Trusting vs Trustworthiness of Physicians and Medical Profession
There has been concern in the medical community for some time that African-Americans and other minorities distrust the medical profession. This concern has raised questions as to whether this distrust and the documented history of past research abuse such as in the Tuskegee Syphilis Study is also reflected in lesser numbers of African-Americans or other minorities willing to participate in health research clinical trials thus impairing the universal validity of the trial results. If true, another consequence might be possibly denying the direct benefits of the trials or the trial results to those racial and ethnic groups.
A literature search by David Wendler and others was published in the Open Access internet medical journal PloS Medicine, February 2006 titled “Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?” Their conclusion was:
“We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.
In the May 2006 issue of the same PloS Medicine, Matthew K. Wynia and Vanessa Northington Gamble respond suggesting that unwarranted conclusions were made by Wendler and others in their paper. Though Wynia and Northington disagree with the analysis and conclusion that "racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research",they add:
“Despite these scientific weaknesses, Wendler et al. are right to conclude that it is inappropriate to focus on changing African Americans' attitudes of mistrust, but not because those attitudes don't exist. Many minorities don't feel welcome and respected within the health-care system. Those who do come in have already crossed a threshold of trust, at least with their individual doctor. Those who don't come in, of course, will never have the opportunity to be asked to enroll in a clinical trial. Instead, the reason it would be inappropriate to focus on changing patient attitudes is because these attitudes of mistrust are based on a history of untrustworthy behavior by the health professions, which must be acknowledged and rectified. In other words, the medical profession should not focus on making minorities be more trusting; we should focus on ensuring that we are becoming trustworthy.”
I would be interested to know the general attitude of those visitors to my blog who are other than “non-Hispanic whites” regarding trust in physicians and the medical profession. ..Maurice.
9 Comments:
Maurice -
Well, for better or worse, I'm non-hispanic and white.
I do, however, want to make the point that bioethicists might well have contributed to distrust of health care researchers by doing and promulgating shoddy historical work about the Tuskegee study. There were plenty of ethical problems with that study, especially as viewed from the perspective of contemporary bioethics. But what most people believe transpired simply isn't borne out by the actual historical record.
I recently gained a co-worker with a freshly minted Masters in Bioethics who had been taught that subjects were intentionally infected with syphilis. She also had been taught that the public helath researchers withheld penicillin from subjects even after they knew it was an effective treatment for late latent syphillis. Both these claims are bogus -- but if even "professional" bioethicists believe and teach them, is it any wonder that minorities are wary of researchers?
Bob, I think that the suspicion about the medical profession itself by African-Americans is not generally based on the Tuskegee story. I think there has been, for decades and longer, concern about racism and inequality of care between whites and blacks by the profession. Hasn't there been some evidence in recent times of such inequality though not necessarily directly based on frank racism? ..Maurice.
Maurice -
I don't think anybody who is familiar with modern American society could reasonably doubt that racism infects the practice of medicine -- just like it infects nearly all institutions. But to deal constructively with the problem we need to address the real, often hidden racism of day-to-day interactions, not manufacture "horror stories" that sacrifice historical truth.
One of my friends has spent a lot of time in a hospital lately; he and his partner are people of color living in an overwhelmingly white non-urban area of the US (an area where as a white, I regularly hear racist comments), and they feel that he receives poor treatment because they're people of color.
Now, the hospital may simply be inadequate for everyone, or not. (The things they describe seem, indeed, unreasonably inadequate, possibly due to staffing shortages? or not.)
An issue I find interesting when we talk is that they feel western medicine is alienating (for lack of a better non-cuss word) in the way it talks to and about patients. Here's an example his partner gave me today when we were talking: his medical record says "the patient failed treatment."
What does it mean to tell someone he "failed treatment"? Shouldn't that be more like, "treatment failed"? Or maybe "treatment failed the patient"?
Another example: his records record that he "denied" X or Y, which, at least to our ears sounds accusatory, even when it's something that should be innocuous.
Both of those usages would bother me, too.
They're also put off by the constant use of war and violence metaphors to talk about what's being done to his body, metaphors which have been used towards the cultures both partners come from. They're not African American, but imagine for a moment using a lynching metaphor to talk to an African American patient and you'll get the idea.
Further, uncaring attitudes towards his pain contribute to their sense that they're experiencing racism in their medical care and to their growing distrust of the system and people they're dealing with.
I also gather that their doctors have been fairly nasty in attacking medical practices from their own cultures, which is probably understandable from an allopathic point of view.
But since the two months of western treatment have made him far sicker than he was before, it's hard to really see western medicine as incredibly superior in healing or caring for him.
Caring, to be honest, seems largely missing from his medical experience here.
So, that's all purely anecdotal, of course, and easy to ignore as such.
Bardiac, you and other visitors might like to read on this blog a series of postings and their comments about alternative medicine as contrasted with "western" conventional medicine. The last posting is the following link. ..Maurice.
Racism is such a normal occurrence in American society, I don't think there is any aspect of it that is unaffected. To determine the extent of the problem, the issue of racism and medical treatment requires more research. Do minorities often receive lesser care because they are minorities or because they tend to go to underfunded/poorly run hospitals? Are these hospitals underfunded because they treat minority patients? Before anything can be done (if it indeed needs to be done) the extent of the problem needs to be established. The fact that people including "non-white Hispanics" are interested is clearly the beginning of progress.
I have the book - Bad Blood- by J H James. Peter Buxtun answered all his queries concerning the study. No where in the book does it say the men were given syphilis by doctors.In 1966 Buxtun first tried to end the study insisting the men were being used as guinea pigs.The Washington Star broke the story of the study in 1972.
Topsy
The men in the study had to ask for penicllin but how could they when they were only told they had bad blood? They should have been told they had syphilis which could be treated with penicilin.
Dr Berrey and local doctors agreed to sanction the study.
topsy
Also Dr Myer, Dr Berrey, and the local doctors all agreed the study needed to be upgraded scientifically.Each of the local doctors was given a list of the men in the study (Ad Hoc Committee Minutes)1969
topsy
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