Race, Trust, and Tuskegee: Professional Ethics, Broken Trust and Health Disparities

By

The Institute for Ethics at the AMA and The AMA Minority Affairs Consortium
[Published by IVMS with permission] Statements and opinions expressed in this presentation are the authors alone and should not be ascribed to the American Medical Association.

The information presented in these slides and speakers notes is meant as a starting point for creating a presentation on Physician Ethics, Trust, and Health Disparities. Please keep in mind that it would not be feasible to use the entire presentation in its current form, because such a talk would run over an hour. Instead, choose some of the points, data, resources, and references to create a customized presentation that meets your specific goals and needs. The resources that we have made available include: PowerPoint slides, a Word document containing speakers notes, and a bibliography. This information was originally presented, in part, by Dr. Matthew Wynia MD, MPH at a June 2002 meeting of the American Medical Associations (AMA) Medical Student Section. The meeting was hosted by the AMA Minority Affairs Consortium (MAC). Development of the ideas contained within this presentation was done in collaboration with Dr. Elizabeth Jacobs, MD in preparation for a paper on the relationship between physician professionalism, patient trust, medical ethics, and health disparities.

Matthew Wynia, MD, MPH, Director of the Institute for Ethics at the AMA, examines trust
as the cornerstone of an effective patient-physician relationship. Higher levels of trust between patients and their physicians correlate with positive health outcomes. Since Latinos and African Americans report lower levels of trust in their physicians and the health care system, taking a careful look at how to build trust will help to eliminate racial and ethnic health care disparities. This PowerPoint presentation provides an overview of research findings concerning trust and health outcomes, racial and ethnic health care disparities, the roots of mistrust, including the United States Public Health Service (Tuskegee) Syphilis Study, and suggestions on what physicians can do, individually and collectively, to earn the trust of minority patients.

The AMA Minority Affairs Consortium (MAC) is a group of physicians and

medical students dedicated to addressing the issues and concerns of underrepresented US physicians and improving the health of minority populations. The MAC is a unique partnership reflecting a cross-cultural approach to collaboration through formal links between the AMA and the National Medical Association, National Hispanic Medical Association and Association of American Indian Physicians. The MAC provides a national forum for networking and advocacy on minority issues and promotes the following aims: the need to increase the number of minority enrollees and faculty in US medical schools, to eliminate health disparities and improve the status of minority health, and to promote diversity and cultural competency in the profession and expand minority physician membership, participation and leadership in the AMA. Membership is free! MAC members receive a quarterly newsletter and a monthly news email blast. Visit www.ama-assn.org/go/mac or call 312-464-5678 to join today.

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Learning Objectives
We recommend that individuals use these slides and speaker's notes as a resource to develop their own targeted presentations on Physician Professionalism, Trust, and Disparities. The learning objectives will vary, depending on which points the speakers wish to address, and what information and resources they choose to include in their presentation. In its entirety, this slide show aims to: 1. Illustrate the importance of trust in patient-physician relationships. 2. Outline how trust can influence health outcomes, and how broken trust can be a significant negative influence on a patient's perception of physicians and health care. 3. Show that minority patients often have less trust in physicians and the health care system. Explain the sources of mistrust, such as personal experience and the history of minority treatment within the US health care system. 4. Explain how lapses in physician ethics such as the Tuskegee Syphilis Study have had farreaching implications on the level of trust in medicine maintained by African American individuals. 5. Suggest some steps individual physicians and organizations can take to help maintain trust in patient-physician relationships, and to help re-establish the trust that has already been lost.

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Contents
Slide 1: Race, Trust, and Tuskegee: Professional Ethics, Broken Trust, and Health Disparities ................. 5 Slide 2: Goals of This Presentation ............................................................................................................... 6 Slide 3: Disparities Across Health Care ........................................................................................................ 7 Slide 4: Due to Coverage? ............................................................................................................................ 8 Slide 5: Transplantation Disparities .............................................................................................................. 9 Slide 6: More Likely to Have .................................................................................................................. 10 Slide 7: Who You Are Influences What You Think ................................................................................... 11 Slide 8: Unfair Treatment ........................................................................................................................... 12 Slide 9: Views on Health Disparities .......................................................................................................... 13 Slide 10: Fueling Disparities ....................................................................................................................... 14 Slide 11: Importance of Trust ..................................................................................................................... 15 Slide 12: Declining Trust ............................................................................................................................ 16 Slide 13: Links to Health Outcomes ........................................................................................................... 17 Slide 14: Trust and Patient Satisfaction ...................................................................................................... 18 Slide 15: Trust: Mediator of the Placebo Effect? ........................................................................................ 19 Slide 16: Broken Trust ................................................................................................................................ 20 Slide 17: Trust: Interpersonal-Institutional ................................................................................................. 21 Slide 18: Minorities Have Less Trust ......................................................................................................... 22 Slide 19: Less Institutional Trust ................................................................................................................ 23 Slide 20: Trust vs. Trustworthiness............................................................................................................. 24 Slide 21: Extreme Mistrust ......................................................................................................................... 25 Slide 22: Guinea Pigs & Unethical Tests .................................................................................................... 26 Slide 23: HIV & Genocide .......................................................................................................................... 27 Slide 24: Views Reflect a History ............................................................................................................... 28 Slide 25: A Study of Untreated Syphilis: A Failure of Professional Ethics ............................................. 29 Slide 26: Untreated Syphilis ..................................................................................................................... 30 Slide 27: Contemporary Experience ........................................................................................................... 31 Slide 28: Building Trust is the Professions Responsibility........................................................................ 32 Slide 29: Individual Physicians Can ....................................................................................................... 33 Slide 30: What Should Our Organization So to Help Reduce Disparities? ................................................ 34 Slide 31: Sponsored By:.............................................................................................................................. 35

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Slide 1 (Title Slide): Race, Trust, and Tuskegee: Professional Ethics, Broken Trust, and Health Disparities Physicians have a professional ethical obligation to provide their patients with the best care possible, stand up for their patients rights, and work to improve health outcomes for the public in general. Maintaining patient trust is an important component of this obligation because of its contribution to the relationships that patients, families, and communities have with their physicians and other health care providers. Research has shown that patients, families, and communities who can trust their physicians, and who are seen by their physicians as competent and trustworthy, benefit from improved communication and an improved therapeutic bond for better healing. Research has shown that minority populations have less trust in physicians and the medical system. A recent report by the Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2002) strongly supports the view that less effective communication and lower levels of trust often exist when patients are non-white or poor, and that these factors contribute to differential treatment and worse health outcomes for these populations. A great deal of research on health disparities supports the view that race, trust, and health outcomes are linked. This presentation can stimulate a discussion on health disparities, the importance of trust in medicine, and how health disparities may be linked to trust.

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Slide 2: Goals of This Presentation This presentation will provide evidence and data that illustrate: Racial disparities in health care exist Short synopsis of data on health disparities Trust is important to good health outcomes Trust in individual physicians and the medical profession contributes to positive health outcomes Minorities tend to mistrust the medical profession (and this mistrust is not unfounded) Mistrust in the medical profession may be one of the many contributing factors that lead to disparities in health care The medical profession needs to demonstrate its trustworthiness. Individual physicians and professional organizations need to take responsibility for low levels of trust and work to demonstrate trustworthiness.

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Slide 3: Disparities Across Health Care Research has shown that minority groups experience disparities in health care, health status, and health outcomes. The Institute of Medicine Report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (2002) defines disparities in healthcare as racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention. (page 4) Health disparities have been documented across most minorities groups (Hispanic Americans, American Indians, Asian Americans), but to date, disparities have been best studied and documented in African Americans. For example Referrals For Evaluation at Renal Transplantation Center: African American men (53.9%) and women (50.4%) received fewer referrals than white men (76.2%) and women (70.5%), P<0.01. (Ayanian 1999) Of patients approved for renal transplantation, African Americans (16.9%) were less likely to undergo transplantation than whites (52.0%), p<0.001. (Epstein 2000) Adequate Pain Medication for Cancer Patients: 65% of minority patients who reported having pain DID NOT receive the recommended prescriptions versus 50% of non-minority patients, P<0.001. (Cleeland et al. 1997) HIV Care: African Americans (on 6 measures) and Latinos (on 4 out of 6 measures) received poorer care than whites. (Shapiro et al. 1999) HIV Treatments: Prior to entering a clinic, African Americans (48%) were less likely than whites (63%) to have received antiretroviral therapy (P=.003) and African Americans (58%) were less likely than whites (82%) to have received PCP prophylaxis (P<.001). (Moore et al. 1994). After controlling for confounding factors, white patients were 78% more likely than African American patients to receive revascularization procedures after angiography, 95% CI. (Ayanian et al. 1993) Of patients with the greatest survival benefit, 42% of African Americans underwent angioplasty and coronary bypass surgery vs. 61% of whites, P<.0001. (Peterson et al. 1997) After angiography, African Americans were less likely than whites to receive Percutaneous Transluminal Coronary Angioplasty (23% vs. 19%) and Coronary Artery Bypass Graft Surgery (29% Vs 17%). (Schneider et al. 2001) African American patients received fewer eye examinations (diabetes patients), B-blocker medication after myocardial infarction, and follow after hospitalization for mental illness. (Details on slide 3). (Schneider et al. 2002)

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Slide 4: Due to Coverage? Disparities were present, even when the studies accounted for differences in health care coverage or when the studies were conducted in populations with equivalent health care coverage. Schneider et al. (2001,2002) found that among Medicare recipients in managed care health plans, African Americans were less likely than whites to receive: Breast cancer screenings Eye examinations for diabetes patients B-blocker medication after myocardial infarction Follow-up after hospitalization for mental illness Influenza vaccinations CI 18.2% to 25.0%) 62.9% Vs. 70.9% (P<.001) 43.6% Vs. 50.4% (P=.02) 64.1% Vs. 73.8% (P<.005) 33.2% Vs. 54.0% (P<.001) 46.1% Vs. 67.7% (AD 21.6%; 95%

As documented in the report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (2002), the Institute of Medicine also found that even when comparisons were made across populations with equivalent health insurance coverage, health disparities persist. The Institute of Medicine states: 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.

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Slide 5: Transplantation Disparities

The US Department of Health and Human Resources released a report in 1998 on the differences between African American patients and white patients in the months they had to wait to receive a kidney transplant. The difference between the number of months that an African American versus a white recipient had to wait to receive a kidney transplant varied by almost 9 months in 1988 to over 19 months in 1994. More recent data (table below) from the United Network for Organ Sharing (UNOS), shows this trend continuing with a difference in waiting time of 20.7 months in 1997-1998. Year 1995-1996 1997-1998 Black Recipients 41.9 months 49 months White Recipients 23.7 months 28.3 months Difference 18.2 months 20.7 months

This not only illustrates a disparity, but one that is increasing over time. For liver transplants, waiting times for African Americans and whites has been more nearly equal than in the case of kidney transplants. The report and data can be found at: http://oig.hhs.gov/oei/reports/oei-01-98-00360.pdf Racial and Geographic Disparity in the Distribution of Organs for Transplantation (OEI-01-9800360; 6/98) United Network for Organ Sharing data can be found at http://www.unos.org/data/

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Slide 6: More Likely to Have While minority populations are less likely to receive the medical treatments listed on the previous slides, they are more likely to receive treatments that are the result of unsatisfactory primary or preventative care. Using discharge data from hospitals in 10 states, Gaskin and Hoffman (2000) found that African Americans and Hispanics were more likely to be hospitalized for preventable conditions than whites. Twenty acute and chronic preventable conditions were included in the study, for example, dehydration, hypoglycemia, pneumonia, asthma, hypertension, etc. Adjustments were made for differences in healthcare needs, socioeconomic status, insurance coverage, and access to primary care providers. African American men were 2.2 times more likely to undergo Bilateral Orchiectomy for prostate cancer. Prostate cancer is only 1.3 times more prevalent in elderly African American men than in white men. (Gornick et al. 1996) Amputation of all or part of the lower limb was 3.6 times as frequent among African Americans than whites in 62% of amputations, the principal diagnosis was diabetes mellitus. Diabetes is only 1.7 times as prevalent in elderly African Americans as in whites. (Gornick et al. 1996) African Americans without Diabetes were 58% as likely to undergo above-knee amputations than whites and 71% more likely to undergo toe/foot amputation. (Guadagnoli et al. 1995)

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Slide 7: Who You Are Influences What You Think Disparities by race or ethnicity are not uniformly recognized, or seen as a problem. Studies have shown variation by race and ethnic background of peoples views on how they are treated within the health care system. For example, the results of a Racial Attitudes Study conducted by the Washington Post, the Henry J. Kaiser Family Foundation and Harvard University (April 2001) show that minority groups feel that they are worse off in terms of health care than whites, they have less opportunities in life, and they face more discrimination. Do you think the average African American is better off, worse off, or just as well off as the average white American in terms of access to health care? Worse Off: White Americans 35% African Americans 61% Do you think the average Hispanic American is better off, worse off, or just as well off as the average white American in terms of access to health care? Worse Off: White Americans 46% Hispanic Americans 50% Do you think the average Asian American is better off, worse off, or just as well off as the average white American in terms of access to health care? Worse Off: White Americans 16% Asian Americans 21% Do you feel that African Americans have more, less, or about the same opportunities in life as whites have? Less Opportunities: White Americans 27% African Americans 74% Do you feel that Hispanic Americans have more, less, or about the same opportunities in life as whites have? Less Opportunities: White Americans 32% Hispanic Americans 45% Do you feel that Asian Americans have more, less, or about the same opportunities in life as whites have? Less Opportunities: White Americans 14% Asian Americans 34% How much discrimination do African Americans face in our society today? Some/A Lot: White Americans 71% African Americans 86% How much discrimination do Hispanic Americans face in our society today? Some/A Lot: White Americans 64% Hispanic Americans 78% How much discrimination do Asian Americans face in our society today? Some/A Lot: White Americans 54% Asian Americans 61%

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Slide 8: Unfair Treatment White physicians have perceptions that reflect those of white Americans, generally. Regarding the overall fairness of the American health care system, the Kaiser Family Foundation National Survey of Physicians (March 2002) shows that: 25% of white physicians 29% of Physicians overall 33% of Asian physicians 52% of Latino physicians 77% of African American physicians

believe that the health care system treats people unfairly based on their racial or ethnic background very or somewhat often.

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Slide 9: Views on Health Disparities The Kaiser Family Foundation National Survey of Physicians (March 2002) reports that physicians attribute unfair health care treatment to a variety of factors from health insurance status, to access, to communication issues. More than any other factor, doctors say the health care system treats people unfairly very often or somewhat often based on health insurance status (72%). Among the 29% of doctors who say the health care system very often or somewhat often treats people unfairly based on their racial or ethnic background, the majority say it is because: Minorities live in areas where there are fewer doctors (58%) Many doctors are not skilled in communicating with people from different racial or ethnic backgrounds (52%) The Kaiser Physician survey reported that 56% of the surveyed public (31% of physicians) believed the major reason for unfair treatment by the health care system based on race or ethnicity is related to doctors assumptions about minorities insurance and ability to pay.

Results of a Kaiser Family Foundation survey conducted in 1999 of 3,884 whites, African Americans, and Latinos. (Lillie-Blanton et al. 2000) 68% of whites 75% of Latinos 80% of African Americans say racism is a problem in health care. 64% of African Americans 56% of Latinos believe they receive lower quality health care than do whites. Most whites (70%-76%) believe that African Americans and Latinos receive the same quality of care as they do.

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Slide 10: Fueling Disparities For the report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2002), the Institute of Medicine reviewed the results of over 100 studies and found a range of patient-level, provider-level, and system-level factors may be involved in racial and ethnic healthcare disparities, beyond access-related factors. Patient-Level Variables Variability in patient preferences, levels of trust and levels of comfort. Studies controlling for patient preferences share persistent disparities. The effects of mistrust will be the focus of subsequent slides. Whether the patient seeks treatment or not. Whether the patient adheres to the recommended treatment or not. How effective the treatment is for the patient. Some differences in clinical presentation or response to treatment are biological. Healthcare Systems-Level Factors Language barriers predominantly affect minorities. Availability and access to health care services Independent of insurance status, the geographic availability of health care institutions affects access to care for minorities. Physician continuity, referral patterns, and access to specialty care Ability to navigate clinical bureaucracies Lack of insurance, insurance variability that results in fragmented care Managed care limitations There are little data, but some claims that managed care organizations avoid minority physicians to avoid the minority/poor patients who may be drawn to these physicians. Managed care systems may disrupt community-based care and displace providers who are familiar with the language, culture, values of ethnic minority communities. Care Process-Level Variables Bias, Prejudice, Stereotyping, Clinical Uncertainty When symptoms are uncertain, physicians balance what they know with cognitive heuristics and what they observe about the patient. Physicians are influenced by socially acquired stereotypes and biases, but may not recognize the manifestations in their behavior. Decisions made with limited time and information Under conditions of time pressure and resource constraint, the need for cognitive shortcuts map closely onto factors identified by social psychologists as likely to produce negative outcomes due to lack of information, stereotypes, and biases. Effect of patient response on physician behavior A patients mistrust could lead to therapy refusal or poor adherence, which might increase physician cynicism and reduce the services that the physician offers. Fewer offered services might further erode the patients trust.

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Slide 11: Importance of Trust Trust is being show to have an important role in patient-physician relationships, and health care in general.

Patient-Physician Relationships The physician-patient relationship often reflects [intimate bonds] and contains strong elements of transference, particularly during times of critical illness when patients are vulnerable and frightened. (Mechanic 1996)

Health Care Trust predicts a patients loyalty to their physician. (Thom 1999, Safran 2001, Keating 2002) Higher levels of trust between patients and their physicians are correlated with positive health outcomes. (Thom 1999, Safran 1998)

In 1997, Thom wrote that Trust is important in reducing anxiety, increasing a patients sense of being cared for, which in turn may improve the patients sense of well-being and improve functioning.

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Slide 12: Declining Trust Trust is a critical element of relationships. A 2002 USA Today article, Scandals Shake Public Trust, quoted Sissela Bok, a Harvard ethicist, as saying: trust is a social good to be protected as much as the air we breathe or the water we drink. When it is destroyed, societies collapse. This USA Today article included the results of a USA Today/ CNN/Gallup poll that asked more than 500 adults which groups they trusted, and found that teachers topped the list being trusted by 84% of the respondents, doctors were trusted by 66%, and Managers of HMOs by only 20%. Teachers 84% Military officers 73% Police officers 71% Protestant ministers 68% Doctors 66% Catholic priests 45% Government officials 26% Lawyers 25% CEOs of large corporations 23% Managers of HMOs 20% (poll conducted July 5-8 2002; margin of error: +/- 5 percentage points.) With the news stories about Enron, Arthur Anderson, crooked politicians, church scandals, and medical errors, the publics trust is being eroded, one profession after another. Because of this erosion, the medical profession needs to address the importance of maintaining not only patients trust in physicians, but the publics trust in the health care system. The 2002 poll shows a change from a 1998 poll, in which Harris and Associates asked Who you would trust to tell the truth? (1,013 adults in U.S. polled October 1998; error +/- 3 % pts.) Teachers 86% Clergymen or priests 85% Doctors 83% Scientists 79% Judges 79% Professors 77% Police officers 75% (The) ordinary man or woman 71% (The) President 54% Business leaders 49% Members of Congress 46% Journalists 43% Trade union leaders 37% Murphy et al. (2001) also found that from 1996 to 1999 there was a significant decline in patientphysician trust (ES=-0.046) among their survey sample of insured employees who stayed with one primary care physician throughout the study period. (n=2383)

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Slide 13: Links to Health Outcomes Decreased trust has been associated with: Lower patient and physician satisfaction Increased disenrollment (more patients changing doctors, less consistency in care) 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

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Slide 14: Trust and Patient Satisfaction

Patients who trust their physicians are more likely to be satisfied with the care they receive. Dana Gelb Safran (1998) found that sustained physician-patient partnerships with bonds of trust, and knowledge of patients were leading correlates of three outcomes of care: adherence, satisfaction, and improved health status. Patients with 95th percentile trust scores (trust=100) were about 5 times more likely than those with median levels of trust (trust=75) to express complete satisfaction with their physician. (Safran et al. 1998)

David Thom et al. (1999), using the Trust in Physician Scale, found trust to be a significant predictor of patients satisfaction with care received from their physician. More specifically, trust was found to be a significant predictor of: Patients satisfaction with care received from their physician Continuity with the same physician Self-reported adherence assessed at 6 months.

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Slide 15: Trust: Mediator of the Placebo Effect? Trust may also play a role in the phenomenon known as the Placebo Effect. If patients trust that the treatment being prescribed by a physician will help them, they may be more likely to follow the treatment and they may have a more positive attitude, both of which can result in positive health outcomes. Placebo is defined by the Merriam-Webster Dictionary as a.) a medication prescribed more for the mental relief of the patient than for its actual effect on a disorder b.) something tending to soothe Trust may have therapeutic value, enhancing the efficacy of prescribed treatment. (Faden and Beauchamp, in Goold 2002) Trust is important in reducing anxiety, increasing a patients sense of being cared for, which in turn may improve the patients sense of well-being and improve functioning. (Thom and Campbell 1997)

Economic benefits of trust: the potential loss of the placebo effect. How much of what physicians do is actually attributable to the therapeutic value of the patients belief that it will work? It is not know to what extent the efficiency of medical therapy is related to the placebo effect, but for some conditions as much as 20-30% of the therapeutic effect may be mediated by the patients belief that the therapy will work. How much money and time would be spent on second opinions, additional testing, and increased anxiety if patients did not have the peace of mind of trusting their physicians and the treatments they prescribe?

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Slide 16: Trust May Be Fragile

Because of the importance of maintaining trust to a patient-physician relationship, and the ease with which trust can be disrupted, physicians must be constantly vigilant that their words and actions are not being perceived as untrustworthy. Trust is dynamic and fragile, easily challenged by a disconfirming act or by a changing social situation. (Mechanic 1996)

Trust is particularly fragile because negative events are more visible, they carry greater psychological weight, they are perceived as more credible... (Slovac in Mechanic 1996) Trust can be disconfirmed at any time. Although patients discount small lapses because they appreciate that doctors, like others, can have good and bad days, a serious failure to be responsive when needed can shatter even the strongest of relationships. (Mechanic 1996)

Negative experiences, particularly those relating to communication, lower trust in primary care physicians. (Keating et al. 2002)

Patients describe events of blemished trust as a showing of ones true colors.

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Slide 17: Trust: Interpersonal-Institutional Trust in the medical profession can be: Interpersonal: Patients trusting their physicians, health care professionals. Institutional: Patients trusting their hospital, clinic, or the medical profession. (Mechanic and Schlesinger 1996) Interpersonal and institutional trusts are related: A patient must have some level of institutional trust to enter into a new relationship with a physician. They must believe that by beginning the relationship (prior to having interpersonal trust, which is based on experience) they will receive some benefit from the medical profession (institutional trust). Institutional trust can be cultivated from interpersonal trust. If a patient trusts their physician (interpersonal trust) they may be more likely to trust the physicians practice group, the hospital that the physician works with, and in time and with enough positive experiences, the medical profession (institutional trust).

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Slide 18: Minorities Have Less Trust Several studies have found that minority patients, both male and female, are less trusting of their physicians than white patients. Whites generally have higher levels of trust in their physicians. (Kao et al. JAMA 1998) Using the Trust in Physician Scale, Doescher et al. (2000) found that trust scores were especially low for Latino and African American men. When asked if they trust their primary nephrologists 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 et al. 1999)

Still, most patients trust their own physician a great deal.

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Slide 19: Less Institutional Trust African American patients have been found to have less institutional trust than white patients. African American males and females are less trusting of hospitals than their white counterparts. (Boulware et al. 2002) For blood donation, adjustment for respondent mistrust of hospitals and concerns about discrimination in hospitals explained most of the differences in willingness to donate for African American males when compared with white males. (P<0.01) 86% of the white males surveyed reported having donated blood in the past 66% of the African American males (adjusted percentage 83%) 59% of the white females 41% of the African American females African Americans are less trusting of the reasons physicians use or withdraw life sustaining therapies (Hauser 1997, Blackhall 1999) Blackhalls interviews with African American men and women revealed a belief that physicians make life support decisions based on economic status and insurance quality. Hauser found that the African Americans in 3 focus groups also suspected the reasons physicians begin life sustaining therapies - in order to receive the insurance payments. African Americans are less trusting of organ donation (Yuen 1998, Siminoff 1999) Yuen found that African Americans (32%) were more likely than Hispanics (15%) or whites (7%) to believe Doctors would not try as hard to save me if they knew I was an organ donor. (P=.004) In Siminoffs poll of 444 patients, 37.9% of African Americans responded physicians would be less likely to save the life of an organ donor versus 31.2% of whites. African Americans have less trust in the health care system (Gamble 1997, Freedman 1998, Minniefield 2001) Gamble cites examples throughout history, from the civil war to today, that illustrate how African Americans have been exploited and mistreated by the health care system. The African American women interviewed by Freedman believed white doctors overlook symptoms and ailments common in African American communities. Minniefield found that the level of trust in doctors was higher for whites (78%) than African Americans (54%) African Americans have profound mistrust of medical research. (Freedman 1998, Freimuth 2001, Corbie-Smith 1999, Shavers 2001) More details on Slides 21-23

In a nation telephone survey, Corbie-Smith (2002) asked 909 African American and white patients about their views on participating in clinical research and found that: African Americans (41.7%) were more likely not to trust that physicians would fully explain the research they were participating in than whites (23.4%). (P<.01) African Americans (45.5%) were more likely than whites (34.8%) to believe their physician would expose them to harm. (P<.01)

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Slide 20: Trust vs. Trustworthiness Physicians should be concerned with demonstrating that they are trustworthy; the trust of patients will then follow. When talking about trust, it isnt always true that more trust is better. There is a difference between a physician who is trusted and one who is trustworthy. Patients are often the most vulnerable when they are most in need of health care services, and granting trust or too much trust to a physician can limit their ability to discern what is in their own best interest. Unquestioned trust in clinicians may discourage or hinder patients from acting autonomously and taking an active role in their own health care. (Waterman in Anderson and Dedrick 1990) Trust and distrust can be foolish, misplaced, or unjustified. (Goold 2002) Given real variability in performance among institutions and professionals, to trust excessively is to endanger oneself. (Mechanic 1996) Patients with high trust may express lower desires for personal control, which may lead to a more passive role in the medical interaction. (Anderson and Dedrick 1990)

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Slide 21: Extreme Mistrust In the course of their research Freedman (1998) and Friemuth (2001) found that African Americans express high levels of distrust in the health care system, and frequently hold the belief that the health care system is deliberately harming them. The New York Times published an editorial in May of 1992 entitled, The AIDS Plot Against Blacks, refuting the belief that AIDS/HIV and its treatments were a deliberate attempt to kill African Americans. Among other things, many African Americans believe, or are aware of people in their communities who believe that: The government introduced drugs into African American communities. AIDS/HIV is a man made form of genocide. African Americans are used as guinea pigs in medical experiments. Physicians withdraw life-support to African Americans for financial/racial reasons over medical reasons. Gamble 1997, Freedman 1998, Freimuth 2001

The Tuskegee Study (USPHS Study of Untreated Syphilis in the Negro Male) involved deliberate infection with Syphilis. (Gamble 1997, Freimuth 2001)

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Slide 22: Guinea Pigs & Unethical Tests Some of the quotes from Corbie-Smith (1999), Freedman (1998), and Freimuth et al. (2001) illustrate the fears of being used as guinea pigs in unethical medical experiments that are present in African American communities. These fears and beliefs may be passed on though families and communities and contribute to the lack of trust in health care.

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Slide 23: HIV & Genocide These quotes and survey data once again illustrate the fear and distrust that is present in some African Americans. The belief, by a significant number of the population, that African Americans were deliberately infected with HIV or with any disease demonstrates the lack of trust that is present. These quotes and beliefs that were taken from interviews and focus groups illustrate these beliefs. AZT is a plot to poison African American people Urging the use of condoms is a scheme to prevent African American births Distributing clean needles is designed to encourage drug abuse It hit San Francisco and New York at the same time, just like crack. How did it get there unless somebody put it there? Well, this is just my opinion. The population is growing. People are dying at slower rates. So they said, lets see what happens if we infect this (HIV) out there.

Corbie-Smith (1999)

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Slide 24: Views Reflect a History These views are not hysterical, they are not crazy, they did not arise from nowhere, and they do not exist in a vacuum. There is a historical basis for why African Americans hold these views, beliefs, and fears about the health care system. Slavery, sharecropping, peonage, lynching, Jim Crow laws, disfranchisement, residential segregation, and job discrimination formed the substance to which many African Americans reduced all American history, forming a saga of hatred, exploitation, and abuse. (Jones 1991) African Americans fears about exploitation date back to the antebellum period, when slaves and free African American people were used as subjects for dissection and medical experimentation. (Gamble 1997) Gamble (1997) cites several interviews documenting that in the late 1800s and early 1900s the African American community genuinely feared that individuals could be kidnapped for medical experimentation. For many blacks, the Tuskegee Study became a symbol of their mistreatment by the medical establishment, a metaphor for deceit, conspiracy, malpractice, and neglect, if not outright racial genocide. (Jones 1991) Shavers et al. (2001) found that 81% of African Americans responding to a survey reported that they know something about the USPHS Study at Tuskegee. Shavers et al. (2001) also found that 51% of African Americans responding to a survey reported that their knowledge of the Tuskegee Study lowered their trust in medical researchers.

In testimony before the National Commission on AIDS (1990), Mark Smith, MD stated:
[The Black]

communities perspective on medical research has a historical basis which sometimes outweighs the demonstrable integrity and commitment of individual investigators [This resistance] will only be overcome, frankly, with a more long-range effort to reassure African Americans that they will not be the victims of more Tuskegees. (Thomas and Quinn, 1991)

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Slide 25: A Study of Untreated Syphilis: A Failure of Professional Ethics Some of the key points of the Tuskegee Study of Untreated Syphilis in the Negro Male, run by the United States Public Health Service. The study was begun in 1932 and continued until 1972. Approximately 400 African American men in Macon County, 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 1950s. Patients were not told of their diagnosis, but were told they would receive free care and a burial stipend. Patients remained infectious, underwent Lumbar Punctures and other invasive testing. May 16, 1997, President Clinton apologizes on behalf of the US Government

On May 16, 1997 President Clinton spoke to an audience that included 8 survivors of the Tuskegee study. This was the first public apology that had been made on behalf of the U.S. Government for the ethical violations committed during the Tuskegee Study: (Reverby 2000) We cannot be one America when a whole segment of our nation has no trust in America. An apology is the first step, and we take it with a commitment to rebuild that broken trust. We can begin by making sure there is never again another episode like this one. (Reverby 2000) Herman Shaw, a Study survivor, said in response to President Clintons apology: (Reverby 2000) the damage done by the Tuskegee Study is much deeper than the wounds any of us may have suffered. It speaks to our faith in government and the ability of medical science to serve us as a force for good.in my opinion, it is never too late to work to restore faith and trust.

However, while apologies are a good first step, but there is also a need to do more: Theres a tendency to believe that African Americans are reluctant to participate in research because of this one study [Tuskegee] and I think that belittles the concerns of the AfricanAmericans, Dr. Jenkins said. they are concerned about public health research because theyre alienated from American society in any number of ways and this study is the bellwether. Its much bigger than just this study and were going to have to do a lot more work than just apologize for this. (Dr. Bill Jenkins in Kaesuk Yoon, 1997)

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Slide 26: Untreated Syphilis 1934 To prevent the members of the study from receiving treatment outside the study, [Dr. R.] Vonderlehr met with groups of local black doctors in 1934, to ask their cooperation in not treating the men. Lists of subjects were distributed to Macon County physicians along with letters requesting them to refer these men back to the USPHS if they sought care. (Brandt 1978) 1941 In 1941, the army drafted several subjects and told them to begin antisyphilitic treatment immediately. The USPH supplied the draft board with a list of 256 names they desired to have excluded from treatment, and the board complied. (Brandt 1978) 1953 In a 1953 publication, entitled Twenty years of follow-up experience in a long-range medical study, by Eunice V. Rivers, Stanley H. Schuman, Lloyd Simpson, and Sidney Olansky, six conclusions were outlined from the Tuskegee Study experience. The following are excerpts from the first two conclusions: Experience with this project has made several points clear which may benefit anyone now engaged in planning or executing a long-range medical research study: Incentives for maximum cooperation of the patients must be kept in mind. The value of rapport and sympathy between patient and physician, and between patient and nurse or follow-up worker never can be overestimated. Material incentives can merely supplement and support a basic feeling of good will. 1965 The first objection submitted about the Tuskegee Study to the Public Health Service was from Irwin J. Schatz, MD in a letter to Donald H. Rockwell, MD of the Venereal Disease Research Laboratory of the USPHS. I am utterly astounded by the fact that physicians allow patients with potentially fatal disease to remain untreated when effective therapy is available. I assume you feel that the information which is extracted from observation of this untreated group is worth their sacrifice. If this is the case, then I suggest that the United States Public Health Service and those physicians associated with it in this study need to re-evaluate their moral judgements in this regard. (Reverby 2000, pg. 104) 1968 A second letter, from Peter J. Buxtun to Dr. William J. Brown Chief of the Venereal Disease Branch, contained another condemnation. When we discussed the matter in Atlanta, I told you that I had grave moral doubts as to the propriety of this study. While I could see the justification and propriety of the study at its inception, and even up to the time of the widespread use of penicillin, I could not condone the continuation of this study up to the present day. (Reverby 2000, pg. 105)

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Slide 27: Contemporary Experience While, for many, the Tuskegee Study may be a distant past, the mistrust and fear of the medical profession that was cultivated by the study is still a part of many lives and is being reinforced every day by personal experiences. These results of patient surveys, interviews, and focus group discussions illustrate some ways in which the legacy endures: The legacy of the Tuskegee Study endures, in part, because the racism and disrespect for African American lives that it entailed mirror African American peoples contemporary experiences with medicine. (Blendon et al 1995) Negative experiences cited by African American and Latino focus groups include (Thom and Campbell 1997) lack of respect lack of privacy deaths of friends or relatives due to what was perceived to be poor medical care Results of a Kaiser Family Foundation survey conducted in 1999 of 3,884 whites, African Americans, and Latinos. (Lillie-Blanton et al. 2000) 15% of whites 35% of African Americans 36% of Latinos say yes to any: You, a family member, a friend or someone you know was treated unfairly because of race/ethnic background when getting medical care. African American patients rate their visits with physicians as less participatory than whites. Less participation may negatively impact physician-patient communication and partnership forming. While not significant, Asians, Latinos and other minorities also rated their physician visits as less participatory. (Cooper-Patrick et al. 1999)

African Americans and other minorities too often approach health care warily, if they enter the health care system at all. This wariness alone can have health consequences. Junod (1993) writes that 1/3 of a 28 person (27 African American) Atlanta HIV support group said they knew about something called the Tuskegee Experiment. Twenty seven of the 28 said that, growing up, their grandparents, parents, aunt or somebody told them not to let anybody experiment on you. The transaction between doctor and patient has always depended on trust, and Tuskegee is trusts toxin. There are black children who go unvaccinated because of Tuskegee. There are black men and women who believe that AIDS is the governments genocidal instrument because of Tuskegee. There are black men and women with AIDS who wont take AZT because of Tuskegee. People are dying because of Tuskegee. (Junod 1993)

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Slide 28: Building Trust is the Professions Responsibility Mistrust of the medical profession is not a black problem, it is not a white problem, it is a professional and a societal problem that we all must look to address together. Studies and physician experience show that trust is linked to health outcomes and can confer health benefits. For historical and contemporary reasons, minority groups mistrust the medical profession. There are reasons, both historic and contemporary for this mistrust, and these reasons represent profound failures of professional ethics. To reduce health disparities and improve outcomes, the health care profession must build trust among minority populations.

How can the profession build trust that has been breached?

This question can stimulate a discussion of how health professionals can work to help build trust with patients. It is important to understand that mistrust has rational basis and should be taken seriously. Physicians must recognize that though they want to appear ethical, compassionate, competent, and trustworthy, this may not be apparent to (and often is not assumed by) minority patients. When patients act mistrustful it may be worthwhile to explore the roots of the mistrust, acknowledge past misdeeds of the medical profession where relevant, and make an express promise to keep the patient's interests first. One place to start would be with Hall et al. (2001) and four of the dimensions of trust that they outline. These four areas can help physicians and the health care system hone in on specific steps they can take to help build trusting relationships. Fidelity: pursuing a patients best interests and not taking advantage of his or her vulnerability. This can be expressed through the related concepts of agency or loyalty, and it consists of caring, respect, advocacy, and avoiding conflicts of interest. Competence: avoiding mistakes and producing the best achievable results. Honesty: telling the truth and avoiding intentional falsehoods. Dishonesty can include outright lies, half-truths, or deception by silence. Confidentiality: the protection and proper use of sensitive or private information.

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Slide 29: Individual Physicians Can Thom and Campbell (1997) conducted focus groups with 29 individuals, ages 26 to 72, with the goal of determining what factors influence trust in the patient-physician relationship. The results of these focus groups suggest some areas individual physicians can concentrate on to help cultivate patient trust. Categories of patient experiences that the authors found positively or negatively affect trust Thoroughly Evaluating Problems Carefully review history Demonstrate up-to-date knowledge Willingness to refer Searching for additional information Ordering tests Giving best effort Understand the Patients Individual Experience Responding to patients needs Knowing patient and family Taking into account patient/family preferences Avoiding assumptions Tailoring treatment to patient Treating patient as unique Considering whole person Express Caring Concern for patients comfort Expressions of concern/empathy Offering to help Reassuring and comforting Being hopeful Putting the patients interests first Communicate Clearly and Completely Active listening Acknowledging patients concerns Explaining completely and honestly Answering questions Direct communication Being sensitive Being relaxed and calm Build a Partnership Providing options Treating patient as an equal Trusting patient Open to new ideas, flexible

Demonstrate Honesty and Respect for the Patient Admitting mistakes Honoring commitments Respectful, non-judgmental

Provide Appropriate and Effective Treatment Recognizing seriousness of condition Making correct diagnosis Achieving desired outcome Use of preventative services

Address Structural/Staffing Factors Courtesy of office staff Messages to physician Obtaining laboratory results Access to physician On-call arrangements

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Slide 30: What Should Our Organization Do to Help Reduce Disparities? For use with professional association audiences: What can our organization do? [For use with other audiences: Edit to fit your audience.] The Institute of Medicine Report (2002) Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care recommended some steps that the health care profession as a whole can take to help reduce health disparities. Increasing the proportion of underrepresented US racial and ethnic minorities among health professionals. Enhance patient-provider communication and trust by providing financial incentives for practices that reduce barriers to access for minorities and encourage evidence-based practice. Support the use of interpretation services where community need exists. Support the use of community health workers. Implement multidisciplinary treatment and preventive care teams. Implement patient education programs to increase patients knowledge of how to best access care and participate in treatment decisions. Integrate cross-cultural education into the training of all current and future health professionals.

One of the most important steps that the health care community can take to help reduce disparities is to recognize the existence of the disparities and recognize that there are steps that both individuals and groups can take to help address the disparities.

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Slide 31: Sponsored By: This presentation was created by the American Medical Association Institute for Ethics, with the help of the American Medical Association Minority Affairs Consortium.

The Institute for Ethics is an academic research and training center on ethics in health care. www.ama-assn.org/go/ethics

The Minority Affairs Consortium (MAC) is a group of physicians and medical students dedicated to addressing the issues and concerns of underrepresented minority US physicians and improving the health of minority populations. www.ama-assn.org/go/mac

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Brandt AM. Racism and Research: The Case of the Tuskegee Syphilis Experiment. The Hastings Center Report. 1978;8:21-29. Cleeland CS, Gonin R, Baez L, Loehrer P, Pandya KJ. Pain and Treatment of Pain in Minority Patients with Cancer: the Eastern Cooperative Oncology Group Minority Outpatient Pain Study. Ann Intern Med. 1997;127:813-816. Commonwealth Fund. Developing a Health Plan Report Card on Quality of Care for Minority Populations. David R. Nerenz, et al., July 2002. Cooper-Patrick L, Gallo JJ, Gonzales JJ, Vu HT, Powe NR, Nelson C, Ford DC. Race, Gender, and Partnership in the Patient-Physician Relationship. JAMA.. 1999;282:583-589. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and Beliefs of African Americans Toward Participation in Medical Research. J Gen Intern Med. 1999 Sep;14:537-46. Doescher, MP, Saver, BG, Franks, P, Fiscella, K. Racial and Ethnic Disparities in Perceptions of Physician Style and Trust. Arch Fam Med. 2000;9:1156-1163. Epstein AM, Ayanian JZ, Keogh JH, et al. Racial Disparities in Access to Renal Transplantation Clinically Appropriate or Due to Underuse or Overuse? N Engl J Med. 2000;343:1537-1545. Faden R and Beaucamp T. A History and Theory of Informed Consent. New York: Oxford University Press. 1986;274-80. Freedman T. Why Dont They Come to Pike Street and Ask Us? Social Science and Medicine 1998;47:941-947. Freimuth V, Quinn S, Thomas S, Cole G, Zook E, Duncan T. African Americans Views on Research and the Tuskegee Syphilis Study. Social Sci Med. 2001;52:797-808. Gamble VN. Under the Shadow of Tuskegee: African Americans and Health Care. Am J Pub Health 1997;87:1773-1778. Gaskin DJ, Hoffman C. Racial and Ethnic Differences in Preventable Hospitalizations across 10 States. Med Care Res Rev. 2000;57 Suppl 1:85-107. Goold SD. Trust, Distrust and Trustworthiness. J Gen Intern Med. 2002;17:79-81. Gornick ME, Eggers PW, Reilly TW, Mentnech RM, Fitterman LK, Kucken LE, Vladeck BC. Effects of Race and Income on Mortality and Use of Services among Medicare Beneficiaries. N Engl J Med. 1996 Sep 12;335(11):791-799. Guadagnoli E, Ayanian JZ, Gibbons G, McNeil BJ, LoGerfo FW. The Influence of Race on the Use of Surgical Procedures for Treatment of Peripheral Vascular Disease of the Lower Extremities. Arch Surg. 1995 Apr;130(4):381-6.

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Hall MA, Dugan E, Zheng B, and Mishra A. Trust in Physicians and Medical Institutions: What Is It, Can It Be Measured, and Does It Matter? Milbank Q. 2001;79:613-639 Hammonds E. Your Silence Will Not Protect You: Nurse Rivers and the Tuskegee Syphilis Study. In: Evelyn C. White, The Black Womens Health Book: Speaking for Ourselves. Seattle: Seal Press; 1994:323-331. Hannan EL, van Ryn M, Burke J, Stone D, Kumar D, Arani D, Pierce W, Rafii S, Sanborn TA, Sharma S, Slater J, DeBuono BA. Access to Coronary Artery Bypass Surgery by Race/Ethnicity and Gender among Patients Who are Appropriate for Surgery. Med Care 1999;37:68-77. Harris and Associates. Who Do We Trust the Most to Tell the Truth? Harris Poll #62, November 11, 1998 Hauser JM, Kleefield SF, Brennan TA, Fischbach RL. Minority Populations and Advance Directives: Insights from a Focus Group Methodology. Camb Q Healthc Ethics. 1997;6:58-71. Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academy Press; 2002. Jones JH. Bad Blood: the Tuskegee Syphilis Experiment. Collier Macmillan; 1981. Junod T. Deadly Medicine. Gentlemen's Quarterly. 1993:164-171, 231-234. Kaiser Family Foundation. National Survey of Physicians; March 2002. Kao AC, Green DC, Davis NA, Koplan JP, Cleary PD. Patients Trust in Their Physicians: Effects of Choice, Continuity and Payment Method. J Gen Intern Med. 1998;13:681-6. Kao AC, Green DC, Zaslavsky AM, Koplan JP, Cleary PD. The Relationship between Method of Physician Payment and Patient Trust. JAMA. 1998;280:1708-1714. Kaesuk Yoon C. Families Emerge as Silent Victims of Tuskegee Syphilis Experiments. New York Times; May 12 1997:A1,A12. Keating NL, Green DC, Kao AC, Gazmararian JA, Wu VY, Cleary PD. How Are Patients Specific Ambulatory Care Experiences Related to Trust, Satisfaction, and Considering Changing Physicians? J Gen Int Med. 2002;17:29-39 Lillie-Blanton M, Brodie M, Rowland D, Altman D, McIntosh M. Race, Ethnicity, and the Health Care System: Public Perceptions and Experiences. Med Care Res Rev. 2000;57 Suppl. 1:218-235. Mechanic D, Schlesinger M. The Impact of Managed Care on Patients' Trust in Medical Care and Their Physicians. JAMA. 1996;275:1693-1697.

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Mechanic D. Changing Medical Organization and the Erosion of Trust. Milbank Q. 1996;74:171-189. Minniefield WJ, Yang J, Muti P. Differences in Attitudes toward Organ Donation among African Americans and Whites in the United States. J Natl Med Assoc. 2001;93:372-379 Moore RD, Stanton D, Gopalan R, Chaisson RE. Racial Differences in the Use of Drug Therapy for HIV Disease in an Urban Community. N Engl J Med. 1994;330:763-768. New York Times. The AIDS Plot Against Blacks. May 12, 1992:A22. (Cites 1990 Poll) Petersen LA. Racial Differences in Trust: Reaping What We Have Sown? Med Care 2002;40:8184. Peterson ED, Shaw LK, DeLong ER, Pryor DB, Califf RM, Mark DB. Racial Variation in the Use of Coronary Revascularization Procedures: Are the Differences Real? Do They Matter? N Engl J Med. 1997;336:480-486. Reverby S., Ed. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. Studies in Social Medicine. Chapel Hill: University of North Carolina Press; 2000. Rivers E, Schuman S, Simpson L, Olansky S. Twenty Years of Followup Experience in a LongRange Medical Study. Public Health Reports. 1953;68:391-395. Safran DG, Kosinski M, Tarlov AR, et al. The Primary Care Assessment Survey: Tests of Data Quality and Measurement Performance. Med Care 1998;36:728-739. Safran DG, Montgomery JE, Chang H, Murphy J, Rogers WH. Switching Doctors: Predictors of Voluntary Disenrollment from a Primary Physicians Practice. J Fam Pract. 2001;50:130-136. Safran DG, Taira DA, Rogers WH, Kosinski M, Ware JE, Tarlov AR. Linking Primary Care Performance to Outcomes of Care. J Fam Pract. 1998;47:213-220. Schneider EC, Cleary PC, Zaslavsky AM, Epstein AM. Racial Disparity in Influenza Vaccination: Does Managed Care Narrow the Gap between African Americans and Whites? JAMA. 2001;286:1455-1460. Schneider EC, Leape LL, Weissman JS, Plana RN, Gatsonis C, Epstein AM. Racial Differences in Cardiac Revascularization Rates: Does Overuse Explain Higher Rates Among Whites? Ann Intern Med. 2001; 135:328-337. Schneider EC, Zaslavsky AM, Epstein AM. Racial Disparities in the Quality of Care for Enrollees in Medicare Managed Care. JAMA. 2002; 287:1288-1294.

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Shapiro, MF, Morton, SC, McCaffrey, DF, Senterfitt, JW, Fleishman, JA, Perlman, JF, Athey, LA, Keesey, JW, Goldman, DP, Berry, SH, Bozzette, SA. Variation in the Care of HIV-Infected Adults in the United States. JAMA. 1999;281:2305-2315. Shavers VL, Lynch CF, Burmeister LF. Factors that Influence African-Americans Willingness To Participate in Medical Research Studies. Cancer 2001;91(S1):233-236. Siminoff LA, Arnold R. Increasing Organ Donation in the African-American Community: Altruism in the Face of an Untrustworthy System. Ann Intern Med. 1999;130:607-609 Slovac P. Perceived Risk, Trust, and Democracy. Risk Analysis 1993;13:675-82. Thom DH for the Stanford Trust Study Physicians. Physician Behaviors that Predict Patient Trust. J Fam Pract. 2001;50:323-238. Thom DH, Campbell B for the Stanford Trust Study Physicians. Patient-Physician Trust: An Exploratory Study. J Fam Pract. 1997;44:169-176. Thom DH, Ribisl KM, Stewart AL, Luke DA, et al, for the Stanford Trust Study Physicians. Further Validation and Reliability Testing of the Trust in Physician Scale. Med Care 1999;37:510-517. Thomas S, Quinn S. The Tuskegee Syphilis Study, 1932-1972: Implications for HIV and AIDS Risk Education Programs in the Black Community. American Journal of Public Health. 1991;81:1498-1505. USA Today. Trust in Corporations Waning in Wake of Scandals. July 16, 2002. US Department of Health and Human Services, Office of the Inspector General. Racial and geographic disparity in the distribution of organs for transplantation. Bethesda, MD: US Department of Health and Human Services; 1998. Washington Post, Henry J. Kaiser Family Foundation and Harvard University. Racial Attitudes Survey; April 2001. http://www.washingtonpost.com/wpsrv/nation/sidebars/polls/race071101.htm Waterman AS. Individualism and Interdependence. American Psychologist 1981;36:762-773. White RM. Unraveling the Tuskegee Study of Untreated Syphilis. Arch Intern Med. 2000;160:585-598. Yuen CC, Burton W, Chiraseveenuprapund P, Elmore E, Wong S, Ozuah P, Mulvihill M. Attitudes and Beliefs about Organ Donation among Different Racial Groups. J Natl Med Assn. 1998;90:13-19.

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