Yet another aspect of racial disparity within the medical field has recently come to the fore. The U.S. Department of Health and Human Services Office of Minority Health has launched several initiatives, in partnership with the Baylor College of Medicine, to address the relative lack of access to medical research and clinical trials experienced by communities of color and ethnic minorities. For more information on the EDICT (Eliminating Disparities in Clinical Trials) Study, please visit this site, which is a partnership between Baylor College of Medicine and The Intercultural Cancer Council.
The preponderance of participants in clinical trials for new medications and treatments are white, and this uneven racial distribution of participants in clinical trials can skew research data by failing to reflect the specific effects of new treatments on people of color. One would imagine, for instance, that differences in kidney filtration rates (GFR) and metabolism would certainly offer insights into the relative effects of certain substances on people of different races, and recruiting more members of non-white communities is crucial for this process. As several articles point out, many communities and individuals lose access to potentially valuable treatment, and researchers lose by having precious little data from which larger generalizations and assessments can be extrapolated based upon their racially skewed and biased data. In the end, future generations suffer as important racial and ethnic differences vis-a-vis responses to treatment and disease are lost to the fog of ignorance. It is a lose-lose situation for all involved.
NPR's recent story on the initiative and its potential benefits also touched on the fact that, based on historical experience, African-Americans have learned to be mistrustful of scientific research. It is well known that slaves in the South during the Antebellum period were experimented upon, with gynecological procedures, surgeries and sterilizations performed on female slaves without their informed consent. This would be reason enough for widespread distrust.
Most infamously, the Tuskegee Syphilis Study, conducted between 1932 and 1972 in Alabama, denied treatment to poor, mostly illiterate African-American sharecroppers for their syphilitic condition. Horribly, the men were never informed that they were infected with syphilis, and were duped into thinking that they were receiving free treatment while the government researchers simply tracked how the disease ravaged their bodies. Even after penicillin was discovered to be the cure for the disease in 1947, the scientists withheld that information from the "participants" in the interest of watching how the disease would progress untreated until death. The study was stopped in 1972, and the fallout from this most heinous event in American medical and scientific history led to the establishment of Institutional Review Boards (IRBs) for the oversight and design of human biomedical research.
With African-Americans more likely to die of cancer than any other racial or ethnic group (according to a study by the American Cancer Society), establishing trust between people of color and the world of biomedical research is in the African-American community's interest. However, based upon historical racial experience, it is immediately understood why African-Americans might have a (perhaps healthy) distrust of the scientific and medical research communities. Even though open access to experimental treatments for cancers with poor prognoses is often a desperate patient's last hope for cure or palliation, fear of exploitation by researchers is an understandable reservation shared by many medically marginalized communities.
In my view, the studies undertaken by the Department of Health and Human Services and Baylor College Of Medicine are long overdue and sorely needed. One would hope that, with skill, cultural sensitivity, and a careful examination of past errors, misdeeds, and lapses of judgment, this "research divide" can be bridged for the benefit of all.