Human rights, science and development spotlight at Sci.Dev

The SciDev.net website is devoted to communicating news and views about science, technology and the developing world. I have used material from their excellent website to blog in the past, particularly their informative section on research ethics. Last week, they published a Spotlight entitled Linking Human Rights, Science and Development, including a number of opinion pieces about the promise of technological development (particularly in medicine, agriculture, and communications) for developing countries.  The main thrust of the articles is that technological advances and investments in the developing world must be informed by/constrained by human rights considerations in order to avoid exploitation of persons and natural resources, to combat research being disproportionally focused on disease affecting the more world's affluent nations, to ensure equitable access to health and health care, to involve more women in science and otherwise combat gender inequity, and to increase benefits of scientific advances for local communities. All of this sounds fine and good, but of course the more you put into the job description of human rights, the more expectations you create, as well as more skepticism: to what extent can human rights really deliver any of this?

I have been in two minds about human rights approaches to anything for quite awhile. On the one hand, human rights approaches can sometimes get positive things done by using the law as a way of forcing reigning powers to change their ways. One can hardly doubt the relevance of human rights discourse in settings plagued by oppression and poverty. On the other hand, ethics has more to it than rights, and bioethics has more to it than human rights. It is important to develop ethical arguments pro and contra practices, trends, and actions even if these arguments are not easily or immediately translatable into law. It is about developing, maintaining and questioning what Simon Blackburn calls the 'ethical climate', using the full vocabulary of ethics: virtues, consequences, obligations, care, compassion, solidarity and so on. Those voices too have to be brought to bear as the developing world is increasingly integrated into the (capitalism-driven) science and technology bandwagon, with all its benefits, seductions and pitfalls.    

Needle exchange for injection drug users in Kenya

Public health initiatives are vulnerable to being beaten down by political and religious opposition if they do not cohere with what a moral majority deems acceptable or conflict with the sensibilities of influential faith communities. Such was the case with HPV vaccine in Texas. So it is surprising to see that in Kenya, public health authorities are moving forward with needle exchange programs (as part of comprehensive care services) for injection drug users in the country, despite the vocal opposition heard in the media over the summer.

If it were a purely evidence-driven issue, public health priorities would surely prevail: there is ample data about the (cost- and other) effectiveness of such programs in other parts of the world, and there is little to no evidence that they perversely lead to increased intravenous drug use. The opposition arguments tend to have little more behind them than the 'yuck' factor: those who inject drugs are debauched, unclean, frightening and doing something illegal. Why devote scarce health resources to those who have obviously lost their way?

There are responses to that question, of course, in terms of disease control (a third of injection drug users in Kenya are HIV-positive) and the human right to health. But generally arguments go out the window when the rambunctious public health/politics/religion machine starts going. It will be interesting to see what happens with this initiative in the coming months, and to discern whether it is part of a general trend: public health flexing its muscles in Sub-Saharan Africa.

HIV cure of the month

Over the last two decades, there has been two tracks on HIV cures: the scientific track, which has not been very successful, and the ethno-religious track, claiming a long series of successes, none of which  have been substantiated. Africa is a leading producer of faith-based and herbal remedy HIV cures. The BBC reports this week that faith healers in England -- apparently of African origin -- have been claiming to make HIV-positive persons test HIV-negative through prayer. One of the groups involved is the Synagogue Church of All Nations (SCION) in Nigeria, whose website includes YouTube videos of believers being healed of various diseases and conditions through the miraculous workings of faith healers. In England, these sorts of groups are accused of telling HIV-positive persons to stop taking their antiretroviral therapy; three deaths were attributed to these practices of Evangelical Christian groups last year.

The relationship between ethno-religious cures and Africa is an curious one. Africa is the origin of HIV,  and though it is not rational, there is some sense of shame there, that this should not be seen as an 'African product'. I remember people in the DR Congo claiming that HIV could not have come from their country: it must have been snuck in from Rwanda or Cameroon. There is also a persistent rumor in Africa that HIV came totally from the outside, from the leading powers of the world, as a diabolical plot to depopulate the African continent. In this context, the idea of an indigenous, non-scientific African cure for HIV becomes very tempting, a delicious thought. After all the high-tech, heavily funded biomedical struggles of powerful and affluent nations to find a cure, the answer comes from something local, homespun, either natural in the form of herbal concoctions, or supernatural in the form of African religiosity. If that was the case, it would be an incredible coup.

Unfortunately, that is not the way it is. In the English case, it looks much more like religious quacks taking advantage of and endangering the well-being of HIV-positive persons, as well as those with other illnesses. British health authorities are unwilling to comment on the matter for fear of alienating religious sensibilities. But they should. Religious organizations, just like secular ones, should come under the scrutiny of the law if their practices seriously threaten the health of its adherents.  

Uterus removal scam in India

What looks ethically admirable on paper can always be turned into something dubious in practice. The Indian government has a national insurance scheme -- called Rashtriya Swasthya Beema Yojna -- that compensates private hospitals and nursing homes when they operate on patients who cannot afford the surgery. The idea should warm the hearts of anyone concerned about health inequalities and improving the lot of those most vulnerable in society. However, it appears that the insurance scheme in India is being seriously gamed: the patients may not be actually getting the operation or they are getting operations that they did not consent to. The private hospitals and nursing homes in question, according to the accusations, then bill the national insurances scheme to the greatest extent possible. Some think that millions of dollars worth of fraudulent medicine is involved. Only after an outcry from dissatisfied patients and some media attention did the Indian government initiate an official inquiry, which some believe is currently moving at a snail's pace. The final report should be interesting reading. Given that this was apparently corruption of a government health scheme, to what extent is there government involvement, considering how long it took for it to come to light? Were government officials, doctors, private hospitals and nursing homes milking the government by facilitating or conducting unwanted and unnecessary surgery on the poor? And why were the victims disproportionately women and their reproductive organs? India has a controversial history of sterilization campaigns that have traditionally focused more on hysterectomies than vasectomies, despite the latter being an easier intervention. One can only hope that what we see surfacing here is not an unofficial sterilization campaign on poor women with tacit government approval.    

Chronic kidney disease: a whodunit

There is a serious disease increasingly affecting the poor in South Asia that is shrouded in mystery. Despite it being discovered some twenty years ago, it is unclear how to prevent it, how to treat it, and most importantly, what causes it. Even its name is more suggestive than descriptive: chronic kidney disease of unknown etiology or CKDu. Unlike ordinary CKD, which affects older males and females and is associated with in developed countries with diabetes, obesity and hypertension, CKDu primarily affects males of working age, particularly farmer workers. CKDu has also been reported to be epidemic in some Central American countries, with the bulk of incidence involving sugarcane field workers. What is happening?

The answer seems to be: no one really knows yet. The World Health Organization and the Sri Lankan Ministry of Health produced a study that suggests the cause of CKDu may be due to chronic, low-level exposure of workers to cadmium and arsenic that can be found in pesticides and fertilizers. But the Sri Lankan government appears reluctant to widely publicize the report in order to inform both farm workers and food consumers, who also may be at risk. This reluctance has raised suspicions among observers: is the Sri Lankan government unwilling or unable to regulate agro-business, particularly the corporations that sell pesticides and fertilizers in the country. Is it because the government itself partly to blame for the rising incidence of CKDu, due to it subsidizing the costs of the fertilizers and pesticides that farmers then tend to overuse in their fields? Public Radio International (PRI's The World) has a report on the issue from a number of different angles. It goes without saying that because the epidemic is serious and because there is no clarity about the etiology of disease, speculation and conspiracy theories abound.

Whatever the causes and the responsibility, the current consequences for farmers and their communities is clear, and clearly bad. Those with CKDu find themselves unable to work and having to seek treatments (like dialysis) they can barely -- or not -- afford. Research, surveillance, policy-making and political will have to come together, and quickly, to prevent laborers in a crucial industry in developing countries from becoming seriously ill and dying.

Bioethics: The Failure of a Bad Critique

Let’s say that bioethics was invented in the United States, and is now being imported into developing countries. That might not be a bad thing: cellphones have been a boon to southern Africa, particularly in countries where landlines would be prohibitively expensive. But if bioethics is wasteful, useless or dangerous, then it is certainly wrong to spread its influence. In that case, it should not exist, even in its place of origin. This seems to be the position of Tom Koch, who has written an opinion piece today entitled ‘Bioethics: Failure of a Bad Idea’ on Huffington Post.

Koch offers a series of assertions about the evils of bioethics that are difficult to communicate without already seeing what is wrong with them. But let me try to summarize the main ones as neutrally as possible:

• The primary training of bioethicists is in philosophy, not biology, genetics or medicine. Their ‘expertise’ is therefore irrelevant to complex choices of patient care.
• The foundation of bioethics is not an ethics of care, but its origin and purpose rest upon its service to the neoliberal, postmodern economics that have turned health into a commodity. Their championing of patient autonomy reinforces health consumerism. 
•  Ethicists in the history of philosophy used to be outsiders that spoke truth to power in the name of the vulnerable. Current bioethicists, being beholden to medical institutions that pay them, cannot do so.
• Bioethicists basically provide arguments to justify the rationing of health care and the cost-cutting goals of government.

Koch’s piece is mentally paralyzing. By the sixth paragraph, I may have drifted into a coma. Because when someone presents a balanced argument with some contentious elements, it is not difficult to respond. But when you are smacked upside the head with a snarled potpourri of generalizations and caricatures, it is hard to know where to start.

Is the primary training of bioethicists philosophy? Show me the data: some are lawyers, some are social scientists and some (gasp) are clinicians. Bioethicists are a motley crew. Is Kant irrelevant to clinical decision-making? Maybe. Is knowing how to identify, parse and evaluate arguments that involve values irrelevant? Not so much. 

Is the origin and purpose of bioethics the neoliberal consumerism of medicine? Show me the literature: there are plenty of bioethics criticisms of purely market models of everything from organ donation to patent restrictions on essential medicines. Similarly, are bioethicists rationalizers of the cost-cutting goals of government? Oh please: some people in bioethics work in purely conceptual domains, while others find the economics of medicine so unrelentingly boring (or depressing) they couldn’t care less.

As for the point about speaking truth to power, bioethics admittedly could and should do more in the whistleblowing and ass-kicking department. But I would much rather read Carl Elliot – an incisive clinician/bioethicist with a strong philosophical background -- on that one.

One of the commentators on Koch's piece on the Huffington Post website complains about Koch's leaps of logic and asks why he should be given a soapbox on that site. The answer seems to be that Koch is promoting his Thieves of Virtue: When Bioethics Stole Medicine, where he apparently presents much of the same stuff, only longer. The author appears to have as much feeling for irony as he does for nuance: criticizing all bioethicists for being slaves to consumerism while flogging his new book on a commercial website owned by AOL.