The ethical issues of data sharing in qualitative research have received considerable attention recently. Research data is a building block for scientific knowledge. To fit into the concept of open science research must be transparent, meaning that all research data should be publicly available. However, this becomes problematic when “data” means full transcripts from long interviews conducted with study participants, not just numerical data from a survey. Data sharing involves ethical challenges of how to make it accessible, and to whom, without compromising the trust or anonymity of participants.
Sharing personal information vs. sharing research data
- Sharing personal information: participants provide their personal stories and experiences to researchers during interviews as part of the data collection for a particular research project.
- Sharing research data: in line with the principles of open science, scientists can publish the collected data in repositories or share it with the wider scientific community after the research is completed. This data sharing ensures transparency and allows other scientists to reuse the data for new studies and analyses.
Gabriela Gore-Gorszewska from INPSY published a study in which she explored the challenges of data sharing in qualitative health psychology research. She conducted in-depth interviews with middle-aged and older adults on topics related to their sexuality. The research group included 70 women and men aged 50-82 years.
What concerns might people have about sharing research data?
According to the research, several participants expressed concerns about what will happen to the information they provide and who will have access to it, and therefore were reluctant to consent for data sharing. Should this be obligatory, they would withdraw from the interview, hindering the recruitment and making the research process more challenging or even impossible to conclude.
The author writes that people may be reluctant to share personal information, especially when questions are asked about sensitive topics. Participants may deny, for example, if they come from specific, closed or small communities or if the topic of interview is so specific, that disclosure could easily lead to recognition (for example very rare illness). Even though some participants are motivated to contribute to scientific progress and consider it important to talk about the topic, they mostly approach open data sharing with caution.
In-depth interviews help to gain deeper insights but carry a greater risk of identifying participants, because longer life histories, with greater level of details, are often collected. Sometimes simply deleting basic identifying characteristics such as name or address is not enough to avoid recognition. Anonymisation therefore poses a major challenge.
Respondents may also be concerned about the misuse of publicly available data that could negatively affect their community or personal lives and security. They may be concerned, for example, that their individual stories will be misinterpreted or taken out of context, which may lead to a distorted understanding of the shared experiences. Additionally, publicly available data could be seized upon by the media because of the attractiveness of the topic and abused unethically to increase popularity of a media-content creator.
Informed consent is another challenge. Some participants need a detailed explanation of what data sharing entails. Participants need to be informed about where the data will be shared, who will have access to it and under what conditions. They also must be given an option to accept or deny it. The study agrees with the idea that participants can modify or withdraw consent after the interview. This approach, while more challenging, is also more ethical.
So how to share data ethically?
Gabriela Gore-Gorszewska recommends applying the following strategies when sharing qualitative data:
- To maintain transparency, she suggests that sharing only coded responses but not full interview transcripts may be a more sensible option, as it reduces the risk of revealing the identity of participants.
- If someone outside of the primary research wants to reuse the collected data, the original researcher should verify the applicant's qualifications, review the shared data, provide contextual information, and ensure that the data is treated with respect.
These strategies are in line with the requirement of open science transparency, but at the same time seek to protect the data sufficiently and fulfil the ethical obligations to participants. Data sharing in qualitative health research always requires a careful weighing of potential benefits and costs.
Recommendend citation
Gore-Gorszewska G. (2024). “I’m telling you my story, not publishing a blog”: Considerations and suggestions on data sharing in qualitative health psychology research on sensitive topics. Journal of Health Psychology, 29(7), 665-673. doi:10.1177/13591053241239109
