Sterilization of Women Living with HIV/AIDS Without Their Informed Consent: Case Studies

Sexual and reproductive health rights threatened through forced sterilisation of women living with HIV/AIDS: Case studies from Namibia and South Africa

Abstract

In spite of a woman’s right to make sexual and reproductive choices as endorsed in various human rights charters and conventions, women living with HIV continue to encounter discriminatory attitudes from health care institutions about their child bearing choices. Cases of coerced sterilization of women who are HIV positive are on the rise in southern Africa. Specific cases have been reported in South Africa and Namibia. This article examines the current state of women’s reproductive and sexual health rights in southern Africa as legitimated in various human rights charters and conventions. It considers case studies of coerced sterilization and perspectives of various women’s rights organizations. It describes women forced sterilization and how it is a significant violation of sexual and reproductive rights which despite being taken up by a range of NGOs is still a significant human rights abuse in the region. It is anticipated that this will help stakeholders advocating women’s rights, including governments, in identifying specific rights violations and respond appropriately. The underlying objective is to build the capacity of stakeholders to hold governments accountable for promises they have made through signing national and international legal agreements that protect people’s rights. The article concludes by a discussion of some suggestions for positive change and resources for women’s reproductive health rights advocacy in the region.

Key words

Sterilization, informed consent, HIV positive, women, reproductive rights

1. Introduction

There have been reports from women’s rights activists that certain public health doctors, mostly from the southern African region are sterilizing women living with HIV against their will. Against this evidence, the paper will review the state of women’s sexual and reproductive rights in the era of HIV/AIDS with particular reference to southern Africa. It will consider the current legislation and the views from bodies lobbying for human including women’s sexual and reproductive rights. The issue of informed consent will be intensely explored as it is the legal clause that forms the basis of an individual’s willingness to participate in an action. Case examples from Namibia and South Africa will form the focus of attention. The article draws on news paper articles, presentations made and literature published after 1994 when reproductive rights were first officially recognized at the International Conference on Population and Development (ICPD) in Cairo. However, it includes some papers and books published prior to this where these are viewed as having made an important contribution to issues and debates around women’s sexual and reproductive health rights. The focus will primarily be on women’s sexual and reproductive health rights as their reproductive health is regularly compromised because their rights are overlooked.

2.HIV/AIDS and its impact on women in Sub-Saharan Africa To date, the HIV/AIDS epidemic has had its most profound impact in sub-Saharan Africa and women make up the majority of those living with HIV/AIDS in the region (Henry J. Kaiser Family Foundation, 2006). According to the latest (2008) WHO and UNAIDS estimates women in sub-Saharan Africa constitute 60% of people living with HIV. Women are especially vulnerable to HIV/AIDS because they have more vulnerable employment status dependent on labour intensive activities, lower incomes, least access to formal social security and least entitlements to or ownership of assets and savings (Mutangadura, 2001; De Bruyn, 1992). They are physiologically at high risk of being infected by HIV/AIDS and research indicates that the risk of HIV infection is 2 to 4 times higher for women than men during unprotected intercourse because of the larger surface areas exposed to contact (NACP, 1998; De Bruyn, 1992). More than 50 percent of the women in sub Saharan Africa live in rural areas where services are often inaccessible and unaffordable. It has already been recognized that the subordination of women to men creates a highly unfavorable environment for preventing HIV infection especially when major prevention strategies recommended are abstinence, mutual fidelity or use of male condom, none of which are under the control of women. 3. Forced sterilisation of HIV positive women Against a backdrop of the high HIV prevalence amongst women in the region, NGOs have increasingly reported instances of forced sterilizations of HIV positive women.

3.1 Forced sterilisation: Unpacking the term Female sterilization is a procedure in which the fallopian tubes which carry the egg from the ovary to the uterus are blocked, thereby preventing the sperm from uniting with and fertilizing an egg (Family Health International, 2009). The procedure effectively ends a woman's fertility and because is usually not reversible, it is important that women make a voluntary and informed choice when considering female sterilization. Sterilization becomes coerced when it entails the use of intimidation, fear, pressure or deception to get consent for the procedure.

3.2 Forced sterilizations: Myth or reality - the Namibian and South African experiences The first coerced sterilization cases in Namibia were reported in 2007 when 3 of the 30 participants in an International Coalition of Women Living with HIV (ICW) training project with young HIV positive women stated that they had been sterilized without their informed consent (ICW, 2009). Since February 2008 and to date, the Legal Assistance Centre (LAC) in Namibia has documented fifteen individual cases in which women seeking medical care were subjected to sterilization without informed consent at state hospitals in two of the thirteen regions of Namibia. Most of the clients did not even know that they were sterilized until they consulted medical personnel (Gatsi-Mallet, 2008). Litigation proceedings have commenced in all fifteen cases including the prescribed ones.

In all the documented cases, informed consent was not adequately obtained due to one or more of the following factors: consent was obtained under duress, medical personnel failed to provide full and accurate information regarding sterilization procedure, consent was invalid as the women were not informed of the contents of the documents they signed and women were told or given the impression that they had to consent to sterilization in order to obtain another medical procedure such as an abortion or caesarian section (Kalambi, 2008). As noted by Jennifer Gatsi-Mallet, ICW Namibia Coordinator, “these women were in pain, they were told to sign, and they did not know what it was. They thought it was part of their HIV treatment. None of them knew what sterilization was, including those from urban areas because it was never explained to them” (Gatsi-Mallet quoted in The Guardian Newspaper, 22 June 2009). The reported cases in Namibia were from women who could not read, write or speak English, were black and used public health care services, who were poor and from disadvantaged backgrounds or informal settlements,who did not know what sterilization meant or entailed or who did not know what informed consent entailed (Dumba, 2009)

In 2008, the ICW made a submission to the Deputy Minister of Health highlighting that coerced sterilization violated numerous rights guaranteed under the Namibian Constitution bearing in mind that Namibia ratified the Convention on the Elimination of Discrimination Against Women (CEDAW) in 1992 (Gatsi-Mallet, 2008). In addition to this effort, the ICW continues to engage in research and advocacy with partner organizations in order to raise awareness of coerced sterilization in Namibia. Health Minister Dr. Richard Kamwi has categorically denied that HIV-positive women are ‘systematically coerced’ to be sterilized at State hospitals (The Namibian, 3 July 2009). In a ministerial statement in Parliament on 1 July 2009 the Minister stated that his ministry undertook an investigation at various state hospitals including Katima Mulilo and their findings did not indicate any specific trend with regard to bilateral tubal ligation performed on HIV positive women (The Namibian, 3 July 2009). He said the investigation clearly established that all women who had had a caesarean section as well as a sterilisation had signed the relevant consent forms before the operation was done.

The LAC has since responded to the Minister placing on record the assumption that no investigations took place because non of the clients who are on record as being sterilized, were approached by the Ministry as part of the investigations (Dumba, 2009). LAC also expressed its concern that the matter is not being investigated and no remedial action was being taken to avoid the further sterilization of HIV positive women without their informed consent. Be that as it may, six of the cases have been set down for hearing and will be heard in two sets. The first set of cases will be heard during the week of 20 to 23 October 2009 and the second set during the week of 24 to 27 November 2009.

There have also been media reports on coerced sterilization cases in South Africa. According to Kardas- Nelson (Mail &Guardian, 19 June 2009), South Africa’s Women’s Legal Centre has documented 12 cases of South African women living with HIV, who claim to have undergone coerced sterilization. One of the documented cases was that of a 19-year-old patient at Prince Mshiyeni Hospital, outside Durban. In 2007 she was allegedly pulled out of the delivery ward while in labor and told by the doctor "you have to be sterilized" (Mail & Guardian, 19 June 2009).

Promise Mthembu, a women’s rights activist who is helping compile the South African cases said many of the patients had been told that to gain access to medical services they had to undergo the procedure. She told of a 14-year-old Orange Farm resident who "went to get an abortion earlier this year, and they said they would only operate if she was sterilized" (Mail & Guardian, 19 June 2009). In South Africa, cases are being referred to the Women's Legal Centre with a view to possible action. Promise Mthembu told the Mail & Guardian newspaper that coerced sterilizations were happening in "very large areas" of the country and many patients were forced to undergo the operation as the only means of gaining access to medical services. Surprisingly enough, South Africa has legislation stipulating that consent must be obtained prior to any sterilisation and that it must be “given freely and voluntarily without any inducement” (SA Sterilization Bill, 1998)

The case studies show that coerced sterilisation is indeed a gross violation of women's rights, and appears to be driven by the HIV epidemic. Sterilising women without their informed consent violates numerous human rights, including those guaranteed and protected under the concerned countries’ constitution and international treaties. These include, but are not limited to, the right to liberty and security of the person; to health, to find a family, including reproductive health; to family planning; to privacy; to equality; to freedom from discrimination; and most importantly to life.

4. Sexual and reproductive rights for women – the international law framework Sexual and reproductive health rights are defined as, “the right for all people, regardless of age, gender and other characteristics, to make choices regarding their own sexuality and reproduction, provided that they respect the rights of others” (Griffin, 2004). They are well established in international law as evidenced in the United Nations Charter of Human Rights, the International Convention on Civil and Political Rights, the International Conference on Population and Development (ICPD) held in Cairo in 1994, the Beijing conference in 1995, the 1968 Teheran Human Rights Conference, the African Charter on Human and People’s Rights, the Committee on the Elimination of All Forms of Discrimination Against Women (CEDAW), the African Women’s Protocol as well as in the International Planned Parenthood Foundation (IPPF) Charter on Sexual and Reproductive Rights.

The Universal Declaration of Human Rights condemned discrimination on the grounds of sex and set out a network of rights relevant to the promotion and protection of health. The Universal Declaration has laid a strong foundation for the development of a body of international human rights law enshrined in legally binding covenants and conventions, within which the right to reproductive health was included (UN, 2009). At the International Conference on Population and Development (ICPD) held in Cairo in 1994, women’s reproductive capacity was transformed from an object of population control to a matter of women’s empowerment to exercise personal autonomy in relation to their sexual and reproductive health within their social, economic and political contexts (Shalev, 1998). The ICPD acknowledges the right of women to personal reproductive autonomy and to collective gender equality as an important aspect of the development of reproductive health and population programmes. The Beijing conference in 1995 went further from the premises of the ICPD by forging international commitments to promoting equality, development and peace for and with all the women of the world. It was endorsed at this conference that equality between women and men is a human rights concern, and that empowering women ensures the development of a sustainable and equitable society (Beijing Declaration, 1995).

The 1968 Teheran Human Rights Conference endorsed two key sexual and reproductive health rights issues. These are the protection of the right to family planning and that individual and couples should be able to make their own child bearing decisions (Proclamation of Teheran, 1968). On the other hand, the African Charter on Human and People’s Rights address human rights from an African perspective and calls on all states parties to eliminate discrimination against women and to ensure the protection of the rights of women as stipulated in international declarations and convention (African Commission on Human & People’s Rights, 2003). Attached to this Charter is the African Women Protocol which emphasise the importance of women’s right to control their fertility; the right to decide whether to have children, the number and spacing of children; the right to choose any method of contraception and the right to have family planning education (Mukasa, 2008; Centre for Reproductive Rights, 2006).

The United Nations Committee on the Elimination of All Forms of Discrimination Against Women (CEDAW) often described as the international bill of rights for women was the first instrument to bring together all women’s human rights clauses that were scattered in various instruments into one ambit of a single Human Rights Instrument. State parties commit themselves to ensuring that government organizations comply with the CEDAW regulation by taking legislative and other appropriate measures to eliminate discrimination of women in public institutions or abolish discriminatory laws, customs and practices (Foster, 1998). Linked to this is the International Planned Parenthood Foundation (IPPF) Charter on Sexual and Reproductive Rights that makes reference to the “right to liberty and security of the person, “the right to information and education”, the “right to information and education”, the “right to healthcare and health protection” and most importantly the “right to decide whether or when to have children” (ARASA, 2008).

Many of these conventions have been signed and ratified by African countries, thus there exist legal obligations on states within the Sub-Saharan region to ensure that sexual and reproductive rights are protected and fulfilled. If we apply these rights to forced sterilizations it is clear that sexual and reproductive rights include the rights of women to decide when to have children and how many to have irrespective of their HIV status.

5. Informed consent to medical interventions and the right to freedom from coercion in accepting contraception

Informed consent is one of the ethical cornerstones of modern healthcare. The phrase ‘informed consent’ refers to, “the right of every competent patient to be told about any proposed intervention before it is performed” (Faden and Beauchamp, 1986). The reason for the intervention, any foreseeable consequences of accepting or rejecting, existence and nature of available alternatives and the fact that an individual is free to accept or reject the intervention should all be made clear in the informed consent document. Valid informed consent therefore incorporates five elements: voluntarism, capacity, disclosure, understanding, and decision making (De Carmen and Joffe, 2005). Voluntarism requires that the patient be free from coercion and from unfair persuasions and inducements. To deprive someone of decision making power regarding themselves is effectively to deny them their status as an autonomous being (Kluge, 2007). Informed consent is therefore grounded in the principle of autonomy which implies that everyone has a right to self determination as reflected in the Universal Declaration of Human Rights.

Ideally, individuals living with HIV who wish to use a permanent contraceptive method should have access to female sterilization and vasectomy in an informed manner, free from coercion (Delvaux and Nostlinger, 2007). In a study to assess personal wishes and medical prescription on HIV- positive women’s pregnancy and birth experiences in Brazil, women’s own preferences took a secondary place (Knauth, et al. 2003). This confirms that there are instances in which HIV-positive women are accepting sterilization not based on their own choice but are misinformed that it is the best choice for them. This contradicts the notion of informed consent through which an individual is given the facts and has the right to make decisions about their own health and medical condition.

Freedom of decision-making is integrally linked to informed consent. It requires informed decision-making and consent when permanent procedures such as sterilisation are being performed. Informed consent is not merely saying “yes” to a procedure. Informed consent is a discussion and most importantly involves communication between a patient and a healthcare provider. In sterilizing clients without their informed consent, medical personnel involved will be violating the clients’ rights guaranteed and protected under that particular country’s constitution. It is clearly for the patient to decide whether he or she wishes to undergo an operation. Failing to warn the patient of the risks involved or possible alternatives to the procedure mean that the doctors had breached their duty to disclose and could be held liable under negligence principles. At the same time, coercive practices relating to family planning, including forced sterilization, violate women’s bodily integrity and autonomy.

6. Responding to forced sterilizations: Regional advocacy against coerced sterilization in Namibia and South Africa A range of different NGOs have launched advocacy strategies to deal with forced sterilizations. This includes:

The International Coalition of Women Living with HIV (ICW) is the only international network of women living with HIV/AIDS. It has members in 130 countries, and campaign for a world in which HIV positive women have respected and meaningful involvement at all levels, have full access to care and treatment and most of all enjoy rights, particularly sexual, reproductive and general health right (Robinson, 2007). The ICW led the first global consultation of people living with HIV/AIDS in 2007 to address their sexual and reproductive health and rights (ICW Global, 2009). A vision statement to guide advocacy, policy, legal, programmatic and funding priorities that respect sexual and reproductive health and rights and that underscores the need for health systems to do the same was adopted (ICW Global, 2009).

In 2008, ICW Namibia launched the forced sterilization campaign when 3 of the 30 participants of the ICW advocacy training project with young HIV positive women stated that they were sterilized without their informed consent (ICW, 2009). This alarming fact initiated a series of focus group discussions and interviews that in fact suggest that HIV positive women were being coerced or forced into sterilization by hospital staff in Namibia. The ICW realised that forced sterilization was part of a broader range of discriminations faced by HIV positive women in reproductive health services and particularly against positive women who are pregnant or desire children (ICW, 2009).

The ICW has partnered with the Legal Assistance Centre (LAC) and the Southern Africa Litigation Centre (SALC) to document and litigate the cases. On the 15th of July 2008, the ICW made a submission to the Deputy Minister of Health which highlighted that forced or coerced sterilization violated numerous rights under the Namibian constitution (Gatsi-Mallet, 2008). In addition to this, the ICW continues to engage in research and advocacy with partner organizations, particularly human rights organization, to raise awareness and to end coerced sterilization of women with HIV.

The AIDS & Rights Alliance for Southern Africa (ARASA) is an alliance of non-governmental organizations engaged in work on HIV and human rights in the SADC region. Its primary objective is to promote a human rights-based response to HIV/AIDS and TB in Southern Africa through capacity- building and advocacy (ARASA, 2009). On the issue of sterilization without consent, ARASA has taken a strong stance against the practice through fostering advocacy with partner organizations working in the field of sexual and reproductive health rights. In October 2008 ARASA convened more than 35 partners from 15 countries in the Southern Africa region at the Kopanong Conference Centre in Johannesburg to explore levels of access to sexual and reproductive health and HIV prevention services as well as key barriers to increased access to services for women in the region (ARASA SRH Rights Advocacy Workshop Report, 2008). Participants at this workshop prioritized the need to address the problem of sterilization without informed consent as top of the key sexual and reproductive issues that need to be addressed in the region. A follow up seminar was held in August 2009 at the same venue with the aim of developing of an advocacy framework and strategy, and building on partnerships to advance the advocacy of sexual health and reproductive rights in the region. Again, coerced sterilization was in the spot light and participants at this seminar committed themselves to rallying behind ICW Namibia and LAC Namibia to support the Namibian court cases in October and November 2009. Options to consider if the court cases failed were explored. Among them was taking the issue to the UN or the African Court.

ARASA has also designed posters and T-shirts with messages that denounce coerced sterilization of women living with HIV. During an interview with one of Namibia’s newspaper editors ARASA’s director, Michaela Clayton strongly condemned the alleged coerced sterilization of women living with HIV/AIDS at state hospitals in Namibia and in Southern Africa to prevent them from having more children, calling it "in human and unprofessional" (The Southern Times Newspaper, Windhoek, 13 July 2009).

In coalition with several other organisations, ARASA launched a public petition as part of a campaign, which aims to raise public awareness on the issue of forced sterilisation demanding redress for the affected women and calling for an end to this practice. A march by concerned citizens of Namibia and various civil society organisations in protest of this gross violation of human rights was also organised on the 20th of October 2009. This march coincided with the commencement of court proceedings in the litigation on behalf of six women seeking redress in the Namibian High Court. The cases were however delayed until 24 November 2009. A website [http://endforcedsterilisation.wordpress.com/] has been developed to keep partners updated on progress and ways in which they can support the campaign.

The Southern African Litigation Centre (SALC) is in Johannesburg, South Africa, and is designed to provide a focus on three principal areas: support for human rights cases; advice on Constitutional advocacy in the Southern African region; and training in human rights and rule of law issues. The centre, in providing training, mentoring and facilities, will thus promote the effective implementation of human rights in the region (SALC, 2009). In partnership with the Legal Assistance Centre and ICW Southern Africa, the SALC has documented cases of coerced sterilization of women living with HIV/AIDS in Namibia. SALC is litigating to raise the public profile of the issue as a way of providing redress for some of the victims. Through this they also hope to prevent other medical personnel from coercing sterilisation.

However in light of the fact that litigation can take years to conclude, SALC is using advocacy strategies in collaboration with the ICW. These includes holding workshops for young women living with HIV, providing safe spaces for women to speak about their experiences as well as inform them of their rights (Patel, 2009). This process has helped uncover additional cases of coerced sterilizations and in some instances been able to prevent coerced sterilizations from taking place by informing women of their rights (Patel, 2009). In addition to litigation and community education and mobilization, the SALC is working with relevant government agencies to investigate all claims of forced sterilization regardless of when they happened. The SALC is also assessing the possibility of a legislative advocacy strategy calling for the ratification of a legislative bill clearly laying out the requirements for obtaining informed consent in all cases of sterilization (SALC, 2009).

The Legal Assistance Centre (LAC) Namibia’s main objective is to protect the human rights of all Namibians by collectively striving to make the law accessible to those with the least access, through education, law reform, research, litigation, legal advice, representation and lobbying, with the ultimate aim of creating and maintaining a human rights culture in Namibia (LAC, 2009). The LAC in partnership with ICW and SALC is following up allegations by several Namibian HIV-positive women who claim they were either forced or coerced into being sterilized when they went to hospital to give birth.

The South Africa's Women's Legal Centre (WLC) has been established to advance women’s rights by conducting constitutional litigation on gender issues (WLC, 2009). On forced sterilization, WLC has documented 12 cases of South African women living with HIV who claim to have undergone what the health world calls "coerced sterilization” (Mail and Guardian Newspaper, 21 June 2009). WLC recognizes coerced sterilization as not only an unethical medical practice, but also a serious breach of human rights.

Other major international organizations committed to the promotion, protection and realization of fundamental rights and freedoms of women living with and affected by HIV and AIDS include: the International Federation of Gynecology and Obstetrics(FIGO), the Women’s Global Network for Reproductive Rights (WGNRR) and the Association for Women’s Rights in Development (AWID). FIGO, for example, has issued an informed consent guideline which emphasize that the process of informed choice must precede informed consent to surgical sterilization (Shaw, 2004). According to the guideline, no incentives should be given, or coercion applied, to promote or discourage any particular decision regarding sterilization.

The central message being send by these NGOs is that of condemning the sterilisation of women with HIV without their informed consent. They are calling an end of this practice and that governments be loyal to the commitments they have made through ratifying to conventions that protect human including women’s rights. The violation of any woman’s fundamental right to make free and informed decisions about her own body and health, particularly with regard to reproductive choices due to her positive HIV status is discrimination against people living with HIV. Thus NGOs involved in the regional advocacy campaign against forced sterilization have two major issues that need to be addressed, that is, to mark an end to this deliberate violation of HIV-positive women's sexual and reproductive health and rights and to end exclusion of women living with HIV from other social activities and intercourses.

Conclusion

Forced sterilization of women living with HIV is an act of unnecessary and dehumanizing violence which denies an individual's basic human right to bodily integrity and to bear children and which has adverse life-long effects on physical and mental health. The need to guarantee the human rights of women is still a pressing concern, as evidenced by violations of these rights through cases of coerced sterilization. The great deal of work that is being done by the ICW Namibia, the LAC and the SALC in addressing the matter in Namibia is highly commendable. They are proving that support for the reproductive rights of people, particularly women with HIV. Besides the Namibian cases, there is not a lot known about cases in other countries in the region, including those in South Africa. There is a need to gather enough evidence on other reported cases in the region and initiate a case, preferably with the African court of human rights based in Ghana. The problem could be regional, as no research has been done in the remaining countries on the extent of the problem. More research is therefore required to create a stronger basis for evidence driven advocacy.

Codes of conduct for medical practitioners have to be reviewed and taken seriously and medical associations can help in this regard. This involves following through with policy directives which mandate that women have full access to their medical records. Health care staff has to be adequately equipped with education and information about principles of informed consent so that they can provide family planning information in a non coercive manner. As noted by Anand et al (2009) in their policy document, “Ministries of health have a duty to challenge paternalistic stereotypes of women as incapable of making sound health choices”.

Publicising and openly denouncing coerced sterilisation presents an opportunity to reform laws, policies, and practices, and change the attitudes and behaviour of health care professionals and the health sector as a whole. It also serves as an opportunity to empower women about their sexual and reproductive health rights in general and their rights as patients concerning issues such as informed consent, which is critical in the fight against HIV and AIDS.

There is the need to set out a plan of action to ensure that governments and communities respect the human rights of women and girls with HIV and support them and their families in making informed choices about their bodies and their reproductive lives. The plan should include the development of accessible resources; best practice models for providing support to women, and a national reproductive rights network comprising women with HIV, service providers, policy makers and others. Stakeholders who commit to advocacy work against coerced sterilization should aim at coming up with a broader campaign that will influence people’s attitudes about women living with HIV. Women’s sexual and reproductive rights, which include the right to reproductive health and the right to reproductive self determination, are human rights which should be respected, protected and fulfilled by all states in accordance with their international obligations. In order to achieve a genuine partnership between health care providers and service users, a human rights approach that integrates sexual and reproductive rights is essential bearing in mind that being HIV positive does not remove an individual’s reproductive desires and intentions. The complementary role of human rights and public health programmes in promoting human wellbeing as reflected in a range of international human rights conventions and declarations should provide the basis for frameworks to analyze health and reproductive issues of women with HIV/AIDS. Strict guidelines, enforced by the courts, must be put in place to protect individuals of any age from coercive contraceptive practices, especially forced sterilization. Reference List

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