R. (Reinder) Broekstra

Reinder Broekstra conducts research into ethical, legal and (psycho)social issues of innovative Information Communication Technologies. His research interests focus on the implications of innovations, particularly with development and application complex data repository or analyses. For example, the implications of consent, communication of findings, and other criteria for data repository in personal health records.

His research during his PhD investigated factors affecting willingness to contribute (persona data) to large-scale, centralized data repositories for scientific (biomedical) research, specifically biobanks.

Amongst other projects during his brief non-academic research career, he investigated the implications of introducing a mobile app for banking to the clients of a renowned bank in the Netherlands.

His key interests and expertise are in topics related to participation/non-participation in or willingness/unwillingness to contribute data for various purposes, especially in the medical field.

Consent, communication of findings, and other criteria for Personal Health Records and (genomic) biobanks 2020 - present

The strive to continuously tailor research and care (also) based on genetic data requires research on the challenges and opportunities the new data landscape might bring for professionals as well as citizens being patient and non-patient. The theme of this project is investigation of ethical, legal, and psychosocial issues in local, national, and international operating biobanks, in particular issues regarding consent and communication of genetic findings, with the aim of informing researchers, organisations of data repositories, and citizens.

This project will consider several [overlapping] issues in genetic medicine, starting within the setting of genomic biobanks[1]. It will focus on conducting multiple scientific studies and their reports in scientific journals, including a conceptual paper about current and upcoming ethical, legal and psychosocial issues in genomics:

• Consent and confidentiality;
• Incidental, additional and uncertain findings of genomic research;
• How research and clinical ventures overlap in genomics, or indeed are alloyed together, and what issues this raises.

Big data and the dilemma of innovative knowledge versus threats to personal integrity 2016 - 2020

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.