Consent is compulsory: Informed consent in HIV testing of pregnant women in India
thesisposted on 31.01.2017 by Nataraj, Shyamala
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Testing pregnant women for HIV in order to prevent transmission from infected women to infants is increasingly advocated as a routine part of antenatal care, and the HIV test is viewed on par with other antenatal tests. Requirements for informed consent to the test have been relaxed to promote testing and treatment to reduce the risk of transmission from infected women to infants and for their own health. Women have the right to refuse the test, and this right is viewed as adequate to protect them from potential stigma and discrimination associated with a positive result. However unlike other antenatal tests, testing positive for HIV puts women at significant risk of stigma and discrimination, especially if they are tested and diagnosed before their male partners as is often the case. Furthermore, there is a large gap between the numbers of women diagnosed with HIV within the programme to prevent parent-to-child transmission (PPTCT) and access to effective antiretroviral treatment to reduce risk of transmission to infants and for their own health. Acknowledging these risks, UNAIDS/WHO (2007), and the Indian government (NACO 2007) recommend promoting the autonomy of women in decision-making about the test, and testing women only after obtaining their informed and voluntary consent to the test. In this thesis, I draw upon the capabilities approach to examine the extent to which policies by UN agencies and by the Government of India, and the practice of obtaining informed in antenatal care facilities in Tamil Nadu, India, promote women‘s ability to make an informed and voluntary decision about the test. Data for the thesis were drawn from research conducted between 2006 and 2010. Both qualitative and quantitative methods were used. Qualitative methods included content analysis of policy recommendations for informed consent to an antenatal HIV test, and of guidelines to prevent parent-to-child transmission; and an ethnographic study among stakeholders in India between August 2007 and July 2008. A total of 28 focus group discussions, 56 in-depth interviews, four case studies, and 70 semi-structured observations were conducted among women accessing antenatal care at selected health facilities, husbands, community members, and heads of non-government organizations, healthcare providers, and state and national level policy makers the quantitative method used to collect data was a questionnaire survey among 380 women who accessed antenatal care at selected healthcare facilities between May 2007 and January 2008. Results showed that global and Indian policy recommendations for an antenatal test to prevent parent-to-child transmission targetted women to the virtual exclusion of male partners, and severely restricted women‘s capabilities related to autonomous decision-making about the test. Furthermore, the PPTCT programme focused almost entirely on testing and treatment and ignored components related to primary prevention for women, and prevention of unintended pregnancies among infected women. A large proportion of pregnant women who tested positive, both globally and in India, did not receive antiretroviral prophylaxis to reduce the risk of transmission to the infant or antiretroviral treatment for their own heath. In India, infected women who did receive prophylactic treatment received the sub-optimal Nevirapine regimen that was less than 50% in the absence of exclusive breast feeding. The limitations in policy were exacerbated in practice. Although test acceptance among women was 100% test, this was not accompanied by their informed consent of women in the overwhelmingly vast majority of cases. In general, both policy makers and healthcare providers dismissed women‘s ability to make an informed and voluntary decision about the test, and questioned the feasibility of obtaining an informed consent in Indian settings. In contrast, women demonstrated their ability to make informed and pragmatic choices by identifying alternate approaches to the test that would help to protect infants from the risk of transmission, while also protecting infected women from potential stigma an discrimination, such as couple counselling and testing, and confidentiality of a positive test result. Furthermore, healthcare providers uniformly constructed the test as a compulsory requirement of antenatal care, withheld pre-test information about potential stigma and discrimination and about the right of the woman to refuse the test, and implicitly threatened to withhold access to ongoing antenatal care if women did not complete the test. They justified these actions as necessary to protect infants from the risk of acquiring the infection from infected mothers during pregnancy, delivery and breastfeeding, as well as to protect themselves from the risk of accidental exposure while providing care. In contrast, they did not discuss how women could protect themselves from HIV, even though all women respondents who tested positive reported acquiring HIV from infected husbands. Based on these findings, I suggest that promoting women‘s autonomy in antenatal testing, and in the broader context of HIV prevention and care in resource constrained settings such as India, is necessary both to protect their rights and to help them cope with their vulnerabilities to HIV and its consequences