ETHICAL PRINCIPLES OF RESEARCH
In the United States, there are rules to protect people who participate in research. The rules are based in ethics. Ethics are what people commonly view as right and wrong These standards tell us what we should do to protect participants from harm, to respect other people’s rights, and to support values most people think are important.
Why do we need ethical standards for research?
People have been mistreated by researchers. The most famous example of this is the Tuskegee Study, which took place between 1932 and 1972. In the study, researchers planned to follow two groups of men. One group of men had syphilis (a sexually transmitted infection), and the other group did not. The goal of the study was to understand what would happen to people’s health if their syphilis infection was not treated. A treatment for syphilis was discovered during the time of the study, but the men in the study were not given the treatment.
A reporter learned about the study and wrote a story on it. People were very angry about the study and how people were treated, so an research professionals met and reviewed the study. They discovered that the men in the study were not given all the facts about the study and were lied to.
The Tuskegee Study led to concern about how research is done. In the late 1970’s, a national group of research professionals met to decide what it means to do research in an ethical way. The committee wrote the Belmont Report, a report that is used to guide research today.
What are the key ethical principles for research?
The Belmont Report states all research should be guided by three major ethical principles which are:
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Respect for Persons
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Beneficence
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Justice
Respect for Persons
There are two key ideas that fall under the principle of respect for persons. The first idea is that each person should be able to make a free choice to join a research study. This idea is also called “autonomy.” The second idea is that people who cannot make their own decision about participating in a study must have extra protection to be sure they are not tricked into participating.
Researchers honor the principle of respect for persons by obtaining informed consent (see also, Consent to Research).
Beneficence
The principle of beneficence refers to the idea that researchers should “do good” and work to prevent participants from being harmed in research studies. It means researchers should always do their best to support the participant’s health, safety, and profit. We will talk about different types of studies and how they may or may not benefit the person who participates in the study.
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Researchers honor the principle of beneficence by working to minimize the risks of a research study, and to make sure that risks are balanced by potential benefits.
Justice
In research ethics, justice refers to fairness in how people benefit or do not benefit from research. It is important that the people who benefit from research are like the people who participate in it. In the past, a lot of medical research was done on people who lived in long-term hospitals, were imprisoned, had disabilities, or lived in poverty. These groups of people took on the risks of being in research (often without fully understanding the study), but other groups of people benefited from the results of the study.
For this reason, researchers today must show that their study is justified in that they are not using one group of people to benefit another group of people. A second area of justice is addressing health equity. Health equity means making sure that everyone has the chance to live healthy. This means that research should try to address health issues that unequally affect people. In HIV, for example, we see inequities by race, sexual orientation, gender, and age.
Resources:
The Belmont Report https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
CDC Timeline of the Tuskegee Study* https://www.cdc.gov/tuskegee/timeline.htm