| I have another IOU post I need to write in the near future about a fascinating book I am currently reading, "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present"
by Harriet A. Washington. This topic is particularly timely as non-biomedical researchers' complaints about overzealous IRBs have seeped off of the pages of higher ed focussed publications onto the pages of the mainstream press. I have to admit that I cannot relate to these complaints. If anything, I feel that historically IRBs often have been in the best of times too lax in protecting human subjects and in the worse, complicit in outright abuses when research participants are Black and poor. Perhaps some behavioral and social researchers assume that lessons like the ones in "Medical Apartheid" do not apply to their own research. If so, I think they are very wrong.
So, I do have lots to say, and hopefully I will get around to this post soon. (Along with half a dozen others sitting in my "drafts" folder...) In the meantime, please enjoy this entry from last February. |
The findings of this recently published study were called by some "surprising." (NPR report here.) However, it came as no surprise to me. I have frequently wondered if mistrust of the medical establishment specifically and scientific research generally is really the whole story as to why more folks of color do not find their way into research participant pools.
Hopefully researchers--all, not just those conducting health and medical research--will be motivated to stop using the ghost of the Tuskegee syphillis study as an excuse for not being more proactive in recruiting minority participants. As the report's authors atate:
To ensure the generalizability of research results, it is important that all groups participate in health research. However, many commentators claim that racial and ethnic minority groups, especially in the US, are less willing to participate in health research.... It is widely believed that racial and ethnic minority groups in the US, especially African-Americans, are less willing than non-Hispanic whites to participate in health research. Many commentators believe that this relative unwillingness traces to past abuses, especially the notorious Tuskegee Syphilis Study, described as ‘‘the singular reason behind African-American distrust of the institutions of medicine and public health."
The claim that racial and ethnic minority groups in the US are less willing to participate in health research seems to be validated by data showing that minority groups are underrepresented in at least some health research studies. Yet, willingness to participate is just one factor that influences whether individual patients and patient groups participate in health research. Other factors include whether they are informed of research opportunities, whether they are medically eligible to participate, and whether their personal circumstances, including child care demands, job flexibility, and geographic proximity to research sites, allow them to participate.
Simply assuming that minority groups’ underrepresentation in some health studies is a result of their being less willing to participate may focus efforts aimed at increasing their participation on changing minority attitudes. If, however, minorities are equally willing to participate, and their lower participation in some studies traces to other factors, these efforts may prove ineffective, or even counterproductive. The assumption that minority groups are less willing to participate in health research also may inadvertently increase stigmatization, suggesting that minority groups are unwilling to bear their fair share of the burdens required to improve medical care.
(Emphasis added.)
HOWEVER, although I agree with the above, I also think it is important for graduate students in fields involving empirical research with human beings to be knowledgable about the Tuskegee incident. This is not just "Black History"; this is a major part of "Science History." And it always comes as such a surprise to me how many graduate students (indeed, how many faculty folks) know little to nothing about this chapter in scientific history.
A good first stop is the web site for the Tuskegee University National Center for Bioethics; Especially see the Course Materials page.
A while back the blog of the American Journal of Bioethics featured this piece on research abuses still going on in poor communities, including those populated by folks of color:
The poor, who are most vulnerable are being offered cash and promises of therapeutic efficacy ("depressed? got no money for psychotherapy? we will give you free evaluations and study medications...") to serve as faceless guinea pigs in multiple and poorly policed experiments in labs that boggle the mind. Troy Duster famously referred to "credit card eugenics," a new form of genetic selection dominated by a market rather than the state. I submit that clinical trials in the United States have become a "welfare Tuskegee."
...Bioethics has been asleep at this switch for too long, teaching responsible research courses that hang on the Tuskegee experiment as though we have come so far in fifty years.
Also see this 2002 NPR report, Remembering Tuskegee.
More general information related to social, behavioral, and biomedical research and racism:
The American Psychological Association's Annotated Bibliography of Psychology and Racism is quite extensive (although it does not appear to have been updated in some time); Also see the APA's Topic Page on Race.
This Statement of the American Sociological Association on the Importance of Collecting Data and Doing Social Scientific Research on Race reads in part:
Sociologists have long examined how race—a social concept that changes over time—has been used to place people in categories. Some scientists and policymakers now contend that research using the concept of race perpetuates the negative consequences of thinking in racial terms. Others argue that measuring differential experiences, treatment, and outcomes across racial categories is necessary to track disparities and to inform policymaking to achieve greater social justice. The American Sociological Association (ASA), an association of some 13,000 U.S. and international sociologists, finds greater merit in the latter point of view. Sociological scholarship on “race� provides scientific evidence in the current scientific and civic debate over the social consequences of the existing categorizations and perceptions of race; allows scholars to document how race shapes social ranking, access to resources, and life experiences; and advances understanding of this important dimension of social life, which in turn advances social justice. Refusing to acknowledge the fact of racial classification, feelings, and actions, and refusing to measure their consequences will not eliminate racial inequalities. At best, it will preserve the status quo.
I've previously mentioned this 2005 conference I attended, Proposals for the Responsible Use of Racial and Ethical Categories in Biomedical Research. An annotated bibliography can be found here (pdf), and videos of the presentations can be viewed from this page.
Finally, I have previously written here about research on foster children.
Posted by perry032 at March 5, 2007 10:33 PM