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Coercive policies do not make for better health outcomes.

As it stands, this argument for mandatory newborn testing unnecessarily pits the interest of mother and child against each other and creates conflict where there should be collaboration. Our main concern is that it fails to acknowledge the consequences of the fact that newborn testing amounts to 'proxy testing' of the mother--in this case, without her consent. Not only do the paediatrician's actions violate the mother's right (and indeed legal obligation) to make medical decisions for her minor infant, they also violate her constitutional rights to privacy, reproductive choice and bodily and psychological integrity. (1) The policy change that Chersich and Richter are urging would disempower and undermine women's agency on a number of levels. Further, proxy testing of the mother in this way is a violation of fundamental rights that are now recognised and widely accepted as necessary components of ethical HIV diagnosis and treatment. These include the right to informed consent and not to be tested against one's will. Such rights are enshrined in both national and international policy, guidelines and legislation (2,3) and--perhaps most importantly--the South African HIV & AIDS and STI National Strategic Plan 2007-2011. (4) They are also recognised internationally as good public health practice by WHO and UNAIDS. (5,6)

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

REFERENCES

(1.) South African Constitution, 1996. Chapter 2 (Bill of Rights), sub-sections 12 and 14.

(2.) Health Professions Council of South Africa. Guidelines for the management of patients with HIV infection or AIDS; 2002. http://www.hpcsa.co.za/hpcsa/ UserFiles/File/Booklets/Booklet%208%20HIV.pdf (accessed 14 April 2008).

(3.) South African Department of Health. Draft national policy on testing for HIV; 1990. http://www.doh.gov.za/aids/docs/policy.html (accessed 14 April 2008).

(4.) The HIV & AIDS and STI strategic plan for South Africa (NSP 2007-2011); 2007. http://70.84.171.10/~etools/doh/strat-plan/hiv-aids1.pdf (accessed 14 April 2008).

(5.) Jurgens R. Increasing Access to HIV Testing and Counseling While Respecting Human Hights. Background paper. New York: Public Health Program of the Open Society Institute, 2007.

(6.) UNAIDS, WHO. UNAIDS/WHO Policy Statement on HIV Testing; 2004. http://www. who.int/hiv/pub/vct/en/hivtestingpolicy04.pdf (accessed 14 April 2008).

(7.) Schuklenk U, Kleinsmidt A. Rethinking mandatory HIV testing during pregnancy in areas with high HIV prevalence rates: ethical and policy issues. Am J Public Health 2007; 97(7): 1179-1183.

(8.) Campbell C, Nair Y, Maimane S. AIDS, stigma, sexual moralities and the policing of women and youth in South Africa. Feminist Review 2006; 83: 132-138.

(9.) Delius P, Glaser C. Sex, disease and stigma in South Africa: historical perspectives. African Journal of AIDS Research 2005; 4(1): 29-36.

(10.) Lawless S, Kippax S, Crawford J. Dirty, diseased and undeserving: the positioning of HIV positive women. Soc Sci Med Nov 1996; 43(9): 1371-1377.

(11.) Skinner D, Mfecane S. Stigma, discrimination and the implications for people living with HIV/AIDS in South Africa. Journal of Social Aspects of HIV/AIDS 2004; 1(3): 156-164.

(12.) Squire C. HIV in South Africa: Talking about 'the big thing'. London and New York: Routledge, 2007.

(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.

(14.) Dunkle KL, Jewkes RK, Brown HC, et al. Prevalence and patterns of gender-based violence and revictimization among women attending antenatal clinics in Soweto, South Africa. Am J Epidemiol 2004; 160(3): 230-239.

(15.) Vetten L, Bhana K. Violence, vengeance and gender. A preliminary investigation into the links between violence against women and HIV/AIDS in South Africa. Johannesburg: Centre for the Study of Violence and Reconciliation, 2001.

(16.) Nakiyingi JS, Bracher M, Whitworth JA, et al. Child survival in relation to mother's HIV infection and survival: evidence from a Ugandan cohort study. Aids 2003; 17(12): 1827-1834.

(17.) Newell ML, Brahmbhatt H, Ghys PD. Child mortality and HIV infection in Africa: a review. Aids 2004; 18: Suppl 2, S27-34.

(18.) Newell ML, Coovadia H, Cortina-Borja M, Rollins N, Gaillard P, Dabis F. Mortality of infected and uninfected infants born to HIV-infected mothers in Africa: a pooled analysis. Lancet 2004; 364: 1236-1243.

(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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Title Annotation:REBUTTAL
Author:Scorgie, Fiona; Filiano, Beth Ann; Shapiro, Katharine
Publication:Southern African Journal of HIV Medicine
Date:Sep 22, 2008
Words:2248
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