Research Ethics:

Collecting Data about Obligatory Referral Topics

 

What are Obligatory Referrals?

Some sensitive topics might obligate a referral or need to be supported by a qualified professional. Examples include but are not limited to bullying, depression, suicidality, illegal, actions, trauma.

Anyone conducting research in these sensitive Obligatory Referral areas should discuss their proposed study with an IRB member in IRB Office Hours (offered most weekdays).

• The data collection cannot be approved unless the study offers something new and significant to the field. An exhaustive literature review is absolutely essential before proposing sensitive data collection. To receive ethics approval, a study about the experiences/perceptions of sensitive topics must show potential for addressing a meaningful gap in the research literature (or a gap in practice for the professional doctorate programs.). To be ethically justifiable, the risks would need to be offset by significant benefits.

• Some researchers initially propose sensitive data collection that is too broad in scope. A researcher may not collect more data than is absolutely necessary to answer the articulated research questions for the current study.

• Researchers must make themselves aware of relevant local laws and policies. Depending on the state, some issues, like bullying or harassment, can be a punishable misdemeanor or even a felony in some cases. More and more states are now addressing cyberbullying in their legislation. Mandated reporting also varies by state. Some schools and other workplaces have zero tolerance policies with which researchers might need to comply.

• Regarding activities that could be considered illegal (e.g., bullying, involvement in criminal activities, etc.), participants must be informed of the legal risks upfront during the informed consent process. They must be made aware of the potential consequences of “self-incriminating” disclosures.

• The only way for a researcher to offer confidentiality (i.e., promise to not report a participant’s disclosure regarding illegal behavior) would be to obtain a certificate of confidentiality from the US National Institutes of Health, which protects data from subpoena. This certificate can take several months to obtain and is only available for research done in the United States. For research done outside the U.S., the researcher will need to identify if there are any local policies or regulations that would offer any addition protection for participants or study data.

• The researcher needs to articulate a defensible plan that will determine whether and when to break confidentiality for safety/wellbeing reasons (meeting reporting requirements while not unnecessarily breaking confidentiality in a manner that undermines the validity of the data and the trust relationship between the researcher and participant.) The researcher must anticipate and plan for all possible scenarios including:  What if the participant is the victim but asks the researcher to not report the matter to authorities? What if a prosecutable offense has been committed but the student will not name the perpetrator out of fear of retaliation?  To what degree does a participant (who may be a minor) have the right to “not press charges” in these situations? To what degree can/should a minor’s data be withheld from the minor’s parents? Keep in mind that even if you are not directly asking about illegal activities, it could come up when a participant is discussing their life experiences related to these more sensitive topics.

• A consent form should include at least one referral to a free or lowcost counseling service in case issues arise before, during, or after the study. It is not always safe to assume that a participant would feel comfortable talking to a site counselor or HR professional.

• To study these sensitive topics, it is worth exploring whether existing data is available for secondary analysis, such as:
  • Needs assessments
  • De-identified incident reports
  • Site surveys

An interview about a sensitive topic presents the following ethical challenges:

• The researcher must obtain the interviewing experience/skills to appropriately redirect the participant when the topic wanders outside of the approved interview content. This requires roleplaying with an experienced qualitative research interviewer.
• The researcher must design a plan for responding appropriately to distress (without crossing over into a counseling role).
• The researcher must conduct the interviews in a discreet, neutral location that will not out the participants to others. Phone or online conferencing seems to work well. Conducting an interview in the participant’s home is only approvable if (a) a neutral, private location is also offered as an alternative, and (b) the researcher’s presence would not expose the participant or other residents to any risks, (c) sufficient provisions are made to ensure privacy during the interview, and (d) sufficient provisions are made to ensure that the researcher is not imposing on the residents by letting the interview run long, staying beyond their welcome, etc. (i.e., building frequent check-ins into the interview guide and/or using a timer).
• The researcher needs to have the skillset and an articulated plan to make appropriate referrals rather than becoming personally involved in the interviewee’s situation or giving advice to the interviewee.
• The researcher is not permitted interview his or her own students, clients, subordinates or anyone with whom the researcher has an ongoing relationship.
• The researcher is not permitted to interview people about trauma unless they have already processed that experience with a qualified professional. In other words, we don’t allow a research interview to be the first time a person ever talks about trauma to someone outside of their personal circle.
• With interviews, the researcher needs to take measures to prevent interviewees from misunderstanding the purpose of the interview and telling stories about specific incidents (that don’t address the research question). There are two ways the researcher can mitigate these risks:

1. The researcher can draft a script (to precede the interview) that will clearly explain to the interviewee that the purpose of the interview is to learn about patterns in general and that the researcher cannot talk about specific events. The researcher should let them know (gently of course) that if the interviewee starts to name names or talk about a specific incident, then it is the researcher’s job to stop them and remind them to stay on track. (The researcher can frame this in several possible ways: “It’s my job to get the facts without getting involved” or “It’s my responsibility to protect everyone’s identity” or “I’m going to need to play a timekeeper role, so please don’t take it personally if I stop you in order to keep us on track.”
2. The researcher should check that the wording of the interview questions is not likely to tempt interviewees to start “telling stories."

 

A survey about a sensitive topic presents the following ethical challenges:

• A researcher needs to be able to provide support for the participant even though the researcher may not be able to respond immediately to extreme distress (possibly creating a situation in which the participant is without support while depressed and perhaps even suicidal). This is particularly true for online surveys in which the participant completes the survey in isolation.
• Offering anonymous participation is a significant advantage of survey format over interview format. However, the drawback is that it makes follow-up impossible. Thus, the researcher needs to articulate a plan for how s/he will manage the dynamic in which follow-up on serious safety issues is not possible. (Many researchers argue that providing “immunity” from punishment is the only way that respondents will be honest about their own illegal or harmful behaviors—but this is only defensible when the researcher is not a mandated reporter and has built a solid enough research design that the benefits outweigh the risks).
• If you decide to do anonymous data collection, it is incredibly important to remind the participant of this fact at the top of the sensitive surveys (particularly with young people so they do not mistakenly perceive that “no one cared” about their responses).