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The Legacy of Tuskegee and Trust in Medical Care: Is Tuskegee Responsible for Race Differences in Mistrust of Medical Care? Dwayne T. Brandon, PhD; Lydia A. Isaac, MS; and Thomas A. LaVeist, PhD Baltimore, Maryland

Financial support: This study was supported by grant R03HS013274 from the Agency for Healthcare Research and Quality and a grant from the Russell Sage Foundation, both awarded to Dr. LaVeist.

Objectives: To examine race differences in knowledge of the Tuskegee study and the relationship between knowl- edge of the Tuskegee study and medical system mistrust.

Methods: We conducted a telephone survey of 277 African- American and 101 white adults 18-93 years of age in Balti- more, MD. Participants responded to questions regarding mistrust of medical care, including a series of questions regarding the Tuskegee Study of Untreated Syphilis in the Negro Male (Tuskegee study).

Results: Findings show no differences by race in knowledge of or about the Tuskegee study and that knowledge of the study was not a predictor of trust of medical care. However, we find significant race differences in medical care mistrust.

Conclusions: Our results cast doubt on the proposition that the widely documented race difference in mistrust of med- ical care results from the Tuskegee study. Rather, race differ- ences in mistrust likely stem from broader historical and per- sonal experiences.

Key words: African Amercans * Tuskegee study U medical mistrust U race differences U health disparties

© 2005. From the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health. Send correspondence and reprint requests for J NatI Med Assoc. 2005;97:951-956 to: Dr. Thomas A. LaVeist, Director, Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 441, Baltimore, MD 21205; phone: (410) 955-3774; fax: (410) 614-8964; e-mail: [email protected]

INTRODUCTION It is well documented that African Americans are

more mistrustful of the medical care system than whites.'-4 Mistrust may be associated with underuti- lization of health services, a greater likelihood of refusal to participate in clinical research, reduced pro- clivity to donate organs or biological material, and more concern about unwitting enrollment in poten- tially harmful medical experiments.2-4 The mistrust expressed by African Americans has been attributed to a number of factors, including limited access to the medical care system, a consequence of historical seg- regation in hospitals, and discourteous treatment and maltreatment by hospital personnel and healthcare professionals.5-8 The Tuskegee Study of Untreated Syphilis in the Negro Male (Tuskegee study) is among the most often cited reasons for mistrust of medical care among African Americans.5,9-11

The Tuskegee study was conducted by the U.S. Public Health Service, lasted for approximately 40 years and involved the intentional deception and denial of treatment of the research subjects. The Tuskegee study represents the model example of the type of harmful experimentation feared by many African Americans.5 Several studies have assessed knowledge of the Tuskegee study among African Americans compared to whites.6"2'13 However, no study has explicitly assessed the relationship between knowledge of the Tuskegee study and mis- trust of medical care among African Americans or racial differences in this relationship. The purpose of this study is to assess racial differences in the rela- tionship between knowledge of the Tuskegee study and mistrust ofmedical care.

METHODS

Study Design and Population During July and August of 2003, participants

were surveyed as part of a cross-sectional study designed to assess mistrust of the healthcare system. We conducted a telephone survey of a random sam-

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ple of residents of Baltimore City, MD. The data were collected as part of a larger study that focused on mistrust of the healthcare system among minori- ties at three sites: Washington, DC; New York City; and Baltimore. The Baltimore site focused on African Americans. This was in part due to the fact that the city has a long-standing, economically diverse, yet relatively segregated black population. This characteristic of Baltimore made sampling an economically diverse black population feasible without oversampling. In addition, each study loca- tion conducted a site-specific substudy. Baltimore was selected as the site for the Tuskegee substudy because of its large African-American population.

Data were collected using the sampling method described by Waksberg.'4 We sampled households

Table 1. Demographic Profile of the Sample (N=401)

Variable Percent

Age Younger than 25 14.9 25-34 12.1 35-44 17.4 45-54 21.7 55-64 14.4 65 or older 19.6

Sex Male 28.7 Female 71.3

Race White 25.2 Black 69.1 Other 5.7

Income Less than $5,000 8.7 $5000-$9999 15.2 $10,000-$14,999 11.5 $15,000-$24,999 12.9 $25,000-34,999 13.8 $35,000-49,999 12.9 $50,000-$59,000 8.1 $60,000 or more 16.9

Education Less than high school 25.6 High-school graduate 32.7 Some college 19.6 College graduate 22.1

Health Insurance Medicaid 21.9 Medicare 32.9 Private 50.9 Uninsured 23.9

and selected the household member age .18 who had the most recent birthday. Baltimore City has 167 telephone exchanges (first three numbers of a tele- phone number) within two area codes (410 and 443). The 45 exchanges that were associated exclusively with cellular phones were excluded. Another 23 exchanges were excluded because they are exclu- sively owned by large businesses or institutions, such as universities, large corporations, or city and state government. We selected a 1% random sample (9,899) of the

remaining 99 exchanges with all possible combina- tions of the last four digits (0001-9999). Trained interviewers called each number, documenting those that were disconnected or not in service, those who did not speak English, those who refused and those who agreed to participate in the interview. For the telephone numbers answered by an answering machine, a message was left, and the number was called back a minimum oftwo times. The interview- ers made contact (actually talked with an eligible respondent) with 783 people 401 completed the interview (51.2%) and 382 refused. The interviewers obtained oral consent. Respondents were compen- sated $20 for their participation.

Measures Knowledge of the Tuskegee study was assessed

by six items. The first five items were multiple- choice, with one correct response for each item. These survey items assessed factual information about the Tuskegee study. The final item asked if a similar study was possible today.

Medical mistrust was assessed using the seven- item Medical Mistrust Index (MMI).' 'S The scale employs Likert-type response codes ranging from "strongly disagree" to "strongly agree." Examples of items included in the mistrust scale are: "Patients have sometimes been deceived or misled by health- care organizations" and "Healthcare organizations put the patient's health first." The MMI shows good reliability (Chronbach's a = 0.76).

Other measures used in the study were race, age, sex, education, income and insurance status. Age, education and income were analyzed as continuous variables. Race and sex were analyzed as binary variables. Insurance status categories were private, Medicaid, Medicare and uninsured. For analysis, three dummy variables were created for insurance status with private insurance as the reference group.

RESULTS

Respondent Characteristics Table 1 shows the demographic profile ofthe sam-

ple, which is not unlike the distribution of demo-

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graphic characteristics for the city of Baltimore. The sample was 69.1% African-American and 71.3% female. There was a broad age range within the sam- ple, although 51.2% of the sample was between the ages of25 and 54 years. Income ranged from <$5,000 to >$60,000. Most of the sample (48.3%) reported their income to be <$25,000, although 34.8% report- ed an income between $25,000 and $59,000. The remaining 16.9% reported an income of>$60,000.

Nearly one-third of the sample (32.7%) reported graduating from high school, 25.6% had less than a high-school education. The rest of the sample reported having graduated from college (22.1%) or having completed some college (19.6%) without graduating. The largest proportion of the sample reported having private health insurance (50.9%), followed by Medicare (32.9%), Medicaid (21.9%) and those reporting no health insurance (23.9%). It should be noted that due to the overlap of the pri- vate, Medicare and Medicaid categories among respondents, insurance status proportions sum to more than 100%. We first asked respondents if they had ever heard

of the Tuskegee study. Respondents who indicated they had heard of the study were asked the items that

assessed factual information about the study. Respondents who were unfamiliar with the study were read a brief description (taken from the CDC website) and then asked if they thought a study like the Tuskegee study could happen today.

Approximately two-fifths of the total sample (41.9%, n=168) had heard of the Tuskegee study. However, there were no significant race differences in awareness of the study, with similar proportions among black (41.7%, n=70) and white (44.6%, n=75) respondents reporting having heard of the Tuskegee study. Knowledge of specific aspects of the Tuskegee study was further assessed among those who were aware of the study.

Table 2 shows the results of responses to the knowledge questions regarding the Tuskegee study. Most participants correctly reported when the Tuskegee study began. However, a large minority of both blacks (24.4%) and whites (31.7%) believed the study began two decades later, in the 1950s. The remaining respondents believed the study began in the 1890s (blacks: 4.9%, whites: 0%) or in the 1970s (blacks: 7.3%, whites: 2.4%). A larger proportion of whites (46.3%) than

blacks (32.5%) correctly answered when the study

Table 2. Knowledge about Tuskegee among Black and White Respondents Aware of the Tuskegee Study (n=1 45)

Question Responses Black (n=70) White (n=75) P Value

In what decade did the study begin? 1890s 4.9% 0% 1930s 63.4%7 65.9% 0.294 1950s 24.4% 31.7% 1970s 7.3% 2.4%

In what decade did the study end? 1930s 6.0% 4.9% 1950s 47.0% 41.5% 1970s 32.5% 46.3% 0.421 1980s 14.5% 7.3%

How many men were in the study? 75 34.1% 12.2% 200 28.0% 51.2% 600 22.0% 19.5% 0.538 1,000 15.9% 17.1%

Which organization conducted the study? U.S. Public Health Service 25.3% 26.8% 0.898 Tuskegee Institute 29.1% 26.8% Johns Hopkins 5.1% 2.4% US Army 40.5% 43.9%

Did the researchers give the men syphilis Gave it to them 75.3% 52.8% or did they already have it? Already had it 24.7% 47.2% 0.019

Do you think it is possible for a study like Yes 76.6% 47.2% <0.001 this to occur today?* No 17.9% 43.8%

The proportions of correct responses to items 1-5 are presented in bold; the proportion of those answering "yes" to item 6 is presented in bold; * this question was asked of the full sample (n=378)

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ended. However, the majority of both black and white respondents answered incorrectly. Similar but small proportions of blacks (6.0%) and whites (4.9%) reported the study came to an end four decades early, in the 1930s. However, substantial percentages of blacks (47.0%) and whites (41.5%) believed the study ended in the 1950s. A somewhat higher proportion of blacks (14.5%) than whites (7.3%) thought the study concluded in the 1980s.

The largest proportions of both black and white respondents underestimated the size of the Tuskegee study. The most common response for blacks was that 75 men participated in the study. The majority of whites thought only 200 men were in the study. Only 19.5% of whites and 22% of blacks correctly responded that approximately 600 men participated in the study.

The Tuskegee study was conducted by the U.S. Public Health Service. The facilities of the Tuskegee Institute (now Tuskegee University) were used for some aspects ofthe study. Only 26.8% ofwhites and 25.3% of blacks knew that the U.S. Public Health Service conducted the study. More than 29% of blacks and nearly 27% of whites thought the Tuskegee Institute conducted the study. Large pro- portions of blacks (40.5%) and whites (43.9%) believed the U.S. Army was the organization that conducted the Tuskegee study. A small proportion of blacks (5.1%) and whites (2.4%) reported that the study was conducted by Johns Hopkins University.

Most respondents believed the men followed dur- ing the Tuskegee study were given syphilis by the study team. The vast majority of blacks (75.3%) and just over one-half of whites (52.8%) believed this, although a higher proportion of whites (47.2%) compared to blacks (24.7%) correctly indicated the men followed during the Tuskegee study "already had it [syphilis]." A substantial percentage of white respondents (47.2%) believed such a study is possi- ble today. However, a significantly higher proportion of black respondents (76.6%) believed a similar

Table 3. The Relationship among Race, Awareness of Tuskegee and Belief that a Similar

Study Could Happen Today (n=378)

Can Tuskegee P Value Happen Again? No Yes

Whites (n= 104) Unaware of Tuskegee 36.4% 63.6% <0.02 Aware of Tuskegee 62.2% 37.8%

Blacks (n=284) Unaware of Tuskegee 23.1% 76.9% <0.05 Aware of Tuskegee 12.9% 87.1%

study could occur today. The belief that a similar study could happen again

is particularly germane to the issue ofrace differences in medical care mistrust. In Table 3, we examined the relationship among race, awareness of the Tuskegee study and the belief that a similar study could happen again. After hearing about the Tuskegee study, 63.6% ofunaware whites believed a similar study could hap- pen again today. However, a much smaller proportion of whites already aware of the Tuskegee study (37.8%) believed a similar study could happen again today. By contrast, 76.9% of unaware blacks and 87.1% of blacks already aware of the Tuskegee study believed a similar study could happen again today. These findings indicate that, for whites, being told about the Tuskegee study made a tremendous differ- ence in their belief that a similar study could happen again. However, for blacks, being made aware of the Tuskegee study made little difference in their belief that such a study could happen again. We also examined the relationship between race

and the incidence of the belief that a similar study could happen again. The proportion of initially unaware blacks who believed a similar study could happen again was compared to the proportion for their white counterparts. This resulted in a ratio of 1.21 (p<0.05), indicating blacks were 21% more likely to believe a similar study could happen again. A similar comparison was made among those who were aware of the study. This comparison produced a ratio of 2.30 (p<0.05), indicating that blacks were 130% more likely to believe a similar study could happen again. Overall, blacks were more likely to believe a similar study could happen again regard- less oftheir awareness ofthe Tuskegee study. We used Ordinary Least Squares Regression

analyses from SPSS 12 to analyze the relationship between race and mistrust of the medical care sys- tem using the MMI. We also examined whether knowledge of the Tuskegee study is associated with medical mistrust and whether it attenuates the rela- tionship between race and mistrust. We specified a series of regression models.

In Model 1, we tested for an unadjusted effect of race on mistrust. There was a positive association, indi- cating that blacks had higher scores on the MMI and therefore higher levels ofmistrust (b=0. 100, p<0.05).

In Model 2, we added sex, education, age, income and insurance status to test for a change in the race effect. Black race remained a significant predictor ofmistrust, controlling for the demograph- ic variables and insurance status (b=0. 166, p<0.05).

In Model 3, a binary variable indicating whether the respondent had heard of the Tuskegee study was added. Similar to our findings for the previous mod- el, black race remained an independent predictor of

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mistrust after adjusting for demographic variables and awareness ofthe study (b=O. 171, p<0.05).

Finally, in Model 4, we computed a Tuskegee Knowledge Summary Score by summing the correct answers to the five Tuskegee study questions. Adjusting for knowledge of the Tuskegee study resulted in a small reduction in the strength of the relationship between black race and mistrust. How- ever, the relationship remained significant (b=O. 164, p<0.05). Overall, the results indicate that black race remained a significant predictor of medical care mistrust controlling for demographic variables, including income and insurance status, as well as awareness and knowledge ofthe Tuskegee study.

DISCUSSION The results indicate that there was little differ-

ence between black and white respondents in know- ledge of the Tuskegee study. Most people were unaware of the Tuskegee study, with only approxi- mately two-fifths of both black and white partici- pants indicating they had heard of it. Among those that were aware of the study, there was limited accu- rate knowledge of the details, including when it began and ended, the total number of participants, the organizations that conducted the study and how the subjects were infected with syphilis. These find- ings suggest that misinformation and incomplete information concerning the Tuskegee study are quite prevalent. Moreover, these findings emphasize that Tuskegee is not a central event in the African-Amer- ican ethos; instead for some, the Tuskegee study rep- resents another example of why the medical system cannot be trusted.

Nearly twice as many black respondents believed that Tuskegee study research investigators infected the study participants with syphilis, and blacks- compared to whites-were much more inclined to believe a study similar to Tuskegee could hap- pen today regardless of initial awareness of the study. These two questions relate more to the issue of trust than the others, which are more fact-based questions about a specific set ofhis- torical events. Finally, the results show that black race-but not knowledge ofthe Tuskegee study-was predictive of medical care mis- trust, controlling for demographic variables. While there are not significant race differences in knowledge about the historical events, there are clear racial differences in trust. Put another way, trust varies by race, but it is unlikely that the Tuskegee study is a primary reason for widespread mistrust of medical care among African Americans.

The findings are supportive ofthe notion that historical and continuing patterns of negative

interactions with the healthcare system are likely more important determinants ofmedical care mistrust among African Americans than awareness or knowl- edge of the Tuskegee study.5",6 Most likely, African- American mistrust of the medical care stems from a general mistrust of societal institutions. Like a num- ber of other American institutions, healthcare has a long history of mistreatment ofAfrican Americans. The experience of discrimination and devaluation faced by African Americans fosters an environment of skepticism and mistrust for large healthcare systems or organizations7"7 as well as individual providers.2

The greater level ofmedical care mistrust experi- enced by African Americans compared to whites has been implicated in lower levels of patient satisfac- tion with care, decreased participation in health pro- motion, lower participation in health research and less willingness to donate blood or cadaveric organs among African Americans.'4'6'18 As long as high lev- els ofmistrust exist among African Americans, there may be continued higher rates of underutilization of healthcare within this population. The Tuskegee study is a form of confirmation of what is already known or speculated about African-American treat- ment in medical systems. This continued detach- ment from the medical establishment will compli- cate efforts to eliminate racial disparities in health.

The study does have several limitations. For instance, the results may not generalize to a national sample. The refusal rate was relatively high, which could affect the generalizability of the findings. Moreover, we do not have data on respondents who refused to participate in the survey. As a result, we do not know if nonparticipation is associated with higher levels of mistrust. In addition, the analyses included only black and white participants; there- fore, we cannot be sure how knowledge of the Tuskegee study may be related to medical mistrust

Table 4. Mistrust of Medical Care Regressed on Race, Knowledge of Tuskegee and Demographic Variables

Model 1 Model 2 Model 3 Model 4 Constant 2.61 2.48 2.44 2.45 Black 0.100* 0.166 0.171* 0.164* Female -0.034 -0.034 -0.031 Education -0.034 -0.007 -0.011 Age 0.058 0.067 0.062 Income 0.066 0.087 0.080 Medicare -0.031 -0.024 -0.027 Medicaid 0.016 0.019 0.021 Uninsured 0.043 0.050 0.047 Heard of Tuskegee -0.092 Tuskegee Summary -0.078 R2 (Adj) 0.010 0.017 0.021 0.022

* p<0.05

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in other minority groups. Although interviewers were trained and monitored, voice inconsistencies by interviewers reading the CDC script may have influenced responses, yet we have no reason to believe there were such inconsistencies. In spite of these limitations, we believe this remains a strong study and advances our understanding of race differ- ences in mistrust ofmedical care.

The results suggest that it is time that we move beyond Tuskegee as a catch-all for why African Americans mistrust medical care and begin to address the root causes. Moving beyond the focus on the Tuskegee study has implications for increasing African-American participation in timely research studies and health promotion as well as potentially reducing health disparities. Addressing medical mis- trust must begin with a process of engagement with African Americans on the part of medical care providers as well as researchers.3'4 However, once breached, trust is difficult to re-establish.

Through the implementation of policies that address the concerns over a Tuskegee-like experi- ment happening again, major strides have been made in insuring protection for participants in research. Moreover, an increasing number of train- ing programs now offer cultural competency train- ing.'9 Many of these improvements may not be fully comprehended among those whom the policies were implemented to protect.4'20 These important strides need to be articulated and presented to communities of color to improve the ability of members to advo- cate for themselves. More importantly, healthcare providers, workers and staff should focus on improv- ing the overall experience of African-American healthcare consumers.

REFERENCES 1. LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about racism, medical mis- trust and satisfaction with care among African-American and white car- diac patients. Med Care Res Rev. 2000;57(Suppl 1):1 46-16 1. 2. Boulware LE, Cooper LA, Ratner LE, et al. Race and trust in the health care system. Public Health Rep. 2003;1 18:358-365. 3. McGary H. Distrust, social justice and health care. Mt Sinai J Med. 1999; 66:236-240. 4. Corbie-Smith G, Thomas SB, St. George DM. Distrust, race and research. Arch Intem Med. 2002;162:2458-2463. 5. Gamble V. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997;87:1773-1778. 6. Freimuth VS, Quinn SC, Thomas SB, et al. African Americans' views on research and the Tuskegee syphilis study. Soc Sci Med. 2001;52:797-808. 7. Byrd WM, Clayton LA. An Amercan health dilemma: a medical history of African Americans and the problem of race: beginning 1900. New York: Routledge Publishers. 2002;27-144. 8. Smith DB. Health Care Divided: Race and Healing a Nation; University of Michigan Press; 1999. 9. Chandra A, Paul il DRP African-American participation in clinical trials: recruitment difficulties and potential remedies. Hospital Topics. 2003;81:33-38. 10. Seto B. History of medical ethics and perspectives on disparities in minority recruitment and involvement in health research. Am J Med Sci.

2001;322:246-250. 11. Killien M, Bigby JA, Champion V, et al. Involving minority and underrep- resented women in clinical trials: the national centers of excellence in women's health. J Womens Health Gend Based Med. 2000;9:1061-1070. 12. Green B, Maisiak R, Wang M, et al. Participation in health education, health promotion and health research by African Americans: effects of the Tuskegee syphilis experiment. J Health Educ. 1997;28:196-201. 13. Shavers VL, Lynch CF, Burmeister LF. Factors that influence African Americans' willingness to participate in medical research studies. Cancer. 2001;91:233-236. 14. Waksberg J. Sampling methods for random digit dialing. J Am Stat Assoc. 1978;73:40-46. 15. LaVeist TA, Isaac LA, Harris-Peterson S, et al. Assessing the validity and reliability of a multidimensional measure of distrust of medical care settings: the Medical Mistrust Index. Under Review. 16. Bates RB, Harris TM. The Tuskegee study of untreated syphilis and public perceptions of biomedical research: a focus group study. J Natl Med Assoc. 2004;96:1051-1 064. 17. Petersen LA. Racial differences in Trust: reaping what we have sown? Med Care. 2002;40:81-84. 18. Boulware LE, Ratner LE, Cooper LA, et al. Understanding disparities in donor behavior: race and gender differences in willingness to donate blood and cadaveric organs. Med Care. 2002;40:85-95. 19. Cole PM. Cultural competence no mainstream medicine: responding to increasing diversity and changing demographics. Postgrad Med. 2004; 116:51-53. 20. Taylor KM, Bezjak A, Fraser RHS. Informed consent for clinical trial: is sim- pler better. J Natl Cancer Inst. 1998;90:644-645. A

C,EAl~,

Boston University School of Medicine and Boston Medical Center are seeking an established academic leader to serve as the Wade Professor of Medicine and Chairperson of the Department of Medicine at Boston University School of Medicine and Physician-in-Chief at Boston Medical Center. This individual will provide leadership for the clinical, research, and teaching activities of the 300-member Department of Medicine. S/he will also manage the Evans Memorial Endowment whose proceeds support the academ- ic mission of the Department. Candidates should have an international reputation in biomedical research, outstand- ing clinical skills, a strong record of training and mentoring, and be board certified. S/he should also have demonstrated abilities in the management and administration of complex organizations. Candidates should send a cover letter and a current curriculum vitae to: Thomas J. Moore, M.D., Associate Provost for Clinical Research, Chairman, Search Committee, Boston University Medical Center, 715 Albany Street, A-206, Boston, MA 02118; Email: [email protected]

Boston University is an equal opportunity and affirmative action employer.

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