Remembering Tuskegee

July 25, 2002 8:35 AM

From NPR (The MetaFilter giveth, the MetaFilter taketh away...) Remembering Tuskegee
600 low-income African-American males, 400 infected with syphilis are monitored for 40 years. Even though a proven cure (penicillin) became available in the 1950s, the study continues until 1972 with participants denied treatment. Perhaps as many as 100 died of syphilis during the study (Allen, 1978). Additional resources.

Thirty years ago is not that long a time.
posted by y2karl (27 comments total)

The problem isn't getting people to remember Tuskeegee, it's getting people to forget it. Everytime it's pointed out that African-Americans suffer disproportionately from high-blood pressure, heart disease, kidney disease, stroke, cancer etc., and low rates of compatible organ donation, somebody starts whining that it's all the fault of the Tuskeegee experiment. African-Americans don't trust the medical establishment, etc. Maybe it's time to get over it, and move on. There's outstanding care available for everybody, if you take the time to learn how to use it. After all, if you and I die prematurely of some preventable disease, it doesn't punish the medical establishment.
posted by Faze at 8:45 AM on July 25, 2002

Saying "get over it" is equivalent to saying "just take it."

I have also encountered some extreme African American paranoia, some bad attitudes toward the institution I would describe as "disproportionate."

But what are people supposed to think, how are they supposed to ground themselves and "move on" when this kind of thing actually did happen in the real, real world?

If anything, the onus is on the institution to go the extra mile to win their trust back.
posted by scarabic at 8:56 AM on July 25, 2002

Everytime it's pointed out that African-Americans suffer disproportionately from high-blood pressure, heart disease, kidney disease, stroke, cancer etc., and low rates of compatible organ donation, somebody starts whining that it's all the fault of the Tuskeegee experiment.

Care to back up another linkless opinion for once, Faze?
posted by y2karl at 9:24 AM on July 25, 2002

Actually, the story on Morning Edition this morning (real audio) pointed out this very thing--the distrust of the medical establishment caused by Tuskegee. And, whether you love NPR or think they are a bunch of godless liberal communists, I don't think they would go too far without sources for their statements.
posted by trox at 9:56 AM on July 25, 2002

Nice, Faze. Our country's little Nazi experiment and you urge all concerned people to "forget it."

Why can't they just know their place in society!
posted by xmutex at 9:59 AM on July 25, 2002

True, trox--I checked around as well. I guess I found The problem isn't getting people to remember Tuskeegee, it's getting people to forget it a bit mindboggling. By this light, why remember anything?
Japanese history books that fail to mention Nanking? No problem!

Upon review--xmutex, that's way over the top and unfair.
posted by y2karl at 10:04 AM on July 25, 2002

xmutex, "their place in society" is in our hospitals, clinics and research institutes, getting the currently available tests, advice, and therapies they need to overcome the incredible health defict currently experienced by African Americans. Since African Americans were once forbidden to eat at certain lunch counters, does that mean they should give up lunch? It is much more important that African Americans get proper medical care and advice NOW, today, in the present, than that they nurse this sad, but very much in-the-past grievance.
posted by Faze at 10:05 AM on July 25, 2002

I think both of you missed xmutex's sarcasm. At least, i hope he was being sarcastic.
posted by Ufez Jones at 10:38 AM on July 25, 2002

Faze: There's outstanding care available for everybody, if you take the time to learn how to use it.

You live in Canada, right? Sweden? Cuba?
posted by signal at 10:40 AM on July 25, 2002

Faze, I'm finding it difficult to respond in a civil manner to your comment, and I really don't want to get booted off of MeFi, so I'll limit myself to saying this: I'll bet I've spent a whole hell of a lot more time with black Alabamians than you have, and you cannot possibly have any idea of how deep their antipathy toward the medical establishment runs because of the heinous Tuskegee Experiment. We're talking GENERATIONS of families that were damaged by this, and it isn't something you can blithely dismiss with a wave of the hand and accusations of "whining".

I'll stop before I get downright insulting.

On a more positive note, much good has come out Tuskegee, Alabama. The city and the university there have produced and nurtured great scientists, great educators, great writers, and great soldiers.
posted by BitterOldPunk at 10:40 AM on July 25, 2002

very much in-the-past ?
30 years ago:
Watergate....
US Supreme Court rules that death penalty is unconstitutional...
Last Apollo moon landing...
Maybe it's time to get over it, and move on?
My Lai, of course, happened 34 years ago and came to light in 1970. Hmm, let's forget that, too...
Of course--But in fact, over the past 30 years, America has simply grown freer and freer, comes to mind.
posted by y2karl at 10:58 AM on July 25, 2002

Let me put it this way, BitterOldPunk: 100 or so men died as a result of the Tuskeegee experiment. But how many tens of thousands of African Americans have failed to get adequate medical care as a result distrust of the medical establishment fostered by having the Tuskeegee experiment shoved down their consciousnesses from an early age? And of those, how many have died of diseases that may have been easily preventable by lifestyle changes and screening? The number may be well over 100. The number may be in the thousands. So in terms of medical atrocities and genocidal effect (if not intent), it may be far worse to harp on Tuskeegee and sow the seeds of unwarrented distrust than to let this story quietly fade away.
This is not like historical forgetting in the usual sense. We need more African Americans to sign up for studies and clinical trials addressing their specific health needs and problems. We need more African Americans participating in bone marrow transplant tissue typing. We need more African American organ donation. Making Tuskeegee the touchstone of African American medical consciousness makes it more difficult to bring any of that about. And anything that makes it more difficult to effectively address the current comparative African American health holocaust (sorry for the inflammatory term) contributes to that holocaust.
How does the rage of modern day African American Tuskeegeeans help anybody? Is it detecting high blood pressure? Is is detecting prostate cancer? Is it preventing coronary artery disease? No. It's encouraging people to hunker down in ignorance and ill health.
If you hate the white medical establishment, if you hate American medicine in general, the best way to get back at it is to get regular screenings, make preventive life-style changes, participate in studies and clinical trials, donate organs and get tissue typed for bone marrow transplant. All of these things make it less likely that African Americans will fall into the clutches of the white medical establishment.
posted by Faze at 11:01 AM on July 25, 2002

(y2karl, Thank you for your comment. But if I may, I'd like to point out that in many ways, Vietnam has gotten over My Lai and other U.S. atrocities, which has allowed them to take advantage of the many material benefits that accrue from closer relations with the U.S. A Vietnam that carried a chip on its shoulder -- as it is certainly very much entitled to -- would just give us the finger, and suffer.)
posted by Faze at 11:05 AM on July 25, 2002

First, Faze, thanks for the reasoned response. I'm glad we aren't just slinging invective. I'll admit to a knee-jerk reaction to this topic, since it strikes very close to home (I could be in Tuskegee for a late lunch if I left right now) and affects the families of friends I care a lot about.

I completely agree with your assertions regarding black participation in medical research and preventative care -- it is vital and necessary and anything that can be done to encourage it should be done. In fact, Tuskegee University has devoted considerable resources to this very issue.

I would quibble with your use of the terms "hate" and "rage" to characterize black response to the (mostly white) medical establishment. It seems to me that it is something even more insidious -- an institutionalized distrust that is based on cold, hard fact. It isn't paranoid if you can PROVE that they really WERE out to get you, you know?

I don't know what the solution is. I do think that the cultural misgivings of black Americans are less of an epidemiological issue than the absence of access to decent health care in poor rural areas. We need more black doctors and nurses and researchers, and we need financial incentives to encourage them to stay and work in these communities.
posted by BitterOldPunk at 11:32 AM on July 25, 2002

By this light, why remember anything?
Japanese history books that fail to mention Nanking? No problem!

I rather doubt most people thought I was talking about Viet Nam getting over it--but rather the danger and folly of America forgetting My Lai. Talk about evading the point...

First make comment containing egregiously inflammatory language-- ...forget it ...whining --then defend comment on points while ignoring what was said that set people off. Also, respond to ensuing reactions with creative non sequiturial misunderstandings.
posted by y2karl at 11:32 AM on July 25, 2002

My original, and I thought obvious, reason for this post was that the Tuskegee Experiment only ended only 30 years ago, let alone that it happened at all. Also, it ended--as the link shows--only because someone stumbled across its existence and blew the whistle.
You may feel free to continue to ignore this as well.
posted by y2karl at 11:49 AM on July 25, 2002

I heard the report this morning on my way to work. Really kind of disgusting to contemplate using people like that.
Makes you wonder what else is going on that has yet to be discovered.

I think faze has made some good points, but maybe a bit abruptly. Re-read his comments and I think you will see that he is not trolling, but rather stating to the effect that possibly the African American population has to stop focusing on Tuskeegee as their source of distrust for the medical community that in turn prevents them from seeking proper care today.

Or something like that?
posted by a3matrix at 12:01 PM on July 25, 2002

I think if you re-read my second comment you will see I got his general argument and that it was not that but the needlessly and pointlessly inflammatory phrasing that irked me. I wonder about the trolling, though--well, anyway, another thread about Faze!
posted by y2karl at 12:14 PM on July 25, 2002

Faze had a point, even if it was from left field without appropriate disclaimers. I certainly wouldn't want to minimize how awful this was, but I do believe it has a disproportionate reputation. It is important to remember that it was not unique. There had been some absolutely horrible human experimentation in Nazi Germany and wartime Japan, but during the Cold War both the US and USSR engaged in some very ethically dicey experimentation themselves, in the name of national security. At the University of Cincinnati, radiation experiments were carried out until 1972 on a mixed (but mostly white) population. The CIA carried out drug, radiation, and "mind control" research without prior consent or knowledge of many subjects. Even so, the once defensible greater good principle seemed to govern many private medical experiments.

This analysis of Tuskegee and other human experimentation with varying degrees of consent is precise in its assessment of which practices were defensible (a few) and which not. The author has a draft code of medical ethics at the end.

Indeed, the principle of prior informed consent has become so ingrained today that many may not realize it was only nascent 30 years ago -- indeed, the problems Tuskegee led to a general reassessment of medical ethics and the 1970s saw several physicians groups wrestle with new guidelines, such as this 1976 revision of a pediatric code of ethics; the article indicates the term itself was only coined in the 1960s by the Kansas Supreme Court (a case I couldn't find). See also a history of informed consent; the Helsinki Declaration had an influence as well.

In short, this was one of the more egregious things that happened in that era, but it wasn't just poor black men who got screwed by medical experiments; whether you were a fully knowledgeable volunteer depended a lot on whether you were a patient in a progressive institution.
posted by dhartung at 1:07 PM on July 25, 2002

Interesting and valuable links, dhartung. There is a sort of mass self-willed blindness detailed there, a kind of collective unconscious quite un-Jungian, where the people involved and responsible just looked away from the ghastly aspects--why they were proposed, from what motives and simply why they were ever done at all--of these "experiments".

In Dr. Standler's Nonconsensual Medical Experiments on Human Beings link, these two leapt out--

To me, the most important question about the Tuskegee experiment is:

"Why was this experiment begun and continued?"

and

There was also little valid medical knowledge from the so-called experiments in Nazi concentration camps. This parallel raises the question "Are unethical studies also likely to be invalid?".

It wasn't just poor black men who got screwed by medical experiments, perhaps, but the Tuskegee Experiment, especially when it was continued for no defensible scientific reason for so long after the discovery of penicillin, is in a class by itself. I do not think its reputation is disproportionate.
posted by y2karl at 2:01 PM on July 25, 2002

It should be stated, at least in passing, that the government did not infect these men with the disease. The lack of information shared and treatment is criminal enough without the additional horror of believeing the government actually make the people sick in the first place.
posted by thirteen at 2:10 PM on July 25, 2002

Unbelievable. Un-believ-able.

Blame the victims. Racism in its finest, purest form.

Blacks are to blame for the state of their relatively poor health because they focus on Tuskegee too much...because of some unreasonable phobia they have about "white" medicine.

Utter bullshit.

Next we'll be hearing that the reason blacks are poorer than whites in this country is because of some special phobia blacks have about seeking a job. Blame the victims.

According to some, the poor state of black health in America has little to do with the Klan, fire hoses and police dogs, segregation, discrimination, getting a hamburger at Denny's, burning and bombing black churches, cowardly LA cops handcuffing and beating kids, racist meeting minutes from oil company executives, poor educational opportunities, "aryans", poor jobs, etc, etc, ad nauseum, not to mention these DAMNED ANNOYING STUDIES I keep finding in my medical journals documenting a pattern of discrimination in health care...a discrimination that matches what is found in every corner of America.

Those wacky docs in Alabama just went off the deep end in splendid isolation, did they? And blacks should just "get over it", should they? And all our problems with discrimination ended -- when? 1865? 1954? 1964? Last week? And something magically kept this country's racism and discrimination from extending to health care?

Right...

The entire history of this nation has been built on the bloody backs of minorities. An entire race of people was enslaved, had de facto genocide visited upon them, then was systematically deprived of their rights for centuries up to and including this very day. Racism directed against minorities in general and blacks in particular is still rampant in this country, and blacks do not have equitable access to basic health care in this country.

I've posted the following more than once here. Before any more of you supposed experts on black health spews forth any more complete drivel about how blacks are to blame for their own poor health, get on PubMed or visit your nearest university and read some of these studies:

Black infants have nearly twice the mortality rates as whites. There is no racial difference in mortality until the immediate postnatal period, suggesting that rate differences are caused mostly by social inequality (author's conclusion) (Hunt GJ, 1995).

Dr. Harold Freeman's (now famous) study published in The New England Journal of Medicine, indicates that men growing up in Bangladesh have a better chance of surviving to their 65th birthday than do black men in Harlem, the Bronx, or Brooklyn. Freeman specifically cited disease, poverty, and inequitable access to medical care as the primary factors responsible for the high death rate among these black men (and not violence and AIDS). (McCord/Freeman, NEJM 322:173-177, 1990)

Peterson and colleagues assessed "racial differences in rates of coronary angiography, angioplasty, and bypass graft surgery among 33,641 men hospitalized for acute myocardial infarction in all Veterans Affairs Medical Centers in the United States. A special strength of this large-database study was the investigators' review of medical records for a random sample of 1000 patients, confirming that 88% had clinical evidence of acute myocardial infarction. In the overall cohort, they found that black veterans were less likely than white veterans to receive major coronary procedures. This study indicates that race can affect medical care in ways that are not simply related to socioeconomic status, because racial differences occurred in a system where care is free and black and white patients are more similar in socioeconomic status than in the general
population." (Peterson ED, Wright SM, Daley J, Thibault GE. Racial variation in cardiac procedure use and survival following acute myocardial infarction in the Department of Veterans Affairs. JAMA. 1994:271:1175-1180.)

Kahn et al showed that "black and poor patients do not receive the high level of treatment given other patients in the same facilities. These studies demonstrate the widespread nature of racial and socioeconomic disparities in the delivery of care....Their study of 9932 patients from a broad sample of hospitals in five states is the most rigorous assessment of quality of care in the Medicare program to date, applying explicit quality criteria to detailed clinical data from medical records. The factors that they assessed are basic components of care at all hospitals, including history taking and physical examination, common diagnostic tests such as serum chemistries and chest roentgenograms, and standard therapies such as diuretics and antibiotics. Within each type of hospital in this study--urban teaching, urban nonteaching, and rural--patients who are black or poor received lower quality of care than other patients, on average, and the magnitude of these differences was similar across the three types of hospitals. These data are particularly disturbing because they demonstrate that inequalities by race and class are not limited to any one group of hospitals that provide lower quality of care." Kahn KL, Draper D, Keeler EB, et al. The Effects ofDRG-based Prospective Payment on Quality of Care for Hospitalized Medicare Patients: Final Report. Santa Monica, Calif: RAND; 1992. (Abstracted in JAMA 1994:271)

Blacks are 2-3 times more likely than whites to die from heart attack, were less likely to have bystander-initiated CPR...or be admitted to the hospital (Becker et al, 1993).
posted by fold_and_mutilate at 4:31 PM on July 25, 2002

Why is it always all or nothing with Mefi? Could it be possible blacks have health problems due to a negligent medical establishment AND poor diets, self-care?

As far as
Next we'll be hearing that the reason blacks are poorer than whites in this country is because of some special phobia blacks have about seeking a job.

goes, isn't it possible that there is some racism in hiring managers and a lack of self-motivation and community involvement?

There is certainly a good measure of systematic racism still ingrained in America, but there is also a disgusting strain of "the world owes me a living" in the black community.

The sad thing is, among a lot of people it's only okay for me to criticize the black community because I happen to be black. Heaven forbid anyone of a different race offer an opinion...
posted by owillis at 4:49 PM on July 25, 2002

...but there is also a disgusting strain of "the world owes me a living" in the black community.

And in every community, period.

But do let us know what special genetic feature you've uncovered that give blacks "a lack of self-motivation" producing "poor diets" and "poor self-care" along with "phobias" about jobs and health care, will you?

Until we read your paper in Nature describing the specific different DNA sequence for "lack of self-motivation" and "lack of community involvement" and "the world owes me a living" contributing to these problems, racism will continue to be Occam's best bet.
posted by fold_and_mutilate at 5:11 PM on July 25, 2002

had de facto genocide visited upon them

Bullshit. Where's your precious study verifying that one? It's ironic that you're not black, but you have a bigger chip on your shoulder than any black guy or girl I've ever met. Amazing. I guess you are the high priest of victimology. Yes, slavery was abusive. But it was not genocide. You can cry all you want for the sins of the past, but at some point you have to keep on going and make a better world for yourself. How do you know that the current problems blacks face are directly related to current racism? I would blame drugs, single pregnancy (and ensuing poverty), and welfare.

Until we read your paper in Nature describing the specific different DNA sequence for "lack of self-motivation" and "lack of community involvement" and "the world owes me a living"

That's weak. People can rise above their genetics, unless of course you're a fatalistic determinist. If they aren't responsible for their current situation, then who the fuck is? If everyone else has genes, they suffer from determinism too, I guess. I'm sorry, but social problems are not well analyzed or solved by your 'studies' or your 'science.' The fact is, ANYONE determined enough to seek good care can get it. The only problem in my mind, is not race, but poverty. There are poor whites who live in squalor in terms of health, and they don't get great health care. The fact is, the middle class is still predominantly white. And that JAMA study you cited is about Medicare. What population percentage of those that receive Medicare are black versus the percentage that are white?

Even still, the GDP of Americans who are black is greater than the GDP of the entire nation of Sweden. Many people do have the wherewithal to take care of themselves, believe it or not. You cannot save them. Nor can the glorious government, even though they've been trying and disastrously fucking things up since the 60's.

Your accusation of racism towards Faze is completely without warrant. He is merely saying that if blacks want good health care, they need to be full and active participants in studies, and they need to be informed and aware of their medical conditions. Telling people to be responsible is only racist in the opinion of race politicians and victimologists.
posted by insomnyuk at 5:48 PM on July 25, 2002

The fact is, ANYONE determined enough to seek good care can get it. The only problem in my mind, is not race, but poverty. There are poor whites who live in squalor in terms of health, and they don't get great health care. The fact is, the middle class is still predominantly white.

Your logic is stunning.

Well that trumps This study indicates that race can affect medical care in ways that are not simply related to socioeconomic status, because racial differences occurred in a system where care is free and black and white patients are more similar in socioeconomic status than in the general
population."...

And that JAMA study you cited is about Medicare. What population percentage of those that receive Medicare are black versus the percentage that are white?

Um...(Peterson ED, Wright SM, Daley J, Thibault GE. Racial variation in cardiac procedure use and survival following acute myocardial infarction in the Department of Veterans Affairs. JAMA. 1994:271:1175-1180.)? Are we going off half cocked here without bothering to read even the citations?

You disparage a peer reviewed document involving a random study involving over 1,000 patients as 'science' and then 'refute' it with a reference to the Swedish GDP and your fervent opinions.

I don't especially care for calling people racist but then again calling people race politicians and victimologists is a piece cut from the same cloth. Pejorations aside, fold_and_mutilate at least provided documentation in response to Faze's ad nauseums.

Another day, another derail. Once again I feel like a robin who's just hatched a cuckoo's egg.
posted by y2karl at 10:17 PM on July 25, 2002

peer reviewed document

Ah "peer reviewed," the holy grail for documents. Truly, anything peer reviewed is the Truth. Even though these 'peer reviewed' studies that frequent the pages of JAMA, the New England Journal of Medicine, and others, often get overturned by newer, different studies.

Are we going off half cocked here without bothering to read even the citations?

This excerpted from the last source fold and mutilate cited:

"Their study of 9932 patients from a broad sample of hospitals in five states is the most rigorous assessment of quality of care in the Medicare program to date, (Abstracted in JAMA 1994:271)"

That's what I was referring to. The study was regarding poor people on Medicare. As I said before, if you're poor, you'll probably get worse care, although I have known some rich white folks who got bad care too. Why does everything have to be about race?

As for the study regarding the Veterans Administration, the excerpt admits that the VA population is a limited, fairly unique segment of the American population. It may be racist, but might I remind you that VA care is considered lower quality than most private hospitals around the country.

Back to the last report foldy cited. He cited an abstract, from JAMA. The paper was done by RAND. There is no free, readily viewable FULL report. I can only read what JAMA summarized to be the case, or I can read RAND's official abstract:

Abstract: In 1983, in an effort to control rising health care costs, the federal government established a prospective payment system (PPS) to reimburse hospitals for inhospital care of Medicare patients. Under PPS, hospitals are paid an amount based largely on flat rates per admission calculated for each of approximately 470 diagnosis-related groups (DRGs). This new payment system has been somewhat successful at slowing the upward spiral of Medicare costs. However, because PPS presents incentives to decrease lengths of stay and to substitute lower-cost services and procedures, patients, physicians, and policymakers are concerned that, despite the introduction of monitoring by professional review organizations, the quality of health care given Medicare patients may have declined under PPS. This report assesses the quality of inhospital care for Medicare patients age 65 and over, before and after the implementation of PPS, and estimates the effects of the PPS intervention on quality of care, by comparing quality of care now with the best estimate of what it would have been without PPS. Specifically, the authors describe the study's design, sampling, and fieldwork; discuss changes in sickness at admission following the introduction of PPS; consider measurements of the quality of care using explicit criteria before and after implementation of the PPS; compare changes in quality of care between 1981 and 1986 for five diseases as measured by implicit review; and discuss PPS and impairment at discharge. /abstract

So clearly, the salient issue is first that people on Medicare are going to get shitty care. Again, they represent a small segment of the population. Maybe the statistics are being mis-represented. Again, there is no data I have seen relating to the demographics, except dishonest interpretation if information:

patients who are black or poor received lower quality of care than other patients, on average,

Nevermind that ALL the patients in the study were on Medicare, and therefore poor. To add "black" is an unnecessary adjective. The wording of the JAMA abstract is therefore suspicious, in my mind.

These studies do not represent across-the-board racism in medicine. How is it possible, in hospitals across America where a segment of the employees are black, (including the one where my mother works, 10-15% of the employees, including nurses and some doctors, are black) that there is racist care in these hospitals? Is clever whitey pulling the wool over everybody's eyes so they can purposefully hurt blacks? I don't think so. Furthermore, if the medical establishment is so evil, why are so many blacks working for it?

I don't especially care for calling people racist but then again calling people race politicians and victimologists is a piece cut from the same cloth.

I'm sorry for overreacting and fighting fire with fire, but he spent the first several paragraphs of his longest post preaching to us.
posted by insomnyuk at 8:16 AM on July 26, 2002