Beyond good and evil: Blacks, ethics and the health care system

“If we want our study samples to be broadly representative, then we should make every effort to make our institutions equally representative by increasing the presence of minority clinicians, scientists and members of research teams and institutional review boards. If we want minority communities to participate in our work, we must first fix the racial and ethnic imbalance that continues to tilt our ivory towers.” — Somnath Saha, M.D., M.P.H., of the Portland VA Medical Center, Oregon

Springtime has many rites of passage attributed to it alone: garden parties, weddings and graduations, to name a few. As I reflected on these ideas.

I began to consider the spring season of 2009, and far less romantic notions. During last year’s spring, many American’s stood aghast as an unseasonable breakout of influenza ripped through the country. Health professionals and the general public scrambled to keep up with the recommends and precautions being issued via health-related government agencies like the Centers for Disease Control (CDC) and NIH (National Institute of Health).

Many of us living in large metro areas saw the health crisis began to hit home as both children and adults in these urban communities lost the struggle with a newly identified influenza, given the unusual moniker H1N1. We began to decline hugs and handshakes from one another and keep our children home, while witnessing school closures, dozens of surgically-masked people walking the streets, and hospital ER lines that wound around city blocks.

The predictions for the fall flu season were exceptionally grim, and the race to develop a vaccine against the H1N1 strain began in fervor. By October 2009, a vaccine was available, and the Centers for Disease Control (CDC) identified high risk populations who should receive the vaccine. Urban populations, specifically African Americans, were encouraged to get the vaccine. To the bewilderment of the medical establishment, the Black community viewed the invitation with suspicion and doubt. Why, people wondered, after seeing the frenzied outbreak of this illness the previous spring, were Blacks now balking at receiving the vaccine designed to prevent it?  One possible suggestion is the lack of confidence held by many in the African American community for the health care system.

Black distrust of the health care system is shrouded in the history that bears witness to a system built on the bodies of our ancestors. Attorney and author Vernellia R. Randall’s book, Dying While Black, charts this phenomenon, beginning in the nineteenth century and continuing through the modern period, including the allegations that AIDS was created by a government sanctioned health care system. Her research illustrates to us how Blacks have been exploited by the medical sciences for the purpose of research, often without knowledge or consent. Here we find stories shared by Black residents of northern and southern cities about the “night doctors” – medical personnel that would grab Black citizens for use in experiments after the sun went down. Although this has never been substantially documented, there is evidence that during this period the bodies of the Black deceased were systematically being removed from their graves for the purpose of medical research.

During the 1890s, the American health care system experienced an unprecedented boom in research and scientific growth that was internationally noted as bold and brilliant, and not being performed anywhere else on earth. Tragically, these advances were at the expense of the health and welfare of the Blacks and other poor populations in the country.  Enslaved Blacks in particular served as instructional material for teaching medical students both here and abroad.

There are several well researched and documented instances of medical abuse and misconduct where Blacks have been subjects of ill-advised, if not patently criminal research studies. The Tuskegee Syphilis Experiment is one such case. The Tuskegee Experiment involved four hundred African American men in a government-sponsored study to research the effects of untreated syphilis. This “study” began a few years prior to the development and use of penicillin as an effective treatment for syphilis. Yet it continued for nearly thirty years after the known availability of effective treatment. The men involved with the study were never offered the antibiotic. In fact, the intended end point of the research experiment was the post-mortem exam of each participant to study the ravages of the disease on the Black male vis-à-vis that of the white population.

Unfortunately, the Tuskegee debacle is not an isolated event; many more instances of bioethical misconduct occurred in the mid- and late twentieth century period. During the 1960s and ‘70s, cases became exposed all over the country.  Black prisoners were used for skin-testing experimental drugs; blood samples were obtained from thousands of Black boys to test for “anemia” (the blood was actually being collected for a study on the genetic predisposition to criminal activity); young and poor Black women were used to test a device for terminating pregnancy that resulted in severe bleeding and total hysterectomy; a Sickle Cell Anemia testing program breached medical confidentiality, leading to poorly managed “genetic counseling” services which seemed to serve as Black population control and genocide. The list goes on.

1 2