BBMRI-NL’s ELSI Centre of Expertise contributes to the development of ethically and socially responsible forms of biobanking by identifying, articulating and addressing ethical and social concerns relevant to biomedical research infrastructures, by providing support to biobanking research and infrastructures in, as well as by contributing to the development of shared policies and approaches.
The Centre is available for consultation on all things relating to ethical, legal and social issues, including research and donor participation. Don’t hesitate to get in touch to discuss your concerns and needs.
AVG Register, DPIA & Compliance Applicatie voor Verwerkingen van Persoonsgegevens voor Wetenschappelijk Onderzoek – deze applicatie is door BBMRI-NL ontwikkeld met het oog op de naleving van de Algemene Verordening Gegevensbescherming (AVG).
Guidance for the detection, management and communication of incidental findings – to support researchers, biobank managers and ethics committees in decision-making and policy development.
Legal WIKI – offers information on legal procedures (cross border), best practices, forms and other useful info for biobanking professionals across Europe.
MyBiobankApp – is an online portal tool that biobanks can use to keep their participants informed, and to gain information from them.
Patient and Public Advisory Council – Involving citizens and patients in biomedical research and research infrastructures. In Dutch: Maatschappelijke Adviesraad Biobankonderzoek – Publiek debat en advies over thema’s en projecten rond mensgebonden (biobank)onderzoek.
ELSI Expert platform – set up by BBMRI-NL and Federa-COREON, a stage and network for debate and reflection on ethical, legal and societal issues and concerns.
Health Registry Linkage Code – establishes a mechanism for joint review by medical-ethical review boards of researchers’ requests to link their data across multiple registries and biobanks.
BioLink – facilitates existing biobanks’ and registries’ willingness to link and share data
Biobanken.nl (in Dutch) – publieke website over biobanken op initiatief van BBMRI-NL, Parelsnoer, LifeLines, Federa en PALGA.
Code of Conduct – Dutch standard for the use of human tissue for scientific research.
The donor as partner – sums up the methods and levels of patient participation in the governance of biobanks
Privacy Impact Assessment (PIA) App (in development)
27 October 2017