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
This 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.
CRB team:
- Mats G. Hansson, Professor of Biomedical Ethics
- Anna-Sara Lind, Associate Professor of Public Law
- Jane Reichel, Professor of Administrative Law
- Jennifer Viberg, BSc, MA, PhD Student
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
Privacy in health care and research
Linnea Wickström Östervall explores peoples preferences on informational privacy in health care and register data among patients and the public.
Storing biobank data
BibankCloud is a 7th framework programme that aims to build the first open and viable platform-as-a-service (PaaS) for storage and analysis of digitized genomic data. CRB have been working with the ethical and legal issues.
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.
