Developing a user interface design to foster trust and maximize consent for data donation in scientific research

Abstract

Through data donation, research participants can voluntarily donate personal data for research purposes. Recent data protection laws, such as GDPR, give the citizens right of access to data stored about them, making data donation in research more relevant than ever. Social scientists at Utrecht University propose to let research participants donate partial data download packages (DDPs) to scientific research projects as a new form of data collection. In this research we present the design process of a prototype for a data donation user interface (UI). For data donation to be a viable option for data collection, participants have to trust that their data is handled fairly and responsibly. To encourage trust, a data donation UI has to present the data pipeline and anonymization of the data in a transparent way. Although anonymization is explained in theory, there is a gap in knowledge on how to communicate anonymization of data to regular users. To address this we applied construal level theory to explain the data handling, and investigated the impact it had on users' willingness, trust and consent level. A within-subjects experiment was performed where participants were asked to donate location data from Google to a fictional research study through the data donation website. Although no significant results were found, there was an overall high trust in the data donation system and a high willingness to donate data. Qualitative analysis revealed that explaining the anonymization was important to participants, and that a majority of the participants would be willing to donate data through a data donation website in the future. Furthermore, participants are eager to contribute to research, and future data donation systems should communicate the data pipeline, provide information about the research project and the impact of participants' contribution to research.