Author: Eva Pastor
Date: 02-06-10 20:19
Source: Coduc9ve Chronicle
URL: http://cchronicle.com/2010/02/in-the-name-of-science/
Date published: February 5th 2010
In the name of science…
By Eryn-Ashlei Bailey | Published: February 5, 2010
The pursuit of knowledge and scientific advancement is a worthy endeavor that will ultimately augment the survival of human kind. The ability of scientists to breakthrough biological, psychological, and physiological barriers is necessary for the evolutionary fitness of humanity. Therefore, there is an incredible amount of power in the hands and under the microscopes of scientists. Although many scientists endeavor to make healthy advancements, and doctors take the Hippocratic oath “To due no harm”, history shows aberrations from these oaths with devastating consequences for the subjects involved.
The Tuskegee Syphilis Study resulted in mistreatment of black male subjects suffering from syphilis in the American South. Initially, the idea of the Julius Rosewald Fund was to improve the health care system for African American males in the South in the early 20th century. Many African-American males were testing positive for syphilis at the time, and few if any had access to viable health care. (Ironically, Americans are still battling the access of health care to date.) In an attempt to bridge this gap, the Julius Rosewald Fund donated monies to initiate effective health care measure for African-Americans. As the saying goes, ”the road to hell was surely paved with good intentions” in the case of the Tuskegee Syphilis Study.
In 1932, the Public Health Services began a research study entitled: “Tuskegee Study of Untreated Syphilis in the Negro Male”. Because the Tuskegee Institute was closely tied to the African-American community, recruitment from this site would allow for adequate participants of the desired population. Appealing to potential participants was facilitated by the fact that most African-American males at the time were underfed, underpaid, and not receiving health care. As compensation, subjects received free meals, transportation, and burial expenses. To the modern reader of this article, that compensation package is absolutely absurd. However, at the time of the study, this compensation package was appropriate to the population served. The study initially included 600 black males of which 399 tested positive for syphilis and 201 did not. The study was proposed to last only 6 months, but in fact lasted for 40 years. At the onset of a research study involving human subjects, the individuals involved are required to read and sign a consent form. This consent form must be “informed” making subjects aware of potential risks and benefits of the study as well as explaining the general aim of the study. However, at the time of the Tuskegee study, these firm regulations were not in place and none of the subjects were aware of the study details. As an explanation, subjects were told that they were being treated for “bad blood” which could have ranged from fatigue, anemia, or syphilis. Participants who tested positive for syphilis were not made aware of their health condition either.
As the Great Depression hit, the Julius Rosewald Fund was devastated and hence unable to continue funding efforts at Tuskegee Institute. As a result, the Tuskegee Syphilis study was at risk of ending abruptly. Dr. Taliferro Clark suggested that the study continue by studying untreated syphilis. Research ethics and respect for human subjects was completely unconsidered at acceptance of this suggestion. Untreated syphilis causes organ and brain damage and birth defects. Unbeknown to the subjects, they were putting their wives and partners at risk unknowingly and putting their offspring at serious risk as well.
In 1943, penicillin became a viable and effective treatment for syphilis. The Public Health Service administered penicillin to people who tested positive for syphilis. However this treatment was not made available to research subjects. In fact, efforts by outside agencies to administer penicillin to the subjects were thwarted. In 1972, an internal leak to the press aired the horrific and unethical procedures of the Tuskegee Syphilis study which led to a discontinuation of the study. In 1973, $10,000,000 out of court settlement was put in place to participants of the research study. Along with this pay out, life-time free medical services and burial expenses were provided to participants. In 1975, the wives, widows, and children of these participants were included in this program.
Finding the silver lining in a case like the Tuskegee Syphilis Study is a trying task. However, the exposure of these unethical practices led to the codification for protection of human subjects. In research studies including human subjects, strict inclusion/exclusion criteria exist, patient education is mandatory, and informed consent includes a layman explanation of the study in tandem with further explanation provided by the study’s medical doctor.
Recently,a book was published by Rebecca Skloot entitled “The immortal life of Henrietta Lacks”. This non-fiction piece discusses the immortal and immoral handling of cancerous cells found in the body of Henrietta Lacks, a poor and illiterate black woman who unfortunately suffered from cervical cancer. After she died, cancerous cells were extracted from her body without the knowledge or consent of her family. These cells rapidly reproduced and are now available world-wide for billions of dollars. Her cells are named “HeLa”and have been used to study leukemia, herpes, AIDS, Parkinson’s disease and a number of other maladies. The advantage of having her immortal cells is indubitably helpful in a scientific pursuit. But, it would also be helpful to her family to see some of the proceeds from the harvesting of her cells. Of course, her family has yet to see a dime and still don’t have access to medical insurance. This book also discusses “night doctors” who would roam the streets at night and kidnap unknowing black citizens to conduct experiments on them.
Despite these breaches in science, there are lessons yet to be learned as scientists have continued to toe the line of ethical and unethical. Please stay plugged in for more posts on Black History Month.
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