Introduction – Legal and Ethical Research
Learning Objectives
By the end of this section, you will be able to:
- Define the term human subjects in the context of research.
- Describe the historical background that led to ethical guidelines for the use of human participants in research, with specific attention to Canada and Indigenous history.
- Explain how history has established a moral imperative for ethics in research.
- Describe the ethical principles that must underpin all research.
- Describe why ethics review boards came into existence and outline their role in the research process.
- Discuss the importance and implications of researcher integrity.
Content warning: Examples in this chapter contain references to numerous incidents of unethical medical experimentation (e.g., intentionally injecting diseases into unknowing participants, or withholding proven treatments), social experimentation under extreme conditions (e.g., being directed to deliver electric shocks to test obedience), violations of privacy, gender and racial inequality, research with people who are incarcerated or on parole, experimentation on animals, abuse of people with autism, community interactions with law enforcement, WWII, the Holocaust, and Nazi activities (especially related to research on humans).
Ethics is the branch of philosophy concerned with morality—what it means to behave morally and how people can achieve that goal. It can also refer to a set of principles and practices that provide moral guidance in a particular field. There is an ethics of business, medicine, teaching, and, of course, scientific research.
Research has led to many life‑changing discoveries, improving health, living conditions, and our understanding of social issues. However, not all research has been conducted ethically or humanely. Some studies have exploited, harmed, and marginalized individuals and communities, revealing serious failures in responsibility and respect for human rights.
To understand today’s ethical standards, it is important to recognize the historical practices that led to their development.
Examples of Unethical Research Practices
In the past, some researchers carried out harmful and coercive experiments on human subjects without consent. For example, prisoners were intentionally exposed to extreme conditions such as freezing or severe heat to study injury and survival (Woodhead, 2000). In other cases, individuals were deliberately infected with diseases like tuberculosis or syphilis so researchers could observe how those illnesses progressed, even when effective treatments were available (Woodhead, 2000; BBC News Service, 2010; National Archives, 2011).
Other studies involved invasive and painful procedures performed without anesthesia, including surgical experimentation on vulnerable populations such as prisoners and enslaved women (Kristof, 1995; Ojanuga, 1993; Zellars, 2018). In addition, some researchers denied participants treatment altogether in order to document the natural course of disease as seen in the well-documented case where treatment for syphilis was withheld from African American men causing preventable suffering and death (Centers for Disease Control and Prevention [CDC], 2024).
These practices were not isolated incidents but reflected broader patterns of exploitation, particularly targeting marginalized groups who had limited ability to refuse participation. Public awareness of these abuses grew significantly after World War II, when the trials of Nazi army physicians exposed the extent of human experimentation carried out in concentration camps, where many individuals were tortured and killed in the name of research (Faden & Beauchamp, 1986). In response, the Nuremberg Code was established, outlining key principles for ethical research, including voluntary consent and the obligation to minimize harm. These principles continue to guide modern research involving human participants.
Timeline of Unethical Research Studies → Leading to Modern Guidelines
The timeline below traces key moments in the history of unethical research alongside the development of modern ethical standards. By moving through these events chronologically, you can see how specific cases of harm, exploitation, and lack of consent prompted critical reflection and reform within the research community. As you explore, notice how each incident contributed to the creation of principles, guidelines, and regulations that now shape ethical research practices. This progression highlights an important lesson; that today’s standards did not emerge in isolation, but rather in response to real harms experienced by individuals and communities.
|
Year/Period |
Event |
Outcome / Guideline |
|
1845-1849 |
Gynecological experiments on enslaved women (Dr. J. Marion Sims) |
Highlighted lack of consent and exploitation |
|
1930s-1940s |
Nazi human experiments (freezing, sterilization, infection) |
Led to Nuremberg Code (1947): Voluntary consent, risk minimization |
|
1932-1972 |
Tuskegee Syphilis Study |
Informed consent required; principle of beneficence emphasized |
|
1946-1948 |
Human experiments in Japan (Unit 731) |
Reinforced need for international ethical oversight |
|
1948 onward |
Declaration of Helsinki |
Guidelines for biomedical research with human subjects |
|
1998 (Canada) |
Tri-Council Policy Statement (TCPS2) |
Respect for persons, beneficence, justice; REB oversight mandated |
|
2018 onward |
Indigenous Data Sovereignty and OCAP principles |
Community-led research, culturally safe and respectful practices |
Respectful Language in Ethical Research
Ethical research emphasizes respect, autonomy, and meaningful participation of individuals and communities. In nursing research, language is important because it reflects how we understand and value participants.
In community-based and participatory research, the goal is not to “control” or “alter” communities, but to ensure that individuals and groups:
· are fully informed about the purpose and procedures of the research
· have the opportunity to ask questions and seek clarification
· can freely choose whether or not to participate (without coercion)
· understand how the research may relate to their rights, experiences, and interests
This approach recognizes that communities are active partners in the research process. Ethical engagement involves collaboration, transparency, and respect for community decision-making. Before informed consent can occur, consultation takes place before research decisions are finalized, and individuals or communities are informed about the plans of the research in a way that supports meaningful understanding of its purpose, procedures, and implications for their rights and interests.
Remixed from:
- Research methods in psychology (4th ed.) by Dr. Rajiv Jhangiani, Dr. Carrie Cuttler, and Dr. Dana C. Leighton, KPU. (2019). Published under a CC BY-NC-SA 4.0 license.
- Graduate Research Methods in Social Work by Dr. Matt DeCarlo, Dr. Cory Cummings, and Kate Agnelli (2021), published under a CC BY-NC-SA 4.0 license.
- Scientific Inquiry in Social Work by Matthew DeCarlo (2018). published under a CC BY-NC-SA 4.0 license.
References
BBC News Service. (2010, October 2). US medical tests in Guatemala ‘crime against humanity’. BBC News US & Canada. https://web.archive.org/web/20160102060840/http://www.bbc.co.uk/news/world-us-canada-11457552
Centers for Disease Control and Prevention. (2024, September 4). The untreated syphilis study at Tuskegee: Timeline. CDC.gov. https://www.cdc.gov/tuskegee/about/timeline.html
DeCarlo, M. (2018). Scientific inquiry in social work. Pressbooks. https://pressbooks.pub/scientificinquiryinsocialwork/
DeCarlo, M., Cummings, C., & Agnelli, K. (2021). Chapter 6.0.: Research Ethics. In Graduate research methods in social work. [In Social Sci LibreTexts]. https://socialsci.libretexts.org/Under_Construction/Graduate_research_methods_in_social_work_(DeCarlo_Cummings_and_Agnelli)/06%3A_Conceptualizing_your_research_project_-_Research_ethics/6.00%3A_Research_ethics
Faden, R. R., & Beauchamp, T. L. (1986). A history and theory of informed consent. Oxford, UK: Oxford University Press.
Jhangiani, R. S., Chiang, I.-A., Cuttler, C., & Leighton, D. C. (2019). Research methods in psychology (4th ed.). Kwantlen Polytechnic University. https://kpu.pressbooks.pub/psychmethods4e/
Kristof, N.D. (1995, March 17). Unmasking horror—A special report.; Japan confronting gruesome war atrocity. The New York Times. https://www.nytimes.com/1995/03/17/world/unmasking-horror-a-special-report-japan-confronting-gruesome-war-atrocity.html
National Archives and Records Administration. (2011, March 28). National Archives releases John Cutler papers online [Press release]. https://www.archives.gov/press/press-releases/2011/nr11-94.html
Ojanuga, D. (1993). The medical ethics of the “father of gynaecology,” Dr. J. Marion Sims. Journal of Medical Ethics, 19(1), 28–31. https://jme.bmj.com/content/medethics/19/1/28.full.pdf
Woodhead, L. (2000). Holocaust on trial [Film]. Nova. https://www.pbs.org/wgbh/nova/holocaust/
Zellars, R. (2018, May 31). Black subjectivity and the origins of American gynecology. Black Perspectives. African American Intellectual History Society (AAIHS). https://www.aaihs.org/black-subjectivity-and-the-origins-of-american-gynecology/