Coercive policies do not make for better health outcomes.
The authors admit that mandatory testing could prompt an 'eroding [of] the right to refuse testing in [other] situations'. Yet they seem reluctant to fully engage with this danger. The acts of testing and administering medication to an infant without its mother's consent are but a small step away from forcing all pregnant women to test for HIV, and if they test positive, to compel them to take nevirapine or AZT before they give birth. Indeed, some bioethicists are already making this argument. (7) But further dangers lurk on this slippery slope. Ignoring the mother's rights and autonomy in the name of acting 'in the best interests of the child' raises the spectre of a much more severe monitoring of pregnant women lest the infant suffer harm (e.g. ensuring that they do not smoke, use alcohol and drugs, or exercise too vigorously). Such 'monitoring' would erode decades of progress made in the field of women's reproductive health and rights. It would also take us back to an earlier era in which women were regarded as little more than conduits for healthy babies.
Although we agree that more culturally sensitive efforts are needed to better understand the reasons why women in such situations may decline testing, much of this is already known. There has been extensive social science research on stigma, denial and blame in the epidemic--and on the role that gender plays in the particular configurations of these collective responses. (8-11) We also know from studies of HIV disclosure, for example, that the diagnosis itself is still received by many with profound dread. Suicide ideation following a positive diagnosis is common. (12) But it remains the case that women, in particular, bear the brunt of this stigma: they are often blamed for bringing HIV into the home or into a relationship, they face the very real danger of being beaten by an abusive partner, abandoned, shunned, ejected from the home and rendered destitute. (13-15) These are not uncommon consequences of the abjection that HIV continues to signal for many people, and which makes an HIV diagnosis something to fear and avoid, both for the individual concerned and for the wider community in which they live. Notwithstanding the limited gains made in reducing stigma in recent years, we should not mandate proxy HIV testing for women unless these issues have been more fully addressed.
The woman in the case study cited above may be faced with further challenges. Her own health seems precarious and after giving birth, she might not have had the emotional or physical resources to cope with a positive HIV diagnosis, much less to deal with the implications of her child receiving antiretroviral prophylaxis. Under such circumstances, what chance does the health of the infant have? With no acknowledgement of the known relationship of infant survival to its mother's wellbeing and survival, the debate is reduced to a simplistic contest between mother and baby. Yet a newborn does not exist in a vacuum; the mother's health and wellbeing are central to efforts to improve infant health. (16-18) Furthermore, the paediatrician may have conflicting moral obligations between baby and mother, but the hospital itself has an obligation to both the mother and the baby. One cannot be ignored at the expense of the other.
This raises a further concern for us. The case study notes that 'the mother was not offered an HIV test during pregnancy as the clinic she attended did not have such services'. This suggests that the problems need to be addressed upstream, with a particular focus on prongs 1 and 2 of the World Health Organization prevention of mother-to-child transmission (PMTCT) strategy. (19) Thus the first points of intervention would be: helping women in high prevalence regions to assess their own risk of infection, empowering them with knowledge to protect themselves, preventing unintended pregnancy in women with HIV, and making safe abortion readily available. Then we would need to ensure that all antenatal clinics do have VCT services--and that the quality of counselling and follow-up support is high, so that more women choose to be tested during pregnancy and enter PMTCT programmes if necessary. Community-based interventions, in particular 'mother-to-mother' support groups or one-on-one counselling, are powerful and effective. (20,21) We suspect that the woman in the case study might have responded differently if she had been counselled by a peer who shared her language and cultural background, and who had perhaps been through similar experiences herself. This would have been preferable to being 'convinced' to test in a time of stress where informed consent could not be assured and thus was ignored by a paediatrician whose main concern was clearly the health of the infant. Moreover, consent is important not only from a human rights perspective but also from a medical point of view: when people's choices are disregarded and when their buy-in is not secured, treatment and follow-up may be compromised. Bringing a test case to court could potentially undermine precisely the purpose it is meant to serve, namely protecting the health of infants. It could also have longer-term public health consequences, since this kind of legal action could deter vulnerable women from seeking out antenatal care at all. The policy and legislative changes proposed by the authors, we argue, are premature if not completely unnecessary.
The authors posit that '[p]erhaps the epidemic could be reversed with more vigorous interventions ...'. We agree that the severity of the South African epidemic calls for firm and decisive intervention. But we should not forget that an estimated 85% of HIV in this country is transmitted through heterosexual intercourse. (4) Recall that the policy of mandatory newborn testing is intended to address the category of women who don't know their HIV status at time of giving birth yet refuse testing, both for themselves and for their infant. In turn, it is presumed that this policy would ultimately ensure that mother-to-child transmission is virtually eliminated. But in reality the numbers of women who fall into this category (of refusals) is likely to be very small. Indeed, there is evidence that with high-quality counselling, uptake of VCT among women in antenatal settings is very high. (22,23) In fact, this vital information is central to the debate--yet the authors make no mention of it. Why, then, the need for a measure as coercive as mandatory newborn testing, enforced by law and policy, when the overall impact of this intervention on the HIV epidemic is likely to be relatively negligible?
Finally, for the authors to invoke the argument about health care workers' conscience is to assume that decisions made from 'conscience' will, in every case, align with what is medically the best decision to make for the patient. But this surely cannot be the case. We have only to consider a comparable situation relating to the implementation of termination of pregnancy policy in South African public health facilities. Here, too, we find health workers acting on the grounds of 'conscience' and refusing to have any part in carrying out the procedure. But many of these health workers also refuse to arrange adequate counselling or referral for the women concerned. Acts of 'conscience' are admirable, indeed. But they are hardly neutral, objective or necessarily medically correct.
In conclusion, we regard this argument as a classic example of 'act first, think later'; a narrow, biomedical and legal solution to a complex human problem. We are a long way from ensuring quality services for HIV-positive women and protecting their rights to information, privacy and confidentiality. Our view is that women should not have to pay for the failures of primary HIV prevention and reproductive health services, nor should their rights be sacrificed because political commitment and leadership in the epidemic has been lacking. In short, more debate is needed--and we would urge that such debate involves a wide range of stakeholders: not only maternal and child health specialists and bioethicists, but also experts and advocates in the fields of women's reproductive health and rights, AIDS activists, civil society organisations, social scientists, and representatives of government. Most importantly of all, we need to hear the voices of ordinary women in South Africa who are actually confronted with such painful dilemmas every day.
Fiona Scorgie, BA Hons, MA, PhD
Gender AIDS Forum, Durban
Beth Ann Filiano, MPH, MPhil
Mailman School of Public Health, Columbia University and Gender AIDS Forum
Katharine Shapiro, PA, MPH
Consultant, New Delhi
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(13.) Dunkle KL, Jewkes RK, Brown HC, Gray GE, McIntryre JA, Harlow SD. Gender-based violence, relationship power, and risk of HIV infection in women attending antenatal clinics in South Africa. Lancet 2004; 363(9419): 1415-1421.
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(19.) WHO. Strategic approaches to the prevention of HIV infection in infants: report of a WHO meeting, Morges, Switzerland, 20-22 March 2002. http://www.who. int/hiv/pub/mtct/en/StrategicApproachesE.pdf (accessed 5 September 2007).
(20.) mothers2mothers. http://www.m2m.org/ (accessed 14 April 2008).
(21.) Coetzee D, Hilderbrand K, Boulle A, Draper B, Abdullah F, Goemaere E. Effectiveness of the first district-wide programme for the prevention of mother-to-child transmission of HIV in South Africa. Bull World Health Organ 2005; 83(7): 489-494.
(22.) Centers for Disease Control and Prevention. Introduction of routine HIV testing in prenatal care--Botswana, 2004. MMWR Morb Mortal Wkly Rep 2004; 53(46): 1083-1086.
(23.) Urban M, Chersich M. Acceptability and utilisation of voluntary HIV testing and nevirapine to reduce mother-to-child transmission of HIV-1 integrated into routine clinical care. S Afr Med J 2004; 94(5): 362-366.
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|Author:||Scorgie, Fiona; Filiano, Beth Ann; Shapiro, Katharine|
|Publication:||Southern African Journal of HIV Medicine|
|Date:||Sep 22, 2008|
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