100 Questions (and Answers) About Research Ethics. Emily E. Anderson

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direct benefits cannot be assumed. The therapeutic misconception can occur if a participant does not fully understand the purpose of the research, or does not understand the differences between research and services. Individuals participating in research may incorrectly believe that the intervention or program being evaluated in a research study already has an evidence base to support its use. They may not realize that they are being asked to participate in research in order to gather needed evidence on whether the intervention works—or does not work.

      Although the term was conceived of within the context of clinical research, therapeutic misconception can occur in social and behavioral sciences research. Researchers should be particularly aware of the potential for such misunderstanding when conducting research on behavioral or educational interventions. People tend to assume that any services offered are already proven to help. When recruiting for an intervention study, it is especially important to emphasize that you do not yet know if the intervention being offered will achieve the desired results.

      Participants may also misunderstand the purpose of the research in nonexperimental studies that use surveys or interviews. For example, individuals might confuse a request to take a survey about their smoking habits with an offer to participate in a program designed to help them quit. Being asked to take part in an in-depth qualitative interview after a natural disaster could be mistaken for an offer of counseling or other mental health services. The potential for such conflation is particularly strong if the study is being conducted by a service provider or in collaboration with an agency that provides direct services.

      The best way to limit potential misconceptions about research is to provide participants with clear information about the purpose and benefits of the research during the recruitment and informed consent process. For example, to explain the study purpose, you can include straightforward statements such as, “The purpose of the study is to find out if this program can help students improve their reading scores. We do not know if this program is better or worse than the current reading program offered. We are doing the research to answer this question.” Regarding benefits, you can include statements such as, “You will not receive any direct benefit from taking part in this research. However, if we find out that the program works, it can be offered to students in the future.”

       More questions? See #11, #14, and #40.

      Question #17 I Will Conduct Research on a Sensitive Topic. What Should I Do to Prevent Psychological Harms?

      Research in the social and behavioral sciences may explore sensitive topics. A few examples include domestic violence, sexual assault, sexual practices, or the death of a loved one. Such research poses psychological risks such as sadness, anxiety, or embarrassment. You can take several steps to reduce the possibility that participants experience psychological harm from participating in research on sensitive topics.

      You should consider the method of data collection, as different methods carry different kinds of risks. The thorough exploration of past experiences through in-depth interviews may increase the risk of psychological harm compared with surveys, which are usually more superficial. However, in-depth interviews involve a relational aspect that might provide greater opportunities for participants to make meaning of their experiences and thereby increase participants’ perceived benefits and contribution to science as compared with surveys. Conducting face-to-face, in-depth interviews also includes the possibility of other risks, such as a breach of privacy because the participants’ identities are known by the researcher, and they may be seen by others.

      Methods to reduce the possibility of psychological harm include

       limiting the number of sensitive questions included in a survey or interview guide to the most essential;

       during the informed consent process, describing the types of questions that will be asked so potential participants can decline if they feel that the questions are too intrusive or that they might become upset from answering the questions; and

       letting participants know ahead of time that they can choose not to answer any question that makes them feel uncomfortable.

      If a participant becomes upset, it is a good practice to stop the survey or interview—if it is a face-to-face or telephone interaction—and allow the participant time to regain composure. If in person, interviewers should offer the participant tissues and a glass of water. Once the participant is ready, the interview or survey can resume. However, participants should be allowed to stop the interview or survey completely if they do not want to continue. In these situations, the interviewer should obtain the participant’s permission to allow any data provided thus far to be included in the research—even if a consent form has been signed. If participants decline, their data should not be included in the dataset. Even when the survey or interview was not completed, interviewers should provide the participant with the reimbursement or incentive for completing the interview or survey.

      Identifying and minimizing psychological harm can be trickier in research that is not conducted in person, particularly for online surveys, because the researcher will not know if the participant becomes upset. For research conducted in any setting, when applicable, researchers should arrange for referral to counselors and list community programs for any participants who want such services—even for those who do not become upset during the research. These services can be described to participants at the end of the survey/interview or earlier, if appropriate.

       More questions? See #11, #12, and #97.

Part 3 Protecting Privacy And Confidentiality

      Question #18 What Is Meant by “Privacy” and “Confidentiality,” and Is There a Difference?

      Privacy and confidentiality are two critical concepts that all researchers must address when designing and implementing research. Often assumed to have the same meaning, privacy and confidentiality are, in fact, two discrete but related concepts. An easy way to distinguish the two is to think of privacy as protecting individuals and confidentiality as protecting information—or data—that people share with researchers.

      Privacy can be defined as having control over oneself—that is, people can choose when to share information about themselves and with whom. During recruitment, you can protect the privacy of prospective participants by implementing procedures that do not disclose information to others that would identify prospective participants as being part of a specific group, engaging in a specific behavior, or having a specific health condition. During data collection, you can reduce the likelihood of a violation of privacy by implementing procedures that allow participants to share their information with researchers where others cannot hear or see them.

      When participants privately share their information with researchers, they expect that their information will remain confidential—that is, they expect that only the research team and other authorized individuals will have access to their data. In a practical sense, confidentiality refers to the specific steps researchers implement to keep information about participants unknown to others, to the extent possible. Federal research regulations require researchers to establish procedures to protect the confidentiality of information that is individually identifiable (meaning, the participant can be identified directly by the researcher or through identifiers that are linked with the data). However, researchers often implement the same confidentiality procedures for all types of data, as they are good standard research practices.

       More questions? See #21, #22, and #23.

      Question #19 What Makes Data De-Identified?

      Datasets that have been stripped of all personal identifiers are considered to be de-identified. The federal research regulations do not list specific personal identifiers. Instead,

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