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.
The research process has led to many life-changing discoveries; these have improved life expectancy, improved living conditions, and helped us understand what contributes to certain social problems. That said, not all research has been conducted in respectful, responsible, or humane ways. Unfortunately, some research projects have dramatically marginalized, oppressed, and harmed participants and whole communities.
Before we begin, we must understand the historical occurrences that were the catalyst for the formation of current ethical standards.
Notorious Research Abuses in History
Would you believe that the following actions were carried out in the name of research? Although a content warning appears at the beginning of this section, it is important to note that the examples below represent some of the most extreme and unethical forms of human experimentation ever documented and may be particularly upsetting or triggering.
Researchers:
-
- Intentionally froze healthy body parts of prisoners to see if they could develop a treatment for freezing (Woodhead, 2000)
- Scaled the body parts of prisoners to determine how best to treat soldiers who had injuries from being exposed to high temperatures (Woodhead, 2000).
- Intentionally infected healthy individuals to see if they could design effective methods of treatment for infections(Woodhead, 2000).
- Gave healthy people tuberculosis to see whether they could develop an effective treatment (Woodhead, 2000).
- Attempted to transplant limbs, bones, and muscles to another person to see if such transplants were possible (Woodhead, 2000).
- Castrated and irradiated prisoner’s genitals in an effort to develop a faster method of sterilization (Woodhead, 2000).
- Starved people and allowed them to drink only seawater to test whether saline water could be made drinkable (Woodhead, 2000).
- Artificially inseminated women with animal sperm to observe the outcome (Woodhead, 2000).
- Gassed living people to document the process of dying (Woodhead, 2000; Kristof, 1995)
- Conducted cruel experiments on people and, if the subjects did not die, killed them to perform autopsies (Woodhead, 2000).
- Refused to treat syphilis in African American men (even when treatment was available) because in order to track the progression of the disease (Center for Disease Control and Prevention (CDC), 2024).
- Vivisected humans without anesthesia to observe how illnesses they introduced to prisoners impacted their bodies (Kristof, 1995).
- Intentionally attempted to infect prisoners with the bubonic plague (Kristof, 1995).
- Intentionally infected prisoners, prostitutes, soldiers, and children with syphilis to study the disease’s progression (BBC News Service, 2010; National Archives, 2011).
- Performed gynecological experiments on enslaved women without anesthesia to test new surgical methods (Ojanuga, 1993; Zellars, 2018).
Medical research on human subjects continued without much law or policy intervention until the end of World War II, when Nazi doctors and scientists were put on trial for conducting human experimentation, during which they tortured and murdered many concentration camp inmates (Faden & Beauchamp, 1986). The trials conducted in Nuremberg, Germany resulted in the creation of the Nuremberg Code, a set of 10 research principles designed to guide doctors and scientists who conduct research on human subjects. Today, the Nuremberg Code guides medical and other research conducted on human subjects, including social scientific research.
Timeline of Ethical Research Abuses → Leading to Modern Guidelines
|
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 |
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/