Questions
Is it always better to do something than nothing; in other words, is it better to conduct the trials described above with the intention of developing some at least partially effective, potentially affordable intervention now, rather than waiting for broad social changes that would enable delivery of what is standard of care in the developed world? On the other hand, does permitting such studies and the eventual implementation of inferior (but better than nothing) therapy in developing nations reduce pressure to do more, e.g., to develop the public health infrastructure and political will to provide care more closely approximating that of the developed world? Susan Wolf makes this argument about current efforts to address genetic discrimination in the US; she argues that an anti-discrimination approach in health insurance, for example, “blunts any challenge to the rating system itself by suggesting that the problem is adequately handled by prohibiting disadvantage based on … genetic information” (195, p. 348). In what other areas of health policy and research do you recognize a similar concern that by doing something rather than nothing, people undertaking these “band-aid measures” relieve pressure to address the problem more fully?
What role should individual researchers play in the development of another country’s public health infrastructure?
What are the elements of such an infrastructure?
Are there communities in the US—geographically defined or defined in other terms—that could similarly benefit from researchers’ efforts?
If an investigator undertakes a “non-intervention” epidemiological study—for example, a study of the prevalence of disease x—in a developing country, what responsibilities might that investigator incur and toward whom?
Can an argument be made that all studies, even observational studies or assessments of disease prevalence, are in some sense interventions in the community studied?
Which responsibilities of researchers are connected to the researchers’ awareness of a problem and which are attached to the researchers’ intervention to study the problem?
Of the criteria offered by Lurie and Wolf, and by Fairchild and Bayer, for being relevantly “like Tuskegee,” which do you think are the most salient criteria?
Why does it matter whether the AIDS trials are “just like Tuskegee” or not?
Additional Resources
Ho, D. (1997, September 29). It’s AIDS, Not Tuskegee.
Time, http://www.time.com/time/magazine/1997/dom/970929/viewpoint.its_aids_not_.html
London, L. (2002). Ethical Oversight of Public Health Research: Can Rules and IRBs Make a Difference in Developing Countries?
American Journal of Public Health 92 (7), 1079-1084.
