You mentioned that Human Rights Watch uses testimony to advance legal and political analysis. What advantage does rights discourse have over other forms of evidence? Oftentimes, it is the single case study that wins the day in terms of funding, even over “legitimate” forms of evidence. What kind of evidence works to do that? What about the relationship between culture and human rights discourse? Sometimes the idea of health at all costs can backfire without more sensitive models for what rights mean in different contexts.
Are there rights to ambiguity in the world? It can be dangerous to know things about yourself and through other people. Our framework of stigma cannot capture the toxic nature of this kind of knowledge. Even with treatment available, many who learn something about HIV/AIDS choose to ignore it. There is an intermediary level of analysis that lies between the individual and the community. Attending to this level would allow us to get a better idea of what rights are and how they should be defined. Also, what about obligations, not just rights?
Michael M. J. Fischer
Historical case studies are helpful here. For example, the HIV/AIDS program in Iran, where the UN discourse about HIV and sexuality was counter-productive. Ambiguous discourses at different levels of policy-making are sometimes critical to getting care delivered. There was a study of HIV infection in prisons in Iran, and it was discovered that there was an explosive rate. Iran acknowledged the existence of the AIDS epidemic. In one of these prisons, condoms were delivered and conjugal visits were allowed, but the official discourse was all about injection drug use (because in Iran homosexuality must either be given up or one must have a sex change). To mention male to male transmission went against official discourse. There is a similarly pragmatic use of ambiguity at all levels of policy-making. Iran achieved best practice status for the program, but the two doctors who led that effort are now in jail.
Susan Reynolds Whyte
A sociological question: Who does campaign and who should campaign for rights? We assume that it’s the people who have been infected that should make claims for treatment, but in very many places that is not the case. In many instances, it’s the providers, not the patients.
I want to highlight this moral obligation of HIV disclosure in the South versus the right to privacy in the North. This is unfair for disclosure can mean death. Also, the right to treatment is based on the right to life and this push is completely overwhelming the public sphere and displacing the debate on social justice.
Joseph J. Amon
The question of generalizability is extremely important and it highlights the tension between evidence and principles. If it is a principle, does efficacy really need to be proven/substantiated with evidence? Which kind of evidence?
In terms of the rights to ambiguity, the lack of available testing is not the only limitation on people knowing their status. People often just don’t want to know. If you look at the communities that aren’t being serviced, the problem isn’t always or necessarily the availability of testing. People have desires to know and not to know. Public health actors may not be receptive to this tension because they are so focused on operationalizing. There have been proposals from the National Institutes for Health for universal HIV testing at Walmart and Nathan’s Hot Dog stands. I’ve pushed against this.
Let me address the issue of the right to life trumping the right to consent and confidentiality. There are power differentials between providers and patients, and there is often pressure from healthcare providers for people to test. The Minister of Health in Lesotho for example told me that government facilities “routinely test” patients. But the Minister claimed that this testing was “opt-out” because patients could decline to hear the result of the test. “Consent” in this case is defined as the right to either get back the results or not. I asked the Minister, “What happens if a patient does not want to receive their results, but the provider knows that they are infected?” The answer was, “We go to the houses of those patients and strongly encourage them to get their results.” Coercion around HIV testing will increase project outputs and will almost certainly save some lives, but no one is looking at how many people will avoid health care centers, will feel betrayed, will be harmed by breaches in consent and confidentiality. What will be the long-term impact?
Often, human rights analysis does not counter public health evidence; it advances it and demands of governments to respond to it. But there are times when the positions of treatment activists, public health officials and human rights advocates have diverged. And around HIV testing, it comes down to a question of “what’s wrong with a little bit of coercion?” and “who is slowing the response to this disease?”
We, too, at Human Rights Watch (HRW) are critical of people who invoke rights as a magical framework that infuses a position with authority. We talk about human rights, but we work in specific national contexts, looking not only at abstract rights, but at specific state laws. HRW tries to hold governments to the obligations they’ve legally accepted. There is a real advantage in being precise.
In terms of culture vs. rights, the pushback has been on a global (or universal) view of rights versus the idea that certain rights, or the rights of certain populations, are not universal. But who defines “Asian values” or “African values”?
Who should campaign for rights and make claims? The rallying cry of “nothing about us without us” is widely accepted in the HIV response, but the specifics sometimes are missing – will sex workers be allowed in to the U.S. for the next international AIDS conference? Members of the international network of people who use drugs have attended international meetings but there is no international network of prisoners or illegal migrants. And who really represents the “community”? When I attended a meeting sponsored by the International AIDS Society, I was put on the list as a community member, despite the fact that I am an epidemiologist, and it’s not clear what “community” I come from.
The question of human rights versus medical action and who we engage is not clear cut. If we engage with institutions that seem to have reasonable intentions but that also violate human rights, does that prolong them?
“Behavior change” and “social marketing” is the dominant public health paradigm in Africa. And it’s all tied into whether you can measure a change in behavior. Behavior change is the central thing in terms of funding. The other public health approach is not to make people do something differently, but simply to inform them of what their rights are. The problem is that you cannot be funded for a project leading to treatment literacy if it does not focus explicitly on changing behaviors.
Michael A. Whyte
I am uncomfortable with the notion of global health. It’s almost an oxymoron. So is the idea of universal human rights. Health has to do with here, the global is out there. Rights are tested in courts and have immediate consequences for people. Universal rights are more apt to be discourses. Can we compare global health and universal human rights, and see what kinds of tools these terms actually are? And the ways their deployment may be leading to a less productive engagement with lives and concrete social worlds? By engaging inequity via “global health” do you perhaps end up prolonging problems? When a pharmaceutical company engages in global health, does that have a different effect than when Princeton engages? Might working in “global health” sometimes help keep poor people sick?
Joseph J. Amon
There is an interesting question about how we invoke human rights as well as about our engagement with governments and the levers to influence change. Institutions rarely lack understanding of their obligations and Human Rights Watch does not go through the courts to incite change. So, what is the value of our legal analysis? How is it helpful? We put pressure on governments to respond to the issues highlighted in our reports. Even if certain governments don’t respond by actually reforming laws or practices, our documentation creates an historical record and accountability that can keep abuses in check.
The question about prolonging inequity and its relation to cost-effectiveness is critical. Sometimes interventions are presented as structural, when they are, in fact, really individual. The strategy of reaching the low-hanging fruit is very common. Who is easiest to reach? The first ARV clinics set up in Zimbabwe were set up exclusively for parliamentarians. But where was the incentive to scale-up in that situation? Sometimes, the more expensive, harder interventions are better in the long run because the easy interventions diminish the desire for equity or expanded health interventions. But the emphasis has almost always been on starting at the easiest place. Everyone just wants to know that in two years, there will be numbers.
It is difficult to be as historical as we should or might like to be because we’re moving so fast all the time. I would like to trace not just how institutions have adopted the language of rights, but to get a more grassroots view on rights and to better understand how people have mobilized others to understand their rights and to make them more expansive.