Research Ethics Beyond Compliance
While IRB A group that is charged with overseeing and approving research projects. The group ensures that research projects are ethical, meet regulations and standards, and protect any human subjects involved in the research. review is an important part of ethical research conduct, IRB approval is not a guarantee of ethical research design nor does it absolve researchers of additional obligations to research participants and collaborators, especially those addressing the relationships between the researchers and their interlocutors and the long-term responsibilities of stewardship of research data. This section addresses additional ethical considerations that are not fully addressed by the three core principles of IRB compliance.
Reflexivity The ability for a researcher to reflect on their own beliefs, judgements, and practices in order to understand how those things could have influenced their research. Reflexivity requires a researcher to challenge and unpack their own assumptions.
All research with humans involves some degree of social relationships and the co-construction of knowledge between researchers and research participants. Because of this, researchers must consider how their social position relative to the people they are working with may affect the information they collect. Reflexivity refers to an active and ongoing evaluation of how your own beliefs, ideologies, experiences, and social and cultural identities may affect or bias your interpretation of your research or the information provided by your participants. For example, in many cultures, access to particular spaces or forms of knowledge may be restricted by gender, age, or social position, and a researcher not meeting these requirements would not be granted access to these areas (Asher and Jahnke 2013). Closer to home, students may see librarians as holding a position of authority and attempt to provide the “right” answers to a question rather than expressing their true opinion. It is very easy for subtle forms of cultural bias to find their way into interpretations of research outcomes. Actively identifying where these might occur helps limit potential misunderstanding and misrepresentation.
Representation
Researchers should evaluate how they will most responsibly, respectfully, and ethically represent their research participants. Who is granted the authority to speak on behalf of a group being studied has become increasingly problematized, particularly in more interpretively positioned disciplines such as cultural studies, cultural anthropology and qualitative sociology. In the past, researchers were granted most of the interpretive authority over the data and information they collected by virtue of their academic credentials, position, membership in a governing class, or skills in academic languages. However, this positioning has become increasingly contested by individuals and groups being studied, and many researchers now see themselves more as “stewards or custodians of data that are produced by a complex set of relationships between researchers and respondents.” (Asher & Jahnke 2013), and that it is appropriate for research participants to also have a voice in research outcomes.
How to ensure that research participants are appropriately represented can vary in scope and degree depending on the goals and topic of a research study. Minimally, it might include asking representatives of a group being studied or appropriate domain experts to assist in the development of research protocols and instruments that are contextually sensitive to the communities a study seeks to learn about. In other cases, it might involve employing participative research methodologies, such as participatory action research, that explicitly involve research participants in all aspects of the research process, including developing the initial research questions.
Anti-racist approaches to equity
Especially in the United States, in which racialized groups have borne disproportionate risk and adverse effects of research with human participants while also being systematically excluded from the process and benefits of research and knowledge production, researchers should carefully consider ways of pursuing anti-racist practices in their research.
When working on research teams, practices aimed at de-centering whiteness should begin with ensuring the research team itself has a diversity of racial and ethnic representation. Research practices and publications across many disciplines tend to overemphasize and overrepresent white participants and their experiences and opinions (Clancy and Davis 2019; Henrich, Heine, and Norenzayan 2010b; 2010a; Garay and Remedios 2021). For this reason, researchers often must take active steps to ensure the racialized groups are represented and included in studies and should conduct checks during the recruitment phase of research studies to ensure participation is not biased. Again, participative research methods that actively engage community members in the design of research protocols and the interpretation of research outcomes can help mitigate the potential for racialized biases.
Additionally, researchers should evaluate if their collected research data reflects, or could contribute to, forms of structural racism. Data is never neutral and contains all of the known and unknown biases of the methods used to collect, process, analyze, and interpret it, as well as the social and cultural contexts in which it was created (see Zuberi 2003; Zuberi and Bonilla year;-Silva 2008). Decisions based on such data can provoke the effect of discrimination against particular groups in complex and subtle ways, and already socially and economically underprivileged and marginalized groups are more likely to experience this type of data-led discrimination (Schrage 2014; Croll 2012; Borocas and Selbst 2015; Tene and Polonetsky 2013; Robertson and Travaglia 2016).
Do you want to use participant data in the long term?
As we have discussed, the guiding principles of research ethics emphasize the importance and necessity of obtaining informed consent from research participants. However, when researchers intend to archive or share their data and materials for reuse obtaining fully informed consent becomes problematic and perhaps “logically impossible” since no researcher can speculate on every possible use for archived materials (Bishop 2009, 263). Zeitlyn observes, “Once material is archived, it may be consulted by unknown others who might use it in novel ways. . . . Can a researcher obtain meaningful prior informed consent if the uses to which the material might be put in the future cannot be explained?” (2012, 471).
In response, Bishop suggests providing examples of how archived research might be reused or by obtaining open-ended consent (Bishop 2009, 263), while other researchers suggest treating consent as a process instead of a one-time event (Carusi and Jirotka 2009, 294; Parry and Mauthner 2004, 146) Unfortunately, treating consent as a process presents difficulties for maintaining other ethical imperatives such as confidentiality and puts additional burdens on researchers. For example, obtaining additional consent for a new or novel use of materials would require re-contacting participants–a difficult, costly, and sometimes impossible requirement.
A consent model that allows for recontact also means that researchers have to maintain records that link individuals to research data about them. Retaining identifying records is a poor practice for assuring participant confidentiality, and in the case of truly sensitive research, doing so unnecessarily puts participants at risk.
Researchers must therefore carefully weigh the potential risks and benefits of long-term retention, archiving, and sharing of their research data, as well as their ethical obligations to the communities they work with related to consent, representation, and equity when engaging in these practices. This also makes data management The ways a researcher collects, organizes, stores, and accesses data they collect for research. Creating a data management plan allows a researcher to know what data they will be collecting and how they will store and organize it during the research project. planning (covered in the next section) a critical part of ethical research.
Exercise
Complete the following exercise in your LPOL Workbook. This exercise will help you check for learning, engage with the material, and work through new ideas.
The 3.3.3: Ethics Plan Template will help you organize your responses to potential ethical questions in your research project. While this document will help you answer the questions required during an IRB review, it is more comprehensive than IRBs typically require and is meant to be a tool for you to broadly consider and document the ethical practices related to your research project.
The following scale may be useful for evaluating data sensitivity: 1 = Low – Public Information, no significant harms if disclosed; 2 = Moderate – Some risk of harm if disclosed. Confidential, but not private information; 3 = High – Risk of embarrassment, social harm, ethical violations, or other harms if disclosed; 4 = Critical – Potential for criminal/civil penalties, financial loss, or identify theft, etc., if disclosed.)
Topic 3 References
Asher, Andrew, and Lori M. Jahnke. “Curating the Ethnographic Moment.” Archive Journal 3. https://www.archivejournal.net/essays/curating-the-ethnographic-moment/
Bishop, Libby. “Ethical Sharing and Reuse of Qualitative Data.” Australian Journal of Social Issues 44, 3 (2009): 255–72. doi.org/10.1002/j.1839-4655.2009.tb00145.x
Carusi, Annamaria, and Marina Jirotka. “From Data Archive to Ethical Labyrinth.” Qualitative Research Research that aims to understand the whys and hows of human behavior through the gathering of non-numerical data. 9,3 (2009): 285–98. Available at SSRN: https://ssrn.com/abstract=1929485
Clancy, Kathryn B.H., and Jenny L. Davis. “Soylent Is People, and WEIRD Is White: Biological Anthropology, Whiteness, and the Limits of the WEIRD.” Annual Review of Anthropology 48,1 (2019): 169–86. doi.org/10.1146/annurev-anthro-102218-011133.
Garay, Maria M., and Jessica D. Remedios. “A Review of White-Centering Practices in Multiracial Research in Social Psychology.” Social and Personality Psychology Compass 15, 10 (2021): e12642. https://doi.org/10.1111/spc3.12642
Henrich, Joseph, Heine, Steven J., and Ara Norenzayan. “Beyond WEIRD: Towards a Broad-Based Behavioral Science.” Behavioral and Brain Sciences 33, 2-3 (2010a): 111–35. doi.org/10.1017/S0140525X10000725.
Henrich, Joseph, Heine, Steven J., and Ara Norenzayan. “The Weirdest People in the World?” Behavioral and Brain Sciences 33, 2-4 (2010b): 61–83. doi.org/10.1017/S0140525X0999152X.
Parry, Odette, and Natasha S. Mauthner. “Whose Data Are They Anyway? Practical, Legal and Ethical Issues in Archiving Qualitative Research Data.” Sociology 38, 1 (2004): 139–52. http://www.jstor.org/stable/42856598.
Zeitlyn, David. “Anthropology in and of the Archives: Possible Futures and Contingent Pasts. Archives as Anthropological Surrogates.” Annual Review of Anthropology 41 (2012): 461–80. http://cfe.ss.uci.edu/sites/default/files/artifacts/media/pdf/zeitlynd_anthro_and_archives_ara_2012.pdf
Zuberi, Tukufu. Thicker Than Blood: How Racial Statistics Lie. Minneapolis: University of Minnesota Press, 2003.
Zuberi, Tukufu, and Eduardo Bonilla-Silva. White Logic, White Methods: Racism and Methodology The theoretical framework that informs how a researcher approaches their work and what methods are used to collect data.. Rowman & Littlefield Publishers. Lanham, MD, 2008.
Research Ethics Beyond Compliance
While IRBInstitutional Review Board A group that is charged with overseeing and approving research projects. The group ensures that research projects are ethical, meet regulations and standards, and protect any human subjects involved in the research. review is an important part of ethical research conduct, IRB approval is not a guarantee of ethical research design nor does it absolve researchers of additional obligations to research participants and collaborators, especially those addressing the relationships between the researchers and their interlocutors and the long-term responsibilities of stewardship of research data. This section addresses additional ethical considerations that are not fully addressed by the three core principles of IRB compliance.
ReflexivityReflexivity The ability for a researcher to reflect on their own beliefs, judgements, and practices in order to understand how those things could have influenced their research. Reflexivity requires a researcher to challenge and unpack their own assumptions.
All research with humans involves some degree of social relationships and the co-construction of knowledge between researchers and research participants. Because of this, researchers must consider how their social position relative to the people they are working with may affect the information they collect. Reflexivity refers to an active and ongoing evaluation of how your own beliefs, ideologies, experiences, and social and cultural identities may affect or bias your interpretation of your research or the information provided by your participants. For example, in many cultures, access to particular spaces or forms of knowledge may be restricted by gender, age, or social position, and a researcher not meeting these requirements would not be granted access to these areas (Asher and Jahnke 2013). Closer to home, students may see librarians as holding a position of authority and attempt to provide the “right” answers to a question rather than expressing their true opinion. It is very easy for subtle forms of cultural bias to find their way into interpretations of research outcomes. Actively identifying where these might occur helps limit potential misunderstanding and misrepresentation.
Representation
Researchers should evaluate how they will most responsibly, respectfully, and ethically represent their research participants. Who is granted the authority to speak on behalf of a group being studied has become increasingly problematized, particularly in more interpretively positioned disciplines such as cultural studies, cultural anthropology and qualitative sociology. In the past, researchers were granted most of the interpretive authority over the data and information they collected by virtue of their academic credentials, position, membership in a governing class, or skills in academic languages. However, this positioning has become increasingly contested by individuals and groups being studied, and many researchers now see themselves more as “stewards or custodians of data that are produced by a complex set of relationships between researchers and respondents.” (Asher & Jahnke 2013), and that it is appropriate for research participants to also have a voice in research outcomes.
How to ensure that research participants are appropriately represented can vary in scope and degree depending on the goals and topic of a research study. Minimally, it might include asking representatives of a group being studied or appropriate domain experts to assist in the development of research protocols and instruments that are contextually sensitive to the communities a study seeks to learn about. In other cases, it might involve employing participative research methodologies, such as participatory action research, that explicitly involve research participants in all aspects of the research process, including developing the initial research questions.
Anti-racist approaches to equity
Especially in the United States, in which racialized groups have borne disproportionate risk and adverse effects of research with human participants while also being systematically excluded from the process and benefits of research and knowledge production, researchers should carefully consider ways of pursuing anti-racist practices in their research.
When working on research teams, practices aimed at de-centering whiteness should begin with ensuring the research team itself has a diversity of racial and ethnic representation. Research practices and publications across many disciplines tend to overemphasize and overrepresent white participants and their experiences and opinions (Clancy and Davis 2019; Henrich, Heine, and Norenzayan 2010b; 2010a; Garay and Remedios 2021). For this reason, researchers often must take active steps to ensure the racialized groups are represented and included in studies and should conduct checks during the recruitment phase of research studies to ensure participation is not biased. Again, participative research methods that actively engage community members in the design of research protocols and the interpretation of research outcomes can help mitigate the potential for racialized biases.
Additionally, researchers should evaluate if their collected research data reflects, or could contribute to, forms of structural racism. Data is never neutral and contains all of the known and unknown biases of the methods used to collect, process, analyze, and interpret it, as well as the social and cultural contexts in which it was created (see Zuberi 2003; Zuberi and Bonilla year;-Silva 2008). Decisions based on such data can provoke the effect of discrimination against particular groups in complex and subtle ways, and already socially and economically underprivileged and marginalized groups are more likely to experience this type of data-led discrimination (Schrage 2014; Croll 2012; Borocas and Selbst 2015; Tene and Polonetsky 2013; Robertson and Travaglia 2016).
Do you want to use participant data in the long term?
As we have discussed, the guiding principles of research ethics emphasize the importance and necessity of obtaining informed consent from research participants. However, when researchers intend to archive or share their data and materials for reuse obtaining fully informed consent becomes problematic and perhaps “logically impossible” since no researcher can speculate on every possible use for archived materials (Bishop 2009, 263). Zeitlyn observes, “Once material is archived, it may be consulted by unknown others who might use it in novel ways. . . . Can a researcher obtain meaningful prior informed consent if the uses to which the material might be put in the future cannot be explained?” (2012, 471).
In response, Bishop suggests providing examples of how archived research might be reused or by obtaining open-ended consent (Bishop 2009, 263), while other researchers suggest treating consent as a process instead of a one-time event (Carusi and Jirotka 2009, 294; Parry and Mauthner 2004, 146) Unfortunately, treating consent as a process presents difficulties for maintaining other ethical imperatives such as confidentiality and puts additional burdens on researchers. For example, obtaining additional consent for a new or novel use of materials would require re-contacting participants–a difficult, costly, and sometimes impossible requirement.
A consent model that allows for recontact also means that researchers have to maintain records that link individuals to research data about them. Retaining identifying records is a poor practice for assuring participant confidentiality, and in the case of truly sensitive research, doing so unnecessarily puts participants at risk.
Researchers must therefore carefully weigh the potential risks and benefits of long-term retention, archiving, and sharing of their research data, as well as their ethical obligations to the communities they work with related to consent, representation, and equity when engaging in these practices. This also makes data managementData management The ways a researcher collects, organizes, stores, and accesses data they collect for research. Creating a data management plan allows a researcher to know what data they will be collecting and how they will store and organize it during the research project. planning (covered in the next section) a critical part of ethical research.
Exercise
Complete the following exercise in your LPOL Workbook. This exercise will help you check for learning, engage with the material, and work through new ideas.
The 3.3.3: Ethics Plan Template will help you organize your responses to potential ethical questions in your research project. While this document will help you answer the questions required during an IRB review, it is more comprehensive than IRBs typically require and is meant to be a tool for you to broadly consider and document the ethical practices related to your research project.
The following scale may be useful for evaluating data sensitivity: 1 = Low – Public Information, no significant harms if disclosed; 2 = Moderate – Some risk of harm if disclosed. Confidential, but not private information; 3 = High – Risk of embarrassment, social harm, ethical violations, or other harms if disclosed; 4 = Critical – Potential for criminal/civil penalties, financial loss, or identify theft, etc., if disclosed.)
Topic 3 References
Asher, Andrew, and Lori M. Jahnke. “Curating the Ethnographic Moment.” Archive Journal 3. https://www.archivejournal.net/essays/curating-the-ethnographic-moment/
Bishop, Libby. “Ethical Sharing and Reuse of Qualitative Data.” Australian Journal of Social Issues 44, 3 (2009): 255–72. doi.org/10.1002/j.1839-4655.2009.tb00145.x
Carusi, Annamaria, and Marina Jirotka. “From Data Archive to Ethical Labyrinth.” Qualitative ResearchQualitative research Research that aims to understand the whys and hows of human behavior through the gathering of non-numerical data. 9,3 (2009): 285–98. Available at SSRN: https://ssrn.com/abstract=1929485
Clancy, Kathryn B.H., and Jenny L. Davis. “Soylent Is People, and WEIRD Is White: Biological Anthropology, Whiteness, and the Limits of the WEIRD.” Annual Review of Anthropology 48,1 (2019): 169–86. doi.org/10.1146/annurev-anthro-102218-011133.
Garay, Maria M., and Jessica D. Remedios. “A Review of White-Centering Practices in Multiracial Research in Social Psychology.” Social and Personality Psychology Compass 15, 10 (2021): e12642. https://doi.org/10.1111/spc3.12642
Henrich, Joseph, Heine, Steven J., and Ara Norenzayan. “Beyond WEIRD: Towards a Broad-Based Behavioral Science.” Behavioral and Brain Sciences 33, 2-3 (2010a): 111–35. doi.org/10.1017/S0140525X10000725.
Henrich, Joseph, Heine, Steven J., and Ara Norenzayan. “The Weirdest People in the World?” Behavioral and Brain Sciences 33, 2-4 (2010b): 61–83. doi.org/10.1017/S0140525X0999152X.
Parry, Odette, and Natasha S. Mauthner. “Whose Data Are They Anyway? Practical, Legal and Ethical Issues in Archiving Qualitative Research Data.” Sociology 38, 1 (2004): 139–52. http://www.jstor.org/stable/42856598.
Zeitlyn, David. “Anthropology in and of the Archives: Possible Futures and Contingent Pasts. Archives as Anthropological Surrogates.” Annual Review of Anthropology 41 (2012): 461–80. http://cfe.ss.uci.edu/sites/default/files/artifacts/media/pdf/zeitlynd_anthro_and_archives_ara_2012.pdf
Zuberi, Tukufu. Thicker Than Blood: How Racial Statistics Lie. Minneapolis: University of Minnesota Press, 2003.
Zuberi, Tukufu, and Eduardo Bonilla-Silva. White Logic, White Methods: Racism and MethodologyMethodology The theoretical framework that informs how a researcher approaches their work and what methods are used to collect data.. Rowman & Littlefield Publishers. Lanham, MD, 2008.