Centre for Research Ethics & Bioethics (CRB)

BBMRI-LPC (large prospective cohorts)

Large prospective cohort (LPC) studies are considered the most reliable study design to elucidate causes of human disease, as the design minimizes several major sources of errors in etiological studies and is the only study design that can follow how genes and environment interact over time in the development of human diseases.

The need for collaboration, harmonization and, where possible, standardization becomes vital when the “omics” field is moving to using the LPC-based study design. Sufficiently large study sets of this type can only be achieved by close collaboration between the different large population cohorts in Europe and elsewhere. The project will build a network connecting the established large-scale biobanks to new European biobank initiatives, connecting to relevant European and International organizations.

CRB's role in BBMRI-LPC

We are engaged in the work package providing solutions facilitating fair, transnational access to samples and data to researchers in sorting out the ethical and legal issues regarding transnational access to samples and data.

Funding

EU 7th framework programmeThis project has received funding from the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement no 313010.

Contact

BBMRI-LPC is coordinated by Markus Perola at Helsinki University.

Visit the BBMRI-LPC website

CRB team:

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

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Biobank and registry ethics & law, report