Distrust, Race and
Research: Beyond the
Legacy of Tuskegee
Stephen B. Thomas, Ph.D.
Professor Health Services Administration
School of Public Health
Director, Maryland Center for Health Equity
University of Maryland
College Park, MD
www.healthequity.umd.edu
https://twitter.com/umdhealthequity
November 20, 2013
HealthCare Plexus Webinar
twitter: #plexus-tuskegee
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
NIH-NIMHD Center of Excellence on Race, Ethnicity and Disparities Research
Architects of Community Engaged Research
Drs. Craig S. Fryer, Mary A. Garza, Stephen B. Thomas, Sandra C. Quinn and James Butler, III
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
buildingtrust.umd.org
Agenda
1. The Historical Context
2. The Challenge
3. The Framework
4. The Opportunity
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
HISTORICAL
CONTEXT
BETWEEN MINORITIES AND RESEARCHERS
Photo Credit: Sandra Quinn
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
THE CHALLENGE
Photo Credit: Sandra Quinn
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
“…The people who ran the study at Tuskegee diminished the stature of
man by abandoning the most basic ethical precepts. They forgot their
pledge to heal and repair. They had the power to heal the survivors
and all the others and they did not. Today, all we can do is
apologize.…”
President William Jefferson Clinton
The White House
May 16, 1997
http://www.cdc.gov/tuskegee/clintonp.htm
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Source: Thomas, S. (2000). The Legacy of Tuskegee AIDS and African Americans.
The Body Positive: The Complete HIV/AIDS Resource
http://www.thebody.com/content/art30946.html#anatomy
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Source: Sandra C. Quinn and Stephen B. Thomas (2000).
Presidential Apology for the Study at Tuskegee. Encyclopedia Britannica:
http://www.britannica.com/EBchecked/topic/1369625/Presidential-Apology-for-the-Study-at-Tuskegee
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
THE OFFICIAL NAME AFTER THE 1997
PRESIDENTIAL APOLOGY
“The U.S. Public Health Service
Study Done at Tuskegee (19321972) ”
Bioethics Principle of Justice
“…Who ought to receive the benefits of
research and bear its burdens? This is a
question of justice, in the sense of "fairness in
distribution" or "what is deserved.” An injustice
occurs when some benefit to which a person is
entitled is denied without good reason or
when some burden is imposed unduly….”
The Belmont Report, April 18, 1979
The Burdens of Race and History
Because of historic inequalities
and racism in the health care
system, many African Americans
may delay seeking health care.
Beliefs about health and illness
also influence community
response to health
communication messages
designed to promote health and
prevent disease.
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Racial Disparities in Health
• African Americans have higher death rates than Whites for
12 of the 15 leading causes of death.
• Blacks and American Indians have higher age-specific death
rates than Whites from birth through the retirement years.
• Minorities get sick sooner, have more severe illness and die
sooner than Whites
• Hispanics have higher death rates than whites for diabetes,
hypertension, liver cirrhosis & homicide
Source: David Williams, Unnatural Causes, 2008
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
20
18
16
14
12
10
8
6
4
2
0
3
2.5
2
1.5
1
B/W Ratio
Deaths per 1,000 population
Infant Death Rates by Mother’s Education, 1995
White
Black
B/W Ratio
0.5
0
<High
School
High
School
Some
College
College
grad. +
Education
Source: David Williams, Unnatural Causes, 2008
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Disparities in Breast Cancer Incidence & Mortality
Female Breast Cancer
Female Breast Cancer
Incidence Rates by Race and
Ethnicity, U.S., 1999–2007
Death Rates by Race and Ethnicity,
U.S., 1999–2007
Source: Centers for Disease Control and Prevention
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Schulman, K. A., J. A. Berlin, et al. (1999). "The effect of race and sex on physicians'
recommendations for cardiac catheterization." N Engl J Med 340(8): 618-626.
“…the race and sex of a patient independently influence
how physicians manage chest pain….” (pg. 618)
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Personal History Matters
Benjamin Thomas
Lucille W. Thomas, RN
The Social Context of
Health Disparities
The ultimate aim is to uncover social,
cultural and environmental factors beyond
the biomedical model and address a broad
range of issues. This approach includes, but
not limited to, breaking the cycle of
poverty, increasing access to quality health
care, eliminating environmental hazards in
homes and neighborhoods, and the
implementation of effective prevention
programs tailored to specific community
needs.
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
THE FRAMEWORK
BETWEEN MINORITIES AND RESEARCHERS
Photo Credit: Sandra Quinn
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Defining Health Disparities and
Health Equity
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Institute of Medicine Definition of Health Care Disparities
Differences, Disparities, and Discrimination:
Populations with Equal Access to Healthcare
SOURCE: Gomes and McGuire, 2001
Health Disparities and Health Equity
• According to Healthy People 2020
• In contrast, a health disparity is “…a particular type of
health difference that is closely linked with social,
economic, and/or environmental disadvantage.”
• Health Equity is “…the attainment of the highest level of
health for all people.”
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Thomas, S. B., S. C. Quinn, et al. (2011). "Toward a Fourth Generation of
Disparities Research to Achieve Health Equity." Annual Review of Public
Health 32(1): 399-416.
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
The Health Equity Action Research Trajectory:
A Platform for 4th Generation Disparities Research
Thomas, S. B., S. C. Quinn, Butler, J., Fryer, C..S., Garza, M.A. (2011). "Toward a Fourth Generation of
Disparities Research to Achieve Health Equity." Annual Review of Public Health 32(1): 399-416
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
THE OPPORTUNITY
BETWEEN MINORITIES AND RESEARCHERS
Photo Credit: Sandra Quinn
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
PATIENT PROTECTION AND AFFORDABLE CARE ACT
Signed into Law March 23, 2010
BETWEEN MINORITIES AND RESEARCHERS
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health
American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
Maryland Health Improvement & Disparities
Reduction Act of 2012
Signed into Law by Governor Martin O’Malley on April 10, 2012.
Transforming Health in Prince George's County:
A Public Health Impact Study
July 2012
http://www.buildingtrustumd.org
“Of all the forms of
inequality, injustice in
health care is the
most shocking and
inhumane.”
Dr. Martin Luther King Jr., in a speech to the
Medical Committee for Human Rights, 1966
THANK YOU
Q&A
Closing Comments