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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 Researchand Health Care

Strategic Plan 2010- 2020

Dr. Rueben C. Warren, Director, NCBRHC, Tuskegee University Bldg 44-107, 334-724-4554,

[email protected]
mailto:[email protected]:[email protected]


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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 ofindividuals. (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.


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The United States government did something that was wrongdeeply, profoundly, morallywrong.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 bystudents, 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 apowerful example, a rigorous

review of the methodology used in the original Syphilis Study suggests that the studywas 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).


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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.


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Theoretical Framework

Authentic Culturecology3 (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 goodhealth 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.


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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 forAfrican 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 andbioethics 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


Where appropriate, global populations will be considered.


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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, whodecides, 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.


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Objectives

A) To enhance health research enterprise focusing on bioethics, public health ethics


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, onpublic health ethics

and bioethics related to health and health care among selected health disparity


Where appropriate, global populations will be considered

I) To conduct a needs assessment to determine the influence of theSyphilis 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)


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C) To assure health related service associated with bioethics, public health ethics


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.


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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 ofdetermining the value or amount of success in the achievement of predeterminedobjectives.7 This includes at least the following steps: formulation of the objectives;identification of the proper criteria to be used in measuring success; determination andexplanation of the degree of success; recommendations for future program activities.7

The following five areas will be used in evaluating the activities in the BioethicsCenter Strategic Plan:

1. Effort-the evaluations in this category have as their criteria of success thequantity and quality of activities that take place. This represents anassessment of input or energy regardless of output that is intended toanswer the questions "What did you do? "How well did you do it?"

2. Performance-the performance or effect criteria measures the results ofthe effort rather than the effort itself. This requires a clear statement of

ones objective.How much is accomplished relative to an immediate goal? Did naychange occur? Performance can be measured at several levels-thenumber of cases found, the number hospitalized, the number cured orrehabilitated. Performance standards often involve several assumptions;however, in general, evaluation of performance involves fewerassumptions than evaluation of efforts.


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3. Adequacy of Performance-this criterion for success refers to the degreeof which effective performance is adequate to the total amount of need.Adequacy is obviously a relative measure depending upon how high onesets ones goals.

4. Efficacy-a positive answer to the question, "Does it work" Often gives riseto the following questions: Is there any better way to obtain the sameresults? Efficacy is concerned with the evaluation of alternative paths ormethods in terms of cost and money, time, personnel, and publicconvenience. In a sense, it represents the ratio between effort andperformance, output divided by input.

5. Process-in the course of evaluating the success or failure of a program, agreat deal can be learned about how and why a program works or doesnot work. The analysis of process can have both administrative andscientific significance particularly when the evaluation indicates that a

program is not working as expected. The analysis of process will bemade according to four main dimensions beginning with: 1) the attributesof the program itself; 2) the population exposed to the program; 3) thesituation or context within which the program takes place; and 4) thedifferent kinds of effects produced by the program.7

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


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Outcome

It is expected that as the Strategic Plan is implemented both process and outcomemeasures will evolve and appropriate adjustment will be made. However, the Plan hasfollowed 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 culturalproficiencies. Once fully implemented, the target audiences will surely be on the journeytowards Optimal Health.


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References

1. The White House Office of the Press Secretary. Remarks by the president inapology for study done in Tuskegee., 1997. Accessed on October 16, 2009 athttp://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html

2. Bayer R, Beauchamp DE. Public health ethics: Theory, policy, and practice. NewYork: 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: KluwerAcademic/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 healthand 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.
http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.htmlhttp://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.htmlhttp://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html


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