Biobanking in health care: evolution and future directions

L Coppola, A Cianflone, AM Grimaldi… - Journal of translational …, 2019 - Springer
Background The aim of the present review is to discuss how the promising field of
biobanking can support health care research strategies. As the concept has evolved over …

Future-proofing biobanks' governance

F Gille, E Vayena, A Blasimme - European Journal of Human Genetics, 2020 - nature.com
Good biobank governance implies—at a minimum—transparency and accountability and
the implementation of oversight mechanisms. While the biobanking community is in general …

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
Making routine clinical-care-data available for medical research requires adequate consent
to legitimize use and exchange. While, public interest in supporting medical research is …

[HTML][HTML] Sharing data for future research'engaging participants' views about data governance beyond the original project: a DIRECT Study

N Shah, V Coathup, H Teare, I Forgie, GN Giordano… - Genetics in …, 2019 - Elsevier
Purpose Biomedical data governance strategies should ensure that data are collected,
stored, and used ethically and lawfully. However, research participants' preferences for how …

Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies

E Pavlenko, D Strech, H Langhof - BMC medical informatics and decision …, 2020 - Springer
Background The promises of improved health care and health research through data-
intensive applications rely on a growing amount of health data. At the core of large-scale …

Stakeholder engagement to ensure the sustainability of biobanks: a survey of potential users of biobank services

C Klingler, M von Jagwitz-Biegnitz, R Baber… - European Journal of …, 2022 - nature.com
Biobanks are important infrastructures facilitating biomedical research. After a decade of
rolling out such infrastructures, a shift in attention to the sustainability of biobanks could be …

Raising to the challenge: building a federated biobank to accelerate translational research—The University Biobank Limburg

L Linsen, K Vanhees, E Vanoppen, K Ulenaers… - Frontiers in …, 2019 - frontiersin.org
Irreproducibility of research results is one of the major contributing factors to the failure of
translating basic research results into tangible bedside progress. To address this, the …

Current practices for access, compensation, and prioritization in biobanks. Results from an interview study

H Langhof, H Kahrass, T Illig, R Jahns… - European Journal of …, 2018 - nature.com
Human biological materials and related data stored in biobanks are valuable resources for
biomedical research. Transparent, effective, and efficient governance structures and …

Practice evaluation of biobank ethics and governance: current needs and future perspectives

H Langhof, J Schwietering, D Strech - Journal of medical genetics, 2019 - jmg.bmj.com
Background Biobank research faces many ethical challenges. Ethics research aims to
develop standards for governance to meet these challenges by elaborating overarching …

Ethical publication of research on genetics and genomics of biological material: guidelines and recommendations

ME D'Amato, M Bodner, JM Butler, L Gusmão… - Forensic Science …, 2020 - Elsevier
Abstract Forensic Science International: Genetics and Forensic Science International:
Reports communicate research on a variety of biological materials using genetics and …