HIV testing during pregnancy: Human Rights for Women?


This should be changed, because it may be considered abuse. You are abused because you are being tested by force and then you are being abused because you are HIV positive…and you are not prepared at all for  these things, you are not prepared for this…

A joint research project examining women's experiences of provider-initiated HIV testing during pregnancy was carried out by the AIDS Legal Network (ALN), Just Associates (JASS), and Justice and Women (JAW), three South African-based human rights organisations, in 2010. The study is based on narratives of women who have experienced HIV testing during pregnancy in KwaZulu Natal and the Western Cape between 2007 and 2009, and focuses on women's experiences of consent, counselling, and confidentiality; the impact of their HIV status on their lives; and how women themselves would like to see HIV testing services in the future.

The scale-up of HIV testing in South Africa

South Africa introduced new HIV testing policy guidelines in 2010 that shifts the approach from largely voluntary counselling and testing to one that is 'provider-initiated'. This means that HIV testing is now routinely offered to persons attending public health services, and an individual needs to actively refuse to be tested for HIV, instead of voluntarily seeking a test and/or actively agreeing to a test. These changes to the HIV testing approach also coincides with a major campaign to mobilise individuals to test for HIV.

Provider-initiated HIV testing has been critiqued by human rights advocates for a long time on many grounds, including that it fails to take into account the unequal and gendered context of society in which HIV testing occurs, as well as the high levels of prevailing HIV-related stigma, discrimination and other violations of rights. It also fails to acknowledge the inherent unequal power relationship between healthcare providers and healthcare users; the very same relationship in which an HIV test is ‘offered’ and ‘consent’ is given.

Notwithstanding the need to increase the access to and uptake of HIV testing, the scale-up of HIV testing is also often linked to a number of human rights concerns and challenges, especially if this scale-up is utilising a provider-initiated approach. These concerns are mainly centred around the extent to which human rights, including the right to make an informed decision as to whether or not to test for HIV, can be protected in the context of provider-initiated HIV testing.

As women are the ones mostly accessing health services, it is widely acknowledged that more women than men will test for HIV and thus, women are more likely to experience rights abuses in the process of HIV testing, and to face discrimination, violence and ostracism when disclosing their HIV status.

Testing for HIV therefore places many women at greater risk of stigma, discrimination and other rights violations. HIV testing during pregnancy adds another layer of risks, as the focus and pressure to test is largely on preventing vertical transmission to the infant, and not necessarily on the rights of the individual to access information, to make an informed decision, to autonomy and to bodily integrity, as well as to privacy and non-discrimination.

The main findings

The majority of women participating in the study experienced the process of HIV counselling and testing as humiliating, disrespectful and abusive.

Although the HIV testing policy framework provides for HIV testing to be voluntary, free from coercion, and allows for the option to refuse testing, women’s experiences show that in reality there seems to be little to no option for pregnant women to voluntarily decide whether or not to test for HIV; to have access to adequate information and time to make such a decision; and to make an informed choice free of coercion and fear of repercussions.

A dominant theme emerging from the study was the overwhelming emphasis, and thus pressure on women, to test for HIV, due to pregnancy. In the context of post-test counselling, the responses indicate an undue emphasis on discouraging positive women from having more children.

The experiences of many women indicated that their right to confidentiality, both during the testing process and on receiving their test results, was severely compromised and violated. The majority of respondents spoke about being tested with others present, of doors left open, staff interruptions and open discussions about women’s HIV test results.

Women shared experiences of pressure placed on them by both healthcare providers and from public opinion to disclose their HIV status to partners and families, and how often this led to a situation of being blamed, stigmatised, violated and abused within relationships, families and communities – with little to no counselling on how to disclose nor referrals and/or access to support or services in this regard.

The way forward

The majority of women participating in the study called for HIV testing services that are confidential and where the right to privacy is protected, as well as for good quality counselling that respects individual choice and affords dignity, that is informative and allows for time to think and reflect during the process. The right to consent must be upheld and there should be no forced HIV testing.

Recommendations arising from the study

Addressing gender and power imbalances are crucial towards ensuring free and informed decision making in the context of HIV testing, without coercion and/or the fear of repercussions. HIV testing policies must be reviewed and/or developed so as to ensure that they do not explicitly or implicitly target women for HIV testing, and that the three Cs central to HIV testing, namely, consent, counselling and confidentiality, must be at the core of both testing policy and implementation.

Positive women must be central with regards to participation in policy design and implementation, including HIV testing approaches, counselling and support programmes. Service users and service providers must know and understand human rights in the context of HIV testing, and accessible redress mechanisms in relation to human rights violations must be established and monitored by service users, particularly positive women. - (Health24, December 2010)

Source: AIDS Legal Network

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