Original Commentary by BEI Young Professionals member Olivette Burton, MBe, MSW.
The National Research Act and Belmont Commission (1974) came about in direct response to unethical experimentation on Black Americans by medical science and researchers involved in Tuskegee. The report that was produced by the Commission, the Belmont Report, is a significant part of Black history and can and should be taught, in schools of social work, education, journalism and even high schools as such instead of in the context and purview of medical missteps and scientific impropriety— as it customarily is presented. The Belmont Report provides an excellent example of effective government at work as it gives valuable insight into the considerations that lead to pragmatic ideas that are simple yet dynamic and that do not lose their shape or focus regardless of the changing environments and needs of research. It provides a lesson in civics and shows how social consciousness and activism go together to empower persons and energize public policy towards a better society. It reminded this country and ascribed dignity and character to a group of persons who were born with it but who had been stripped of it because of social constructs and institutional barriers to equality. It is the relationship with the past that allowed the Belmont Report and its creators to define a blueprint for the ethical treatment in research of all persons regardless of color that subsequently inspired higher levels of accountability in science towards the preservation of human rights. The Belmont Report is an important document in Black history; it ranks right up there with the Emancipation proclamation. It is appropriate— at all times but especially in light of recent Black History Month celebrations— that the connection between Tuskegee and the Belmont Report be recognized and discussed as a distinct part of black history.
More than any other ethnic or racial group in America, Blacks have been routinely subjected to some of the harshest experimentation in the name of science and medicine. The activities of J. Marion Sims, the father of modern gynecology whom operated on enslaved African women in the 1840s, one woman over 30 times (Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, Harriet Washington), the 1927 radiation study by local healthcare officials that resulted in severely irradiating the skulls, tissue and brain matter of 10 Black children who were only five years old in Lyles Station, Indiana under the guise of finding a cure for ringworm (Brett Leonard documentary A hole in the Head: A Life Revealed) and the Holmesburg prison study in which men’s flesh were set afire (Allen M. Hornblum Acres of Skin: Human experiments at Holmesburg Prison) are just some examples among many of the abuses at the hands of medical and scientific researchers suffered by Blacks innocently and unwittingly involved in unethical human subject research. They were a sample that was convenient, poor, uneducated and apparently viewed as less than human.
It was only 67 years after the Emancipation Proclamation was signed that the government sanctioned Tuskegee syphilis experiment began. With approval from the scientific, medical and academic communities the originally proposed 6-month public health study, to track the effects and progression of syphilis in humans, was continued by researchers for approximately 40 years. Even after a cure for syphilis was discovered in 1947 and became available for use, the subjects involved in the study, 399 poor Black men of the deep south (and by extension their families and partners), treatment was purposely withheld from them. (Washington, 2006) Nor were they told what they had or asked for their consent to participate in the research. There were numerous other wrongs committed against these men by actors in the research community at that time. Left to die painful deaths and transmit the disease to sexual partners, Tuskegee is one of the most, if not the most, infamous case of American research misconduct, deception and immoral unconscionable scientific research behavior demonstrated against citizens. It is the mother of everything unethical; never gets old, never loses it power or relevance about scientific research and medical treatments among Blacks and other ethnic communities and people living here today in this so-called post racial society. It should never be forgotten.
The public’s outcry for justice about the abuses inherent in the study prompted the formulation of a presidential ordered commission to look into the mistreatment of blacks involved in the Tuskegee experiment. Over the span of four years, a council of 11 individuals, comprised of social workers, ethicists, theologians, lawyers, professionals from socio behavioral backgrounds and researchers, convened to create a document expressly out of the Black experience in research. The Belmont Report, unique in its focus and origin, was the product or their work. It is very much a part of American history, Black American History and bioethics; as it represents the government’s response to inappropriate unethical behavior displayed towards Blacks in Tuskegee. The Commission and those consulted, provided thoughtful consideration for the vulnerability of these persons, and by extension to everyone else, consciously or unconsciously involved in research studies (i.e. the mentally ill, prisoners, poor, ethnic women and children), and laid down an analytical framework for accountability in conducting research. The three principles that it identified are the foundation for protection of human subject research subjects; respect for persons and their autonomy, beneficence and justice.
In this year of 2013, we are only a mere 41 years post Tuskegee. The wounds are still raw, still open as evidenced by the mistrust of Black people and other people of color, in this country and outside of it familiar with the study. It affects the way we seek care, absorb and analyze public health messages, communicate with healthcare providers, become and stay compliant with our care, view conversations by medical personnel, participate in research studies and organ donation initiatives. There has been no shortage of newspaper articles about misdiagnosis (E.g. Daily News, March 2013 Laverne Wilkerson), undiagnosed conditions for medical treatment within the community. Relatively recently (2010) Rebecca Skloot’s book about Henrietta Lacks gained widespread attention and spurred spirited dialogue in book clubs and medical/academic institutions around the country as to what aspects of her case were morally defensible.
We are just over 34 years removed from the set of recommendations made in a report by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, known as the Belmont Report. The Belmont Report stresses the principles held sacrosanct now among morally upright persons involved in conducting and reviewing research activities. Within the context of this relatively recent history we need to sharpen our focus towards thinking about research participants and our obligation as researchers in a world that is really not a post racial, post gender society and still gives evidence of systemic inequalities.