In the last two decades, the international biobanking community has come together to harmonize and create international, large-scale research platforms. Through the development of research collaborations, consortia and networks, internationalization of biobanking activities has led to the pooling of samples and data from different countries, for more efficient, significant and precise data. However, current ethical and legal frameworks require that these local/national initiatives be governed by the local/national laws and policies. In particular, the requirements for local REB approval for the data/sample collection, discrepancies in data protection laws and in data and sample sharing cultures continues to create hurdles to the development of such international resources.
The recent emergence of web-based consent and data collection tools, together with the development of self-sampling devices (e.g. spit-kits, finger prick blood tests, etc.), has led to the creation of ‘direct-to-participants’ research activities, in which researchers can now recruit, consent, and collect data and samples from participants located in different countries. Such research activities raise numerous ethical, legal and scientific questions related to ethics approval(s), and the use of mainly cloud-based and IT consent, data/sample collection, and data access and/or sharing tools.
The International Biobanking Summit VI aims to discuss the ethical and legal issues raised by ‘direct-to-participants’ research, and to address its implications for ethics approvals and for the use of IT tools and web-based networks.
The IBS VI will be held as part of the Global Biobank Week (CLICK HERE for details).