750 Maximum Working with Qualitative Data
Myriam Jeter
POLS-GEO 308
Associate Professor Zingher
July 15, 2020
Annotated Literature Review
Reverby, S. M. (2009). Examining Tuskegee: The infamous syphilis study and its legacy. Univ of North Carolina Press.
Reverby shows that the Tuskegee study of men who had untreated syphilis was more complex than what the story says. Although established on racist assumptions that designed the science and on lies to the subjects, the experiment did not stop many of the “patients” from receiving at least half-done cure for their syphilis.
The book suggests that the Study occurred partially because racism left African Americans poorly educated, sick, and desperate of any aid they could acquire. At the same time scientists and doctors could use medical certainty concerning race, both psychological and behavioral, to describe these circumstances, even when conflicting data on claimed racial variances and other explanations to prevalence rates occurred.
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Sacks, T. K. (2017). The single case study: Understanding the life history of a Tuskegee Syphilis Study descendant. SAGE Publications Ltd.
https://methods.sagepub.com/case/understanding-life-history-tuskegee-syphilis-study-descendant
In this book, Sacks claims that while making pivotal claims from a lone subject is unwise, the experiential findings collected from one case may be well characterized as a basic narrative that shows socially patterned phenomena. In this case, the defendant’s family history shows the nature of racial discrimination in the US healthcare structure which began with in the Tuskegee Study.
Although being a single case, it demonstrates the notions of historical trauma and mistrust that are frequently vague and hard to understand. By demonstrating these concepts, the case shows the significance of using theoretic hypotheses to ease empirical study.
Mays, V. M. (2012). The Legacy of the US Public Health Service Study of Untreated Syphilis in African American Men at Tuskegee on the Affordable Care Act and Health Care Reform Fifteen Years after President Clinton’s Apology. Ethics & behavior, 22(6), 411-418.
https://www.tandfonline.com/doi/abs/10.1080/10508422.2012.730808
Mays indicates that the study done on African American men in regard to treating syphilis was a wake up call. She discusses the legacy of the United States Public Healthcare Service, especially the Affordable Care Act. She talks about the following themes that emerge individual approval
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related to consequences in populations matters, and importance of healthier government oversight in healthcare and research.
The need for an individual’s approval when it comes to clinical testing and experimentation is vital for the success of a medical study. There should be no discrimination of any kind especially not by race.
Danis, M., Wilson, Y., & White, A. (2016). Bioethicists can and should contribute to addressing racism. The American Journal of Bioethics, 16(4), 3-12.
https://www.tandfonline.com/doi/abs/10.1080/15265161.2016.1145283
Danis addresses the issue that racism, especially in African American communities is complicated and deeply dependent on history. While this problem is morally worrying, bioethicists have not provided enough support in addressing this issue.
She looks at ways bioethicists can provide significant contributions to the teaching, research policy, development and training in response to the disturbing and tenacious forms of racism and implicit prejudices associated with it.
Isaac, B. (2004). The invention of racism in classical antiquity. Princeton University Press.
This book comprehensively traces the intellectual origins of racism back to classical antiquity. Benjamin Isaac’s orderly analysis of early social prejudices and stereotypes shows that some of
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those symbolize examples of racism, which in turn stirred the initial modern authors who established the more accustomed racist ideas.
The first part of the book reflects on general subjects in the history of discrimination. The book later provides a comprehensive analysis of proto-racism and biases toward specific groups of outsiders in the Greco-Roman world.
Hoberman, J. (2012). Black and blue: The origins and consequences of medical racism. Univ of California Press.
Hoberman exposes how the usual studies of medical racism inspect past medical mistreatments of black people and do not talk about the racially inspired behaviors and thinking of doctors practicing medicine today.
The book talks about how in the world of medicine, racism has penetrated all of the medical sub-groups, from psychiatry to cardiology to gynecology. The American medical institution does not willingly accept either current or historical information about medical racism.
Viruell-Fuentes, E. A., Miranda, P. Y., & Abdulrahim, S. (2012). More than culture: structural racism, intersectionality theory, and immigrant health. Social science & medicine, 75(12), 2099-2106.
https://www.sciencedirect.com/science/article/pii/S0277953612000822
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The authors highlight the faults of cultural enlightenments as currently engaged in the healthcare and argues for a change from individual culture centered contexts, to perceptions that address how several magnitudes of inequality interconnect to influence health outcomes.
A stronger stress on how place, racialization procedures, and immigration rules impact immigrant’s health. It suggests detailed lines of inquiry concerning immigrants’ contact with anti-immigrant policies and racism, and their health impact.
Shavers, V. L., & Shavers, B. S. (2006). Racism and health inequity among Americans. Journal of the National Medical Association, 98(3), 386.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2576116/
Shavers addresses racial inequalities in health results to a mixture of social aspects that impact exposure to risk factors, health conduct and admittance to and receipt of proper care. Tackling these disparities requires a system that encourages equity and commands accountability both in the health delivery systems and within the social environment.
The source talks about the role that prejudice in employment, housing, education, healthcare and the judicial system plays in the maintenance, origination and preservation of racial health differences to serve as contextual information. The result of targeted publicizing of dangerous products and environmental fairness are also discussed since they relate to racial inequalities in health.
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Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their distrust of the health care system: healthcare for diverse populations. Journal of cultural diversity, 14(2).
The authors talk about distrust in healthcare system by African Americans has a major influence on the relationship of clients and physicians. Length of the physician-patient association directly correlates with trust. Trust in turn is recognized as an essential component of the doctor-patient relation.
In this book, importance of trust and individual rights
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Works Cited
Danis, M., Wilson, Y., & White, A. (2016) Bioethicists Can and Should Contribute to
Addressing Racism. The American Journal of Bioethics.
Hoberman, J. (2012). Black and Blue: The Origins and Consequences of Medical Racism.
University of California Press.
Isaac, B. (2004). The Invention of Racism in Classical Antiquity. Princeton University Press.
Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their Distrust of
The Health Care System: Healthcare for Diverse Populations. Journal of Cultural Diversity.
Mays, V. M. (2012). The Legacy of the U.S. Public Health Service Study of Untreated Syphilis in African American Men at Tuskegee on the Affordable Care Act and Health Care Reform Fifteen Years after Clinton’s Apology. Ethics & Behavior.
Reverby, S. M. (2009). Examining Tuskegee: The Infamous Syphilis Study and Its Legacy.
University of North Carolina Press.
Sacks, T. K. (2017). The Single Case Study: Understanding the Life History of a Tuskegee
Syphilis Study Descendant. SAGE Publications Ltd.
Shavers, V. L., & Shavers, B. S. (2006) Racism and Health Inequity Among Americans. Journal
Of the National Medical Association.
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Viruell-Fuentes, E., A., Miranda, P. Y., & Abdulrahim, S. (2012). More than Culture: Structural
Racism, Intersectionality Theory, and Immigrant Health. Social Science & Medicine.
Racism and Biomedical Research: The Tuskegee Syphilis Study
Student’s Name
Institution Affiliation
Racism and Biomedical Research: The Tuskegee Syphilis
Historical racism; unconscious or otherwise exacerbates non-participation of African Americans in research projects, especially of a biomedical nature. Phelan and Link (2015) critically analyze this claim and try to establish some of the less pronounced ideologies related to health inequalities. The basis of this inquiry was to look into the ins and outs of minority non- participation and why exactly this may be a reflection of another Jim Crow era, an intensely racist age. As a means of data collection and analysis, self-reporting has proven even more challenging as results do not reflect some minorities. For them to be fully included in healthcare reforms, there essentially needs to be a revolutionizing in systems and procedures alike that maintain not only credibility but also trust levels as far as minority communities are concerned.
The dependent variable, as per the hypothesis happens to be non-participation. Whether or not an individual decides to take part in any particular study is pegged to specific variables. It may range from personal attitudes to institutional reasons and preferences. Specifically, non-participation, in this instance, varied because of the race card and was influenced by discriminatory practices in healthcare. Unfortunately, the inquiry recounts the horrors that occurred in the infamous Tuskegee clinical study that saw to an instant demonizing of medics and all health practitioners, regardless of their input in the incident. Racism is the independent variable that informs this study and controls all the other variables in a sense. The study reflected bias right from its inception. It sought to find an assortment of African American men between the age of 25 and 60 who had to be syphilitic. The age bracket already restricted the study in a sense because the average black syphilitic male happens to be from the age of 22 upwards. In the spirit of colourism, a theory that intently focuses on discriminate acts against darker complexioned individuals, the researchers sourced explicitly for illiterate and extremely poverty-stricken black individuals. It was effortless to find this category of people because they were extremely underprivileged back then. Racism had taken its course, and blacks were on the losing end. It is no secret that the study did not explicitly state that the individuals had to be above the age of 25. However, those who did not meet the age requirements were not considered. These racist acts determined the participation of vulnerable black men then and have been the basis for non-participation in the current society.
Reverby (2009) fashioned an intensely thorough study that examines Tuskegee. The study hypothesizes that the incident occurred because of a strong interrelation of factors. Reverby focuses on how race, sickness, desperation, and poor education levels all interacted to bring the incident to fruition. He discusses how these reflect some of the most detrimental combinations possible in a human being. The study recalls the fact that some of the subjects did not even know how to read. It means that they could have completely missed the entire point of these clinical tests, yet they had been provided with written consent forms disclosing the nature or effects of the procedures. The findings helped connect the non-compliance of African American subjects to even government-mandated clinical tests and research. Reverby confirms that statistics prove that the average African American, healthy or not, is now more cautious and borderline reluctant to participate in any study. These individuals now fear being put in a position where they could potentially lose their lives. Similarly, (Brondolo et al., 2009) are also in agreement with past literature that pegs healthcare issues to racism. Brondolo and his colleagues believe that the Tuskegee researchers deemed their subjects less than human. As a result, they disregarded protocol and ethical considerations. The study delves into the inequalities that minority ethnicities face whenever they go to health facilities seeking medical assistance. Some report that they are subjected to several bureaucratic procedures before they can receive treatment. Specifically, those who do not have insurance are handled inappropriately because they are viewed as potential financial burdens if they need to be admitted.
Shaver’s and Shaver’s (2006) study was one of the research that significantly contributed to the existing literature on the reasons for the apparent lack of participation among African Americans. Aside from mainstream media, no other outlet was vocal about the happenings of the Tuskegee syphilis study. The study highlighted how the malpractices of the project were publicized and deemed unethical at every particular stage. The entire medical community and even the judicial system were under fire for not candid as soon as it came to their attention. The effect of this was a severe loss of confidence in those whose hands they have placed their lives in. African American protests broke out soon enough in an attempt to seek justice for lost lives. An apology was released to that effect, but it only aggravated the situation because it did not feature an admission of mistakes for the discrepancies rather a justification of it.
The relationship between racism and non-participation is apparent and can be confirmed by the studies as described above. Due to the nature of discrimination and the fact that there were very few African American medical professionals back then, racism could have occurred without consequence. Theoretically, a (2017) study by Sacks investigates the life of a Tuskegee descendant. Despite him noticing that it could be minimal research, he uncovered the main effects of racism that ward off black people from participating in such studies. The individuals not only admitted to spreading the contagious illness to other individuals, but some even succumbed to it because of long periods of lack of treatment. The study took the city of Tuskegee as the unit of analysis because of the availability of ample literature concerning the topic of interest. The preference for this over social interactions, which was another standard unit of analysis in the relevant literature, was the need to provide different viewpoints of racism and its effects on non-participation.
Minority participation or the lack thereof is directly influenced by held attitudes and perceptions which affect trust levels between them and bioethicists. The dependent variables expressed by this hypothesis are the perceptions, beliefs, and trust levels of African American individuals towards white people, which affect their participation in biomedical research studies. Theories of white supremacy back the variation in these concepts. African Americans to date hold the belief that white people believe that they are superior to them. It is evident in the job market, education facilities, and, most recently, healthcare facilities. Hence, how they react to certain situations and how they perceive white people is influenced by micro-aggressions, such as instituting clinical trials for blacks only. The underlying assumption by many is that whites are too superior to be subjected to such tests as they should not bear the consequences in case they are unfavorable. Non-participation, which is the independent variable, informs all the dependent variables to some extent. It can be intricately described by the planned behavior theory, which attests to the influence of one’s attitudes and preconceived notions on their resultant actions. (Kennedy et al., 2007) describe how a black man is less likely to return for further consultation upon the first visitation to a hospital. The school of thought being applied here is that they were poorly treated the first time and will not want to return even if necessary. The theory is cognitive and shows how people associate experiences with reality. Therefore, African Americans are less likely to self-report or participate in biomedical research studies because they assume that they will be treated with less respect than a white subject. Alternatively, the reasoning can be viewed using the concept of acculturation. Medical policies are over-dependent on culture to determine the health status of specific individuals. Due to this unidirectional mode of perceiving minority groups, they are biased toward self-reporting expectations.
Isaac (2004) traced the attitudes of African American individual participants to a period of classical antiquity. It characterized the intersections of important civilizations but contributed to an overwhelming rate of discrimination activities. He based his hypothesis on the history of race. He tried to relate conclusively is to present times skewed perceptions despite an era of improvement as far as conscious racism is concerned. African Americans still attach feelings of resentment to heinous acts perpetrated by whites on their ancestors. Perceptions are cultured and can be passed on from one generation to the next. The biggest fear is that even when the world has made significant strides from racial prejudice, there could still be individuals in positions on power exerting these prejudices because racism is inherent. Ethnic minorities possess a negative attitude towards mental health issues, and this also affects whether or not they participate in biomedical research involving mental health. Historically, black people were severely affected by other issues that they considered more serious. These ranged from inadequate housing, illnesses, and high levels of illiteracy, according to Fernando (2004). They regarded mental instability as a non-issue and most commonly attributed it to lack of proper sanitary conditions, among other struggles. To date, some African Americans still hold this perception. Concerning this inquiry, it affects their attitude and hampers their participation levels. Some African Americans typically feel like they are above such ‘minute’ issues such as mental wellness. It prevents them from subjecting themselves to mental wellness tests experimental or not. Some have even referred to them as a waste of resources because it involves seeing psychiatrists and other trained professionals who basically ‘tell you how you feel.’
Further literature, as discussed by (Viruell-Fuentes et al., 2012), gives a case study of immigrants and how their treatment is the epitome of structural racism. Anti-immigration laws and policies affect how people view these individuals. They are undervalued and treated as lesser beings by these restrictive laws. The immigrants here are used as a representation of minority groups who, by the treatment received, change their attitudes for the worst. Whenever their attitudes are affected, it has a significant impact on their overall health status. Eventually, they stop following medical protocol. The individuals report being handled with contempt by medics and as if they are ‘riddled with disease.’ The fear is that if that is typically treated, how much more will it escalate where clinical testing is concerned? Unless the specific policies are looked into, they are not likely to alter how they view medicine and how it is practiced. Basing my argument on theoretical information sourced from the cognitive theories, people tend to form attitudes, beliefs, and perceptions based on the cultures that they have been conditioned to. A consistent culture of racism tends to skew personal belief systems. Due to this fact, the relationship between attitudes and non-participation is not hard to construct. The hypothesis draws its conclusive arguments from ethnicities as its primary unit of analysis. It proved more useful because it provided their individual and collective experiences from which they formed their particular personal or shared perspectives and attitudes. Other studies may focus on specific cultures because they need to prove that attitude is pegged to culture. However, it would limit the study in a sense and provide less than adequate data about race, which is the bigger picture here.
Addressing African American non-participation from bioethics and racial policing standpoint will increase minority confidence and significantly reduce the malpractice, injustices, and mistrust levels associated with racism. As discussed above, the self-reporting of minority groups is low. These groups are reluctant to participate in research studies because of the attitudes they hold, conscious racism perpetrated against them since the Tuskegee era, and the present anti-racism policies. The dependent variables in this supporting hypothesis are weak anti-racial policies that do not significantly address injustices against black people and bioethics and that they are not upheld at times. Ethical concepts best explain the variation in these variables regarding fair treatment. Everyone is entitled to humane treatment regardless of ethnicity and other factors that may bring about significant differences. How fairly individuals are treated will influence whether or not they consider policies to be weak or bioethics as being ignored. Presently, non-participation is strongly influenced by a lack of strict consideration of bioethics and poor implementation of racial policies. According to Hoberman (2012), medical practitioners ought to be criticized for not calling out institutional racism for what it is. They condemn injustices at the front lines but rarely label them for what they are; racist and ethical violations.
Past literature relating to the same, references the Tuskegee legacy where the professionals practiced unethical experimentation on both young and old underprivileged black men. In the study, Mays (2012) recalls how these individuals were denied the freedom of consent as far as bioethics is concerned. When this happens, the individuals affected lack free will, which is a crucial part of clinical trials. The African Americans view this as a history of oppression and reserve the right to refuse to participate in such activities that may endanger their lives in the long run. Bioethicists disregard the training received either because of the bureaucratic nature of procedures or inherent racism. Whatever the reason, it increases mistrust. In recent times, the African American population has become significantly literate and can lobby for their rights. If they feel undervalued or unattended to, they are at liberty to report such cases. Despite this, how these complaints are addressed is still a point of contention.
(Danis et al., 2016) appeals to bioethicists and refers to them as the keys to addressing flawed national policing and research policing as far as racism is concerned. Weak policies are referenced after the Tuskegee incident, which was poorly handled. After it came to light that these professionals had misled the general public into participating in life-threatening activities, no action was taken against them. Back then, the African American individuals were merely issued with an apology. In recent times, anti-racism policies have been buffed up, but there may still be issues with their implementation. Bioethicists could address this as far as training and development of racism responses are concerned. If the general assumption is that racist acts will go unpunished if they happen, then African American people and minorities alike will shy from participating in these studies. The relationship between weak laws, bioethical faults, and non- participation can be illustrated by Paradies (2006) assesses self-reporting mechanisms and how they are affected by the social constructs of race and ethics. He confirms the expectation of this study that African Americans are more reluctant than whites to participate in biomedical research because of stressors associated with weak laws. The assumption is that reporting instances of racism will cost one more mentally speaking and even financially. For this particular hypothesis, the preferred unit of analysis was laws both of a regulatory nature and a guideline perspective. The rationale behind choosing these as the primary units of analysis is that they provided ample reasons to support the research question. It was also consistent with some past studies, which meant that accuracy the information was accurate and easy to uphold or disprove.
In conclusion, African Americans are visibly less eager to participate in biomedical researches as compared to white people because of the historical influence or racism in the biomedical field. Therefore, institutional racism needs to be thoroughly addressed from the perpetrator’s point of view, as far as the victim’s attitudes are concerned and at a policing level for African Americans’ full participation.
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