Ethics Definition:

Ethics is a code of thinking and behaviour governed by a combination of personal, moral, legal, and
social standards of what is right.

Some Ethical Concerns before any Project:

 Positive and negative effects of the health service(s) proposed to assist the community
 Situations in which the proposed health service(s) may be integrated with other community
services and possible interactive negative effects
 If focus on building community capacity more effective than health services programme
 If incorporation of health practices into community be more beneficial than one time
screening or medical service treatment programme

Belmont Report: Respect, Beneficence and Justice (PPT)

Tuskegee Syphilis Study:

The Tuskegee Study of Untreated Syphilis in the African American Male is the longest
nontherapeutic experiment on human beings in medical history, as noted by Arthur L. Caplan
(1992). Begun in 1932 by the United States Public Health Service (USPHS), the study was
purportedly designed to determine the natural course of untreated latent syphilis in some 400
African American men in Tuskegee, Macon County, Alabama. The research subjects, all of whom
had syphilis when they were enrolled in the study-contrary to the “urban myth” that holds “black
men in Alabama were injected with the virus that causes syphilis” (Walker, 1992)-were matched
against 200 uninfected subjects who served as a control group.
The subjects were recruited with misleading promises of “special free treatment,” which were
actually spinal taps done without anesthesia to study the neurological effects of syphilis, and they
were enrolled without their informed consent.
The subjects received heavy metals therapy, standard treatment in 1932, but were denied antibiotic
therapy when it became clear in the 1940s that penicillin was a safe and effective treatment for the
disease. When penicillin became widely available by the early 1950s as the preferred treatment for
syphilis, this therapy was again withheld. On several occasions, the USPHS actually sought to
prevent treatment.
The first published report of the study appeared in 1936, with subsequent papers issued every four
to six years until the early 1970s. In l969, a committee at the federally operated Center for Disease
Control decided the study should continue. Only in 1972, when accounts of the study first appeared
in the national press, did the Department of Health, Education and Welfare (HEW) halt the
experiment.
At that time, 74 of the test subjects were still alive; at least 28, but perhaps more than 100, had died
directly from advanced syphilis. An investigatory panel appointed by HEW in August 1972 found
the study “ethically unjustified” and argued that penicillin should have been provided to the men.
As a result, the National Research Act, passed in 1974, mandated that all federally funded proposed
research with human subjects be approved by an institutional review board (IRB). By 1992, final
payments of approximately $40,000 were made to survivors under an agreement settling the class
action lawsuit brought on behalf of the Tuskegee Study subjects. President Clinton publicly
apologized on behalf of the federal government to the handful of study survivors in April 1997.
Several major ethical issues involving human research subjects need to be studied further. The first
major ethical issue to be considered is informed consent, which refers to telling potential research
participants about all aspects of the research that might reasonably influence their decision to
participate. A major unresolved concern is exactly how far researchers’ obligations extend to
research subjects. Another concern has to do with the possibility that a person might feel pressured
to agree or might not understand precisely what he or she is agreeing to. The investigators took
advantage of a deprived socioeconomic situation in which the participants had experienced low
levels of care. The contacts were with doctors and nurses who were seen as authority figures.
The USPHS practiced deception in recruiting subjects for the study. It was never explained to the
subjects that the survey was designed to detect syphilis. The term “bad blood,” which was a local
colloquialism for everything from anemia to leukemia, was used by the doctors and never defined
for the subjects. Subjects were never told they had syphilis, the course of the disease, or treatment.
The treatment presented consisted of spinal taps, which were described as “spinal shots”
(Heintzelman, 1995).
The second major ethical issue is the withholding of treatment for research purposes. This is the
gravest charge against the study. Patient welfare was consistently overlooked, although there have
been multiple attempts to justify why penicillin treatment was withheld. Some physicians felt that
repair of existing damage would be minimal, and others felt that the damage that could result from
reactions to the penicillin therapy, including fever, angina, and ruptured blood vessels, would
outweigh its benefits. At the time of the Tuskegee Study, no data was available on the efficiency of
penicillin treatment in late syphilis, and short- and long-term toxic effects of drugs had not been
well documented. In short, when the study was evaluated periodically, researchers judged that the
benefits of nontreatment outweighed the benefits of treatment. Moreover, the subjects were never
given a choice about continuing in the study once penicillin had become available; in fact, they
were prevented from getting treatment.
The decision was made based on several factors, including the quiescent state of the disease,
assumptions about the participants, and fear related to the danger of lethal reactions if the men were
to receive penicillin. So treatment was not offered, and even when the experiment ended in 1972,
the remaining funds could not be used for treatment, according to USPHS grant guidelines
(Heintzelman, 1996).
Several other ethical issues surrounded the study. First, Alabama had passed a law in 1927 that
required the reporting and treatment of several venereal diseases, including syphilis, by medical
personnel. The USPHS ignored the state law, choosing to disregard the impact of untreated syphilis
on wives of the married men who were subjects.
Second, accurate records were not kept. The number of subjects who died from syphilis was never
known. The number of survivors was estimated to be between 76 and 111, and the number of dying
was estimated between 28 and 101.
Third, beliefs within the medical profession about the nature of African Americans, sexual behavior,
and disease clouded the study. As a result, the health of an entire community was jeopardized by
leaving a communicable disease untreated.
Fourth, although no comprehensive report was ever published, the study was reported in medical
journals for nearly 40 years without protest from anyone in the medical community. The
investigating doctors never questioned the morality of the study. Also, HEW had no mechanism for
periodic reassessment of the ethics and scientific values of the studies being conducted.
The Tuskegee Syphilis Study forced the nation to rethink and redefine practices involving human
experimentation, especially those involving minority populations. As a consequence, HEW
established a National Human Investigation Board, and legislation was passed requiring the
establishment of Institutional Review Boards (IRBs).
A class action suit filed in the 1970s on behalf of the survivors resulted in no new law and avoided
the issue of government responsibility for injury in such an experiment. Each survivor received a
settlement of approximately $40,000.
The most enduring legacy of the Tuskegee Syphilis Study is its repercussions in the African
American community, which have implications in light of the AIDS epidemic. The study laid the
foundations for African Americans’ continued distrust of the medical establishment, especially
public health programs and a fear of vaccinations. It reinforced views about the medical
establishment and the federal government, as well as disregard for African American lives.
Although community outreach efforts have done much to combat the misconceptions, there seems
to be evidence that African Americans did not seek treatment for AIDS in the early 1980s because
of distrust of health care providers regarding the diagnosis, prognosis, and treatment of AIDS.
James H. Jones, an historian and specialist in bioethical issues, wrote in Bad Blood: The Tuskegee
Syphilis Experiment (1993) the following:
“As a symbol of racism and medical malfeasance, the Tuskegee Study may never move the nation
to action, but it can change the way Americans view illness. Hidden within the anger and anguish of
those who decry the experiment is a plea for government authorities and medical officials to hear
the fears of people whose faith has been damaged, to deal with their concerns directly, and to
acknowledge the link between public health and community trust. Government Authorities and
medical officials must strive to cleanse medicine of social infection by eliminating any type of
racial or moral stereotypes of people or their illnesses. They must seek to build a health system that
will make adequate health care available to all Americans. Anything less will leave some groups at
risk, as it did the subjects of the Tuskegee Study”

Key Principles of Ethical Public Health Practice (PPT)

Values and Principles of Public Health Practice

1. Humans have a right to the resources necessary for health. The Public Health Code of
Ethics affirms Article 25 of the Universal Declaration of Human Rights, which states in part
“Everyone has the right to a standard of living adequate for the health and well-being of
himself and his family…”
2. Humans are inherently social and interdependent. Humans look to each other for
companionship in friendships, families, and community; and rely upon one another for
safety and survival. Positive relationships among individuals and positive collaborations
among institutions are signs of a healthy community. The rightful concern for the physical
individuality of humans and one’s right to make decisions for oneself must be balanced
against the fact that each person’s actions affect other people.
3. The effectiveness of institutions depends heavily on the public’s trust. Factors that contribute to
trust in an institution include the following actions on the part of the institution: communication;
truth telling; transparency (i.e., not concealing information); accountability; reliability; and
reciprocity. One critical form of reciprocity and communication is listening to as well as speaking
with the community.
4. Collaboration is a key element to public health. The public health infrastructure of a society is
composed of a wide variety of agencies and professional disciplines. To be effective, they must
work together well. Moreover, new collaborations will be needed to rise to new public health
challenges.
5. People and their physical environment are interdependent. People depend upon the resources of
their natural and constructed environments for life itself. A damaged or unbalanced natural
environment, and a constructed environment of poor design or in poor condition, will have an
adverse effect on the health of people. Conversely, people can have a profound effect on their
natural environment through consumption of resources and generation of waste.
6. Each person in a community should have an opportunity to contribute to public discourse.
Contributions to discourse may occur through a direct or a representative system of government. In
the process of developing and evaluating policy, it is important to discern whether all who would
like to contribute to the discussion have an opportunity to do so, even though expressing a concern
does not mean that it will necessarily be addressed in the final policy
7. Identifying and promoting the fundamental requirements for health in a community are of
primary concern to public health. The way in which a society is structured is reflected in the health
of a community. The primary concern of public health is with these underlying structural aspects.
While some important public health programs are curative in nature, the field as a whole must never
lose sight of underlying causes and prevention. Because fundamental social structures affect many
aspects of health, addressing the fundamental causes rather than more proximal causes is more truly
preventive.
8. Knowledge is important and powerful. We are to seek to improve our understanding of health and
the means of protecting it through research and the accumulation of knowledge. Once obtained,
there is a moral obligation in some instances to share what is known. For example, active and
informed participation in policy-making processes requires access to relevant information. In other
instances, such as information provided in confidence, there is an obligation to protect information.
9. Science is the basis for much of our public health knowledge. The scientific method provides a
relatively objective means of identifying the factors necessary for health in a population, and for
evaluating policies and programs to protect and promote health. The full range of scientific tools,
including both quantitative and qualitative methods, and collaboration among the sciences is
needed.
10. People are responsible to act on the basis of what they know. Knowledge is not morally neutral
and often demands action. Moreover, information is not to be gathered for idle interest. Public
health should seek to translate available information into timely action. Often, the action required is
research to fill in the gaps of what we don’t know.
11. Action is not based on information alone. In many instances, action is required in the absence of
all the information one would like. In other instances, policies are demanded by the fundamental
value and dignity of each human being, even if implementing them is not calculated to be optimally
efficient or cost-beneficial. In both of these situations, values inform the application of information
or the action in the absence of information.

Key Ethical practices in CEOD:

Confidentiality:
Probably the most familiar of ethical issues -- perhaps because it's the one most often violated -- is
the expectation that communications and information from participants in the course of a
community intervention or program (including conversations, written or taped records, notes, test
results, etc.) will be kept confidential. Programs' legal responsibilities in this area may vary, but as a
general rule, confidentiality is the best policy. It protects both participants and the organization from
invasion of privacy, and establishes a bond of trust between the participant and the program.
Depending upon the program, the staff member's position, and the participant's needs,
confidentiality may encompass a range of possibilities:
No one but the individual working with a particular participant will have access to
information about or records of that participant without her permission. At this level of
confidentiality, records and notes are usually kept under lock and key, and computer records
should be protected by electronic coding or passwords.

Information is confidential within a program, but may be shared among staff members for
purposes of consultation and delivering better services to the participant. Teachers in an
adult literacy program, for instance, may confer about a student with a particular learning
disability or problem.

Information is confidential within a program, but is submitted to funding sources as

documentation of services provided. This situation can lead to problems if participants have
been promised complete confidentiality. In that case, especially if threatened with
withdrawal of funds, the program has to decide whether the money is more important than
participants' anonymity, or what level of anonymity is sufficient.

Information is not confidential, or is only confidential under certain circumstances.

Participation in a program may be court-mandated or mandated by an agency as a condition
of receiving benefits or services. Often, in those cases, participation implies an agreement to
the sharing of records and information, and may even be a matter of public record.

Consent:
There are really three faces of consent: program participants giving program staff consent to share
their records or information with others for purposes of service provision; participants giving
informed consent to submit to particular medical or other services, treatment, research, or program
conditions; and community members consenting to the location or operation of an intervention in
their neighborhood.
Consent to sharing of information. Most participant records and information collected by
program staff can only be passed on with the consent of the participant. In general, this
consent is embodied in a standard form signed by the participant, granting permission to a
program in which he was formerly or is currently enrolled to share his information with
another organization, in which he is also a former or current participant.

Informed consent for services, treatment, research, or program conditions. In some

situations, services might be significantly different from participants' expectations (being
asked to enter residential drug treatment as a result of psychotherapy, for example). In others
medical diagnoses, for instance, there are no "normal" expectations. A third possibility
involves participants enrolling in a community intervention which is also a study. In any of
these instances, ethical practice demands that people be fully informed and can ask and have
answered any questions about what they are about to take part in. An informed consent form
is usually the vehicle by which participants give their permission to be involved in these
interventions.
 Community consent. It's difficult to draw lines here, or to find the absolute ethical standard.
Is it ethically necessary to gain the consent of a neighborhood to place a halfway house or
homeless shelter there, for instance? What if neighbors' attitudes stop at "Not in my back
yard"? Do you need the consent of a group or its president or director to survey its
members? Do you need the consent of a majority of the members of a jobs-for-youth
program to enforce a substance-free policy?

Disclosure:
 Disclosure to participants of the conditions of the program they're in: program policies of
confidentiality and when it might be breached, what kinds of services are available and what
kinds are not, any time limits on the program, whether it will cost anything, etc. Participants
have a right to know if they will be part of a research study if they enter the program, and to
understand the purpose of that study, as explained above.
 Disclosure of participant information to other individuals, agencies, etc. The rules here are
essentially those for confidentiality: information, except in cases of mandated reporting,
potential harm to self or others, or court testimony, can only be disclosed with the
participant's permission. Exceptions to this rule have to be spelled out to participants as they
enter the program, so they can decide whether the services are worth any loss of privacy or
anonymity.
Disclosure by the program and by the affected individuals, of any conflict of interest that
the program represents to any staff or Board members. Disclosure here includes individuals
disclosing potential conflicts to the program or organization, and the program disclosing
potential conflicts to funders and other interested parties.

Conflict of Interest:
A conflict of interest is a situation in which someone's personal (financial, political, professional,
social, sexual, family, etc.) interests could influence his judgment or actions in a financial or other
decision, in carrying out his job, or in his relationships with participants. In community
interventions, conflicts of interest may change to the community's disadvantage, how a program is
run or how its money is spent.
Conflicts of interest are virtually always unethical, to the point where the mere appearance of a
conflict needs to be avoided. Even if decisions or actions are not actually influenced by personal
interest, people in conflict of interest situations in their public or professional lives should do
everything possible to resolve them.
If you find yourself in such a situation, the ethical remedy is two-pronged:

 Point it out to whoever needs to know-- your employer, a funder, the community, the
participant you're working with and discuss possible solutions.
 Eliminate the conflict situation. Depending upon the situation, solutions might
involve excusing yourself from taking part in a particular decision, refusing
funding from a particular source, ceasing to work with a particular participant, or
even changing jobs.
Some examples of conflict of interest (with possible solutions in parentheses):
 A decision by a program director to purchase office equipment for the program from a
company his wife owns: the director has both a personal and a financial stake in the
decision. (The director could remove himself and/or his wife's company from the purchasing
process.)

A staff member entering into a sexual relationship with an intern or someone they
supervise. The supervisor has power over the other's employment and/or professional
evaluation, which puts pressure on the subordinate to enter into and/or continue the
relationship, even if he or she is reluctant, and may keep the supervisor from making
objective decisions about the subordinate. (If the relationship is mutual and the attraction
strong on both sides, this can present a very difficult situation. If the supervisor simply
transfers her supervisory responsibility to someone else, there still remains her power in the
program or organization itself. The best solution is probably to remove herself and wait until
the internship period ends before approaching an intimate relationship.)

Grossly Unethical Behaviour:

 Having sexual relationships, even consensual sexual relationships with people with whom
you have a professional relationship in which you hold the power. Doctor -patient, therapist-
client, teacher-student, supervisor-intern, and youth worker-teen are all examples of such
relationships. In some of these cases, a sexual relationship both violates the professional's
code of ethics and may be the base for a sexual harassment or sexual assault lawsuit as well.
Exploiting for financial gain people with whom you have a professional relationship.
Moving someone to the head of a waiting list in return for free services he can provide (car
repair, for instance), or accepting gifts or money, essentially bribes, to do something out of
the ordinary (e.g. accept someone who normally wouldn't qualify for your program).

Defrauding funders: billing for non-existent services, or inventing problems in order to

deliver unnecessary services.

Denying necessary medical services to those uninsured and unable to pay.

Discriminating in service delivery by race, gender, ethnicity, etc.

Outright criminal behavior: redirecting program funds for personal use, for instance, or
sexually abusing children in a day care center. This can also include criminal behavior that a
staff member engages in on his own time. e.g., selling drugs or robbing a warehouse

General Ethical Responsibility

Ethical behavior for a community intervention is more than simply following particular professional
codes and keeping your nose clean. It means actively striving to do what is right for participants and
for the community, and treating everyone, participants, staff members, funders, the community at
large, in an ethical way. By doing what you do in the community, you take on a number of
responsibilities:
Responsibility to funders. You are responsible for being fiscally accountable, for using funds
properly, and for trying to do what you promised to do when you took the money.
Responsibility to staff members. You are responsible for making sure everyone is treated fairly in all
dealings with the program; that everyone is paid for the work she does; that everyone has a
reasonable amount of control over her job; and that everyone has the opportunity to continue to
develop her skills and effectiveness through staff development and/or supervision. You are also
responsible for protecting staff from harm to the extent possible, and for warning and training them
if some physical or other danger is part of their jobs.
Responsibility to participants. You are responsible for trying, throughout the life of the program, to
provide the best and most effective services possible. This means constantly searching for better
methods and ideas; paying attention to participant feedback; building on program successes; and
acknowledging, learning from, and correcting program weaknesses. You are also responsible for
respecting participants' rights, and for treating all with the respect due them, not only as program
participants, but also as human beings.
Responsibility to the community. You are responsible for trying to understand and meet the needs of
the community; for being responsive to community attitudes and opinions (without compromising
your own mission or philosophy); and for trying, through your intervention, to improve the quality
of life in some way for both program participants and the community as a whole.