21 Ethics and Primary Research

Working with Human Subjects

When you conduct primary research with human subjects (which might include texts, images, or places) you need to take into account particular ethical aspects of your research. Imagine if the scientists who discovered the DNA Double Helix had considered how their discovery might impact subsequent generations. What if they had suggested guidelines? Or, what if they hadn’t fought over ownership of the model? How might their interactions with each other have changed ethical approaches to the treatment of DNA data? Nowadays, universities have Institutional Review Boards (IRB) that approve and make recommendations about research with human subjects. If you do not intend to publish your research, your research is not necessarily replicable, or it won’t contribute to generalized knowledge—conversations about research to which particular communities and bodies of research orient, then you do not necessarily need to have your research plan approved by an IRB. When in doubt, you can always ask a faculty member or contact your IRB representative to see if your work is exempt. Even if your research need not be approved by IRB, it is useful to consider their recommendations for ethical research with human subjects because these regulations were developed to protect people. Unfortunately, all of these regulations were developed because researchers have conducted incredibly unethical research. Joseph Breault and other scholars have detailed how our current guidelines have come to be. In brief, many of our guidelines are a version of the 1976 Belmont Report, a report developed by a commission, the purpose of which was to ensure informed consent and ethical treatment of research participants. Informed consent is required when you are conducting research with human subjects. This just means that you ensure that the person you are surveying or interviewing (see Chapter 5 for detailed focus on research methods designed for working with people) fully understands the research in which they’re taking part and that they agree to participate. It is important to let participants know what the research is about; if there will be any benefits, danger, or threat to them; and that they can choose not to participate at any time.

Informed consent and recommendations for ethical treatment of human subjects is a response to inhumane research conducted by Nazis on people during World War II. There have been other problematic, unethical studies— too many to mention here—but one particularly heinous, well-known study is the Tuskegee Study in which African American men infected with syphilis went untreated for forty years so that researchers could examine the impact of the disease. Subsequent regulations ensure that research does not hurt participants and that participants are fully aware of what a study in which they take part fully entails.

This notion of informed consent is central to ethical treatment of research participants. Folks need to fully understand what they are agreeing to when you ask them to participate in your research. There are some populations of people—children, prisoners, mentally disabled persons, and pregnant women—who receive additional protections according to IRB protocols, so you might take this into account if your research includes members of one of these groups. Further, face-to-face research with people can differ from research that you conduct in digital spaces. For instance, if you conduct an informal poll through social media for the purposes of a research project, it may not feel like you’re doing research, but you are! You will need to get consent from your participants, though it might look different than obtaining consent in person.

Interacting with Audiences

The thing is, even if you don’t set out to interview or survey folks, your research still might involve interaction with people, and ultimately, the goal of research is to share your ideas with an audience. If you’re taking photographs as part of your research, as you’ll spend time with in Chapter 7, you’ll have to consider whether or not people will end up in those images. And if so, do they know they’re being photographed? If you’re doing textual research on a blog or a Facebook community, even though the texts you’re considering are public, folks might not think of that space as public. You’ll need to think through how you interact with your potential research participants, data, and audience.

For instance, Kate is currently conducting a project that examines the impact of plagiarism accusations on students and faculty members. All people in her study are asked to consent to participate in the study. However, in talking to research participants about their experiences, she has learned about other students who have plagiarized. What is Kate’s responsibility as a researcher in writing about these people who have plagiarized but who have not consented to participate in her study? As a researcher, she needs to consider the expectations for student privacy, the sensitivity of the material, and the potential harms and/or benefits to the university community. Can she anonymize the students in the stories she has heard, or would sharing any part of these narratives cause the students to suffer? Key aspects to consider when making such decisions are the relationship between the researcher and the research population—or proximity—and potential beneficence* of the research. In this case, Kate is a faculty member, and her research participants are students, so although they all interact in the same sphere, there is a power differential that complicates the relationship. The findings of Kate’s research have significantly beneficial potential for the university, but not at the expense of outing students who have not shared their plagiarism stories publicly.

Try This: Learn About Your Institution’s IRB Office (30 minutes)

Every institution has their own IRB office, complete with their own guidelines and reporting structures. To get a sense of your institution’s ethical approach to research, find your IRB office’s website, and consider the following:

• Who is on your institution’s IRB board? Are they faculty members? Staff members? What disciplines do they represent?

• What is the process on your campus for conducting research with human subjects? • Are there different expectations for undergraduate student, graduate student, faculty member, and staff member researchers?

• How does your institution define research with human subjects? How does it define ethics? You might also identify a nearby institution or a school you considered attending. Find its IRB office website and compare it with the one at your school. Where are the overlaps? What is different? And what is the significance of the comparisons you have made?

Designing Writing That Does Ethical Work

Hopefully you are already on board with the importance of approaching research ethically, with ethics and fairness as your primary research objective rather than objectivity. If you still have questions, or if you’re not sold on these ideas yet, please don’t hesitate to talk to your instructor and colleagues (and us!) about your questions, engage in your own research on ethics, and see the end of this chapter for further reading recommendations. But if you are ready to start designing ethical research, some important written products to develop are research protocols, or your plan for research; scripts, or the particular way you will describe your research to participants, particularly for focus groups in which a group of people participate in the research or there are multiple research facilitators; and participation or consent forms.

Try This Together: Considering Ethical Research (45 minutes)

In groups, consider the following situations, which include complex ethical components from research projects scholars have developed. Talk through the ethical issues at hand: how might you handle them?

• In 2012, scholar Jody Shipka bought six boxes from a yard sale that included personal photographs, diaries, and scrapbooks from a couple she did not know. These boxes inspired her project, “Inhabiting Dorothy,” in which she attempted to travel and record the same paths that the couple had catalogued in their materials. Dr. Shipka invited audience members to also participate in the project, reenacting experiences and images of folks they do not know. What are the ethical components at work here?
• Technical Communication Scholar Fernando Sanchez examined a 2017 court case in response to gerrymandering in two Texas districts. He examined the ways that legislative mapmakers used GIS software to create maps that make political arguments. How might maps and their representations of people represent ethical or unethical research practices? How do images and their representation impact audiences? How might subsequent researchers take up Sanchez’s findings?
• Heidi McKee described how in 2008 she read a research project that accidentally included contact information for one of the research participants who was supposed to be anonymous. The authors had included a screen capture of a newspaper article that described the research participant’s brush with the law. Although the researchers meant to keep the subject’s identity secret, the screen capture was easily enlarged, and the article and identifying information about the person was easily accessed. How does this experience highlight the complexities of maintaining research participant anonymity? How does digital research and publication impact this complexity?
• Photographer Christine Rogers developed a series of images between 2007-2008 titled “New Family” in which she posed for family photos (complete with the quintessential hand on shoulder pose) with people who were strangers to her. In what ways would Ms. Rogers have to approach participants? What are the ethical considerations of such a project?

Below, we’ll focus in particular on developing a participation form, which is necessary for conducting research with human subjects. In Chapter 5, we outline specific research methods for working with people, including surveys, interviews, and case studies, but before you do that work, you’ll need to make sure that participants understand and want to participate in your research. Often in working with human subjects, we are asked to “do no harm” and to weigh the potential benefit to society in relation to the potential discomfort to research participants. We hope that this chapter helps demonstrate why it is so important (and complicated) to consider ethical questions in conducting secondary research and designing primary research, but we invite you to go a step further. In the chapters that follow, you’ll be introduced to multiple research methods and invited to develop invention activities for potential research projects. Instead of merely considering how to avoid harm, consider how your research might actually do good. How can we use these research methods to not just perform ethical research but to in fact be more ethical?