Beyond the Signature: Navigating Informed Consent in Qualitative Research

Jane Evered, PhD, RN – Investigator, Department of Family Medicine & Community Health, University of Wisconsin-Madison

Abstract: Over the years, practice and policy regarding informed consent in qualitative research has shifted focus from a moral discourse to a discourse of regulation. This regulatory emphasis is commonly understood to be both “too much and not enough” in terms of the ethical protection of human subjects participating in qualitative research. Respectful, authentic, effective approaches to the ongoing relational negotiation that is the informed consent process must be attentive to the notion that people make decisions regarding their participation in research and understand consent in a socially constructed context. Arguments have been made that the continuous co-production of informed consent in qualitative research should be responsive to the participants’ understandings of the ongoing and continually evolving processes of data collection-contribution. However, less attention has been paid to enhancing the extent to which participants are informed about what will be done with their data after it has been collected and contributed. We argue that particular dimensions of the nature of qualitative research warrant an approach to informed consent that attends to participants’ understanding of how their data will be represented and disseminated. Grounded in the Transactional Model of Communication, we propose practical ways to facilitate (more) informed consent among qualitative research participants. These practical ways of facilitating can help re-infuse moral dimensions into the regulatory research context.

Keywords: informed consent, research ethics, qualitative research