In this lesson, you will learn about ethical practices in public and community health. You will also learn about approaches and frameworks in the practice of public and community health. Specifically, this lesson will cover the following:
This lesson will focus on ethics, which we use to help us decide what is right and wrong. Ethics are like a set of rules or guidelines that help us make good choices and treat others fairly. Think of ethics as a moral compass that guides our actions and decisions. Some key points to remember about ethics are to treat others with respect, always be truthful and sincere, take ownership of your actions and their consequences, play by the rules, and be just in your decisions. Also, showing care through kindness and concern for others is an ethical decision.
However, we know from previous lessons that health care is not always fair, equitable, and just. Woven throughout this course have been examples of populations that have been historically neglected, underserved, and economically disadvantaged, as well as evidence that systemic racism and discrimination exist in our health care system. The topic of ethics in the practice of public health, medicine, and research is vast, so the discussion will broadly address the issues related to ethical practices in these areas. Two historical events caused public health to examine ethical considerations related to clinical ethics and biomedical ethics. One was the Nuremberg Trials for Nazi war criminals, including the trial of Nazi physicians who conducted torturous medical experiments on subjects, which resulted in the Nuremberg Code (1947), a compilation of guidelines for conducting research with human participants. The other was in 1964 when the Declaration of Helsinki of the World Medical Association (WMA) further refined ethical guidance for research with humans and, in particular, the participation of vulnerable populations (Lee et al., 2016).
Public health and medical ethics involve a systematic process to clarify, prioritize, and justify possible courses of action based on ethical principles, values, and beliefs of partners as well as scientific and other information. Ethical practice is about making decisions and taking actions that are guided by a set of principles and values aimed at promoting the health and well-being of individuals and communities. Public health practitioners must respect the rights, dignity, and autonomy of individuals and communities. This includes obtaining informed consent, obtaining permission to participate, and ensuring confidentiality.
Informed consent respects the autonomy of individuals by ensuring they have the information needed to make voluntary decisions about their participation in health programs or research. This is fundamental to respecting their rights and dignity (Childress & Childress, 2020). Communicating complex medical information in a way that is understandable to everyone can be challenging. This is especially true in diverse communities with varying levels of health literacy, language barriers, and cultural differences. Recall the widely known case of the Tuskegee Syphilis Study that was conducted by the U.S. Public Health Service from 1932 to 1972. In terms of informed consent, the participants in the Tuskegee Syphilis Study were not provided informed consent. They were misled about the nature of the study and were not informed that they had syphilis or that they were part of a research study. Additionally, they were not offered available treatments, even after penicillin became widely available (Centers for Disease Control and Prevention [CDC], 2024).
Obtaining informed consent builds trust between public health practitioners and the community (or health professionals and their patients). It ensures transparency about the risks, benefits, and purposes of health interventions and research. Informed consent is not only an ethical obligation but also a legal requirement in many cases. Failing to obtain proper consent can lead to ethical breaches and legal consequences. Let’s meet Henrietta Lacks as a case in point.
IN CONTEXT Ethical Practice in Public Health: Henrietta Lacks
Henrietta Lacks was an African American woman whose cancer cells were taken without her knowledge or consent in 1951 at Johns Hopkins Hospital. These cells, known as HeLa cells, turned out to be extraordinarily resilient and capable of continuous growth in laboratory conditions.
|University of Bristol
These HeLa cells have since become one of the most important cell lines in medical research, contributing to numerous scientific breakthroughs, including the development of the polio vaccine, cancer research, and even COVID-19 vaccine research. Her case is significant in public health and medical ethics for several reasons. Henrietta Lacks’s cells were taken and used for research without her informed consent, highlighting the importance of obtaining proper consent from patients and research participants.
This case underscores the ethical principle of respecting individuals’ autonomy and rights. The use of Lacks’s cells without her consent, and the subsequent lack of compensation to her family, highlights issues of exploitation, particularly of marginalized populations and communities. It raises questions about justice and equity in medical research and health care. The handling of Lacks’s medical records and the public disclosure of her identity without her family’s consent also raised concerns about privacy and transparency in medical research. Henrietta Lacks’s case serves as a powerful reminder of the need for ethical practices in public health and medical research, ensuring that the rights and dignity of individuals are respected.
The story of Henrietta Lacks illustrates the racial inequities embedded in research and the U.S. health care system. Lacks was a Black woman in one of the few hospitals of the time that provided medical care to Black people. None of the biotechnology companies who profited from her cells ever passed any money back to her family. Over decades, the use of her cells continued, and scientists failed to ask her family’s permission to use them. The family was never approached to consent to reveal the name of Henrietta Lacks publicly or to give her medical records to the media. The Lacks family did eventually reach an agreement with the NIH to approve the release of the cells’ genome (“Henrietta Lacks: Science Must Right a Historical Wrong,” 2020).
The Lacks family reached a settlement with a biotech company over the unauthorized use of her cells. This settlement was seen as a significant step toward justice and recognition for Henrietta Lacks and her family. Overall, the family is pleased that Henrietta Lacks’s contributions to science are being recognized and that steps are being taken to address the ethical issues surrounding her case.
think about it
What ethical dilemmas have you encountered in your life, and how did you solve them?
The case of Henrietta Lacks has significant ethical implications and has led to important policy changes in medical research. The most prominent ethical issue is the lack of informed consent. Henrietta Lacks did not know her cells would be taken and used for research. She lost the opportunity and autonomy to say yes or no. The unauthorized use of her medical records and the public disclosure of her identity without her family’s consent raise issues of privacy and transparency. The case has impacted trust in medical research, particularly among vulnerable and marginalized populations and communities. It underscores the need for ethical practices to build and maintain trust.
Because of this case, today, there are stricter regulations around informed consent. Obtaining informed consent from patients and research participants is a legal and ethical requirement. The Common Rule, which governs the ethical conduct of research involving human subjects in the United States, was influenced by cases like Henrietta Lacks’s. It emphasizes the importance of informed consent and the protection of human subjects. The establishment and strengthening of institutional review boards (IRBs) ensures that all research involving human participants undergoes ethical review to avoid harming participants. IRBs uphold strict standards of informed consent and protect participants’ rights and welfare. The primary purpose of an IRB is to ensure that the rights, welfare, and safety of research participants are protected. Academic institutions such as universities and colleges that conduct research using human subjects use IRBs; hospitals and medical centers for clinical trials and medical research also use IRBs; and government agencies like the Food and Drug Administration (FDA) and National Institutes of Health (NIH) also use IRBs.
key concept
During a severe infectious disease outbreak, public health authorities decide to implement mandatory quarantine measures to prevent the spread of disease. This decision raises ethical concerns:
Individual autonomy versus public safety: People have the right to make decisions about their own lives, including the freedom to move and interact with others. Mandatory quarantine restricts these freedoms, raising concerns about violating individual autonomy. The primary goal of quarantine is to protect the health of the community by preventing the spread of infectious diseases. While a mandatory quarantine does restrict people’s freedom of choice, this measure is intended to save lives and reduce the burden on health care systems.
Equitable implementation and access to resources: Ensuring that quarantine measures are applied fairly and without discrimination is crucial. There is a risk that marginalized and vulnerable populations may be disproportionately affected by quarantine measures. Quarantined individuals need access to essential resources such as food, medical care, and mental health support. Ensuring equitable access to these resources is an ethical concern.
Ethical practice applies to community programming by guiding the actions and decisions of public health practitioners to ensure that the interventions are fair, respectful, and effective. Ethical community health programs aim to reduce health disparities and promote equity. This involves ensuring fair distribution of resources and opportunities and addressing the needs of marginalized populations (Kass, 2001).
Programs should aim to do good and avoid causing harm. This involves carefully assessing the potential benefits and risks of interventions to ensure they are in the best interests of the community. Ethical practice involves being transparent about the goals, processes, and outcomes of health programs. Practitioners should be accountable to the community and other partners, ensuring that their actions are open to scrutiny (Community Tool Box, n.d.). Engaging with the community and involving them in decision-making processes is essential for ethical practice. This helps ensure that interventions are culturally appropriate, accepted, and effective. Ethical community health programming relies on the best available evidence to guide interventions. This involves balancing scientific knowledge with the lived experiences and values of the community. By adhering to these ethical principles, community health programs can build trust, enhance program effectiveness, and promote the well-being of the communities they serve.
watch
Ethics: From History to Shaping Public Health
Video 1: The History of Ethics in Public Health
terms to know
Ethics
A set of rules or guidelines that help us make good choices and treat others fairly.
Informed Consent
Respects the autonomy of individuals by ensuring they have the information needed to make voluntary decisions about their participation in health programs or research.
2. Approaches to Ethical Practice in Public Health
There are several approaches to ethics in public health that guide practitioners in making ethical decisions and implementing effective interventions.
One approach is utilitarianism, which focuses on achieving the greatest good for the greatest number of people. Public health interventions are evaluated based on their overall benefits and harm to the population.
Deontology is another approach that emphasizes duty and adherence to rules and principles. It focuses on the moral obligations of public health practitioners to follow ethical guidelines and standards, regardless of the outcomes.
Virtue ethics centers on the moral character of individuals. It encourages public health practitioners to cultivate virtues such as honesty, compassion, and integrity in their professional conduct.
Principlism involves applying four key ethical principles—autonomy, beneficence (the act of doing good or producing positive outcomes), nonmaleficence (avoiding causing harm to others), and justice—to public health practice. These principles help guide decision-making and ensure that interventions are fair and respectful.
The Public Health Code of Ethics, developed by the CDC and the American Public Health Association (APHA), provides a set of professional standards and expectations for public health practitioners. It emphasizes the core values of respect, justice, and equity.
learn more
Read the Public Health Code of Ethics published by the APHA and disseminated by the CDC at the following link: Public Health Ethics (cdc.gov).
Ethics frameworks like the one proposed in an article by Kass (2001) provide a structured approach to ethical analysis in public health. These frameworks help practitioners balance traditional public health goals with individual liberties and social justice. The table below features the key components of Kass’s ethical framework.
Component Name
Definition
Public health goals
Establishing clear public health goals of the proposed program or intervention involves understanding the intended outcomes, such as reducing morbidity and mortality. The ethical principles related to this step in the framework are as follows:
Clear goals to ensure transparency and accountability (maintaining trust related to resource use)
Effectiveness (beneficence)
Fairness and equity (principle of justice)
Minimizing harm (nonmaleficence)
Community engagement (autonomy of individuals and communities)
Effectiveness
Assess the effectiveness of the program in achieving its stated goals. This includes evaluating the evidence supporting the program’s ability to meet its objectives connecting to the ethical principle of beneficence.
Burdens and Benefits
Identify and evaluate the known or potential burdens of the program. This includes considering risks to privacy, autonomy, justice, and the health of individuals. The benefits of the program would be related to meeting goals and objectives (see Step 1).
Minimizing burdens
Explore ways to minimize burdens associated with the program. This involves considering alternative approaches that might achieve the same goals with fewer negative impacts.
Fair implementation
Ensure that the program is implemented fairly. This includes equitable distribution of benefits and burdens, avoiding the creation or perpetuation of inequalities, and considering whether certain populations should be targeted.
Balancing benefits and burdens
Fairly balance the benefits and burdens of the program. This involves planning for a democratic process or procedural justice to determine if the balance is equitable.
Adapted from Summary of the Ethics Framework by Kass (2001): An Ethics Framework for Public Health by National Collaborating Centre for Healthy Public Policy, 2015
These components help ensure that public health interventions are ethically sound, respectful of individual rights, and effective in promoting community health. If a code of ethics is not implemented in community health, several negative consequences can arise, including a loss of trust in health programs and practitioners, leading to decreased participation and cooperation and undermining the effectiveness of health interventions.
Without ethical standards, inequity and discrimination would result in unfair treatment against certain groups. This can exacerbate health disparities and create barriers to accessing care. Without ethical oversight, interventions may cause harm rather than benefit. This includes physical, emotional, or social harm to individuals and communities. Practitioners might face legal repercussions and damage to their professional reputation if they fail to adhere to ethical standards. This can also lead to a loss of funding and support for community health programs. Without a code of ethics, there is no clear framework for holding practitioners accountable for their actions, which can lead to unethical behavior. Finally, ethical guidelines help ensure that health programs are culturally appropriate, respectful, and effective. Without them, interventions may fail to meet the needs of the community and achieve their intended goals.
watch
Ethics: From History to Shaping Public Health
Video 2: Approaches to Ethics in Public Health
summary
In this lesson, you learned about ethics in public and community health, which refer to a set of rules or guidelines that help us make good choices and treat others fairly. You learned about the use of informed consent as an application of ethical practice to reduce harm to human subjects in research and participants in community programming. You also learned about different approaches to ethical practice in public health, such as ensuring individual autonomy, justice, and equity in the practice of public health.
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Disclaimer: The use of any CDC and United States government materials, including any links to the materials on the CDC or government websites, does not imply endorsement by the CDC or the United States government of us, our company, product, facility, service, or enterprise.
REFERENCES
Centers for Disease Control and Prevention. (2024, September 4). About the untreated syphilis study at Tuskegee. www.cdc.gov/tuskegee/about/index.html
Childress, J. F., & Childress, M. D. (2020). What does the evolution from informed consent to shared decision making teach us about authority in health care? AMA Journal of Ethics, 22(5), E423–E429.
Lee, L. M., Spector-Bagdady, K., & Sakhuja, M. (2016). Essential cases in the development of public health ethics. In D. H. Barrett, L. W. Ortmann, A. Dawson, C. Saenz, A. Reis, & G. Bolan (Eds.), Public health ethics: Cases spanning the globe (Vol. 3). Springer. www.ncbi.nlm.nih.gov/books/NBK435784/
National Collaborating Centre for Healthy Public Policy. (n.d.). Summary of the ethics framework by Kass (2001): An ethics framework for public health. www.ncchpp.ca/docs/2015_eth_frame_kass_En.pdf
A set of rules or guidelines that help us make good choices and treat others fairly.
Informed Consent
Respects the autonomy of individuals by ensuring they have the information needed to make voluntary decisions about their participation in health programs or research.
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