Research Ethics

Any research conducted with people must adhere to ethical standards. Some of these standards are the same across all research with people, and some are specific to working with immigrant groups. The research standards are based on universities’ Institutional Review Board (IRB) rules and the U.S. government’s ethics guidelines.

Holland Hall, St. Olaf College, 2011.

General Ethical Considerations

Respect, beneficence, and justice — these are the three ethical principles of research which guide governmental and academic research with people. The principles and their definitions come from the Belmont Report, issued by the U.S. government in 1979. The explanations are derived from St. Olaf College’s Institutional Review Board guidelines.

Respect: “individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection. People should be able to make fully informed and voluntary decisions to participate in any study, and they should be in charge of how information about them is shared. This is called informed consent.

Beneficence: “Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being.” In practice, beneficence means “do not harm and maximize possible benefits and minimize possible harms.” Protect the well-being of participants.

Justice: “‘fairness in distribution’ or ‘what is deserved.’” In practice, justice means “(1) to each person an equal share, (2) to each person according to individual need, (3) to each person according to individual effort, (4) to each person according to societal contribution, and (5) to each person according to merit.” Research should not replicate or uphold injustices, and no group should be advantaged or disadvantaged in the study.

Steenland Hall, St. Olaf College, Evan Pak 2022.

Practical applications

Applying the principles of respect, beneficence, and justice (these are adapted from St. Olaf College’s Institutional Review Board):

1. Minimize risks to participants.
2. Acknowledge the costs of participating, including the time people put in.
3. Respect participants’ privacy.
4. Provide complete and understandable information to participants.
5. Honor agreements made with participants.
6. Seek fairness and do not impose undue burdens on or provide unfair advantages to any group.
7. If participants are part of a vulnerable group, such as children, people who are educationally or economically disadvantaged, or people in hospitals, prisons, or nursing homes, more extensive guidelines around informed consent apply.
8. Ensure questions, procedures, and actions are appropriate to the participants’ cultural and community context.

Resources

Belmont Report
St. Olaf Institutional Review Board
Consent Form Recommendations

Ethical Considerations when Working with Immigrants

1. Acknowledge and evaluate implicit assumptions with each immigrant community that you are working with.
2. Among immigrant groups, there are numerous pockets of hard-to-reach participants such as migrant workers, undocumented individuals, non-English speakers, and federally persecuted individuals.
3. All IRB Informed and Consent requirements apply to the immigrant community.
4. Consider possible barriers that may prevent your immigrant neighbors from fully participating in your research — you may need to consider providing an interpreter, transportation, or a physically accessible meeting location among other things.

Boe Chapel, St. Olaf College, 2019.

The Ethics of Sharing Research

While there are many points that need to be taken into consideration when sharing research data, it is not to say that it is still not important for the progression of these research topics. Researchers must prioritize research participants’ comfort and make intentional decisions at the beginning of the research process. If researchers are interested in data sharing, research participants should be active members of the discussion.

Consent

Get consent to retain and share data (Meyer 2018). Data sharing needs to be clear with whom they are sharing their information with (which institutions). Consent for sharing data with one person or institution does not always extend to others always (Clark-Kazak 2021). It is crucial to respect the comfort of research participants. Trust between researchers and institutions is crucial in order to have good governance when sharing data (Clark 2019).

Effect

Only share information with careful consideration to the harm it could potentially cause (does it outweigh the benefits of sharing data?) (Kirilova 2017).

Any “anonymous” dataset could easily be identifiable depending on the variables that are listed and their identity’s rarity of them, including but not limited to full birthdays, zip codes, etc (Meyer 2018). Do not conduct research materials regarding personal information unless it is absolutely necessary for the research, so all information must be for the study. This will put the research participant in danger (Kirilova 2017). It is also important to consider the effects of sharing data of a particular group, specifically the response that the public (or whomever the audience is) will have to the research findings (Cooper 2007).

Researchers should consider each case individually. (“Ethics boards should consider each case in its own complexity, seeking always to balance the need to protect participants from harm with the social value of the research” Cooper 2007, 14).

Transparency

If sharing data is important for the particular research topic, this should be mentioned at the beginning of the research stage with participants. It is crucial for the intention of data sharing to be introduced at the beginning of the research process. This way research participants know exactly what the research entails (Kirilova 2017). It is crucial that the format and audience receiving the data is clear at the start of the research and discussed with the participants (Cooper 2007).

“How:” the sharing partakes is important to consider, for example, informal discussions, community presentations, and formal reports (10).

“With whom:” respect is crucial. “For example, community leaders may not share the materials with others but may use them for their own benefit or to oppress community members. In some situations, dis- trust of community authorities by ordinary people may be so great that reporting research data or results to them (which may be required by the government) may endanger the researcher” (Cooper 2007, 12). “Thus, when categories of people are being studied researchers will need considerable ingenuity to find appropriate ways of returning research results and to ensure that the risks of doing so are mitigated” (Cooper 2007, 12).

The IRB agreement should clearly state intentions regarding data sharing (or data destruction, which would need to be justified in some way) (Meyer 2018).

“Ethical issues become more complicated if data is collected from children and teenagers because, under international law, children and young adults cannot make independent decisions, meaning parents must grant consent. It is unethical to make data public without initial clearance from research participants. Sharing some data could harm people or may cause public uproar if it reaches those who may be aggrieved by such data” (Chawinga 2019, 118).

Boe Chapel, St. Olaf College, Fall Shots, Lakaia Thornton, 2019.

Bibliography