Ethical Norms for Research

In addition to the three ethical principles in the Belmont Report, the National Commission (1979) also identified six norms to guide research: (1) use of a valid research design; (2) evidence of researcher competency; (3) identification of consequences of the research in terms of keeping participants' identification confidential; (4) maximizing benefits, minimizing risks; (5) appropriate sample selection and voluntary informed consent; and (6) informing participants of compensation for potential harm. Of course, ethical challenges arise as researchers struggle with the meaning of these norms. For example, how do researchers defend their research design as valid or provide evidence of their competency? Quantitative, qualitative, and mixed-methods researchers agree that they have an ethical responsibility to conduct rigorous research (Lincoln, 2009; Mark & Gamble, 2009; Mertens, 2010). After all, if the research lacks rigor, the results can be erroneous, and subsequent use of such results could cause great harm.

Validity, Rigor, and Ethics in Qualitative Research

In Guba and Lincoln's early writings (1989), the authors proposed the following principles to guide researchers in terms of linking the quality of their research with ethical practice:

• Credibility is the qualitative parallel to internal validity (the confidence that a researcher has that his or her intervention caused the change in the dependent variable). Credibility is established by
  • Sustained involvement in the research setting: Does the researcher stay in the research setting long enough to really understand what is going on?
  • Peer debriefing: Does the researcher meet with another person periodically throughout the study to reflect on any biases or omissions?
  • Member checks: Does the researcher share the preliminary results with members of the community to be sure they think the researcher's portrayal is accurate?
  • Monitoring self-perceptions: Does the researcher keep a journal or notes about his or her own beliefs, biases, perceptions, and changes in thinking?
  • Use of multiple data sources: Does the research include data from interviews, observations, and document reviews?
• Transferability parallels external validity, which means that the results of a study can be generalized to other samples from the same population. Establishing transferability is accomplished by the provision of sufficient details about the research participants and setting so that readers of the research can make a determination as to whether or how the findings from a study might transfer to their own context.
• Dependability parallels reliability, which means that there is consistency in the measurement of the targeted variables. Establishing dependability requires that the researcher perform a dependability audit, showing the points at which changes occurred in the research process and understandings related to that process.
• Confirmability parallels objectivity, which relates to the absence of personal bias. Confirmability is based on the provision of a chain of evidence such that the reader can see the source of the data and illustrative examples from the data that support the researcher's conclusions.
• Authenticity refers to providing a balanced and fair view of all the perspectives in the research study.

Lincoln (2009) expanded on the authenticity principle as being crucial for ethical qualitative research. She identified five fundamental dimensions of authenticity: fairness or balance, ontological authenticity, educative authenticity, catalytic authenticity, and tactical authenticity. She defines these terms as follows (pp. 154–155):

• Fairness, or balance, references the researcher's strenuous efforts both to locate all stakeholders in the inquiry and to persuade them to become full partners in nominating issues of interest that should be investigated.
• Ontological authenticity references the ability of the inquiry's (and inquirer's) activity, particularly data collection and interpretation, to elicit from respondents constructions that they were unaware that they held.… This particular form of authenticity refers specifically to that mental awakening—the recognition that feelings, attitudes, beliefs, values, or other mental dispositions never were expressed previously, even to oneself.
• Educative authenticity refers to the mandate among phenomenological, qualitative, and interpretivist inquirers to make others aware of the social constructions of all stakeholder groups.
• Research data, however, have no impact if individual and group stakeholders are indifferent to them or if interpretations are those that the community of stakeholders had already recognized for themselves. Findings not only must shed new light on a phenomenon of interest, they must also engender sufficient interest, consequence, and weightiness to prompt stakeholders to some positive action. This prompt to action is termed catalytic authenticity.
• The final task of authenticity criteria … is the training of research participants to speak on their own or on their children's behalf. This criterion is termed tactical authenticity, for its purpose is to train participants on how to “speak truth to power” and how to utilize recognized policies and procedures to make their wishes known to those in authority.

Researcher Competency

As alluded to in the previous section, researcher competency involves a great deal more than knowledge about methods from textbooks. Qualitative researchers need to be able to demonstrate people skills in culturally appropriate ways. In particular, researchers have increased their attention to the concept of cultural competency. “Cultural competency is a critical disposition that is related to the researcher's or evaluator's ability to accurately represent reality in culturally complex communities” (Mertens, 2009, p. 89). Symonette (2004, 2009) argues that cultural competency is not a static state, but is a dynamic journey that researchers undertake through self-reflection and interaction with the community. Concerns about a lack of cultural competency on the part of educational and social science researchers led to revisions of the codes of ethics for several professional associations, including but not limited to the American Educational Research Association (AERA), American Psychological Association (APA), American Evaluation Association (AEA), and American Sociological Association (ASA). For example, the American Evaluation Association (2004) revised its guiding principles to include an explicit principle that addresses the role of cultural competency in ethical program evaluations.

The work of the American Psychological Association (2003) provides one illustration of the importance of the concept of cultural competency in research and the ethical codes that guide researchers. APA's Joint Task Force of Division 17 (Counseling Psychology) and Division 45 (Psychological Study of Ethnic Minority Issues) published Guidelines on Multicultural Education, Training, Research, Practice, and Organizational Change for Psychologists. In addition, APA's Council of National Psychological Associations for the Advancement of Ethnic Minority Interests published Guidelines for Research in Ethnic Minority Communities (2000). This excerpt from that document illustrates the way that APA links cultural competency and ethics in research.

Although APA grounds this discussion of cultural competency in issues related to race and ethnicity as they are experienced in the United States, other professional associations and marginalized groups have also published statements that articulate their view of cultural competency in their various communities. These include, for example, Maori communities (Cram, Ormond, & Carter, 2004); the African Botswana community (Chilisa, 2004); Canadian natives (Mi'kmaq College Institute, 2006); Australasians (Australasian Evaluation Society, 2006); indigenous communities (Osborne & McPhee, 2000); Navajo people (Brugge & Missaghian, 2003); and deaf people who represent the American Sign Language community (Harris et al., 2009).

Part of the movement toward understanding the relationship between cultural competency and ethical research is reflected in the establishment of institutional review boards that are specific to individual communities, such as those for specific Native American tribes (LaFrance & Crazy Bull, 2009) and Maori communities (Cram, 2009; Moewaka Barnes et al., 2009). Although obtaining approval from review boards is at times viewed as onerous, especially by outside researchers, the members of these communities see great value in the time and effort it takes for such researchers to do so. They view this as an opportunity for the researchers to advance in their cultural understandings before they undertake their studies. Dodd (2009 recommends that when formal ethical review boards are not available for marginalized communities, communities should form advisory boards that are representative of the diversity of their members and with whom institutional review boards can consult.

Informed Consent

As stated in the Belmont Report (National Commission, 1979), voluntary informed consent means that the participants must agree to participate without threat or undue inducement (voluntary), must know what a reasonable person in the same situation would want to know before giving consent (informed), and must explicitly agree to participate (consent). This description contains several terms that are open to different interpretations.

One of the problematic concepts is what it means for consent to be voluntary without undue inducement. Ethicists are concerned that people may agree to participate in research because they feel compelled to do so in order to get money or whatever the researcher is offering to volunteers. If people are very poor and hungry, and they are offered a meal or a small amount of money, would that still allow them to truly volunteer? For example, if I offer a college student twenty dollars to participate in research, is that undue inducement? Most IRBs have decided that researchers can pay students at the going hourly rate for doing other types of work at the university.

Most IRBs in the United States interpret the terms informed and consent to mean that the researcher needs to provide a written document that explains the research in an understandable way and that the potential participants then willingly sign. As qualitative researchers know, explaining the research in an understandable way can be quite challenging and demanding, requiring cultural competency.

Obtaining a signature on a form can also be fraught with difficulties depending on the context of the research. Several of the ethical dilemmas introduced this chapter are based on these complexities. For example, Ntseane (2009) conducted a study of African women entrepreneurs, which required that she explain the study to people at multiple levels in the Botswana culture, including the tribal council, the community elders, the business association, and finally the women entrepreneurs themselves. When she asked the women to sign the informed consent form, they grew angry with her. They had already given her their word that they were willing to participate; for her to then ask them for a signature was considered an insult. Wilson (2005) studied funding agencies' perceptions of deaf people in Jamaica, as well as how the daf people felt they were being perceived by these agencies. One particular funding agency had a very paternalistic view of deaf people, and the deaf people resented this. However, the funds provided by that agency were the only resources that members of this deaf community had as a means to gain access to education. Hence, the deaf people in that part of Jamaica did not want to sign an informed consent form for fear that their names would be made known to the funders, with the consequence that they would lose the little bit of support that they had. These deaf people would knock on Wilson's door in the night so no one would see that she was talking with them. They agreed orally to be interviewed, but they did not want to sign a paper.

The work of the American Anthropological Association (AAA) has been particularly helpful in understanding this challenge. An AAA paper (2004) explains how institutional review boards can be supportive of ethical conduct of ethnographic research. This online document states,

In order for a researcher to navigate the IRB in such situations, it is helpful if the IRB has a person with expertise in qualitative research and cultural competency. Having such a member of the IRB would facilitate review of qualitative proposals with flexible research designs that are expected to evolve throughout the course of the study. If such a person is not on the board, it might be possible to suggest an outside reviewer who has these skills. If that is not possible, then it is incumbent upon the researcher to educate members of the IRB about these ethical considerations.

Qualitative research designs are often described as being emergent, meaning that the focus, questions, and engagement with members of the community may change as the study progresses. This creates a challenge for informed consent if this is approached as a one-time thing at the beginning of the research. When the conditions of the research change, the researcher needs to revisit the informed consent to be sure that the participants continue to be willing to be part of the study.

Informed consent in research that involves children comes with its own challenges. Legally, children (under the age of eighteen in the United States) cannot sign an informed consent agreement (Vargas & Montoya, 2009). Generally researchers are required to obtain consent from the children's parents. However, children can then provide assent, meaning that they understand and agree to participate in the research. Complexities arise when researchers work with groups of children or youth who may not want their parents to know something very personal about them, such as if they are lesbian or gay and their parents do not already know (Dodd, 2009). In such cases, a researcher can obtain a certificate of confidentiality, a legal document that protects identifying information from subpoena for legal proceedings. Certificates of confidentiality provide protection against “compelled disclosure of identifying information about subjects enrolled in sensitive biomedical, behavioral, clinical or other research. The protection is not limited to federally supported research” (U.S. Department of Health and Human Services, 2003). The National Institutes of Health's Web site notes that the certificates are granted when disclosure of study information “could have adverse consequences for subjects or damage their financial standing, employability, insurability, or reputation” (U.S. Department of Health and Human Services, 2011). For example, for LGBTQ youths who are not “out” to their parents or who live in an unsupportive or even violent home, requesting parental consent for a research study involving LGBTQ issues could pose a serious risk. According to Dodd (2009, p. 482),

Szala-Meneok (2009) discusses informed consent issues as they relate to older adults whose mental capacity may be either diminished or waning over the course of the study. Suppose an elderly person signs a consent form for a long-term study when she is lucid. Is that consent form still valid if she does develop dementia? Szala-Meneok suggests that researchers have an ethical obligation to revisit the informed consent periodically over the study, especially if they note changes in the person's mental and physical health. In a case of dementia, another person (a family member, a significant other) could be asked to sign the consent form for the elderly person.

Confidentiality

Researchers are ethically obligated to promise confidentiality to participants in a study; this means the data will be reported in such a way that they cannot be associated with a particular individual. This is different from anonymity, which means that no one knows the identity of the respondent, not even the researcher. As a part of the confidentiality issue, participants should also be informed that researchers and evaluators are required by law to inform the appropriate authorities if they learn of any behaviors that might be injurious to the participants themselves or that cause reasonable suspicion that a child, elder, or dependent adult has been abused.

As noted in the previous section, there are particular circumstances in research in which revealing the identity of a participant could be quite harmful. Brabeck and Brabeck (2009) provide another example in their report of a study of Mexican American women who experienced intimate abuse. One ethical decision made in the course of the study had to do with whether participants who wished to do so might disclose their identity. One particular woman wanted her name used because she wanted the world to know the identity of her abuser. Ultimately, the researcher used her power to veto disclosure due to concern for participants' safety. Brabeck had established a relationship of trust with the participants over an extended period of time; she was able to explain the possible consequences of revealing identities in this research and thus sustain their ethical research relationship.

In a contrasting example, Ntseane (2009) was also confronted with an ethical issue concerning whether participants might disclose their identity. Women entrepreneurs in her own nation, Botswana, wished to have the names of their businesses published as part of her dissertation. Their argument was that Ntseane would be using the names of authors in her literature review section who had only written about the Botswana people. The participants insisted that she include their names in her dissertation because they were providing the most important part of the research—the data. Ntseane had based her rationale for the study on telling the story of these women from their own perspectives. She was therefore sympathetic to their request to have their names associated with their stories. She also felt conflicted in her obligation to participants in the face of her need to comply with her United States–based doctoral committee and the university IRB requirements for confidentiality. This dilemma threatened trust at two levels: that between researcher and participant and that between researcher and institution. Ntseane decided that it was important to include the names of the women who provided her with the data; she renegotiated the need for confidentiality with her university.