Is it time to share qualitative research data?

Abstract

Policies by the National Institutes of Health and the National Science Foundation, as well as scandals surrounding failures to reproduce the findings of key studies in psychology, have generated increased calls for sharing research data. Most of these discussions have focused on quantitative, rather than qualitative, research data. This paper examines scientific, ethical, and policy issues surrounding sharing qualitative research data. We consider advantages of sharing data, including enabling verification of findings, promoting new research in an economical manner, supporting research education, and fostering public trust in science. We then examine standard procedures for archiving and sharing data, such as anonymizing data and establishing data use agreements. Finally, we engage a series of concerns with sharing qualitative research data such as the importance of relationships in interpreting data, the risk of re-identifying participants, issues surrounding consent and data ownership, and the burden of data documentation and depositing on researchers. For each concern, we identify options that enable data sharing or describe conditions under which select data might be withheld from a data repository. We conclude by suggesting that the default assumption should be that qualitative data will be shared unless concerns exist that cannot be addressed through standard data depositing practices such as anonymizing data or through data use agreements.

Research Participant Views regarding Qualitative Data Sharing

“…Another participant put it more succinctly: "I just think that my privacy is sacred, because, if certain information was exposed to certain people-I wouldn't say it would put me in danger, but it might-ya know, there's information out there, information I don't want everybody to know, or certain people to know" (Participant 7, female, white, age [30][31][32][33][34][35][36][37][38][39].…”

“…. I'm not sure if they would get the information correct, so I'm not sure if I agree with that one" (Participant 2, female, African American, age [30][31][32][33][34][35][36][37][38][39].…”

“…According to one participant, "I think that they need to have a guideline on what they can and can't do with information" (Participant 5, female, white, age 50-59). Another participant said, "I mean, as long as they're not doing, you know, anything that they're not supposed to do with the research, if they're only using it for that specific purpose, then, no, I don't see a problem" (Participant 2, female, African American, age [30][31][32][33][34][35][36][37][38][39]. Participants emphasized that those requesting the data should meet specific criteria before accessing it (such as having adequate expertise or supervision or maintaining contact with the original researcher to ensure the interpretation of data is appropriate and accurate).…”

“…In that sense, data sharing demonstrates respect for participants by maximizing their contributions while minimizing research burdens. 24 We found no studies in the U.S. that explored research participants' perspectives about sharing their qualitative data. Research in the U.S. and other countries regarding views about sharing quantitative data derived from biospecimens or clinical trials reveal that respondents are generally supportive of sharing their deidentified research data to benefit themselves, their immediate community, the public, or science as a whole.…”

“…T here are a number of benefits to sharing data from various types of research: increasing the transparency of research and enabling the replication of findings, which can foster public trust in science; 1 enabling secondary users to explore new research questions, thereby maximizing the value of data that is often costly and resource intensive to collect; reducing participant burden by using existing data rather than collecting new data; and providing an opportunity for students to learn how to conduct data analysis through examining research questions using real data when they have no funding to gather their own 2…”