Wednesday, October 31, 2007

Need a kid, kidney or a nosejob? Pack your bags for the global south

As I have mentioned before, global bioethics should be distinguished from the globalization of bioethics. The former is about whether there exists a common ethical framework, shared by humanity, within which bioethics questions can be discussed. That question is basically a variation on the old theme of universalism vs. relativism in ethics, and it is not likely to be resolved by, say, the next American Society for Bioethics and the Humanities meeting. The globalization of bioethics, on the other hand, not something to be sought after: it is a contemporary phenomenon, and we are stuck with it. The term refers to how the process of globalization raises bioethics issues, all over the place, where you perhaps might least expect them.

Like cosmetic surgery for Irish people in Brazil. Or specialized Indian clinics offering IVF to folks in Ghana. Or the fact that if you can't bear a child yourself, wherever you are, for whatever reason, there are apparently plenty of Indian women willing and able to do it for you. And the price for all these services is likely to be far lower than you would pay otherwise. When enhancement technology kicks in -- when we can use gene therapy to increase our brain's memory capacity -- you can be pretty sure that Bangalore, not Berlin, will be the place to get it done quick and cheap.

Some would argue there is no ethical problem here: you have clients with demands and you have agencies with supplies: why should it matter that the exchange involves international travel? But the relationship bears further scrutiny: the exchange is taking place across steep gradients of socio-economic and political inequality, and that has interesting ethical implications and side effects. Physical enhancement via high-tech surgery and the ability to have genetically related children despite natural impediments may become standard of care for the better-off in the developed world and the elites of 'less fortunate' countries, though the actual care may take place in some exotic destinations. The vast majority of people living in low-income countries are unlikely to have access to technologies that can liberate us from the vagaries of the natural lottery -- given their spotty access now to basic health care -- but they are still an important cogs in the globalization wheel. While much of the raw mineral resources of the global south have long been tapped (or expropriated), there are still vast human biological resources in low-income countries where the market is poorly regulated. Rent for a womb in Indore, India costs as little as R 200,000 ($5000), from which the surrogate mother gets $1200 (or $133 per month). Hiring a surgeon in Brazil to fix your breasts will set you back less, and the surgeon him- or herself may well enjoy the exchange, given that it brings more revenue than (say) operating on sick compatriots from the lower classes.

Michael Moore made Sicko. The world awaits a film director capable of faithfully conveying the human dimension of the globalization of bioethics.

Saturday, October 20, 2007

Embedded ethics workers in the Grand Challenges Initiative

Social scientists and people working in ethics have been gradually infiltrating international health research over the last decade. The first step -- in the wake of well-known controversies -- was to make challenges raised by international health research into objects of ethical analysis. The literature on the subject has grown, a couple of new journals have sprung up to meet the demand, and the traditional journals are increasingly making space for ethical reflection on the globalization of research. The second step is to deeply integrate social science and ethics workers within international research projects themselves, turning them from outsiders to insiders. The forerunner in this respect is the ELSI (Ethical, Legal and Social Implications) program within Human Genome Project, established in 1988 by James Watson (who is getting press for different reasons these days). The International HapMap project and the National Nanotechnology Initiative have continued the trend of bringing social science and ethics workers into large-scale, heavily funded and potentially controversial research initiatives.

The newest example of this movement is the Ethical, Social and Cultural (ESC) program of the Grand Challenges in Global Health Initiative, a $450 million project funded by the Bill and Melinda Gates Foundation. Grand Challenges funds 44 projects that will (hopefully) lead to scientific breakthroughs against neglected diseases in developing countries, and its accompanying ESC program has the mission of addressing the ethical, social and cultural issues that may arise in development of the scientific research or in the use of resultant knowledge or technologies by communities in need. Last month, PLoS Medicine published four fascinating articles on different aspects of the ESC program. It is striking how prominent community and civil society engagement feature in their methodology, a response to recent international research projects that collapsed under the weight of community distrust.

There are many appealing aspects of this new trend in general and the ESC program in particular. Not the least of which: it gives ethics workers a job. But more than that, the job in the case of the Grand Challenges seems worthwhile (and somewhat glamorous), since it contributes in a creative way to the development of research that aims to make a difference to health and well-being in the developing world. And (for a change) the jobs are not being distributed exclusively to those residing in the industrialized north of our planet. The program's leaders include those from South Africa, Ghana, and India, and the program has interviewed key informants from numerous developing countries to ask where they think the key ethical, social and cultural challenges lie. People have often complained that the ethical dimension of global research has been neglected, and when there has been attention to it, the voices of developing world have been underrepresented. So what's not to like?

There is always something, of course. One issue can be raised about an underlying assumption of the Grand Challenges initiative itself. The initiative assumes that the development of new health technologies is a priority for developing countries, rather than the appropriate use of known effective interventions. Although original in other ways, the initiative falls into an old pattern: in our quest for the next exciting new breakthough, we seem to forget the mundane business of integrating the old breakthroughs into health systems. Many areas (especially rural) in the developing world have not tasted the fruits of biomedical research developed decades ago, and another sort of initiative would invest heavily in operational research to break them out of their health care time-capsules. That would be an enormous challenge, but perhaps not so grand, at least in the eyes of funders who are big on innovation.

Further reflection on this point brings out the idealism of the Grand Challenges initiative. One of the articles speaks of developing 'a technology road map leading from laboratory to village.' But maps have been drawn before, and the destinations remain elusive. In 1999, a short course of antiretroviral drugs was shown to prevent mother-to-child transmission of HIV by more than half. Six years later, only 9% of HIV positive pregnant women worldwide had access to these simple-to-adminster drugs. Access to antiretroviral treatment for control of HIV/AIDS in some developing countries is not faring much better, and according to a new study up to 40% of patients in Africa who have received AIDS drugs have either died or stopped treatment within two years. The failure to invest in primary tuberculosis control programs has led to the emergence of untreatable strains of TB. Millions of children under 5 around the world die of diseases we already know how to prevent and treat. Will new research breakthroughs of the Grand Challenges initiative succeed where the implementation of known effective interventions -- backed by much more than $450 million over the years -- have stumbled? This high-stakes project should be closely watched over the years to come by anyone interested in international research ethics.

Tuesday, October 16, 2007

Drunkeness, thievery and health: the South African soap opera continues

In regard to ethics and health, what can South Africa do for an encore? It is not enough that its President, Thabo Mbeki, has consistantly failed to distance himself from those who deny that HIV causes AIDS. It is also not enough that his health minister, Manto Tshabalala-Msimang, is already infamous for her promotion of the use of lemons and garlic rather than anti-retroviral drugs to control AIDS. Over the last three months, Tshabalala-Msimang has been accused of stealing from medical patients in the past (as a hospital director in Botswana), loudly boozing it up while a patient herself (for a shoulder operation), and receiving special priority for a liver transplant despite violating the requirement of not drinking alcohol 6-12 months before surgery. She has been seen drinking since.

The new twist in the tale is that the journalists of the Sunday Times, the Johannesburg newspaper which broke the stories of ministrial drunkness and thievery, are accused of obtaining and publishing Tshabalala-Msimang's medical records without her consent and are threatened with arrest. An alleged represenative of the medical community, speaking on anonymity, states that such uses of medical records are simply unethical, even if what they reveal is itself unethical behavior. Defenders of the journalists cite press freedom, while pointing out that the journalists and the newspaper seem to be subject to special government pressure: the journalists are now being watched by the South African secret service, and the government is threatening to withhold its advertizing from the Sunday Times. Interestingly, the executive director of the Freedom of Expression Institute argues that disclosure of private information can be justified in the light of a significant public health threat, and Tshabalala-Msimang should be considered just such a threat. It is unusual that a Minister of Health is viewed as analogous to multi-drug resistant tuberculosis or a toxic waste spill. But in South Africa, anything is apparently possible.