Ethical Principles

Cognizance of the critical need to attend to ethical issues in research arose from atrocities perpetrated in the name of research, such as the medical experiments conducted by the Nazis during World War II and the Tuskegee experiment, which involved studying the course of syphilis in black men in studies conducted in the United States from 1933 to 1972 even after a treatment for the disease had been discovered. These examples represent extremes in the unethical conduct of research; however, researchers also need to be aware of less obvious, yet still harmful, effects of research. In the United States, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was established in 1978 to develop regulations to guide ethical conduct for researchers. The results of the National Commission's work are found in the 1979 Belmont Report, which outlines three basic principles to guide researchers:

Beneficence: Researchers should strive to maximize the good outcomes for science and humanity and minimize risk or harm to individuals in the research.

Respect: Researchers should treat the people in their study with respect and courtesy, with particular concern for children and people who have mental retardation or senility.

Justice: Researchers should ensure that the people who participate in the research are those who reap the benefits of the research. They should achieve this by the use of procedures that are reasonable, nonexploitative, carefully considered, and fairly administered.

Qualitative Researchers and Axiological Belief Systems

Axiology is the branch of philosophy that explores the nature of ethics. Christians (2005) and Lincoln (2009) provide critical insights into the axiological assumptions of qualitative researchers who situate themselves in the constructivist paradigm. Paradigms are frameworks of philosophical assumptions that guide researchers. For example, constructivists assume that reality is socially constructed, and they see the purpose of research as to authentically understand multiple constructions of what is considered to be real. With each edition of The Sage Handbook of Qualitative Research (Denzin & Lincoln, (2005), constructivists have increased their concerns about social justice and human rights. Mertens (2009; 2010; Mertens, Holmes, & Harris, 2009) conceptualized axiological assumptions, while commensurate with those that are evolving from constructivist worldviews, explicitly reflect ethical beliefs of researchers who situate themselves in the transformative paradigm. Within this framework, researchers believe that there are different opinions about reality, but that some of those versions of reality constitute barriers to the furtherance of social justice and human rights. This leads to the need to use culturally responsive methods of research that take into account the lived experiences of those who face discrimination and oppression. Culturally responsive research is characterized by awareness of power differentials both between the researchers and the participants and within communities. The transformative researcher focuses on establishing relationships with participants that allow for voices of all relevant constituencies to be heard, especially those associated with positions of least privilege. For example, a researcher in a project designed to improve reading instruction for deaf students would ask about the role of a visual language in bridging between American Sign Language and English in print form (Harris, 2011). These two worldviews, constructivist and transformative, are associated with the use of either qualitative methods or mixed methods (in other words, the combination of quantitative and qualitative methods in one study or a program of study).

Researchers who focus on collecting quantitative data sometimes claim that their research is objective because their personal opinions are not involved in the collection and analysis of the data and thus the results of the study. However, constructivists object to the reduction of human experience to a single number and raise questions about whose judgment was used to decide what data to collect, how to analyze those data, and how to interpret them. Constructivists openly acknowledge that researchers need to do a careful critical analysis of themselves and be sensitive to how their values and biases influence the research situation. Transformative researchers agree on the importance of self-awareness, but they also emphasize awareness of the differences in power relations in the research situation and how their research can be used to address issues of social justice. Additional ethical issues arise in constructivist and transformative research because of closer involvement with researched communities and increased emphasis on the use of research findings for social transformation.

Reframing Ethical Principles from a Transformative Perspective

As mentioned previously, constructivists have begun to wander into the transformative paradigm's terrain by increasing emphasis on issues of human rights and social justice. The transformative paradigm provides stimulation to rethink the standard ethical principles for research because it raises explicit questions about how researchers can contribute to addressing issues of discrimination and oppression as a means of furthering social justice and enhancing human rights. The standard ethical principles are reexamined here in light of a transformative perspective.

Beneficence

The principle of beneficence directs researchers to strive to maximize the good outcomes of their studies for science and humanity and minimize risk or harm to individuals in the research. The challenge comes in interpreting what is meant by maximizing good and minimizing risk or harm, and in researchers' abilities to discern whether they are doing good or harm. Even the choice of a research topic comes under scrutiny, as does choice of methods and strategies for dissemination and use of research findings. For example, members of a minority community might acknowledge that sexual abuse occurred at the hands of a member of that community, but they do not want to “air their dirty laundry.” If a qualitative researcher hears these two perspectives, will she or he do more harm to the community to make this public or more good if it is revealed? What are the ethical implications of choosing to research such a sensitive topic? What are the ethical implications if sensitive topics are avoided?

Researchers who work for social transformation reframe the principle of beneficence to focus on understanding what is viewed as beneficial to members of the researched community. For example, Sullivan (2009) writes about issues that arise in research with people who have disabilities and raises the following questions in regard to avoidance of harm and promotion of benefits: “Is the research intrusive and potentially harmful to the researched? Is there any reciprocity between the researched and the researcher?” (p. 70). Similar issues are raised by members of indigenous groups, especially by Maori researchers in New Zealand (Cram, (2009) and American Indians in the United States and Canada (Battiste, (2000; LaFrance & Crazy Bull, (2009). Indigenous communities are asking for explicit statements from researchers as to what the researchers will gain (funding, publications, notoriety); what the community will gain (findings that can be used to lift them out of poverty or to address other social challenges, such as alcoholism and illiteracy); as well as the potential harm to individuals and the community (ruining their reputation or belittling their cultural practices). The harm to individuals needs to be considered in terms of the potential revelation of their identity through provision of details in conversations, writing, and presentations based on the research, especially in small or close-knit communities (Haverkamp, 2005).

Respect

The second ethical principle, respect, is defined in the Belmont Report (National Commission, (1979) in terms of treating people in the study with respect and courtesy, especially if the participants are not autonomous, such as children, people with mental retardation, or people suffering from senility. Kitchener and Kitchener (2009) interpret this definition of respect as including two directives for researchers: (1) to allow research participants to freely choose to participate in the research or to refuse or withdraw without penalty; and (2) to not make promises to the participants that you cannot fulfill (such as not promising that their child will be just like a hearing child if he or she gets a cochlear implant).

Qualitative researchers have raised many ethical questions about the meaning of respect and strategies for establishing trust in various cultural groups. Maori researchers provide insights into the meaning of respect in their discussions of how researchers enter their community, whether they are members of the community or not (Cram, 2009). Everyone is expected to adhere to the cultural norms of their community; that means they need to identify who they are, where they are from, the purpose of the research, who will own the data, who will benefit from the research, and how the information will be disseminated.

From a transformative perspective, learning about cultural norms and practices from the viewpoint of community members is part of demonstrating respect and establishing trust with a community. This learning includes several aspects related to power issues, including the formation of relationships versus partnerships, the establishment of teams of researchers with community representation, and the choice of language used in the research study. For example, some indigenous peoples distinguish between partnerships and relationships, viewing partnerships as short-term arrangements made for the conduct of research and relationships as developing over long periods of time through involvement with a community (Bishop, 1996; Cram, 2009; LaFrance & Crazy Bull, 2009; Moewaka Barnes, McCreanor, Edwards, & Borell, 2009;). Research agendas may be developed over many years of both formal and informal engagement with the community. The following quotation illustrates the importance of community involvement from an ethical perspective.

Researchers who are not members of the community in which they are working need to be aware of how their own values influence their approach to the study, as well as their perceptions of the processes that they observe. Such researchers can also keep a journal of how their thinking progresses throughout the study and engage in dialogue with a trusted member of the community to help with reflection on these matters. Researchers who are members of the targeted community are not exempt from concerns about allowing their biases to influence the research. All researchers need to engage in this self-reflection and reflection in relation to a community in order to preserve the integrity of their work.

Participatory action researchers have explored strategies that demonstrate how to involve participants as active members of research teams (see Chapter Twelve in this text; Fine et al., 2003; Kemmis & McTaggart, 2003; Kidd & Kral, 2005). Although building teams of researchers that are inclusive of members of the targeted community is not unproblematic, it does represent a strategy that lends itself to demonstrating respect, building trust, and developing relationships (Harris, Holmes, & Mertens, 2009). Respect in team building means that members of the community will serve as principal investigators or coresearchers, not only as research assistants or token representatives. Respect in team building also means acknowledging the expertise that team members bring to the inquiry process, not assuming that a university researcher is the expert who has come to teach the less sophisticated. All members of the team bring value to the team; learning should be a synergistic process, with each contributing from his or her base of knowledge and experience. As deaf researchers point out, they can and do learn sophisticated research methods, but hearing researchers cannot really learn what it means to be deaf (Harris et al.).

Another very important dimension of respectful research is the relationship between language and culture and the associated power issues. Several groups raise questions about the use of a dominant language in research that dismisses the language of the community. Should the language of discourse in the planning and implementation of the research be the language of the dominant culture or the language of the community? Should interpreters be provided for community members or for the dominant language users? Deaf researchers note that when the language of discourse is spoken English, they are at a disadvantage because of the need to go through interpreters and the lag time between what is said and what is signed (Harris et al., 2009). What if the tables were turned? What if researchers who want to conduct research in the deaf community (or any minority-language-using community) who do not know their language were obliged to get interpreters to express what they want to say?

Justice

The third principle found in the Belmont Report (National Commission, 1979) is justice, defined as the process of ensuring that the people who participate in the research benefit from the research. Researchers should achieve this by using procedures that are reasonable, nonexploitative, carefully considered, and fairly administered. This principle overlaps somewhat with the concept of beneficence; however, it has been interpreted to mean that such groups as college sophomores and prisoners, for example, should not be overburdened with expectations of research participation simply because they are easily accessible, but at the same time groups should not be excluded from the opportunity to participate in research that has the potential to benefit them because they are viewed as hard to reach. Members of the dominant culture might view members of a linguistic minority, people with disabilities, or members of stigmatized groups as hard to reach because they do not have experience with those groups.

When the principle of justice is reframed using a transformative perspective, researchers are reminded of the diverse nature of groups, some characteristics of which can be used as a basis for excluding members of marginalized communities from participating in and benefiting from research. For example, historical studies of women that assumed that researchers could study middle-class white women and then speak on behalf of all women exclude the perspectives of poor women of color (Brabeck & Brabeck, 2009). Feminist thinking has evolved to recognize that women reflect wide variations in terms of age, sexual orientation, socioeconomic status, education, ethnicity, disability, deafness, health, and so on. Similarly, researchers in the disability community note the diversity within their membership on these characteristics, as well as in terms of the types and severity of disabilities and their accompanying need for supportive accommodations for authentic participation in research (Mertens, 2009; Sullivan, 2009). Researchers of gender issues ask if categories of gender need to be expanded to include lesbian, gay, bisexual, transsexual, and queer, while at the same time expressing concerns about the risks of “outing” individuals and putting them at risk of harm (Dodd, 2009; Mertens, Fraser, & Heimlich, 2008).