Motivations for data sharing—views of research participants from four European countries: A DIRECT study

Abstract

The purpose of this study was to explore and compare different countries in what motivated research participants' decisions whether to share their de-identified data. We investigated European DIRECT (Diabetes Research on Patient Stratification) research project participants' desire for control over sharing different types of their de-identified data, and with who data could be shared in the future after the project ends. A crosssectional survey was disseminated among DIRECT project participants. The results found that there was a significant association between country and attitudes towards advancing research, protecting privacy, and beliefs about risks and benefits to sharing data. When given the choice to have control, some participants (less than 50% overall) indicated that having control over what data is shared and with whom was important;and control over what data types are shared was less important than respondents deciding who data are shared with. Danish respondents indicated higher odds of desire to control data types shared, and Dutch respondents showed higher odds of desire to control who data will be shared with. Overall, what research participants expect in terms of control over data sharing needs to be considered and aligned with sharing for future research and re-use of data. Our findings show that even with de-identified data, respondents prioritise privacy above all else. This study argues to move research participants from passive participation in biomedical research to considering their opinions about data sharing and control of de-identified biomedical data.

Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

“…Significant association between country and attitudes towards data sharing 34 Protection of privacy 34 Strong approval of abolishing patient consent (76%) 16 Helping future patients (67%) 16 Improving patient care and advancing understanding of treatment risks and side effects 20…”

“…Having control over what data are shared and with whom increased willingness 34 Wanting to know who does research (34%) 16…”

Psychological factors that determine people's willingness‐to‐share genetic data for research

“…According to previous qualitative research, people associated a variety of personal and public benefits with the sharing of genetic data and also had concerns regarding privacy and credibility . Thus, for stakeholders (ie, researchers interested in analysing crowdsourced data, platform providers for data collection), it is important to understand lay‐people's risk and benefit perceptions of data sharing, as this provides them with the tools to promote informed data sharing among interested lay‐people …”

“…[22][23][24] Thus, for stakeholders (ie, researchers interested in analysing crowdsourced data, platform providers for data collection), it is important to understand lay-people's risk and benefit perceptions of data sharing, as this provides them with the tools to promote informed data sharing among interested lay-people. 25 However, in order to perceive risks or benefits, potential data sharers need to be aware of the uses of health and genetic data in medical research and have some knowledge about privacy-related issues. 26,27 Boerwinkel et al 28 distinguished between different types of genetic literacy, such as conceptual knowledge (eg, knowledge of genetic concepts), sociocultural knowledge (ie, knowledge of applications of genetic technologies) and epistemic knowledge (ie, knowledge of meaning of genetic information).…”

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

“…The results of our research are novel in four respects. First, compared to prior research 42 Previous research has demonstrated broad support for data sharing for health research so long as data is de-identified 43 44 and privacy is protected 45 ; both of which are increasingly difficult conditions to guarantee. Participants in this study also expressed concerns about data security and identifiability, but demonstrated a nuanced and sophisticated understanding of data security.…”