Book World Live

A fresh account of the Tuskegee study, including new information about the internal politics of the panel charged by the Department of Health, Education and Welfare with investigating it in 1972, lies at the center of Harriet A. Washington's courageous and poignant book. The balance of "Medical Apartheid" reveals, with arresting detail, that this scandal was neither the first chapter nor the last in the exploitation of black subjects in U.S. medical research. -- Review: Unequal Treatment, Jan. 7, 2006.

Harriet A. Washington, author of "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present," will be online to field questions and comments about her book and her years of research on the topic. Read the first chapter of Washington's book.

Harriet A. Washington is a medical ethicist and journalist. She has been a fellow in ethics at the Harvard Medical School, a fellow at the Harvard School of Public Health, and a senior research scholar at the National Center for Bioethics at Tuskegee University.

Join Book World Live each Tuesday at 3 p.m. ET for a discussion based on a story or review in each Sunday's Book World section.

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Washington DC: The deaf people at my work complained about young deaf kids having cochlear implants. Those kids have no rights since their hearing parents decided what their doctors recommend. Seemed the whole deaf culture is being changed by technology. Sort of like a deaf genocide.

Harriet A. Washington: Yes, I am so glad that you asked this question because I was actually thinking about this yesterday. I have taught at the National Technical Institue for the Deaf in Rochester, New York which sensitized me to some concerns in deaf communities around these implants.

I agree with you that a great deal of insensitivity has emanated from the blanket pathologizing of deafness in hearing culture, and unfortunately this is where the surgeons and social workers have hailed from. Everyone wants to act in the best interest of the deaf child in question but what is "best"? I don't pretend to know the answer but I think that there has been insufficient attention to the cultural realities and strengths of the deaf community. The decision to make the child undergo this surgery rests on a a risk vs benefit analysis and it is not ethically valid to discount the many risks of surgery while ignoring the potential benefits of membership in the deaf community. because our laws state that parents make such decision for children, I vote for increased parent education.

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Philadelphia, Pa.: Doesn't the past history create continued suspicions within the African American community? I have met people who were convinced that infertility drugs were put into fried chicken and who have heard the rumors about AIDs being a plot to kill Blacks. Does your book cover how the past real incidences lead to these suspicions?

Harriet A. Washington: This is *the* crucial question, and the answer is that you are absolutely correct. The legacy of medical abuse and exploitation has created a climate of distrust and one important manifestation of this the proliferation of fears that are logical and factual, but also fears that are mythical, such as the belief that reproductive agents have been infused into soda sold in black communities and into delicacies associated with blacks, such as fried chicken.

I do address directly medical-research fears such as the prevalent belief that the subjects of the USPHS Tuskegee syphilis study were injected with syphilis, which was a logical belief. But there was no need for me to revisit the nonmedical beliefs such as those you cite because they already have been very ably analyzed and discussed in a book entitled I Heard It Through the Grapevine: Rumor in African-American Culture ( 1998, University of California Press). It's very well written, is available via amazon for about $20, and I think you would enjoy it.

One of her interesting points is that such myths, which may superficially sound like paranoia, actually serve very effectively as logical effective warnings about consumer behavior.

I want to point out that some suspicions that sound like paranoia are later found to be true or mostly true.Most have at least some kernal of truth, although they may be wildly overblown. There is a lot of myth that needlessly frightens people from medical care but there are also some pretty unbelievable medical transgressions I am much slower than I used to be to reject oral warnings as myth until I've had a chance to investigate them myself.

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Virgina: Is this the study?

Final report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel. by United States Public health service.; United States. Dept. of Health, Education, and Welfare.; Tuskegee Institute. Tuskegee Syphilis Study Ad Hoc Advisory Panel. 1973.

Harriet A. Washington: Yes, Virginia that is not the title of the study report itself, but it does refer to the study. What you cite is the report by the panel that was responsible for ending the study. I discuss it at length in the book

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Maryland: About the study that someone posted, is Tuskegee only about syphilis? I thought it was about so many other health issues and every kind of disease.

Harriet A. Washington: The USPHS study address only syphilis. The researchers posited that the disease affected the cardiovascular systems of blacks while sparing their nervous systems, so it touched upon cardiology and neurology as well. Also there is evidence that the study used the men to try perfecting a test for syphilis. All this is detailed in the book

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Arlington Va: Late last year, a story ran in the Post magazine written by a

woman whose mother was quarantined in a TB sanatorium.

She discussed at length the impact that the wronge diagnosis

had on the relationships within the family and the wounds

that have taken so long to heal. Do you know more about

this, on a national scale?

Harriet A. Washington: Yes, I am aware of this deeply troubling case and unfortunately, many people have suffered her fate. I detailed the racially disparate practice incarcerating patients, including national prevalence, in order to treat infectious diseases in the Infection and Inequity chapter of the book¿ which wAs written before her case became known. I used the less well known but equally troubling example of Myron Ellison, a man with TB who was imprisoned in New York

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Washington: There was a RAND report last year about the black community attitude to health issues. It was interesting but how are you gonna get help for your health if you don't like doctors?

Harriet A. Washington: " ...how are you gonna get help for your health if you don't like doctors?"

Your question goes to the heart of why I think this book is important. Many of us don't like or trust doctors, and broadly and historically speaking many (not all, by any means) doctors have shown that they don't like us. But we need doctors: without regular medical care and without expert medical advocates we are doomed to lives of lingering illness and early deaths¿ a pattern I have seen in some of my own friends and family.

This ugly history is constantly ignored or downplayed, which would make any intelligent person even more suspicious

I've taken what I see as an important step: By detailing this history, and by explaining what has and has not improved, I hope to lay a foundation for future trust. between doctors and patient¿ but trust with our eyes open, so to speak.

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Washington, DC: Assuming that remaining in "deaf culture" and not having implant surgery means not being able to fully enjoy performed or recorded music, waves on a beach, grasshoppers at night, etc., how can anyone reasonably attest to a preference towards remaining deaf? I am not trying to be inflammatory...I am just completely flabbergasted and have a hard time believing that anybody with a choice of remaining deaf or having functional hearing would choose to never hear the wonderful sounds produced in the world.

Harriet A. Washington: I understand your confusion, but ask you to consider that if you have spent a lifetime as a hearing person, it will be difficult to appreciate the perspective of a deaf person.

Try substituting another attribute for "deaf" and you might find yourself wondering how a person could prefer being black¿ there are plenty of drawbacks to experiencing daily racism, yet being black is a desirable state for most of us.

I am not deaf, and I don't know enough about it to educate you , but I'm sure that someone who has spent his or her life in deaf communities, attending deaf schools, etc., could.

I'd like to recommend a book that helped me understand this issue: The Mask of Benevolence: Disabling the Deaf Community (Paperback)by Harlan L. Lane.

ps-- I love music and can't imagine my life without it, but if I'd never heard it, I would feel differently.

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Washington, D.C.: Why do you use the word blacks instead of African-Americans?

Harriet A. Washington: Because I'm so old, and because 'black' is easier to type.

I'm only half kidding. I've lived through 'colored', 'Negro', 'black' and 'African American' and none of them has changed my ideology.

Actually, I do use African American I. use *all* these words in the book and elsewhere , because they are not synonyms. Each has denotations and connotations that fit some contexts and not others. 'Black' for example is less exclusionary than 'African American' which cannot refer to people of African descent on other continents. Also in discussing medical research some papers specifically refer to American blacks and others to blacks so for accuracy sake I preserve this working.

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Washington, DC: I am very grateful for the sterling scholarship that has gone into this work and stand in honor of Dr. Washington and her team. I am surprised that I am surprised that there was much more to the story than has already been told.

Karen A. Burke

Harriet A. Washington: Thank you so much, Karen. I worked hard and long to present work that would be superbly documented, and I am grateful that you appreciate this.

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Bowie Md: Sorry i'm logging on late. Can you tell us how to reach you for further comments?

Harriet A. Washington: Sure, I'm working on my web site now, which I hope will be up by the end of the day: I've run into some software glitches. If it's not up today, I apologize and I promise it will be up very soon. The address is www.medicalapartheid.com

Meanwhile, you can email me at medicalapartheid@aol.com

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Maryland: What about white Americans? Any "apartheid" for them too?

Harriet A. Washington:

This isn't the clearest "me-too" question, but I will try my best to answer it.

Because the U.S. medical system was created by white Americans and created and maintained in order to serve their medical interests, whites cannot lay claim to medical apartheid in the sense in which the Introduction of the book defines it.

The numbers amply document this: The profound US health-care disparities and inequities harm blacks and benefit whites.

However there are indeed discrete areas in which medical racism harms whites as well as blacks, and I discuss quite a few of these in the book including:

--The 'black' heart drug BiDIl is being withheld from white who could very likely benefit from it

--The racist and fraudulent South African breast cancer study (by Werner Bezwoda) that championed high dose chemotherapy for recurrent nonresponsive breasts cancers abused black subjects but probably led to the deaths of more Western white women than blacks. -- Ichuro Kawachi and Deborah Prothrow Stith at the Harvard School of Public Health have documented that inequities in health harm the middle class as much as the poorer classes

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Bowie Md: Was the Myron Ellison case a contemporary one? What time period does your book span?

Harriet A. Washington: The Ellison case stems from the early 1990s.My book covers the gamut of American history from the 17th century to mid-2006.

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Cochlear implants: As a follow-up to Washington D.C.'s question, as a hearing parent I would be less concerned about my child's ability to hear music and more concerned about my child's ability to hear, say, oncoming traffic. As a hearing person with no children, I don't have a personal stake in this issue, and I certainly have no wish to offend, but I am curious about this as well.

Harriet A. Washington: I absolutely understand with your point, and frankly if I had a deaf child I do not know whether I would pursue a cohlear implant. But my point is that such an important safety issue is one factor to consider: there are other points to weigh against such surgeries and these points tend to be ignored by parents and surgeons making this decision. A deaf person might say that is is doubly important to teach a deaf child to watch for traffic which can be seen as well as heard.

On a purely anecdotal note, when a fire alarm went off at a newspaper where I once worked, I saw the flashing lights to alert the deaf before I heard the siren.

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Harriet A. Washington: I have thoroughly enjoyed speaking with you: thank you so much for your interest in my book and in this topic. Please visit me at medicalapartheid.com which will be up in the near future, and where we can continue our conversations!

Harriet

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