Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

Area of Science:

• Qualitative research methodology
• Participant data sharing
• Informed consent in research

Background:

• Increasing expectations for data sharing in research studies.
• Limited understanding of participant perspectives on data sharing, especially in qualitative research.
• Need to explore willingness, understanding, and motivations for data sharing among participants.

Purpose of the Study:

• To investigate research participants' willingness to share data.
• To assess participants' understanding of the concept of data sharing.
• To identify participant motivations for agreeing or declining data sharing.

Main Methods:

• Conducted interviews with 64 cisgender women as part of a larger qualitative study on abortion reporting.
• Obtained consent for sharing de-identified data.
• Asked participants to reflect on their motivations for data sharing decisions.

Main Results:

• The vast majority of participants consented to data sharing.
• Helping others was a primary motivation for participants agreeing to share data.
• A substantial number of participants demonstrated limited understanding of 'data sharing'.

Conclusions:

• Participant willingness to share de-identified qualitative data is high, driven by altruistic motivations.
• Limited participant understanding of data sharing poses a challenge to fully informed consent.
• Further research is needed to enhance participant comprehension of data sharing practices.