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Race, Trust, and Tuskegee: Professional Ethics, Broken Trust, and Health Disparities: Race, Trust, and Tuskegee: Professional Ethics, Broken Trust, and Health Disparities Presentation to NIH Director’s COPR: Matthew Wynia, MD, MPH Director, The Institute for Ethics American Medical Association October 20, 2003 The Institute for Ethics at the American Medical Association

An AIDS Vaccine Story: An AIDS Vaccine Story Vaccine studied in 5,009 people at high risk Among vaccine recipients, 5.7% contracted infection versus 5.8% of placebo recipients But, among African Americans vaccination reduced infection rates from 8.1% to <2% The catch: Only 314 African Americans enrolled; only 13 became infected (4/203 versus 9/111, p=0.011)

Reasons minorities may be less likely to participate in research: Reasons minorities may be less likely to participate in research Mistrust of the health care system and the research enterprise Education Economic and geographic barriers Cultural barriers Differences in language, appearance, communication style, use of non-verbal cues, etc.

Goals for today: Goals for today Trust is important in medical care and research Minorities more often mistrust the health system and health research This mistrust, sadly, is well-founded Medical researchers must find ways to build trust. Some ideas to get started…

Trust in Decline: Trust in Decline Harris and Assoc. (1998) USA Today/CNN/Gallup (2002)

Trust is linked to health outcomes: Trust is linked to health outcomes Decreased trust is associated with: Lower patient and physician satisfaction Increased disenrollment Increased demand by patients for referrals and diagnostic tests Poorer patient adherence to treatment recommendations Increased litigation Possibly lower health status Thom and Campbell 1997, Safran et al 1998

Mediator of the “placebo effect”?: Mediator of the “placebo effect”? “Trust is important in reducing anxiety, increasing a patient’s sense of being cared for, which in turn may improve the patient’s sense of well-being and improve functioning.” (Thom and Campbell 1997) Side query: What might be the economic cost of losing trust/the placebo effect?

Instrinsic value of trustworthiness: Instrinsic value of trustworthiness Being trustworthy has more than instrumental value The integrity of our profession depends on our trustworthiness Relationships in health care and medical research are (and often must be) based on trust, because our patients are especially vulnerable.

Trust: Interpersonal Institutional: Trust: Interpersonal Institutional Interpersonal (patient-doctor) and institutional (patient-profession) trust are related New interpersonal relations require an initial level of institutional trust Institutional trust builds on personal ‘endorsements’ Feedback loops probably exist Lower trust leads to... Wariness in encounters, leads to... Increased weight to negative events, leads to... Lower adherence to recommendations, leads to ... Poorer outcomes, leads to... Lower trust...

Minorities Have Less Trust : Minorities Have Less Trust Interpersonal Trust Whites generally have higher levels of trust in their physicians (Kao 1998) Trust scores are especially low for Latino and African American men (Doescher 2000) When asked if they trust their primary nephrologist’s judgement about their medical care African Americans responded “somewhat” or “not at all” more often than whites (men 22% vs. 12%, women 24% Vs 11%). (Ayanian 1999) Still, most patients trust their own physician a great deal.

Less Institutional Trust: Less Institutional Trust Major Differences African American men and women are less trusting of hospitals. (Boulware 2002) African Americans are less trusting of the reasons physicians use to withdraw life sustaining therapies. (Hauser 1997, Blackhall 1999) African Americans are less trusting of the organ donation system. (Yuen 1998, Siminoff 1999) African Americans have less trust in the health care system in general. (Gamble 1997, Freedman 1998, Minniefield 2001) African Americans have profound mistrust of medical research. (Harris 1996, Freedman 1998, Sengupta 2000, Freimuth 2001, Shavers 2001, Corbie-Smith 1999 and 2002)

Race and Mistrust: Race and Mistrust 1997 - 527 AA and 382 whites in national telephone survey (Corbie-Smith 2002)

HIV Research participation: HIV Research participation 1998 - 301 AA adults in Durham NC Oversampled for higher education >50% disagree that government research on AIDS is beneficial to the AA community >2/3 agree that HIV might be a man-made virus Only about ½ thought AIDS researchers today are more respectful of AA than were the Tuskegee researchers Distrust was the major predictor of unwillingness to participate in HIV clinical research (Sengupta et al, 2000)

Extreme Mistrust: Extreme Mistrust The government introduced drugs (and guns) into African American communities. Needle exchange programs are to foster drug abuse AIDS/HIV was created as a tool of genocide. Sickle Cell screening is to reduce the AA population Physicians withdraw life-support to African Americans for financial/racial reasons over medical reasons Minority organ donors receive inferior care The “Tuskegee Study” (USPHS Study of Untreated Syphilis in the Negro Male) involved deliberate infection with syphilis.

Views reflect history: Views reflect history This mistrust did not arise from nowhere... Dr. Thomas Hamilton’s experimentation on the slave, Fed, testing heat stroke treatments. Dr. J. Marion Sims experiments on slaves to perfect techniques to repair vesicovaginal fistulae. “Night doctors” and cadaver thieves Academic medical centers/“Teaching material” Today, 60-80+% of AA know something about the USPHS Study at Tuskegee More important, there is a “collective memory” of abuse

A Study of ‘Untreated’ Syphilis: A Failure of Professional Ethics: A Study of ‘Untreated’ Syphilis: A Failure of Professional Ethics Begun in 1932, continued until 1972. Approximately 400 African American men in Alabama with Syphilis were observed to autopsy. Most received some ineffective treatment(s), but no reliable treatments were given, including after Penicillin was in widespread use in the 1950’s. Patients were not told they were being enrolled in a study – they were told they would receive “free treatment” for “bad blood” and a burial stipend. Patients remained infectious, underwent lumbar punctures and other invasive testing.

“Treatment,” research, and lies: “Treatment,” research, and lies In 1932, the year the study began, the USPHS issued a paper strongly arguing for treatment of latent syphilis (Moore et al, 1932). Every major textbook concurred in the need for treatment of latent syphilis (Brandt 1978) Subjects were initially difficult to enroll, until they were told they would receive free treatment for “bad blood” Spinal taps were called “special free treatment” “Some time ago you were given a thorough examinination and since that time we hope you have gotten a great deal of treatment for bad blood. You will now be given your last chance to get a second examination. This examination is a very special one and after it is finished you will be given a special treatment if it is believed you are in a condition to stand it. REMEMBER THIS IS YOUR LAST CHANCE FOR SPECIAL FREE TREATMENT. BE SURE TO MEET THE NURSE.” (Letter to participants announcing the spinal tap, circa 1935)

“Deceipt was integral to the study”: “Deceipt was integral to the study” “Naturally, it is not my intention to let it be generally known that the main object of the present activities is the bringing of the men to necropsy.” (Vonderlehr to Smith, 1933) “They simply do not like spinal punctures….others claim they were robbed of their procreative powers (regardless of the fact that I claim it stimulates them.)” (Diebert to Vonderlehr, 1939) “[The doctor] wants to make a special examination to find out how you have been feeling and whether the treatment has improved your health.” (letter to study subjects, 1938)

Bad Science: Bad Science “Untreated” Syphilis “It was difficult to hold the interest of the group of Negroes in Macon County unless some treatment was given” Dr. R. Vonderlehr, 1968. (Brandt 1978) In interviews with four survivors, all remembered receiving shots, ointments, pills, or medicines. (Department of Health, Education and Welfare, 1973 - in Reverby 2000) Control subjects who contracted syphilis were simply switched into the “test” group.

Contemporary Experience: Contemporary Experience “The legacy of the Tuskegee Study endures, in part, because the racism and disrespect for black lives that it entailed mirror black people’s contemporary experiences with medicine.” (Blendon et al 1995) Negative experiences cited by African American and Latino focus groups (Thom and Campbell 1997) lack of respect lack of privacy deaths of friends or relatives due to poor medical care Minorities report more communication problems with physicians (Commonwealth Fund, 2002) African American patients rate their visits with physicians as less participatory than whites. (Cooper-Patrick et al. 1999) Minorities much more likely to believe that doctors, nurses and other health professionals – whether they mean to or not – treat minority patients differently than white patients. (Harvard Forums on Health 2003)

IOM Report: 2003: IOM Report: 2003 Copyright 2003, American Medical Association. All rights reserved. “Racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities, even when access-related factors, such as patients’ insurance status and income, are controlled.” (page 1)

Becoming Trustworthy is a Professional Responsibility: Becoming Trustworthy is a Professional Responsibility Trustworthiness is central to professional integrity and trust confers health benefits Minorities mistrust medical research There are reasons, both historic and contemporary, for this mistrust, which reflect profound failures of professional ethics To improve outcomes, reduce health disparities, and build our integrity, medical researchers must work on trust among minority populations How can the research enterprise build trust that has been breached?

What to do…: What to do… Recognize and focus on the issue Develop well-validated measurement tools to track levels of trust Build on personal trust – foster interpersonal action/training Community involvement in research (CBPR) Communicate value of research Never forget… Government researchers once were trusted

Acknowledgements: Acknowledgements Special thanks to: Jennifer Matiasek, MSc Jeanne Uehling, MESS Elizabeth Jacobs, MD The AMA Minority Affairs Consortium