Area of work: Ethical Legal Social Issues
Role: Full Partner
Address: Centre for Research Ethics & Bioethics, Box 564, Uppsala, SE-751 22, Sweden
Role in RD-Connect:
The Centre for Research Ethics & Bioethics (CRB) at Uppsala University leads the work on ethical, legal and social issues (ELSI) with the following objectives:
1) Develop best ethical practices for balancing patient-related interests associated with rare disease research using databases/registries, biobanks and omics databases in global networks of clinicians and researchers.
2) Engage with relevant stakeholders, e.g. patient organizations and patient groups, clinical and research networks, legislators and policymakers, pharma industry.
3) Develop a proposal for an expedient regulatory framework for linking of medical and personal data related to rare diseases on a European and global level.
The Centre for Research Ethics & Bioethics (CRB) at Uppsala University is an inter-faculty centre with 25 senior and junior researchers representing philosophy, ethics, law, medicine, psychology, social sciences and social pharmacy. Research topics such as patient autonomy, genetic risk, biobanks, privacy, neuroethics and research governance are being addressed with a strong publication record in high quality journals and monograph series. In the international evaluation of all research at Uppsala University 2011 CRB was graded with “Top Quality” and world leading.