Big data and the dilemma of innovative knowledge versus threats to personal integrity

The collection of big data, i.e. the integration of personalized databases on various dimensions, including demographic data, consumer preferences, and mobile phone numbers, has important societal and individual benefits. Although it concerns innovative knowledge to serve a public good, it also relates to questions of individual integrity and depends heavily on the willingness of people to share information and to accept a central registration. Recently, many discussions have been reported on the usage of big data, which may make people feel vulnerable. In the present study it is argued that both ethical (consent, confidentiality, access, social value) and psychological dimensions (feelings of threat, trust in public institutions, social identification, normative beliefs) are related to these feelings of vulnerability and individual perceptions on big data, and hence may affect the innovative possibilities of big data. We aim to unravel these dimensions by means of qualitative and quantitative research methods among participants of the LifeLines biobank, a large population study in the Netherlands, and a selection of participants who withdraw from participation in LifeLines. This will be in close collaboration with ERCET (European Research Center for Exascale Technology), a program of IBM and University of Groningen. Based on these data generated in face-to-face interviews and written questionnaires, brainstorm sessions will be held with respondents about innovative ways to stimulate sharing and usage of personal data. Together with different companies, these approaches will be tested within LifeLines, to be able to conclude on how society, and more specific health research and innovation, can benefit from the implementation of these innovative approaches.