free and informed reproductive health decision-making is guided by the principle that all women have a right to reproductive autonomy including the right to bear children, regardless of their HIV status. The Convention on the Elimination of Discrimination against Women [CEDAW], for example, provides that women’s human rights are violated by the failure to both ensure non-discriminatory access to health services and to protect women from non-consensual medical interventions. Rather, women are entitled by right to acceptable healthcare services defined as ”… those that are delivered in a way that ensures that a woman gives her fully informed consent, respects her dignity, guarantees her confidentiality and is sensitive to her needs and perspectives.”

Coercive (or non-consensual) medical interventions, including abortion and sterilisation, constitute grave violations of women’s human rights as guaranteed not only in CEDAW, but also the International Covenant on Civil and Political Rights  (the Political Covenant), and the International Covenant on Economic, Social and Cultural Rights  (the Economic Covenant). The violation of women’s human rights to acceptable reproductive health care also undermines broader public health goals by dissuading women from seeking care and services. Women may be deterred ”…from accessing care, because of the negative associations of HIV, or because they anticipate or experience prejudicial behaviour from healthcare providers. ”

The guarantee of women’s human right to free and informed reproductive healthcare decision-making is, thus, essential from both a human rights and a public health perspective. While a woman’s HIV positive status may influence her healthcare decision-making, it should not result in her discriminatory treatment at the hands of health providers or the health system. Prevention and other health programmes should provide information and access to services in a manner that respects the dignity of women by facilitating their free and informed reproductive decision-making. In the 1998 Guidelines on HIV/AIDS and Human Rights, UNAIDS and OHCHR expressly recognised that ”…[l]aws should…be enacted to ensure women’s reproductive and sexual rights, including the right of independent access to reproductive and STD health information and services and means of contraception, including safe and legal abortion and the freedom to choose among these, the right to determine number and spacing of children.”

The tension between public health and human rights approaches in reproductive health decision-making, to the extent that there is one, usually arises not from a difference in objectives, but a difference in chosen means to achieve legitimate public health objectives. Rather than viewing public health and human rights approaches in starkly opposing terms, it is more useful and more accurate to consider how existing tensions in implementation can be overcome.

Extract from: ‘Bridging the Gap: Developing a Human Rights Framework to Address Coerced Sterilization and Abortion’. ATHENA. 2008

Ref:

1. UNAIDS, The Global Coalition on Women and AIDS. 2006. Keeping the Promise: An Agenda for Action on Women and AIDS.

2. See Cohen, J., Kass, N. & Beyrer, C. 2007. ‘Responding to the Global HIV/AIDS Pandemic: Perspectives from Human Rights and Public Health Ethics’.
 3. de Bruyn, M. 2002. Reproductive choice and women living with HIV/AIDS. Chapel Hill, NC:

4. Ibid, p13.

5. Supra note 3.

6. OHCHR and UNAIDS. 1998. HIV/AIDS and Human Rights

7. Convention on the Elimination of All Forms of Discrimination against Women. A/Res/34/180

8. Committee on the Elimination of All Forms of Discrimination against Women (CEDAW). 1999. General Recommendation 24: Women and health. para 22.

9. International Covenant on Civil and Political Rights. A/6316.

10. International Covenant on Economic, Social and Cultural Rights. A/6316.
 11. The notion that human rights protection promotes public health is commonly referred to as the HIV/AIDS paradox. See MacFarlane, S., Racelis, M. & Muli-Muslime, F. 2000. Specifically, the HIV/AIDS paradox teaches that behaviour modification is best achieved by protecting the rights of vulnerable groups.
 12. de Bruyn, T. 2002. ‘HIV-Related Stigma and Discrimination: The Epidemic Continues’. In: Canadian HIV/AIDS Policy & Law Review, 7(1), 8 at 9.

13. OHCHR UNAIDS. 1997. HIV/AIDS and Human Rights: International Guidelines. Second International Consultation on HIV/AIDS and Human Rights. HR/PUB/98/1, 20-21.