NatIonal Center for BiQethics

In Research and Health Care

TUSKEGEE
1

Table of Contents

Vision Statement .. 3
Mission .3
Situational Analysis ..4
Theoretical Framework 6
Major Goal ...7
Sub Goals 7
Ethical Approach ...8
Objectives 9
Strategies .. 11
Tactics ... 11
Evaluation ..11
Outcome .13
References .14


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National Center for Bioethics in Research

and Health Care
Strategic Plan 2010- 2020













Dr. Rueben C. Warren, Director, NCBRHC, Tuskegee University Bldg 44-107, 334-724-4554,
warrenr@tuskegee.edu
3

Optimal Health is the greatest state of aliveness that one can attain.
John T. Chissell, M.D. (in the book, Pyramids of Power)

Vision Statement
Shaping the Future by Promoting Optimal Health: The Future is NOW!

Mission
To enhance social justice and the Optimal Health of African Americans and other health
disparity populations through research, education and service in bioethics, public health
ethics, health disparities and health equity.
Rationale: Philosophers became interested in bioethics and other forms of applied
ethics approximately 30 years ago. During the 1920s-1930s, logical positivism taught
that the ethics defied logic and reason, were not true or false and were fundamentally
the expression of feelings. However, the current approach began in the1960s as a
result of abuse in medical experimentation on human subjects (i.e. Nuremberg trials
among Nazi doctors and the United States Public Health Services Syphilis Study).
Over the last 10 years, another sphere of ethics evolved called public health ethics,
which emphasizes the interest and health of groups, the social justice of the distribution
of social resources (i.e. health insurance) and the positive or social/human rights of
individuals. (1) When the Bioethics Center was establish in 1999, the initial focus on
bioethics was cutting edge and consistent with the field. Current expansion of bioethics
to include the sphere of public health ethics is timely focused based on ongoing
challenges among the Syphilis Study Survivors and their families, whose legacies we
must honor. The current demands of health disparity populations, particularly in Black
Belts counties and the proposed 10 Year Strategic Plan for the Center will also expand
to include public health ethics, health disparities, and health equity.
The mission of the Bioethics Center will be accomplished through the following major
goal, subgoals, objectives, strategies, tactics and a rigorous evaluation system.



4

The United States government did something that was wrongdeeply, profoundly, morally
wrong.
1

President William Jefferson Clinton, 1997

Situational Analysis
In 1997, President Bill Clinton apologized for the United States Public Health Service
(USPHS) Syphilis Study at Tuskegee (hereafter, the Syphilis Study) and ordered the
establishment of the Tuskegee University National Center for Bioethics in Research and
Health Care located on the university campus.
1
In fact, President Clinton directed the
U.S. Department of Health and Human Services to award a planning grant, so the
school can pursue establishing a center for bioethics in research and health care.
1

President Clinton also said, the center will serve as a museum of study and support
efforts to address its legacy and strengthen bioethics training.
1

The Presidential Apology and establishment of the Bioethics Center resulted from a
1995 meeting on the campus of Tuskegee University. A group of people interested in
the injustice of the study met to ascertain the need for a federal apology for the Syphilis
Study to the surviving men, their families, residents of the city of Tuskegee, including
Tuskegee University and Macon County, and to the African American population. The
committee, entitled The Tuskegee Legacy Committee, consisted of a national cross-
section of scientists; ethicists; historians; federal, state, and local public health officials;
state and local residents; and educators from Tuskegee University. This committee
authorized by the universitys President Benjamin F. Payton, PhDwas empowered by
students, faculty, and staff at Tuskegee University, the residents of the Tuskegee
community, and many others around the country.
Since that time, the Bioethics Center has focused on educating the public about the
Syphilis Study and the critical issues related to bioethics in research and health care,
targeting African American and other underserved populations. However, in recent
years, the field of bioethics has broadened to include public health ethics, which focuses
on the interest and health of groups, social justice in the distributions of social
resources, and the human rights of individuals.
2
As a powerful example, a rigorous
review of the methodology used in the original Syphilis Study suggests that the study
was an epidemiological, rather than a biomedical, investigation.
The sample population selected was based on demographic variables: Undereducated,
low-income, African American, male, and living in the rural south (purportedly with
syphilis).
5

A rigorous assessment of the Syphilis Study, the emergence of additional critical

bioethical issues associated with justice and human research internationally, growing
health disparities nationally, and a multidisciplinary set of health determinants
demanded the initial scope of bioethics to be examined. As a result, the Bioethics
Center faculty and staff are expanding their work to encompass, in addition to efforts in
bioethics in research and health care, include research, education and evidencebased
service related to public health ethics and health. The mounting challenges in the
various areas of health-related research, health professions education and community
engagement demand an expanded vision, mission multi-level goals and sub goals,
objectives, strategies, tactics and evaluation in order to realize the original intent of the
Bioethics Center.
















6

Theoretical Framework
Authentic Culturecology
3
(depicted below) is the theoretical framework (model) for this
Strategic Plan. Culture undergirds this model and provides a unique approach to
public health which allows the integration of bioethics and public health ethics.


Over the next ten years, the Bioethics Center will focus on spheres of ethics (i.e.
bioethics and public health ethics) and public health and spirituality. Public health is
viewed as synonymous with social justice because an integral part of bringing good
health to all is the task of ameliorating patterns of systemic disadvantage that
undermine the well being of people whose prospects for health are so limited that their
life choices are not even remotely like those of others.
4
Public health and ethics seek
to achieve the common good, so do religion and spirituality.
7

Spiritually encompasses religion in that it addresses the individuals acknowledgment of

a power greater than themselves.
5
Within the context of a sound spiritual foundation,
religion and religious practices may be realized. Religion and ethics are often assumed
to be synonymous, because most major religions have ethical teachings associated with
them. The fundamental ethical tenets of virtually all societies are based on religious
teachings.
2, p. 7
However, there is no necessary connection between religion and
ethics. A person can be ethical and be a non-believer.
2, p. 7
Because of the focus of
the USPHS Syphilis Study and the history of the Tuskegee University, the Bioethics
Center is primarily targeting the African American population.

Major Goal
To enhance the well-being of people throughout the United States by promoting ethical
considerations of human health related research, education and service, particularly for
African Americans and other health disparity populations in Black Belt counties and
beyond, derived from the analysis and synthesis of targeted issues associated with
race/ethnicity, gender and class.

Sub Goals
Measurable sub goals include the following:

A) To enhance health research enterprise focusing on bioethics, public health ethics
and health disparities related to health and health care among selected health
disparity populations in targeted Black Belt counties. Where appropriate, health
equity will be considered.

B) To advance education, both in and out of the classroom, onpublic health ethics and
bioethics related to health and health care among selected health disparity
populations in targeted Black Belt counties and other parts of the United States.
Where appropriate, global populations will be considered.

C) To assure health related service associated with bioethics, public health ethics and
health disparities related to health and health care among selected health disparity
populations in targeted Black Belt counties and other parts of the United States.
Where appropriate, global populations will be considered.
8

Ethical Approach
The vision, mission and major goal of the Center are based on the interdependence of
spheres of ethics, social justice and public health. Ethics defined broadly is, the wide-
ranging study of right and wrong, as well as good and bad, insofar as these pertain to
conduct and character.
6
Social justice, in this Strategic Plan focuses on fairness, who
decides, why and when. Public health, in this Plan is anything that affects the
community on a mass basis. These broad definitions are used to allow more narrow
descriptors in each subgoal as they are more fully developed. The trans-disciplinary
team approach to bioethics and public health ethics related to health and health care
among selected health disparity populations in targeted Black Belt counties and
beyond requires capacity beyond cultural competency and demands cultural
proficiencies associated with race/ethnicity, gender, class and geographic locale. None
of these proficiencies are achievable without a firm ethical foundation.

The challenge for Tuskegee University is to capture the unique historical and current
nuances related to being low income, male, African American, living in the rural south.
These demographics best describe the Syphilis Study Survivors, and Tuskegee
University is singularly qualified to best interpret what happened as a result of the
USPHS Syphilis Study. The Bioethics Center at Tuskegee University is positioned to
inform national policies to prevent the reoccurrences of similar abuses in human health
research and service to African American and other health disparity populations.
Moreover, vigilance required to protect the publics heath must be maintained by
institutions trusted by vulnerable populations.











9

Objectives
A) To enhance health research enterprise focusing on bioethics, public health ethics
and health disparities related to health and health care among selected health
disparity populations in targeted Black Belt counties. Where appropriate, health
equity will be considered.
I) To appropriately determine the family member of the Syphilis Study
Survivors to assess the adverse physical, social and psychological
health consequences of the syphilis study
II) To investigate the continuing health disparities, if any, among direct
family member of the Syphilis Study Survivors
III) To evaluate the availability, accessibility of acceptability of health
care services for those persons granted health insurance as a
result of their family membership status associated with the
Syphilis Study Survivors.

B) To advance education, both in and out of the classroom, on public health ethics
and bioethics related to health and health care among selected health disparity
populations in targeted Black Belt counties and other parts of the United States.
Where appropriate, global populations will be considered
I) To conduct a needs assessment to determine the influence of the
Syphilis Study legacy willingness to trust the health research and
health care industries.
II) To design educational models for grades K-12 on spheres of ethics
associated specifically with the Syphilis Study to positively impact
on behavioral health of at risk children. (i.e. violence and anti
social behavior, obesity, etc)
III) To design, implement and evaluate educational and service-
learning experiences to enhance the intellectual capacity of
undergraduate and graduate students to build capacity in various
spheres of ethics (community service projects for academic credit
and graduate degree granting programs in bioethics)

10

C) To assure health related service associated with bioethics, public health ethics
and health disparities related to health and health care among selected health
disparity populations in targeted Black Belt counties and other parts of the United
States. Where appropriate, global populations will be considered.

I) To enhance comprehensive health care services in Alabama Black
Belts counties other parts of the country.

II) To scientifically evaluate the efficacy of these health care service to
determine there generalizability.

III) To assure that principles of bioethics and public health ethics have
measurable criteria included in their protocols to reduce instances
of ethical violation and increase measures of trust.






















11

Strategies

Strategies address the question, How do we meet the Objectives? How do we get it
done? They should be supported by a composite of action plans and programs.
Strategies are primarily qualitative and can be translated into quantified tactics and
actions plans.

Tactics
Tactics detail how the strategies will be implemented and what specific activities are
planned. They must be operational in nature and lend themselves to evaluation.
Tactics are subject to change that can be monitored and controlled.
(The strategies and tactics will be developed in concert with the scientists and other program personnel
who will seek funding to implement the objectives.)

Evaluation
For the purpose of the Strategic Plan, evaluation is defined as the process of
determining the value or amount of success in the achievement of predetermined
objectives.
7
This includes at least the following steps: formulation of the objectives;
identification of the proper criteria to be used in measuring success; determination and
explanation of the degree of success; recommendations for future program activities.
7

The following five areas will be used in evaluating the activities in the Bioethics
Center Strategic Plan:
1. Effort-the evaluations in this category have as their criteria of success the
quantity and quality of activities that take place. This represents an
assessment of input or energy regardless of output that is intended to
answer the questions "What did you do? "How well did you do it?"

2. Performance-the performance or effect criteria measures the results of
the effort rather than the effort itself. This requires a clear statement of
ones objective.
How much is accomplished relative to an immediate goal? Did nay
change occur? Performance can be measured at several levels-the
number of cases found, the number hospitalized, the number cured or
rehabilitated. Performance standards often involve several assumptions;
however, in general, evaluation of performance involves fewer
assumptions than evaluation of efforts.
12

3. Adequacy of Performance-this criterion for success refers to the degree

of which effective performance is adequate to the total amount of need.
Adequacy is obviously a relative measure depending upon how high one
sets ones goals.

4. Efficacy-a positive answer to the question, "Does it work" Often gives rise
to the following questions: Is there any better way to obtain the same
results? Efficacy is concerned with the evaluation of alternative paths or
methods in terms of cost and money, time, personnel, and public
convenience. In a sense, it represents the ratio between effort and
performance, output divided by input.

5. Process-in the course of evaluating the success or failure of a program, a
great deal can be learned about how and why a program works or does
not work. The analysis of process can have both administrative and
scientific significance particularly when the evaluation indicates that a
program is not working as expected. The analysis of process will be
made according to four main dimensions beginning with: 1) the attributes
of the program itself; 2) the population exposed to the program; 3) the
situation or context within which the program takes place; and 4) the
different kinds of effects produced by the program.
7

These five criteria will be utilized to measure the impact of each objective for
administrative, programmatic, and outcome purposes.











13

Outcome
It is expected that as the Strategic Plan is implemented both process and outcome
measures will evolve and appropriate adjustment will be made. However, the Plan has
followed each step in the strategic planning process starting with completing a
situational analysis, undertaking a visioning process, interviewing with key stakeholders,
reviewing targeted literature, maximizing economies of scale and assuring cultural
proficiencies. Once fully implemented, the target audiences will surely be on the journey
towards Optimal Health.



















14

References
1. The White House Office of the Press Secretary. Remarks by the president in
apology for study done in Tuskegee., 1997. Accessed on October 16, 2009 at
http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html
2. Bayer R, Beauchamp DE. Public health ethics: Theory, policy, and practice. New
York: Oxford University Press, 2007.
3. King LM. Development of authenticity in public health: A culturecology model as
a culture critique. In: Chunn JC, ed. The health behavioral change imperative:
theory, education, and practice in diverse populations. New York: Kluwer
Academic/Plenum Publishers, 2002.
4. Gostin L, Powers M. What does social justice require for the public's health?
Public health ethics and policy imperatives. Health Affairs 25 (4): 1053, 2006.
5. Warren RC. The impact of horizontal and vertical dimensions of faith on health
and health care. The Journal of the Interdenominational Theological Center 34:
71-85, 2008.
6. Laud-Hammond A. Fundamentals of Ethics. Boston: McGraw-Hill, 2007.
7. Suchman EA. Evaluative research: Principles and practice in public service &
social action programs. New York: Russell Sage Foundation, 1967.

SANKOFA BIRD
that we go bt-ck to our orc!_ tg. mo"e forward. That,is,
we,shoul9 reach back an9 gather the,b t of what our past has tq, teach us, so that we can
achieve oW' full potential as we move Whatever we hay. lost;. forgotten, for:gone
or be en) stripp-ec:II of, can b. pr, s."e4I an41
Visually and "Sankofa" is expressed1as a mljthic bir9 that lIies for,warq while
an in its mouth.

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