Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present is a gripping recount of the history of medical abuses perpetrated against blacks in America. Harriet A. Washington originally published this book in 2007. It is a careful look at how throughout history, beginning with slavery, blacks have been misused and mislead in the name of progressing medicine. She also points out how medical abuses have occurred not only in black populations, but also to poor whites and Latinos. It is a well researched and documented book. Washington also takes the opportunity to stress the importance, despite history, of blacks participating willingly and knowingly in medical research.
Medical Apartheid is broken up into three parts. The following summary is taken directly from the book:
Part 1, “A Troubling Tradition,” takes a chronological approach to the role of African Americans in early American medicine. It stresses the experimental abuse and exploitation of African Americans from the first encounters in the New World through the post–Civil War era and then up until the Tuskegee Syphilis Study, which began in 1932. Part 2, “The Usual Subjects,” covers the period from the early twentieth century to the present day in a roughly chronological manner. However, it departs from strict chronology in favor of an analysis of specific types of vulnerable subjects—children, soldiers, and hospital patients—used in research conducted by institutions ranging from the federal government to private corporations. Part 3, “Race, Technology, and Medicine,” examines contemporary research issues, including genetic research, investigations into emerging diseases, and bioterrorism. In the epilogue, “Medical Research with Blacks Today,” I discuss how the worst abuses have been replaced by more subtle threats to the rights of the individual to choose whether and when to participate in medical research. Finally, the appendix directs readers to a wealth of guidelines and regulations to help them navigate clinical trials.
Most people are familiar with the Tuskegee experiments that went on for years. But many people aren’t aware of the myriad other experimentation or withholding of medical care that occurred before and after that. The book also goes a step further by calling attention to medical research shifting outside of the United States. Because laws and extreme oversight has been put in place to prevent the atrocities of the past from occurring again, many companies have shifted to experimenting on third world populations, again without their knowledge or consent. Additionally, even though there are laws in place to prevent medical research taking place without informed consent of the patient, there is still withholding of adequate medical care for the poor, especially blacks. The rate at which blacks die from type II diabetes, breast cancer and other chronic illness is exponentially higher than that of whites. This is primarily due to lack of access to healthcare and a lack of trust in doctors on the part of the patients.
What Worked For Me
Ms. Washington is able to maintain a sense of objectivity. While this book is horrifying and gripping, the author manages to, for the most part, remain objective about the information she is presenting. I imagine this was not an easy task. She doesn’t let emotions seep into the words. Rather, she presents the facts as she knows them and allows the reader to have their own reaction. This is tempered though with her opinion that blacks, all minorities really, need to participate in credible medical research.
The book is very well researched. I didn’t check all of her facts, but I did do some spot checks. Though it is well written I do urge people to always do some independent research. Just because it’s in a book doesn’t make it correct. It is evident that she took her time to find books, letters, patient files and searched archives in order to present this information. It is not merely speculation supported by conjecture.
Medical Apartheid does a great job of bringing little known events to the forefront. I admit there were many events and stories I had never heard of before. She takes her time to look at these events and presents a case for it being mistreatment. However, she does the opposite equally well. There are some events when examined closer were probably not instances of abuse, but rather a reluctance on the part of black people to participate in the health care system. A system that historically had not served them well. And in many regards, continues to not serve them well. One such story I was aware of but learned about more is the purpose behind the creation of Planned Parenthood. While this organization does a great deal of good for women in poor communities Margaret Sanger started it with the purpose to sterilize black women in order to control the growth of the black population. She is heralded as the champion for birth control. The little known facts are that black women were used a test subjects of new types of birth control which ended up rendering them unable to conceive children at best, resulted in death at worst. When the birth control pills were deemed safe and effective only then were they provided to white women. Read this book to find out what a Mississippi appendectomy is.
Her call to action for blacks to participate in medical research is a good one. I know. You probably just audibly gasped, but follow me here. I have worked in health care, specifically medical devices, for the majority of my career – 13 years of my 20 years. Blacks and Hispanics are notably absent from clinical trials. The problem with this is that medical therapies and pharmaceuticals then become geared toward white men and women. Understand that this means when a new therapy is released to market along with the required clinical trial data that in most cases white men are represented. The safety and efficacy data supports the use of devices and drugs in white men, followed by white women. These companies cannot attest to the safety and efficacy of these medical advances in people of color. Meaning that a therapy that proves highly effective in a white male might kill a black woman. This happens for two reasons, among others. One, many sites (hospitals) that participate in clinical trials are in mostly white areas with populations that have some sort of health insurance to cover the procedure and they are more likely to receive better care in general. Two, minorities and poor whites are reluctant to participate in clinical trials, even credible ones, because of the perceived threat from history of medical violence against them. The gap in care is referred to as healthcare disparity. This is so much an issue that Boston Scientific, a major global medical device company, announced its effort in 2014 to recruit more people of color into clinical trials as a part of its Close the Gap initiative.
What Didn’t Work For Me
The rehashing of already discussed topics at times was confusing. Ms. Washington in an effort, I believe, to connect the three parts of the book often recalled content from the previous parts of the book. Ideally, this is good authorship to tell a story. What threw me is that the book is very fact heavy. During the rehashing of certain facts, if you forgot about it from when you first read it you weren’t quite sure how it connected. This didn’t happen often. For example, she spends a good deal of time talking about grave robbing for black bodies throughout the book. It seemed to be a recurring theme for her. While definitely a vile practice that needed illumination and inclusion in this book, I was more interested in what was happening to the living. Though I believe her continually bringing this up was to help support her argument that blacks don’t now willingly participate in medical research due to stories of grave robbing being passed down through the generations.
I would have like more exploration into the exclusion of clinical trials of minorities and poor whites. While blacks are reluctant to willingly participate, for good reason, in credible studies Ms. Washington doesn’t explore in more detail how sites are selected for clinical trials. While she is urging people to participate there is also the responsibility of companies to choose sites that are more inclusive of the broader American demographic. Just as many hospitals in wealthy or affluent areas should be chosen as in poor areas. Even though blacks and whites are both likely to develop Peripheral Arterial Disease (PAD), for example, blacks are more likely to suffer a lower limb amputation while the white person is more likely to receive limb salvage treatment. In short, the black person isn’t likely to be given the opportunity to participate in a clinical trial of a therapy that could potentially prevent limb amputation.
Read this book. This book is difficult to read. Some parts of the book will disturb you. Some parts may make you angry. Other parts will make you want to move to a cave. There is so much more beyond the Tuskegee experiment that we don’t often hear about. This book is great for creating knowledge but even the author herself states that the facts of the book shouldn’t prevent minorities from participating in medical research. Minorities should be well informed and knowledgeable before agreeing to be included in the trial. Ask questions to be make sure the clinical trial is adequately adjudicated meaning that there is an oversight board and who is on that board. The board should include at least two people with no vested interest in the outcome of the trial. The Food and Drug Administration, FDA, requires that all clinical trials be registered. Check the Clinical Trials site at www.clinicaltrials.gov to ensure the trial is listed along with the trial sites. And request an independent patient advocate to walk you through the parameters of the trial. Ask the doctor if he or she or any other medical staff have a vested interest in the company that developed the therapy. You want to know if the physician is paid by the company to speak for them, write journal articles, proctor on their behalf, etc. This isn’t a knockout question but you do need to know if they have a vested interest in the company itself. Physicians are required by law to reveal these as potential conflicts of interest.
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