Biobank research and the right to privacy

LØ Ursin - Theoretical medicine and bioethics, 2008 - Springer
… of your personal information by biobank researchers once … does not so much justify a general
right to privacy as it contributes … Nevertheless, the motive for wanting to call privacy a right …

[HTML][HTML] Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study

V Toccaceli, C Fagnani, L Nisticò, C D'Ippolito… - BMC Medical …, 2009 - Springer
… enhance awareness of biobanking activities may contribute, on … , motivation and attitude
towards biobank-based research as well as … to the Italian Law on Personal Data Treatment [14]. …

Pathology databanking and biobanking in The Netherlands, a central role for PALGA, the nationwide histopathology and cytopathology data network and archive

M Casparie, A Tiebosch, G Burger… - Analytical Cellular …, 2007 - content.iospress.com
… to participating pathologists) central archive provides a strong motivation for pathologists to
continue contributing data … population-based health studies in The Netherlands. For instance, …

[HTML][HTML] Public attitudes toward biobanking of human biological material for research purposes: a literature review

J Domaradzki, J Pawlikowski - … environmental research and public health, 2019 - mdpi.com
… to contribute to the common good [6,54,64]. Other important … For example, 66%-88% of the
Dutch population wanted to be … donors are driven by altruistic motives. Another notable finding …

[HTML][HTML] Democratizing health research through data cooperatives

A Blasimme, E Vayena, E Hafen - Philosophy & Technology, 2018 - Springer
… to steer data use according to their motivations, preferences, … a research biobank collecting
samples and data from half a … The industry can contribute to this transformation by meeting …

Public's awareness of biobanks and willingness to participate in biobanking: the moderating role of social value orientation

M Grežo, M Sedlár - Journal of Community Genetics, 2023 - Springer
… biospecimens and personal information to biobanks. The … of prosocial motives and benefits,
such as contributing to a … have different motives for participating, our study suggests that …

[HTML][HTML] Controversies between regulations of research ethics and protection of personal data: informed consent at a cross-road

E Gefenas, J Lekstutiene, V Lukaseviciene… - Medicine, Health Care …, 2022 - Springer
… legal ground for biobanking? What should be the role of … ’s motivation to donate their biological
materials and data to … EG, VL and JL contributed to the main ideas of the study. EG wrote …

[HTML][HTML] Privacy and property in the biobank context

LO Ursin - HEC forum, 2010 - Springer
… restricts access to himself and to personal information, we may say … described their motivation
to take part in terms of a … Biobank participants contribute on the premise that research is …

A systematic literature review of the 'commercialisation effect'on public attitudes towards biobank and genomic data repositories

J Walshe, B Elphinstone, D Nicol… - Public Understanding …, 2024 - journals.sagepub.com
… In a Dutch study that sought to investigate perceptions of … motive of commercial entities
and the desire to contribute to … to provide their personal data for health research are complex, …

Should donors be allowed to give broad consent to future biobank research?

MG Hansson, J Dillner, CR Bartram, JA Carlson… - The lancet …, 2006 - thelancet.com
… for biobank research provided that: personal information … paternity tests, or for helping
immigrant authorities to identify the … in the new Norwegian law on health research, or by the action …