Playing good cop/bad cop with Guatemala

Last year, the discovery that abusive sexually transmitted disease (STD) research was funded and conducted by the US government in Guatemala in the 1940's was headline news. This week, we are hearing two quite different responses to those events in the press. The US Department of Health and Human Services announced that it will commit roughly 1.8 million to strengthen public health activities on HIV and STDs in Guatemala as well as help bolster ethical protections for research participants in that country. It is hard to see this newfound interest in Guatemala, STDs and ethics as a coincidence, and also hard not to see it as partly driven by public relations interests. But if it does good, it does good.

Then there is the other voice. Hundreds of Guatemalans who were participants (or family members of participants) are suing the American government for compensation. The US Department of Justice is apparently having none of it. The DOJ is quite willing to state that the research in Guatemala was shameful, unethical and downright wrong, but also quite happy to draw a very firm line between morality and legality: what is immoral is not necessarily grounds for a legal claim. So the DOJ is asking a federal judge to throw out the lawsuit. You can see the reasoning: President Obama and Secretary of State Clinton already formally apologized for the US government's role. President Obama set up a commission to express, to the countries in the world where the US does research as well as the American electorate, that those abuses are being taken seriously and steps are being taken to ensure no repeat performances. Isn't this enough?

Not everyone is comfortable about sticking purely with moral outrage and disapprobation when it comes to serious abuses of persons in biomedical research. Doesn't the whole pious talk about 'respect for persons' just blow hot air around if there is no place for punishment and compensation, at least in the most egregious cases? Obama's Commission itself seems to think that compensation for harm -- which governments and private companies have historically shied away from for obvious reasons -- needs to be rethought. We will see in the coming years which voice about Guatemala makes itself heard.

The President's Commission ponders global safeguards in research

An article by Mike Stobbe on global research ethics is doing the rounds: my Google Alert has been sending me its many incarnations, as the piece seems to have been sold and resold to various news outlets. Titles vary from 'Ugly US medical experiments uncovered' to 'Shameful past of medical trials prompts new US investigations' and all sorts of other permutations. The first line of the article, though, is not promising:

Shocking as it may seem, US government doctors once thought it was fine to experiment on disabled people and prison inmates.

It should not be too shocking, because the National Institutes of Health sponsor and conduct research studies involving the disabled and prisoners right now. It was not just the populations that were the problem with those experiments, of course. It were the procedures, and more specifically, studies in the past that involved deliberate infection of healthy (but vulnerable) persons. Stobbe has himself sniffed around in the archives to find some more skeletons in the US research closet, and adds them to the scandals we already know: Tuskegee, Willowbrook, the Jewish Chronic Disease Hospital, the AZT trials, the Trovan study. He leavens his account with an indication of how health research has gone global: drug studies, once almost exclusively conducted in the US on prison populations, has been redirected to developing countries in order to evade stricter regulations at home and to hold down study costs.

This potted history is a lead-in to last week's meeting of the Presidential Commission for the Study of Bioethics Issues. The Commission devoted an afternoon to comments and discussion about global health research ethics, Commission having been given two tasks by President Obama: to investigate dubious US government funded studies in Guatemala in the 1940's, and to see what system of protections and safeguards exist to ensure that similarly abusive research does not happen. This is an enormous task, and the Commission has little time to complete its mission. They did invite an amazing array of experts for the session on March 1st that is well worth watching. What struck me, however, was the public comment session: a fair number of people stood up to give personal testimony of how they were subjected to secret government experiments, involving electroshock treatments, mind control, torture and so on, followed by way too much information about physical and psychological symptoms. Either mentally unbalanced persons are drawn to commissions about abusive research like moths to a flame, or there is much more abusive research taking place in the United States than we know about.

UPDATE (March 10th): I was amazed by the testimonies during the public comment session of the Presidential Commission. Those over at Are You Targetted? are not amazed at all by the content of the testimonies, where citizens claimed to be victims of abusive and covert state-sponsored research, but are amazed by the fact that the news outlets did not seem to cover this part of the proceedings at all. It is strange that the high drama and vividness of these testimonies was not considered newsworthy.

Ambiguous bioethics messages from high places

The two of the biggest bioethics news items in the media this past week have formal similarities: they first raise interest, and end in puzzlement. First, the words of the Pope. The Catholic church, as is well known, is against the use of contraception, because it is said to sever the natural connection between sexuality and procreation. However, condoms -- when used and used properly -- are very effective at preventing the spread of HIV infection. This is why the Church's principled prohibition against condoms looks sinister in the context of the HIV/AIDS epidemic. It makes the Church look indifferent to (if not complicit in) the spread of HIV infection and the sickness, suffering and death that often accompanies it. Last week, the Pope floated a few ideas around that suggested that the use of condoms could be morally permissible in exceptional circumstances. And his example of such an exceptional circumstance was quite striking:

There may be a basis in the case of some individuals, as perhaps when a male prostitute uses a condom, where this can be a first step in the direction of a moralization, a first assumption of responsibility, on the way toward recovering an awareness that not everything is allowed and that one cannot do whatever one wants.

If the male prostitute is a gay sex worker, then the condom is not being used anti-procreatively, for obvious reasons. Hence, male prostitute condom use is not against Church doctrine -- not that this particular topic has been a rich source of doctrinal debate, to my knowledge. So the exception is not particularly helpful for regions like, say, sub-Saharan Africa, where male prostitutes are not the drivers of the HIV epidemic, God-fearing (and often married) heterosexuals are. And here is where it gets murkier: a Vatican spokesman claimed that the Pope was not talking about the use of condoms among male sex workers alone, but also with any "man, woman or transexual." (Gay sex workers and transexuals: since when did the Vatican get so racy?) The use of condoms could be regarded as a moral act if the intention is to prevent grave risk happening to another person. But is the spokesman really speaking for the Pope? Why were the Pope's comments part of some obscure interview? Is the Pope seriously considering a U-turn on condoms, or just floating something out there, testing the conservative waters?

The secular state has its own ways of being obscure. President Obama ordered a review of the ethics of research sponsored by the US government involving human participants. According to the press release, the review was provoked by the recent revelations that the US government funded and helped to conduct dubious syphilis research in Guatemala in the 1940's. The new (and newly renamed) Presidential Commission for the Study of Bioethics Issues is to lead the review. But, on reflection, this does not make much sense. The scandal in Guatemala happened sixty years ago. In the meantime, we had the infamous Tuskegee syphilis studies, the Belmont Report, the creation of the Common Rule, the proliferation of IRBs, the rise of bioethics centers, programs and scholarly journals, and much more besides. Why would an event which pre-dated all this trigger a review of all this? The only reason I can see is ... that there must have been calls to review the system of ethics protections already, and the news of the Guatemala scandal came at an opportune time for reformers. What sort of reforms are being contemplated, what is really driving the changes, and who is leading the charge? For the moment, the answers are shrouded in mystery, and the huddled masses have no way of telling.