Description of the Research
What are the research protection ethics of contemporary research participants? There are few answers to this question. However, to fully honor the principle of “respect for persons,” human protections programs should engage community opinion. Some have called this an “evidence-based and participant-centered” approach to protections (McDonald, Cox, and Townsend 2014).
As part of a quality improvement initiative and larger research project, focus groups were conducted to explore participants’ attitudes toward research participation. The findings for this poster come from specific questions exploring research protection policies and programs. Five focus groups, including 24 adult participants total, were conducted. Selection criteria included having participated in only non-clinical (biomedical and/or social scientific) research at a single specified large university in the five years prior to the focus groups. Participants knew or assumed, as well as desired, there to be ethical oversight of investigators, but they showed only a vague understanding of the protections actually afforded them. We found, nonetheless, that research participants and human protections programs share similar ethical principles. Both generally agree on what it means to have, adopting the words of one research participant, “a real super ethical super moral perspective.”
The poster identifies four ethical principles or expectations for human protection programs commonly vocalized in the focus groups: (1) Programs should ensure participant safety and assess risk, (2) ensure participant confidentiality/privacy; (3) ensure investigator compliance through post-approval activities; and (4) ensure participants are treated with respect. The latter included ensuring the autonomy of subjects and that the research has scientific merit so the participant’s time and altruism in volunteering is respected. The poster provides quotations illustrating these themes.
Participants were often unclear as to the definitions and applications of their ethics, with the exception of scientific merit: human protections programs should only allow research to be conducted if the design is appropriate for the scientific question and, more importantly, that the question is one that serves a scientific and/or public good.
Limitations/Future Studies
Some limitations of this study regard its small sample size and its composition, such as only including experienced participants from a single university. Future studies should probe more deeply into how participants define and apply their own principles for human protection, which may uncover differences among participants and between participants and human protection programs. The poster will provide more complete demographic information of the participants, future research questions, and, as space allows, both methodological and sociological explanations of our findings.