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.


Anonymous Anonymous said...

good work!!

7:51 PM  
Blogger udo schuklenk said...

But the emperor is naked, has always been, Stuart, so possibly calm your excitement and check what these people's past consultations have practically achieved. If that's anything at all to go by, it's fair to predict that future outcomes might also be close to zero. My 2 cents worth of cynicism.

7:59 PM  
Blogger RobertK.Bryant said...

Me and my co-workers at supporting similar program. I think it is the right thing to do.

11:44 AM  
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