Springtime has many rites of passage attributed to it alone: garden parties, weddings and graduations just 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 season, 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 recommendations 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, kept our children home, and witnessed school closings, surgically-masked people in public settings, and hospital emergency room 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, it was 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.
There is a long and storied history of medical science and its abuses toward what it has considered the dregs of humanity: the poor, uneducated, and the “feeble-minded.” In the Jim Crow south, “Negro” was parlance for all of the above. The Immortal Life of Henrietta Lacks, a book on Blacks and bioethics by author Rebecca Skloot, tells the story of Henrietta Lacks, a Black woman who was thrust into the void when she developed cervical cancer. Born on a 1950s tobacco farm in the Jim Crow South meant that health care was relegated to the so-called public wards of Johns Hopkins University Hospital. The hospital was, at that time, one of the few that would see black clients. Without her consent, tissue samples were collected from Mrs. Lacks and developed in the cytology laboratories at Johns Hopkins. The cells thrived (unlike others collected samples) and were so prolific, they were sold throughout the United States and internationally to research labs. The HeLa cells, as they are known globally, have been used extensively in biomedical and pharmaceutical research, including the development of the polio vaccine, breast cancer treatment drugs, and human-origin insulin, and many, many others. Breakthroughs that have made lives better the world over. Sadly, these medical triumphs came at too high a price for the Lacks family, and specifically her children who were never aware of their mother’s contributions to science until an article was published and medical science came knocking at their doors (again) seeking additional genetic and biological tissue from them.
The Lacks’ family story is merely the most contemporary exposé of an unhealthy relationship between African Americans and the medical community at large, in matters related to trust and confidence. It begs the question, “How is the medical community responding to this lack of confidence?” A health care survey conducted in 2009 found that Blacks (as opposed to whites) were more likely to not trust their doctors when it came to addressing their health concerns, or explain treatment for medical conditions to their satisfaction. There continues to be an underlying element of mistrust between minority populations at any socioeconomic level and the American health care system at large. Clearly, the perception of mistrust from the African American community in particular is in largely caused by previous experiences with the health care system, and the history that has deepened that distrust.
The realities of the Tuskegee and HeLa experiments have the effect of maintaining and strengthening the distrust in the health care system by Blacks in ways that may be inestimable. It leaves many African Americans, as well as other underrepresented populations, wondering how they may fare better when assessing the health systems in existence. Fortunately, gains may be made via the newly adopted health reform bill, which includes provisions for improvements in the delivery of health services and information. The reform bill is not without flaws, however, and research study protocols continue to be a prickly area everywhere in health delivery.
The very structure of modern healthcare delivery systems depends upon these constructs to assure the safety and respect of its main consumer – the patient. Science and medicine have at their disposal disciplines to assist in the management and delivery of ethical health services. Every stakeholder in the health care industry must be implored to comply with the ethical principles of nonmaleficence (“first, do no harm”) and beneficence (“actively doing good”).
Bioethics review boards and panels are standing committees at most pharmaceutical research and hospital centers. Ethicists operating within the medical and pharmaceutical disciplines have designed reasoning frameworks that may be applied to the prickly topics that arise at the intersection of medicine and race.
Increased representation on these bioethical review boards by minorities and lay persons would assist in quality assurance for all health care consumers. The involvement of independent ‘watch-dog’ organization, such as Amnesty International may also help. For example, Amnesty International currently has an open study on the high mortality rate of pregnant and post-partum young, poor ~ frequently Black, women in the United States.
The truth is that many of the health consumer/patient protections in place currently, have come at the expense of human beings like the men in the Tuskegee program and Mrs. Henrietta Lacks. Government agencies entrusted with the public‘s health, organized medicine, and the pharmaceutical industry have much work to do to create a progressive, inclusive health care system that fosters trust and confidence. The health care system needs a check-up in the ethical ward, so to speak, to revitalize that trust. Our health care delivery system and all of its principals must be committed to both doing good, and avoiding evil.