Ask the LPE Core is a publication of the Law, Policy and Ethics Core at CIRA. The information reflects ideas and discussion generated in LPE Core Consultations with CIRA-affiliated scientists. If you have a law, policy or ethics question for the Core, contact Amy Smoyer (amy.smoyer@yale.edu) to arrange a consult.

Consultation 1: Hiring Former Study Participants

This first analysis explores the ethical issues that are raised when hiring former study participants.

Question:

I would like to offer paid research internship opportunities to former study participants. I have also considered hiring former participants as study staff. What ethical and human subjects issues should I consider?

Analysis:

Community-Research partnerships are key to creating relevant study questions, protocols, data analysis and dissemination. Hiring members of the population being studied is one way to include community input. Caution should be taken to avoid tokenism by engaging all staff in genuine research tasks and including them as full members of the study team. Hiring community members should also not substitute for other forms of community engagement (e.g. Advisory Boards, focus groups, key informant interviews, active dissemination); no single person can represent an entire group.

Now to your question about creating an internship program for a specific subset of the study population: former study participants. Before making a decision to narrow the recruitment pool in this way, explore your reasons for making this decision. Is there a legitimate research rationale for requiring that interns be former subjects (e.g. very small study population, interns need participant experience in order to undertake assigned tasks, previous participants are community gatekeepers)? Or is the decision to hire participants based on sentiments which do not necessarily further the study's goals (e.g. emotional attachment to individual participants, need to placate guilt about study burden, convenience)?

If there are legitimate reasons for narrowing recruitment efforts to former subjects, or if a former subject presents him/herself as the most qualified candidate for the position in response to a general recruitment effort, there are three critical ethical issues to consider:

1. DUAL RELATIONSHIPS: Reamer (2003) writes that dual relationships "occur when professionals engage with clients or colleagues in more than one relationship, whether social, sexual, religious or business" (p. 121). Hiring a former participant creates a “dual relationship” between this employee and the rest of the study team. To personnel who worked on the project when the individual was a subject, the participant is both "study participant" and "staff." This may create asymmetric distributions of information and power among the study team.
2. CONFIDENTIALITY: Study data include personal information about participants. Even if the data have been de-identified, there may be ways to connect the data to the participant and/or staff who collected or analyzed the data may recall specific responses. In addition, the study's eligibility criteria alone may reveal information about the people who participated (e.g. must have been diagnosed with an STI in the last year to qualify for the study). Knowing personal information about an employee, or staff suspicions that supervisors or colleagues know their personal information, is a violation of the former participant's confidentiality and may affect the dynamics of the research team. Consider, for example, how knowing that an employee has been incarcerated might impact a supervisory relationship.
3. PARTICIPANT INCENTIVES & COERSION: If community members learn that employment and educational opportunities with the study are limited to former study participants, this may create a powerful incentive for participation that has the potential to be coercive. Individuals who enroll in the study and are not selected for an internship or job may feel deceived and misled, especially if their primary reason for participation was the possibility of employment.

The Bottom Line: Proceed with Caution

Hiring former study participants as interns or staff has the potential to create serious ethical dilemmas. The commitment that you made, as a researcher, to maintain the confidentiality of the data they provided when participating in the study, must be vigorously upheld. In addition, it would be detrimental to both the study and the individual staff members, including the former participant(s), to create unmanageable dual relationships. Limiting job opportunities with the study to former participants may also have a coercive effect on individual decisions about whether or not to enroll in the study. However, excluding qualified individuals because they have previously volunteered to participate in the study also raises ethical problems. If study participation precludes subjects from the possibility of employment with the study, or other projects in which study staff are involved, investigators should consider including this information in the consent form.

In short, if there are legitimate research rationale for limiting your internship program to former participants, or if the most qualified person for a staff position was a former participant, there is no ethical reason to categorically exclude these individuals from employment. However, should you choose to hire a former participant, do so with caution. Consider the nature of the data collected from this individual and your ability to protect the confidentiality of these data. If there are concerns about confidentiality and/or dual relationships, consider identifying professional opportunities for study participants on other related grants or projects. Finally, the language in the study's informed consent should make it very clear that participation will not necessarily lead to staff or intern positions.

Additional Resources:

Carlson, L., Rapp, C., & McDiarmid, D. (2001). Hiring Consumer-Providers: Barriers and Alternative Solutions. Community Mental Health Journal, 37(3), 199.

Hecksher, D. (2007). Former Substance Users Working as Counselors. A Dual Relationship. Substance Use & Misuse, 42(8), 1253-1268.

Reamer, F. G. (2003). Boundary Issues in Social Work: Managing Dual Relationships. Social Work, 48(1), 121-133.

Acknowledgements:

The following people contributed to this discussion: Anna Arnold, Trace Kershaw, Kaveh Khoshnood, Robert Levine, Leif Mitchell, Amy Smoyer