Date: Friday, 6/12/2020

Room: Virtual Conference

Daniela Glusberg, Jessie Engel, and Alisú Schoua-Glusberg (RSS)

Ethically conducted surveys give respondents basic pieces of information to make an informed decision about participation. References to data protection (e.g. privacy, confidentiality, data security) and the voluntary nature of participation appear in advance letters and are often restated by interviewers. It is generally understood that by agreeing to participate in a survey, respondents are giving consent to be interviewed. (AAPOR 2005)

In biomedical research, the issue of informed consent has been carefully studied to make sure that research participants understand what they are agreeing to. When they have unclear or misplaced expectations, they may suffer psychological distress (Escobedo et al. 2007) or leave a study before its completion and this has significant implications for the research.

Qualitative research with marginalized populations involves additional considerations. Care must be taken in crafting consent forms to ensure they participants understand them, including those with low education and limited English proficiency.  

As with surveys, consent forms for qualitative research are intended to provide information participants need to make an informed decision about participating. However, these have grown into multipage forms that describe detailed data collection and data protection procedures very much outside of the experience (and the comprehension) of respondents. For multilingual studies, translating complex consent language into other languages adds difficulties.

Aside from language, other marginalized populations such as drug users present added consent issues. Recent studies looking at the opioid epidemic have raised questions about best practices for consenting respondents potentially under the influence of drugs. We will focus on these issues, and on procedures to ensure ethical conduct of research with vulnerable populations. We will discuss strategies to help ensure respondents understand what they are consenting to and their rights as respondents.