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Social science research on AIDSin Africa: Questions of content,methodology and ethics (Recherchesdans les Sciences Humaines surle SIDA en Afrique: Problèmes decontenu, de méthodologie et dedéontologie)Carolyn Baylies a & Janet Bujra ba University of Leedsb University of Bradford , UKPublished online: 24 Feb 2007.

To cite this article: Carolyn Baylies & Janet Bujra (1997) Social science research on AIDS inAfrica: Questions of content, methodology and ethics (Recherches dans les Sciences Humainessur le SIDA en Afrique: Problèmes de contenu, de méthodologie et de déontologie), Review ofAfrican Political Economy, 24:73, 380-388, DOI: 10.1080/03056249708704270

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A B Zack-Williams is Reader in Sociol-ogy at the University of Central Lanca-shire.

BibliographyFirst R (1972), The Barrel of a Gun: Political Powerand the Coup d'Etat, Penguin African Library,Penguin Books.

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Zack-Williams A (1985), 'Sierra Leone: ThePolitics of Decline and The Decline of Politics',P. K. Mitchell (ed), Sierra Leone Studies at theCentre of West African Studies at the University ofBirmingham (conference proceedings); (1997),'Contesting The State in Sierra Leone: Youthand Social Movements', mimeo.

Zack-Williams A & S Riley (1993), 'SierraLeone: The Coup and its Consequences',ROAPE, No. 56, March, 91-97.

Social Science Research on AIDS in Africa: Questions ofContent, Methodology and Ethics (Recherches dans lesSciences Humaines sur le SIDA en Afrique: Problèmes deContenu, de Méthodologie et de Déontologie)Carolyn Baylies & Janet Bujra

Un congres international sur les sciences humaines et le SIDA en Afrique, qui a eu lieu a SaliPortudal au Senegal en novembre 1996, a servi de tribune importante, reunissant deschercheurs et des militants dans le domaine du SIDA des mondes anglophone et francophone.Organisee conjointement par le Codesria (Institut pour le developpement des recherches ensciences humaines en Afrique), le CNLS (Comite Nationale pour la Prevention du SIDA auSenegal) et I'Ostrom (I Institut Frangais de Recherche Scientifique sur le Developpement et laCooperation), cette reunion a traite d'un eventail etendu de sujets faisant appel auxexperiences vecues dans differents pays.Depuis le milieu des annees quatre-vingts, quand on aadmis, pour la premiere fois, la gravite de I'epidemie du SIDA, un certain nombre deconferences, tant internationales que regionales, ont eu lieu afin de comparer les resultats desrecherches et de discuter des dispositifs de prevention et de soins. Avec le temps, la dominanceinitiale exercee par la medecine et le discours medical dans le domaine du VIH/SIDA adiminue. Le defi que nous presente le VIH/SIDA a de multiples facettes et doit etre aborded'une maniere pluridisciplinaire. line demarche exclusivement medicale ne peut le trailerqu'imparfaitement. Les possibility de traitement dependent des ressources existantes et de larichesse de la societe aussi Men que de la richesse de Vindividu. La prevention doit tenir comptedu niveau de connaissance et du comportement social, ce qui est rendu plus complexe par lesrelations entre les sexes et la pauvrete. Bien que Von admette, de plus en plus, que I'epidemieest ancree dans le tissu social des populations atteintes et qu'elle a des consequences sociales etpolitiques aussi bien que medicales, neanmoins, il existe toujours un besoin de faire valoirVimportance de la recherche dans les sciences humaines sur la propagation, les effets et laprevention contre le VIH/SIDA. La contribution du congres de Sali Portudal, a cet egard, s'estmontree exemplaire.

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Briefing: Social Science Research on AIDS in Africa 381

An international symposium on the'Social Sciences and AIDS in Africa',held in Sali Portudal, Senegal, in No-vember 1996, served as an importantforum for bringing together English andFrench speaking researchers and AIDSactivists. Jointly organised by Codesria(Council for the Development of SocialScience Research in Africa), CNLS (theNational Committee for the Preventionof AIDS in Senegal) and Ostrom (TheFrench Institute of Scientific Researchfor Development and Cooperation), itcovered a wide range of topics, withreference to a broad spectrum of indi-vidual country experience.

Since the mid-1980s, when the severity ofthe AIDS epidemic was first acknow-ledged, there have been a number ofinternational as well as regionalconferences devoted to the exchange ofresearch findings and discussion ofprevention and care initiatives. An initialdominance by medicine and medicaldiscourse in relation to HIV/AIDS hasgradually lessened over time. HIV/AIDSpresents challenges as a multi-dimensional,multi-sectoral problem, which can bedealt with only imperfectly through anexclusively medical approach. Treatmentpossibilities are fundamentally affectedby existing resources and societal as wellas individual wealth. Prevention musttake account of knowledge and socialbehaviour, complicated by genderrelations and poverty. While there hasbeen increasing appreciation that theepidemic is embedded in the social fabricof affected populations and that itsramifications are as much economic andpolitical as medical, the need for assertingthe importance of social science researchinto the spread, impact and means ofprotection of HIV/AIDS remains apressing one. The Sali Portudal sym-posium made an effective contribution inthis regard.

HIV/AIDS is a health and social problemof international dimensions and a phe-nomenon peculiarly of our age. Its spread

to all parts of the world epitomisesprocesses of globalisation and the impactof modern technology, particularly asregards contemporary forms of transpor-tation and communication. Yet at thesame time its impact is particularly se-vere in some of the poorest societies ofthe world, especially those on the Africancontinent. Close to two-thirds of thosecurrently living with HIV/AIDS are esti-mated to be in sub-Saharan Africa. Over-all prevalence in this region, estimated at5.6%, is far higher than elsewhere, con-trasting with 1.7% in the Caribbean, .6%in South and South East Asia and .3% inNorth America, Western Europe, Aus-tralia and New Zealand (http:/ /gpawww.who.ch; 16 July 97). Given apredominant pattern of heterosexualtransmission in sub-Saharan Africa, thenumber of infected men and women isbroadly equivalent; recently, however,women have accounted for over half ofall new infections, reflecting greater physi-ological and social vulnerability. Motherto child transmission has resulted in alarge number of paediatric cases of HIVinfection. Increasingly, communities arealso having to cope with a growingnumber of AIDS orphans who, evenwhen absorbed within extended familynetworks, often suffer deprivation anddisadvantage, with the psychologicaldamage which they incur barely ac-knowledged and even less frequentlyaddressed.

The spread of HIV is associated with highlevels of geographical mobility (and - forsome - multiple sexual partners), and itsincidence maybe particularly high amongmigrants, urban dwellers and those withhigher levels of education and income.These may be among the most highlyskilled and highly productive membersof society, in the prime of their lives. ButAIDS is also a disease of poverty, withvulnerability increased by virtue of poornutrition and inadequate shelter. Theproblems of coping with AIDS are alsoexacerbated by national poverty and thelimited and inadequate social services

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and overstretched and under-resourcedhealth facilities which characterise lowincome and indebted countries. Care inthe home or the community is increas-ingly advocated, in part because of thelimited ability - as well as restrictedcapacity, given resource constraints - ofhealth institutions to offer more thanpalliative care. But this places increasingburdens on some of those least able tocope.

Most African nations where HIV/AIDShas had serious impact have nationalAIDS offices which coordinate efforts,initiate new programmes, and promotecare and prevention. Most have beenassisted by the Global Programme onAIDS (now reorganised under UNAIDS)and thus operate under and promote asimilar set of guidelines. A number ofNGOs in the AIDS field - such as theSociety for Women and AIDS - haveattempted to share experience acrossnational boundaries. Even so, the prob-lem of limited resources means that thistransnational sharing of knowledge andexperience is less common than manywould desire and than the gravity of thesituation would dictate. This was evidentin our own research on gender aspects ofthe AIDS epidemic (ESRC R00235221),carried out with colleagues in Zambiaand Tanzania. A workshop held in Dar esSalaam in August 1996, at the end of theresearch period, brought home the reali-sation of how little activists in the AIDSfield in Tanzania knew of what theircounterparts in Zambia were doing. Aconcern to bridge this relative gap incross national communication had been adefining feature of our own work. Asimilar concern, although on a granderscale, characterised the planning of theInternational Symposium on the SocialSciences and AIDS in Africa. If resourcedifficulties impede the sharing of knowl-edge and experience between Zambiaand Tanzania, these are all the moreapparent as between English and Frenchspeaking African nations. Hence the SaliPortugal Symposium was an event of

some importance.

Given organisational arrangements forthe symposium, most papers were inFrench and related to Francophone Af-rica. However, a contingent fromAnglophone Africa as well as Englishspeaking researchers from the Northwere also present. The symposium wasorganised around a number of key themes:1) social, political and cultural constructsrelating to AIDS, 2) models and projec-tions relating to the spread of AIDS, 3)issues of prevention in relationship tosocial practices, living conditions andvulnerable groups, 4) differing modes ofassistance: actors and institutions, and 5)AIDS, medicine and the social sciences:scientific justification and ethical issues.In addition round table discussions wereconducted on AIDS in distressed situa-tions; assistance and associations of HIVinfected people and institutional andnon-institutional actors in national HIVcontrol programmes. Stretching over fivedays, including both plenary sessionsand additional workshops, opportunitywas afforded for airing a wide range ofissues.

This account can touch only briefly onsome of the issues raised in the sympo-sium. It will highlight several of the moreprominent and recurrent themes, includ-ing 1) the need for social science researchinto AIDS to reconsider and re-evaluateits methodologies and its role in relationto intervention, 2) the variety of dis-courses through which AIDS is articu-lated and understood and 3) ethicalquestions relating to confidentiality anddisclosure and following from interna-tional disparities in income and access toresources.

Need for More and Better SocialScience Research on HIV/AIDS

An emphasis both on the need for moresocial science research in the field ofAIDS in the African context and forcritical evaluation of that research carried

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out to date, with a view to strengtheningits impact and usefulness, underlay andinformed the proceedings of the confer-ence. A paper in an early plenary session(Brunet-Jailly) noted the impact of re-ports by the World Bank and the WHO onthinking about medical interventions inthe broad area of public health, which aretypically couched in an analysis of rela-tive costs and benefits. While acknowl-edging the increasing sophistication ofeconomic models and the need to beimaginative in their application to Afri-can settings, caution was also expressedabout the limits of their utility. Thequestion crying out for further analysis, itwas suggested, concerns not so muchfurther refinement of these models, but,rather, identification of the sorts of inter-ventions which can effect behaviouralchange. Even in terms of questions ofeconomic costs and 'efficiency', knowl-edge is still lacking as regards whether itis more efficient, for example, to focus onsome groups in the population more thanothers.

Suggesting a broad framework for socialscience research on AIDS in the Africancontext, another paper (Painter) focusedon a range of needs: 1) getting the rightmessage to the right people in the rightsituations (that is, ensuring sensitivity tothe social relations which affect vulner-ability and possibilities for change and tothe discourses which are meaningful toparticular groups), 2) ensuring a muchstronger link between research and ac-tion, with particular attention to the needfor transnational approaches, given themovement of people across borders, 3)working more effectively with commu-nity based organisations and 4) looking atthe socio-economic context within whichhigh risk behaviour occurs and conse-quent implications for effective interven-tion. Our own research, having aspired toaddress some of these, has convinced usof the particular importance of linkingresearch to action through methodolo-gies which engage those at communitylevel and are receptive to the specificities

of particular communities (Baylies andBujra).

The range of papers presented at thesymposium suggested that policy, actionand intervention are best grounded inresearch and that social science researchis crucial and can play a significant partin transforming the suffering of thosewith HIV/AIDS. For Dedy, whose paperwas on the Ivory Coast, the researchercan be an advocate. For Seidel, writing onresearch conducted in South Africa, theemphasis was on creating a space fordialogue 'in which the researcher doesnot disappear'.

Attention needs to be given not just to theposition of the researcher and the wayresearch may inform policy by bringingforward voices otherwise silent or weak,but also to the methodology employed. Arange of methods were drawn on in theresearch reported on at the symposium,from conventional survey methodologyand archival research through life historywork, the interviewing of key informantsand focus groups to an innovative use ofstory telling. What was sometimes miss-ing, however, was critical reflection onthe relationship between the kind ofmethods used and the role of the datacollected in addressing the issue of AIDS,most specifically as regards what needsto be done. For example, a survey ques-tionnaire is primarily a device for record-ing the views and accounts of a set ofindividuals. But typically it does notmake provision for the challenging ofthose views of juxtaposing them againstthe accounts of other individuals - exceptat another time and place, by the re-searcher. A focus group, by contrast,serves simultaneously as a means ofcollecting data and of bringing peopletogether, allowing them collectively tolearn from or argue with one another.Sometimes it can constitute a form ofcollective counselling or awareness rais-ing. The challenging and the calling toaccount is done by people themselves.No methodology is above criticism, and a

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sustained process of reflection is neededto improve and refine research methodol-ogy. But what needs to be recognised isthat the choice of research methods isrelevant to addressing the practical issuespresented by AIDS as well as to datacollection.

Discourses on AIDSA number of papers focused on thevariety of discourses through which HIV/AIDS is understood, whether by practi-tioners, those infected or the generalpublic. Among these discourses are reli-gious explanations for the sufferingcaused by AIDS, including explanationsemanating from orthodox Christianity,from evangelistic sectors, from Islam orfrom indigenous belief systems: witch-craft, voodoo, traditional medicine, etc.In some cases (Gruenais and Tonda),scepticism was expressed about the con-tribution which actors who mobilise thesebelief systems can make to the struggleagainst AIDS, although the frequencywith which religious beliefs are drawninto dealing with AIDS was also ac-knowledged, given that it defies simplebio-medical solutions. On the other hand,two papers dealing with the absence orcollapse of family or community supportfor women with AIDS, respectively in theIvory Coast and Rwanda (Hassoun andMuhongayire), pointed to the positiverole which churches can play as a refugewhere disclosure meets with compassionand spiritual comfort, allowing womento come to terms with their illness andmeet others similarly afflicted.

Another way of looking at this same kindof material was illustrated by papers onthe Ivory Coast (Vidal) and Saint Martinin the Caribbean (Benoit), where beliefsand practices were perceived to offerchoices to individuals caught up in thetragic events of AIDS infection. Individu-als may negotiate the experience throughcreatively drawing on a repertoire ofpossible diagnoses and courses of actionin order to arrive at a perception which

serves their own interests, allows them tolive with their knowledge, to lay blamerather than accept blame and to avoidstigma. Appropriating the diagnosis ofwitchcraft is one example of such astrategy, and in this sense it has to be seenin a more positive light than AIDS workusually allots to it.

Compared to the discourse of socialscience, what is characteristic of all theseknowledge claims is the 'moral diagno-sis' of AIDS, which is variously embod-ied in religious precepts, in the languageof traditionalism, or in social construc-tions of those with AIDS as the 'other'. Inevery case, AIDS is seen as deservedpunishment for transgression of one kindor another. The tragedy is that in order toavoid this moral stigma, many will denythemselves the possibility of treatment,care, human comfort or community sup-port. Where medical personnel draw onthis same repertoire of moral assump-tions, they may transmit or reinforcemoral messages in the course of deliver-ing test results - or in refraining fromconfirming diagnosis.

Questions of Ethics & SocialResearch

Moving from public opinion or religiousdiscourse to medical practice and publicpolicy raises questions of human rightsand ethical considerations. The organis-ers of the symposium created space forconsideration of ethical issues, but par-ticipants pressed for its expansion and,more informally, discussion turned re-peatedly in this direction, with referenceto the Dakar Declaration, produced in1994 by the African Network on Ethics,Law and HIV, and consideration of theneed for a universal ethics and globalcriteria of social justice in respect ofAIDS.

One central question concerned confiden-tiality/disclosure. Protocols in manycountries specify the principle of confi-dentiality as a means of respecting the

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rights of the individual. Yet the possibil-ity of transmission to trusting partners,complicated by asymmetries of powerinherent in gender relations, and thepsychological cost of disclosure make forpronounced ethical dilemmas in the caseof AIDS. Will respect for confidentialitymean that 'innocents' are put at risk?Does disclosure mean that some will beostracized, disowned and discarded?Should confidentiality always be seen interms of the individual, or might thisusage involve the imposition of 'western'notions on cultures based on rather dif-ferent ethical assumptions. The notion ofshared confidentiality was introducedinto the discussion, but accompanied bythe cautionary statement that its advo-cacy should not imply that it is the doctorwho has the right to decide when andwith whom confidentiality should beshared, but, rather, the infected indi-vidual. Moreover, it was emphasised thatfor shared confidentiality to have a chanceof 'success' there must also be supportfrom carers and counsellors through anenabling and non-judgmental environ-ment.

It was evident from discussion of re-ported research and ongoing programmesof medical care, however, that doctors doinvolve themselves in decisions aboutdisclosure. This was illustrated by apaper (Mselatti) describing a project inwhich women attending ante natal clinicswere offered HIV tests, with a view toproviding a medical regime (AZT) capa-ble of reducing the probability of trans-mission of the virus from mother to childwhere women were found to be positive.Among ethical questions emerging herewas to whom there should be routinedisclosure, should tests be positive. Inthis case the decision taken was that thereshould be no disclosure by doctors to awoman's husband or male partner. Anapparent judgment that the risk to thewelfare of women (and to their unbornand living children) following from suchdisclosure should have primacy over therisk of transmission to partners was

based on the view that the context ofdisclosure is itself gendered and maythus have different ramifications forwomen than for men. Indeed in thisproject screening was offered free ofcharge, because it was felt that a fee mightentail a woman having to ask her hus-band for cash, at the very outset jeopard-ising confidentiality. Reference was madeby another panel member (Soyinka) tothe findings of a study on the feasibility ofpartner identification, which indicatedthat although a high proportion of maleswanted to know whether their spousewas positive, a similar proportion did notwish their spouse to know if they wereinfected. He commented that in his ownexperience as a medical doctor in Nigeriahe had not come across a single male whohad agreed to tell his spouse of hispositive status - even after counselling.

Further ethical issues follow not so muchfrom differential power relations betweensexual partners as from differential avail-ability of care and treatment resources indifferent parts of the world. Drug treat-ments for those with HIV infection andAIDS are undergoing constant refine-ment and in the most recent phase ofmedical research experimentation with acocktail of drugs has excited consider-able, if still cautious, optimism.

A watershed of sorts was marked by theannouncement at the 11th InternationalConference on AIDS, in Vancouver, in thesummer of 1996, of research results with acombination of three drugs, sometimesreferred to as triple therapy which ap-peared to promise much greater longev-ity of those who are infected, alleviatingsymptoms by reducing the presence ofthe virus within the body, so that in somecases it is scarcely detectable. Such treat-ments have the capacity to transformAIDS from an automatic death sentenceto something closer akin to a chronicillness. If not constituting a cure, theyoffer hope and more years of relativehealth to those infected. In some quartersthis has led to a transformation in the way

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AIDS is understood and experienced,leading some within the gay communityof the north to speak of the end of 'plague'and of a 'seige mentality' (Sullivan, 1997).But, replicating differentials in opportu-nity and quality of life along other dimen-sions, access to new treatments is highlyinequitable across nations and amonggroups within nations. The point wasraised early on during the symposium ina paper which detailed the estimatedcosts for medical treatment in developingcountries associated with different condi-tions, such as TB, polio or HIV/AIDS.The estimated cost per individual peryear for triple therapy has been put at$20,000, far, far higher than that oftreating tetanus, or polio or river blind-ness, and considerably more than treat-ment with AZT alone, which is itselfseldom available in developing coun-tries. The analysis of comparative cost ofmedical treatment for different condi-tions, combined with evaluation aboutrelative benefits in productive yearsgained, leads some to conclusions aboutthe impracticality and impossibility ofoffering costly treatments to the ordinarycitizens of poor countries who have themisfortune to suffer infection.

Indeed as noted in the article that follows,reprinted from the Observer, in develop-ing countries the new drug regimes forHIV/AIDS may be only available tothose volunteering to participate in drugtrials, and then only for the duration ofthe trial. Bald statements of economicreasoning about potential recipients ofnew drug therapies have particularlydiscordant resonance when made beforean audience in Africa, deeply concernedabout the crisis of AIDS, and includingthose living with HIV and AIDS. In thesymposium, questions were immediatelyraised by about the validity of assump-tions underlying such reasoning regard-ing relative quality of life - or perhapseven the relative value of lives - indifferent regions of the globe.

At a later point in the proceedings, a briefcommentary was given about how agree-ment was reached in France to make thetriple therapy available to all local resi-dents as a matter of right, rather than asthe fortunate beneficiaries of an arbitraryrationing formula. This was presented asevidence of how, with political will,national policy can respond in a wayrespecting human rights. Yet again thecomment sat awkwardly in the context ofAIDS in Africa, where no amount ofpolitical will of an individual nation canindependently create a situation wheretriple therapy or other innovative drugtreatments can be made practically avail-able to all who could benefit from them.As graphically conveyed by the title of anarticle which appeared in the CommercialFarmer, published in Zambia, in August1996: 'The good News: new drug therapyreverses the symptoms of AIDS; the BadNews, Zambia Can't Afford It' (Baggaley,1996). Its author commented that 'ifZambia's entire copper earnings wereapplied to buying the drugs for TriTherapy it would be possible to treat only60,000 people - less than 10 per cent of allHIV infected persons in the country.'

Discourse about HIV/AIDS in the northhas ceased to be framed in terms of panicor crisis or even urgency. IncreasinglyAIDS has come to be treated as a chronicillness and redefined as a conventionalmedical problem (Berridge, 1996); in-creasingly its treatment has beenroutinised. When fears that it wouldspread to the heterosexual populationwere quelled and the view entrenchedthat its impact would remain largelyconfined to 'marginal' groups, govern-ment funds and attention gradually di-minished. Thus the quality which oncecharacterised AIDS of demonstrating acommonality of interests on a globalbasis, with potentially devastating im-pact across both rich and poor countriesalike, has receded. Whereas WHO's ini-tial hesitancy to mount a global campaignaround AIDS was based on the mistaken

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view that it was essentially a problem forthe richer nations, which had the re-sources to cope with it, the possibility of aconcerted campaign is now frustrated bythe emergence of treatment regimes whichdull the panic about AIDS in the North,because affordable there, while elsewherethe suffering continues to increase. Al-though still global, the burden of AIDS isincreasingly and disproportionately be-ing borne by poor nations and particu-larly by African populations, and theprospect looms that they may be increas-ingly left to themselves to deal with thesocial, economic, psychological, demo-graphic and political dimensions of itsimpact.

Conclusion

The shift in perception and understand-ing about the significance of AIDS, withits implications for the weakening of aformer sense of common purpose, makesconferences such as that reported on hereall the more important. The sharing ofknowledge and the expression of mutualsupport among scholars and activistsacross boundaries of African nations, aswell as between the North and South, iscrucial for maintaining the struggleagainst AIDS. Equally, it is important forsocial scientists to critically review boththeir findings and their methodologies toensure that limited resources are usedmost effectively. If exposing challenges,not least the need for reflexivity about theresearch which done, the way it is con-ducted and the probability and nature ofits impact, the symposium also served tolegitimate the importance of this workand the need for its continuation andsupport.

Carolyn Baylies is at the University ofLeeds and Janet Bujra is at the Universityof Bradford, UK.

References

Baggaley, Rachel (1996), 'The good news: newdrug therapy reverses the symptoms of AIDS;the bad news, Zambia can't afford It', TheZambian Farmer (August 1996): 18-9.

Berridge, Virginia (1996), AIDS in the UK, theMaking of Policy 1981-1994, Oxford UniversityPress.

Radford, Tim, 'Drugs cocktail offers hope toHIV sufferers', The Guardian, 8 May 1997: 1.

Sullivan, Andrew, 'When Plagues End, Noteson the Twilight of an Epidemic', Independent onSunday, 16 February 1997: 7-11.

UNAIDS web site: http://gpawww.who.ch

International Symposium, Social Sciences andAIDS in Africa: Review and Prospects, SaliPortudal, Senegal, 4-8 November, 1996, co-sponsored by Codesira, CNLS and Ostrom,Collected papers, volumes 1 and 2. The followingpapers included in these volumes have beencited:

Baylies, C, J Bujra et al. 'Rebels at risk; youngwomen and the shadow of AIDS'.

Benoit, C, 'Le sida a Saint-Martin/Sint Maarten:itineraires therapeutiques et exclusion socialedans une societe pluriethnique'.

Brunet-Jailly, J/Peut-on faire l'economie duSida?'

Dedy, S, 'Securite sociale, sida et medicine dutravail en Cote-d'Ivoire'.

Gruenais, M, 'La religion protege-t-elle du sida?Des congregations religieuses congolaises facea la pandemie de l'infection par le VIH'.

Hassoun, J, 'La solidarite familiale et com-munautaire a l'epreuve de sida. Resultats d'uneenquete aupres de femmes malades du sida aAbidjan (Cote-d'Ivoire).

Mselatti, P, 'Essais therapeutiques pourdiminuer la transmission mere-enfant de VIH.Questionnement au quotidien et legitimitescientifique'.

Muhongayire, F, 'Dimensions preventives dela prise en charge de personnes atteintes par leVIH: actions et contraintes'.

Painter, T, 'Population, mobility and AIDSprevention initiatives in Africa: opportunitiesfor contribution by social scientists.

Seidel, G, 'Seeking to optimise care for HIVpositive women and extending the genderedrights' discourse - conceptualising the dilemmas,with illustrations from fieldwork in rural SouthAfrica'.

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Tonda, J, 'Les specialistes non medicauxcongolais et le probleme de la connaissancescientifique du sida'.

Vidal, L, 'Evenement, experience et negociation.Enseignements d'une anthropologique du sidaen Cote-d'Ivoire.

© © ©

AIDS Drugs Cut to 'GuineaPigs'Lucy Johnston and Ruaridh Nicoll

The following Briefing & Comment arereprinted with permission from the Ob-server, 8 June 1997.

Poor people in the third world are havingAIDS treatment withdrawn after takingpart in trials that have proved the successof a new 'wonder drugs'. Multinationaldrug companies - which conduct thetrials and allow their patients to return torisk imminent death - have been con-demned as 'unethical' by the WorldHealth Organisation.

In many countries there are no properethical standards and companies areexploiting this loophole (Dr JosephSaba, WHO'S United Nations Pro-gramme).

Yesterday, Dr Saba called for the practiceto be stopped. Almost 95% of AIDSvictims live in the developing world andare not receiving treatment because ofdrug costs. The new anti-AIDS cocktails,tested in the third world but mainly usedin the West, cost up to £19,000 a year perpatient and earn millions for the pharma-ceutical industry.

An Observer investigation discovered thatin South Africa, where 2.4 million peopleare HIV positive, AIDS patients wantedfor trials must first agree that they can betaken off the costly drugs when the testsare completed. Doctors say many pa-tients cannot read or understand the

forms they sign. Eddie Graham is one.Last Christmas, his immune system hadcollapsed and he was put forward for thetrials for the drug Neviripine, made bythe German firm Boehringer Ingelheim. 'Iwas told I would only receive treatmentfor two years', Mr Graham said. T signedwhat I was told to sign because I was sosick'. After five months on a cocktail ofLamivudine, Neviripine and an AZTsubstitute, Mr Graham's condition im-proved. He will receive treatment foranother 19 months. Then he will againface the prospect of death.

Charles de Wet, medical director ofBoehringer Ingelheim, was not availablefor comment. But in a report by thedevelopment group Panos, he is quotedas saying that 'providing extended freedrugs would be very expensive andimpractical'.

In another South African trial, 160 pa-tients were given the drug Sequinivir,made by Hoffman La Roche. After 80weeks the patients, part of a global groupof 3,500 guinea pigs, discovered that thetreatment was about to be stopped. Anethical committee at the University ofWitwatersrand, which co-operated withthe project, protested. Professor PeterCleaton-Jones, head of the committeesaid: 'Companies from abroad come tothis country to circumvent ethics.' Theuniversity's senior physician, Dr DavidSpencer, said: 'many patients who weredoing very well on combination therapybecame very sick when the drugs werewithdrawn. In rich countries, combina-tion therapy is usually available throughthe public health system, but in poorcountries there is nothing.' Roche SouthAfrica's Dr Mike Brown, said, 'this wasn'tan issue [at the beginning] as far as I wasconcerned, [the ethics committee] saw theprotocol and they approved it.' Roche hasnow agreed to supply drugs while nego-tiations continue. The revelations haveupset South Africa's medical establish-ment. 'People claim these trials benefitthe global fight against AIDS, but they

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