Ethics of implementing male circumcision in Swaziland

Dispatch from Maputo, Mozambique. As far as I know, the European Union has sent me here to discuss ethical issues in research with new ethics committee members. In the past, there was only one ethics committee in Mozambique, whose original mission was to review all health-related research. As requirements to get ethical approval (for funding, for publication, etc.) get more strict, and the number of local research studies involving human participants rises, having just a single committee is no longer workable or sustainable. So they are wisely decentralizing into a number of institutionalized ethics committees around the country. I am here to discuss the ins and outs of ethics committees, their ups and downs, their virtues and vices.

During downtime in the Hotel Cardoso, I noticed this piece about implementation of male circumcision initiatives in Swaziland. Apparently, these HIV prevention initiatives have not come close to reaching their targets, after millions of dollars have been spent, causing both soul-searching and finger-pointing. (The program spent almost 500 dollars per circumcised male in a country which has an average per capita annual income of roughly $5000). I've thought for a long time that much more bioethics attention -- to its detriment -- has been spent on research ethics than the ethics of implementing research results into practice. The latter has its own particular conundrums, such as: what do you do about a (less than) half-implemented program? Particularly when part of the reason why the implementation was partial is due to significant community reluctant/resistance towards the very idea of male circumcision for HIV prevention? Where should you go from here?

Community concerns about male circumcision and HIV prevention include: why do circumcised men still get counseling about using condoms? What happens with the foreskin? Is there any connection between these circumcision programs and witchcraft? Why must men need to refrain from sexual activity for some time afterward? Other forms of resistance or reluctance, in the Swazi case, reach up to the highest levels of policymaking. Local public health authorities may have been interested in gaining funds and collateral benefits from male circumcision initiatives, while being skeptical about the value of the intervention itself. Low community and governmental 'buy in' (as they call it) can derail any public health program. Add to this the work of the anti-circumcision groups and individuals worldwide, who can be found on the comments section of any news item on male circumcision and HIV, whipping up fears and debunking the science. For the latter, the ethics of implementing male circumcision programs is simple: just make it stop.  

When AIDS activists get ugly

According to Wikipedia, "activism can be described as intentional action to bring about social or political change. This action is in support of, or opposition to, one side of an often controversial argument." In the global struggle against HIV/AIDS, activists have contributed positively in an number of ways, particularly in securing greater access to antiretroviral drugs for resource-poor countries and increased funding for HIV-related research and programs.

AIDS activists share common aims, but recent developments make it clear that there are profound disagreements within the activist community on methods and convictions. In the Autumn issue of the Southern African Journal of HIV Medicine (summary available here), AIDS activists Nathan Greffen and Gregg Gonsalves take dead aim at the words and actions of the well-known French AIDS activist organization ACT UP-Paris. According to Geffen and Gonsalves, ACT-UP Paris over the past years has displayed a pattern of irrational behavior, very publicly accusing researchers and research institutions of unethical behavior with little or no factual basis for their claims. One example they give is ACT-UP Paris' spectacular trashing of the Gilead exhibit at the 2004 International AIDS conference in Bangkok, which was supposed to protest trials of pre-exposure prophylaxis with the drug tenofovir among sex workers in Cambodia. Gilead, the pharmaceutical company that produces tenofovir, were not even involved in the study. Months later, ACT-UP Paris were instrumental in shutting down a tenofovir trial in Cameroon, mostly by whipping up a broth of accusation, innuendo and rumor. Much smoke, little fire: no one as of yet has been able to spell out what exactly was so ethically egregious about the Cameroon study.

Geffen and Gonsalves give a number of other examples, but they all make the same point: ACT-UP Paris has been pointing fingers at HIV/AIDS clinical trials and particular approaches to HIV prevention (such as circumcision) on ideological rather than factual grounds. But what is worse are the consequences of 'irrational activism': obstructing serious debate on important ethical issues in HIV/AIDS science, and possibly undermining important avenues of research in the struggle against a deadly global epidemic.

ACT-UP Paris has not been slow to respond to the article on its website. Unfortunately, as a rebuttal, it seems to be all over the map. They understand Geffen and Gonsalves to be accusing them of being rabidly 'anti-science', and spend much time declaring how much they like science, how much they are in the company of scientists and how capable they are of reading scientific protocols. In regard to their 'mediatic' actions (such as tossing symbolically red jam at the exhibits of pharmaceutical companies), they defend their tactics of bringing ". . . to the public arena the problems of research and reverse power relations that are most often not in the favor of persons living with HIV/AIDS." At a certain point, their response to the accusation of irrational activism looks, well, irrational:

Doing treatment activism also means raising political issues. What is anti-scientific about that? Do you want us to think that science is ideologically pure and that researchers don't have to [sic] society and those who they work for?

Readers are advised to have a look at the article and the webpage -- as well as whatever reliable supporting documents they can get their hands on -- and come to their own conclusions as to whether this heated debate is a sign of health or sickness within the AIDS activist community.