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Ethical Dilemma's in Sex Work Research

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Ethical Dilemma's in Sex Work Research JUNE 2004 7 Sex workers health, HIV/AIDS, and ethical issues in care & research HIV prevention and health promotion in prostitution and health promotion HIV prevention EDITORIAL In the very first issue of Research for Sex Work, in 1998, Sue Moving beyond STIs Metzenrath from Australia wrote: “For far too long researchers On the positive side is the contribution from Gabriela Irrazabal, have been using sex workers as guinea pigs without any benefit who describes how the Argentinean sex workers’ union accruing to sex workers as the result of research. Essentially aca- AMMAR fights discrimination in health-care settings. Other demic careers are made on our backs. Further, some research community-based organisations have found similar solutions. has provided ammunition to those who want to suppress the However, some practices remain unacceptable. Veronica Monet sex industry and research findings have been used to support explains how sex-negative attitudes in the USA lead to biased some of those arguments. In many countries sex workers views of policy makers and researchers, which in turn lead to already refuse to be involved in research because they can’t see practices like mandatory testing. anything in it for them. After all, why would sex workers give An important step would be to move beyond thinking that STI freely of their information and knowledge and then it is used to treatment is the primary goal of health care for sex workers and suppress their livelihood?” STI research the primary goal of sex work research, as William Stigmatisation and discrimination are key factors that have an Wong and Ann Gray from Hong Kong stress in their article. impact on sex workers’ lives as appears from the contributions in They learned that research on aspects other than STIs and con- this 7th issue of Research for Sex Work on ethical issues in health dom use is rare in Hong Kong and state that “it is time the care and research. It starts at government level. As long as there health professionals and researchers review the ethics behind is no policy to decriminalise or legalise sex work it is hard to their research agenda and start to address those of sex workers develop research and interventions that focus on the well-being instead of their own.” of sex workers. An example of such counterproductive policies is Those who think that stigmatisation is absent at the level of seen in the campaign against social evils in Vietnam as described social science research are proved wrong by Stephanie Wahab by Rosanne Rushing. However, Vietnam is not the only country and Lacey Sloan who stress that the class differences between with this approach. Other countries may not be as naïve in their middle-class researchers and low-class sex workers have an over- terminology, but their policies are also leading to conceptualisa- riding impact. Among others it leads to victimisation and prob- tion of sex work as a social evil, resulting in stigmatisation and lematisation of the behaviour of sex workers. Finally, Laura unethical behaviour of government personnel. Agustin points out how that again leads to stereotyped answers When it comes to specific categories of sex workers this is often from sex workers to researchers’ questions. more outspoken, as described in the article by Chakrapani, Babu and Ebenezer about Hijra sex workers in India. Gaëlle Téqui Real-life experiences of sex workers from the French NGO Cabiria even writes that there is currently A lot of these problems can be countered by proper conceptual- more discrimination in health care in France than ever before, isation of research for sex work and by adopting the methodolo- especially with regard to migrants and transsexuals. This brings gies that are most effective in visualising the real-life experiences us to the level of the health-care services and unethical behav- of sex workers instead of producing biased stereotyped views of iour of health-care personnel towards sex workers. Most of the health workers, researchers and policy makers. For a solid con- time they will reflect the concepts that are considered as normal ceptualisation of sex work in the context of today’s realities in their societies. Many sex workers’ support programmes have there should be scientific consensus in considering sex work to be therefore set up their own non-judgemental health and social a normal economic activity. It is not primarily a sexual activity, how- services for sex workers. Due to a conflict of interest between ever eager the clients of sex workers are willing to believe that it is. these NGOs and the government, they will find themselves limit- Sex work is an economic activity that will attract certain groups ed in their initiatives. Wim Vandekerckhove describes how gov- of men, women and third-gender people more than others. That ernment funding creates dependencies that interfere with is a field of research in itself. It creates vulnerabilities and possi- efforts to empower sex workers. bilities. The possibilities should be further explored to reach an CONTENTS understanding of how they can play a role in ral therapy more accessible to HIV-infected sex 3 Ethical dilemmas in sex work the empowerment of sex workers. The vulner- workers, shows potential as well. A research research – S. Wahab and L. Sloan abilities should be mapped, because they are project in Brazil hired a former sex worker as directly linked to the risks of sex work, such as the principle investigator and involved sex violence, drug use, disease, debt and exploita- workers in all study phases. Examples like 6 Alternate ethics, or: Telling lies to tion. They include the following:1 these should be studied and documented, so researchers – L. Agustín • Absolute – lack of protection that sex workers’ organisations and their • Relative – exposure to higher than average research allies learn how to collaborate better risks for a common cause. 8 Collaborative research-communi- • Epidemiological – exposure to higher risks ty partnerships: The CAL-PEP case of HIV/STI infection Taking action against discrimination • Medical – inability to get optimal quality Another positive development is the fact that and level of care the number of community-based organisa- 9From subjects to partners: • Human rights – exposure to discrimination tions that are not waiting for governments to Experience of a project in Rio de • Social – deprivation of some or all social take proper action against unethical treatment Janeiro, Brazil – P. Longo rights and services of sex workers is increasing. The majority of • Economic – inability to counterbalance risk the contributions to the present edition come of infection or access to care, and from that background. Kao Tha and her col- 10 The Tenofovir trial controversy in • Political – inability to get full representation leagues of the Cambodian sex workers’ Cambodia. Can a trial be consid- or lack of political power. organisation Women’s Network for Unity ered ethical if there is no long-term (WNU) describe their fight against a new anti- post-trial care? – Kao Tha et al Such a conceptual framework will give the prop- HIV medication trial that does not offer any er dimensions to future research and interven- post-trial health care to the women for treat- tions. By looking at more factors than just ‘epi- ment of longer-term side-effects. This example 12 Hijras in sex work face discrimi- demiologic vulnerability’ (to STI and HIV infec- shows that WNU and other sex workers’ nation in the Indian health-care tion), we will be much better able to grasp the alliances world-wide no longer want to be system – V. Chakrapani, P. Babu realities of the complex world sex workers live in, guinea pigs for science. They demand ethically and T. Ebenezer and to promote their health and well being. sound conditions for their involvement, and proper access to health care, not only during Community-based research the research phase but also for a long time 14 Argentinean sex workers taking The chosen methodologies are equally impor- after research has been completed. care of themselves: the experi- tant. The traditional way of thinking in Finally, convincing doctors and researchers to ence of AMMAR – G. Irrazábal science, where the complex reality is broken take sex workers seriously and to treat them down into elements that are researched indi- like normal citizens is not enough. In the end, vidually and are later put back together to society at large should also do the same. 16 Discrimination of sex workers in form an overall vision is counterproductive Gabriela Irrazabal writes as follows in her arti- health-care settings in France – because it will recreate the perspective of the cle on AMMAR’s destigmatisation work in G. Téqui researcher. There is a need to respect the per- Argentina: “The most significant task is not spectives of sex workers, because these reflect only to build self-consciousness and self- the realities in which interventions have to esteem among its members and to create a 18 Health-care projects and the risk take place. collective sense of identity, but also to gener- of NGO goal displacement – This can only be done in participatory commu- ate a good atmosphere towards sex workers W. Vandekerckhove nity-based approaches. These approaches are in this conservative society.” based on a dialogue between sex workers’ experiences and needs and researchers’ scien- Note 20 Female sex workers in Hong tific skills. Unfortunately, in a sex-negative 1. J. Mann, D. Tarantola, D. Netter, eds. AIDS Kong: moving beyond sexual world this often remains an ideal rather than in the world, II: a global report. New York, health – W. Wong and A. Gray being considered as the only obvious option. Oxford University Press, 1996, p.
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