[HTML][HTML] Motives of contributing personal data for health research:(non-) participation in a Dutch biobank

R Broekstra, ELM Maeckelberghe, JL Aris-Meijer… - Bmc medical ethics, 2020 - Springer
… the fluidity of motives centring on helping others in decisions to participate in large-scale,
centralized health research data repositories. Efforts to improve participation should focus on …

[HTML][HTML] Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data

R Broekstra, JL Aris-Meijer… - European Journal of …, 2022 - nature.com
motives for participation (eg, ‘I contribute to health care by … their personal data to be linked
with a population-based biobank… the Dutch societal context, population-based biobanking and …

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

N Shah, V Coathup, H Teare, I Forgie… - European Journal of …, 2019 - nature.com
… -EU study, willingness to participate in biobank research was … to control data types shared,
and Dutch respondents showed … Contributing to the data sharing governance literature, this …

[HTML][HTML] Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands

R Broekstra, J Aris-Meijer, E Maeckelberghe… - European Journal of …, 2021 - nature.com
… on voluntary contributions of personal data. We aimed to … to contribute insights into (non-)participation
in biobanking by … to participate or refuse participation, regardless of the motives for …

Encouraging participation and transparency in biobank research

K Spector-Bagdady, RG De Vries, MG Gornick… - Health …, 2018 - healthaffairs.org
… an ethical obligation to participate in health research” (with the … for a specific research
project or being asked to contribute to a … limitations of anticipating future goals and motivations. …

[HTML][HTML] Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany

G Richter, C Borzikowsky, W Lesch… - European Journal of …, 2021 - nature.com
… Moreover, in the context of biobanking, research institutions in … , we hope to be able to
contribute further to the exploration of … motivation to give, broad consent for healthcare-embedded …

Biobank research: reporting results to individual participants

J Bovenberg, S Gevers, T Meulenkamp… - … Journal of Health Law, 2009 - brill.com
… They were mainly recruited via the Royal Netherlands Academy … is their willingness to
contribute to a biobank: people who … information could serve as a motivation for their participation

Values of trust and participation in scientific data repositories

R Broekstra - 2021 - research.rug.nl
… or do not contribute to a Dutch population-based biobank as an … fluidity of motives centering
on helping others in decisions to … Motives of contributing personal data for health research: (…

'Sick and tired': Patients reported reasons for not participating in clinical psychiatric research

L Bixo, JL Cunningham, L Ekselius, C Öster… - Health …, 2021 - Wiley Online Library
… to participate in clinical research, including biobanking, and to … clinic to participate in UPP
by contributing data and biological … in a self‐management intervention in the Netherlands differ …

[PDF][PDF] Private individuals as collectors of their own data for biobank research

L Eijdems, M Boeckhout, G Zielhuis - … We Ensure That Self-Measured Data … - elsi.health-ri.nl
… which contribute to the usability of the self-measured data … where the individual (whose
personal data is involved) gives … In the Netherlands we see more and more initiatives in which …