Biobanks for Europe - European Commission - Europa

P A T B33The BBMRI (Biological and Biomolecular Resource Infrastructure) 79 Stakeholder’s Forum providesan additional example of what patients’ expectations are regarding biobanks and what patientsthink they can contribute to them. The “Consultation Document” draed by the BBMRI Stakeholder’sForum patient representatives, 80 highlights the more relevant principles laid down in theEuropean and international instruments that cover patient participation in networked biobankingactivities. It also indicates existing examples of good practices to facilitate their implementation.The patient representatives of the Stakeholder’s Forum recommended 3 key principles that shouldgovern the active participation of patients and patient organisations in biobanking activities. Theseare: Inclusion, Engagement and Communication.Translating these key principles into practice involves;1. Inclusion of patients and patient organisations as partners in the research eort, especially inthe areas of communication, advocacy and recruitment (e.g. information to potential donors,preparation of informed consent forms)2. When establishing sample, tissue and databanks the experience, knowledge and expertise ofpatients, families and carers should be considered.3. Listening to patients’ voices/expectations on research needs from their experience from participatingin biobanking as donors.4. Regular, general and reasonable feedback to patients regarding use, sharing and transfer ofsamples.In particular, the patient involvement and inclusion should be extended to ethical aspects suchas: informing Research Ethics Committees (RECs) of patients’ interests; patient rights over theirdonation; access to samples from research groups out of the country; possible new use of existingsamples aer discontinuation of the biobank.In summary, in the light of the handful of successful experiences of patient groups involved in thecreation and management of biobanks, there is now a growing recognition of the importance ofsuch early engagement of patient representatives in biobanks. Nevertheless, to facilitate the activeparticipation of patients and patient organisations in research and biobanking activities, appropriatetraining is necessary and more information should be disseminated as to what patients canconcretely contribute to research and biobanks in particular.79 http://www.bbmri.eu/index.php?option=com_content&view=article&id=52&Itemid=5980 http://www.bbmri.eu/index.php?option=com_content&view=article&id=77&Itemid=66