This article from last year came across a listserv I'm on today. It discusses a question I think a lot about: What is the responsibility of researchers to buffer potentially harmful effects of data they generate about stigmatized minority populations?
They note that IRBs (Institutional Review Boards -- which reviews all proposed research projects involving human subjects) do not deal with this issue, noting that their guidebook issued by the Office for Human Research Protection simply states:
"Some behavioral research involves human subjects in studies of heredity and human behavior, genetics, race and IQ, psychobiology, or sociobiology. Vigorous ethical debates about these studies arise out of the fear that scientific data may be used to justify social stratification and prejudice, or that certain groups will appear to be genetically inferior. The possible use or misuse of research findings, however, should not be a matter for IRB review, despite the importance of this question"
And that the Code of Federal Regulations says:
"The IRB should not consider possible long-range effectsof applying knowledge gained in the research (for example, the possible effects of the research on public policy) as among those research risks that fall within the purview of its responsibility"
The article does not particularly provide any solutions (no surprise). It's primarily concerned with research that the the lead author conducted that could be read to "imply that undocumented persons are more likely to transmit tuberculosis than are documented foreign-born persons or persons born in the United States. These study results have the potential to further fuel the often fierce debate regarding undocumented immigrants in the United States."
The authors conclude simply that they remain concerned, and that there are benefits alongside the ethical drawbacks. So perhaps this is not the best article for guiding future research, but it highlights some critical ethical concerns for researchers who study minority populations.
I for one do not believe that you can separate the political context of the population you study from your research, and that as a researcher you have an obligation to mitigate potentially harmful effects of your research. This means not only being careful in the way you report your data, but also being careful to understand how your very research question may be influenced by the stigma surrounding the population you're studying. If you go into a community expecting to find problems, you will undoubtedly find them. Being open to finding positive effects of stigmatized phenomenon1 is critical to the production of ethical research.
1 See, for example, Geronimus, A. (1992). "The Weathering Hypothesis and the Health of African American Women and Infants: Evidence and Speculations." Ethnicity and Disease 1992(2): 207-221
Robert Walker posted this question on my Facebook automated re-post of this entry:
I'm not exactly sure what you're referring to here, Robert. But I'll give it a stab. The "buffer" I'm referring to here means something like making sure to spell out exactly what you found, and making sure to not overstate that finding or overemphasize particular data points that reinforce stigma (while ignoring or even not publishing data points that do not feed into that narrative). It may also include spelling out what the implications of this finding do and do not include (e.g. "While this may imply to some readers that _____, this may not be the case because ____").
Does that help?
Hey Trevor, thanks for the response! That was very clear, and helpful. - Rob