Research Ethics

All researchers must consider their ethical responsibilities throughout the entire research process. From determining what kind of research question to ask, to recruiting participants, to carrying out the research project, a researcher must consider questions related to the potential benefits and harms of their research.  This is particularly important when research involves human subjects. All researchers are responsible for identifying the policy documents that detail their ethical obligations. These are typically regulated at the national level by the government, although there are also international bodies that provide ethical guidelines. Some professions, such as medicine, social work, and law, have their own ethical codes, and professionals working in these fields are responsible for adhering to those ethical principles. In short, all research who conduct research involving humans must ensure they meet ethical standards set out by institutional, national, and international bodies.  

Broadly, the term ‘research ethics’ refers to the researchers actions, values, and attitudes, and the ways these impact the researcher’s work in relation to colleagues, research participants, and communities. Determining whether a researcher is ethical involves asking questions such as: how does the researcher treat their colleagues and the research participants? Does the researcher follow established guidelines, policies, and procedures when conducing research? More specifically, the term ‘research ethics’ refers to a researcher’s duty of care to participants. This may be defined differently depending on the local or national context. However, in general, researchers worldwide tend to agree upon the following basic principles. The researcher’s duty of care involves:

1. ensuring that participants provide informed consent. This means that participants are aware of the purpose, procedures, potential harms, and benefits of the research before they agree to participate.
2. ensuring that consent is voluntary. This means that no one should be coerced or forced into participating in a research project. A researcher cannot use their power to compel someone to participate in a study. For example, a professor should not ask students to participate in a study or risk getting a bad grade — this would not constitute voluntary consent.
3. ensuring that participants are safe from harm. No person should be asked to participate in a research study that could cause serious, irreparable harm without receiving all of the information they need to make an informed decision, and without any potential benefit. Consider, for example, the potential risks of testing COVID-19 vaccines on children. Parents enrolling children in these studies must be aware of potential individual harms in relation to the more widespread benefit of developing a vaccine that is safe and effective on children.
4. freedom from discrimination. No one should be prevented from participating in a study based on gender, race, age, class, religion, or sexuality, and studies should not reinforce discriminatory attitudes or ideas.
5. ensuring transparency: The researcher should present the research with transparency about the objectives and goals.
6. ensuring benefit to participants: The researcher should ensure that participants benefit, in some way, from their participation in the study. Benefits do not necessarily have to be monetary or material. The benefits might be intrinsic, such as the opportunity to contribute to developing new knowledge. Those who participate in clinical trials for COVID-19 vaccines, for example, do so out of a belief in the importance of developing a vaccine that will save lives, and not necessarily because of an individual benefit.

Activity

An example of ethical standards and procedures, consider the World Health Organization’s website about ethical standards and procedures for research with human beings. Now, do some research on the internet or using the resource kit to find another document outlining research ethics. Identify relevant documents governing your ethical obligations as a researcher. You can start by searching for ethical documents provided by your institution, your home country, the country in which you are doing research (if those are different), and any international documents.

Research Ethics Board (REB)

A research ethics board (REB) is a a committee made of people who oversee research to ensure that it is carried out ethically.  Many university institutions have REBs.  University researchers at any level, including students, are required to submit an ethics application to an REB before carrying out research involving human subjects. The application details how the researcher will meet ethical guidelines. In Canada, for example, all research ethics boards and researchers follow the guidelines within the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS). The guidelines in this document apply to all researchers conducting research in the social sciences, humanities, healthcare fields, and sciences. In other words, all university researchers in Canada must follow these guidelines.

Canada’s Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) focuses on three principles: respect for human dignity, concern for welfare, and justice. These principles are not unique to the TCPS, and govern research ethics in many contexts. 

Respect for Human Dignity

The principle of respect for human dignity means that all human life is valuable, and all humans deserve respect. One way in which researchers ensure human dignity is to provide all participants the opportunity to give informed consent. This means that participants must be presented with all of the information they need to make a choice about whether or not to participate. Researchers cannot force or pressure a person to consent, and participants should have the option to withdraw their consent during the study with no repercussions to the participant.

Concern for Welfare

The researcher must prioritize the welfare of their participants. This means prioritizing the participant’s physical and psychological health and their overall social and economic wellbeing. Most studies come with risks for participants. For example, a person participating in interviews about her experiences of involuntary migration may feel psychological distress as a result of participating, because of the emotional process of describing leaving her country involuntarily. The benefits of participating should outweigh the risks, and the researcher should try to mitigate any risks. In this case, the researcher could mitigate potential harms to the participant by providing connections to psychological and social supports.

The researcher’s concern for participant welfare also involves a respect for privacy and confidentiality. Research participants should have a right to privacy, meaning they should not be required to share any information publicly if they do not consent. Researchers, wherever possible, should strive to maintain a participant’s confidentiality by, for example, ensuring that no one has access to a participant’s personal and private information unnecessarily. Often, researchers protect confidentiality by ensuring participation is anonymous. For example, if a researcher is conducting interviews with involuntary migrants, she will keep electronic interview transcripts or recordings and personal information on a secure, password protected device to which no one else has access, and/or store paper records in a locked safe in a locked office to which no one else has access. Then, the researcher will anonymize the research by ensuring that the interviewee’s real name is not included in any public presentations of the findings.

Justice

Carrying out research comes with power, including the power to be of harm or benefit to participants, the power to share information and tell other people’s stories, and the power to produce new knowledge. Along with this power, researchers should respect principles such as justice, fairness, equity, diversity, and inclusion. The benefits of a research project should not accumulate among a particular social group while the harms fall to another social group.

When selecting participants, the researchers should consider whether a particular group might be harmed more than another group. For instance, some clinical trials are not carried out on pregnant people in order to insure that there are no unknown harms to the developing fetus. In many cases, it is reasonable to exclude pregnant people from medical studies so as not to cause harm. But, researchers should not exclude people arbitrarily. Unless there is a specific and justifiable reason for excluding a particular group, anyone should be free to participate in the study without prejudice based on gender, race, culture, religion, age, sexuality, or disability.

Ethical Obligations to Communities

So far we have discussed the responsibility to avoid harming individuals through research, but increasingly researchers are also required to consider their ethical obligations to the communities they research. For example, the organization Community Research Canada provides ethical guidelines for doing research involving communities. When a whole community is impacted by the research, the researcher should consider the benefits and harms to the community. If a community is asked to participate in a research project, the researcher should be able to explain the benefits for the community. If research does not take into account a community’s needs, it could end up doing harm to an entire group.

The Tuskegee Syphilis Study, described below, is one example of research that has had long-term harmful impacts on a whole group of people. When a researcher is conducting community based research, the community may have particular needs or ethical standards.  Not all communities have the same definitions of what is ethical or just, so it is important to consider what a particular community needs in order to feel respected in the research process. For example, some communities may request that they have input into the research design, that the whole community has access to information about the research, that community members can review findings, and that there is some benefit to the community.

Research 101 is a document produced by researchers and community members outlining ethical community-based research practices within a particular community, Vancouver’s Downtown Eastside. The ethical principles and practices outlined here will not apply to every community setting, but this document provides an example of what ethical community-based research might look like in one context.

Example of Unethical Research: The Tuskegee Syphilis Study

Now that we have reviewed some of the principles that govern research ethics, let’s consider an example of unethical research. Ethical protocols are in place to prevent this kind of harm from occurring in the future. As you learn about the Tuskegee Syphilis Study, try to identify which ethical principles the study violated and identify harms to individuals and communities.

The Tuskegee Syphilis Study was a study by the United States Public Health Service in Macon County, Georgia, beginning in 1932 and lasting forty years. The purpose of the study was to determine what happens when syphilis is left untreated. At the time, the sexually-transmitted infection was spreading in the Southern U.S. and there was no known cure. The U.S. Public Health Service (USPHS) recruited Black men into the study by offering them free doctor’s appointments, medical treatment, and burial insurance in exchange for their participation in the study, which involved regular medical testing. The USPHS told the participants that they were receiving free treatment for a vague condition called “bad blood”. However, the USPHS did not actually provide any treatments to the men. Instead, they tested them for syphilis in order to observe what happened if the disease was untreated. When men tested positive for the disease, the researchers did not notify them, and they received no treatment, even after medical experts had determined that the antibiotic penicillin was an effective treatment.

Watch:

This video identifies the long-term impacts of the Tuskegee Syphilis Study on African-American men, some of whom continue to lack trust in the American medical system.

Reflection:

• Which ethical principles and procedures did the researchers violate in the Tuskegee Syphilis Study?
• Can you identify any other examples of harmful research?