Use and exchange of data and samples: General principles

  • It should be recognised that Biobanks are distinct from collections of biological material in that their samples are associated with personalised data. A sample collection is mostly set up for a specific purpose or objective and is not dynamic in the sense of up-dating information on the research volunteers concerned. Both are nevertheless governed by the same general rules [see 50, Article 17]
  • For thorough utilization of the scientific potential of biobanks, access should be granted to as many research workers as possible.
  • Researchers who have contributed preliminary work of their own to the establishment of a biobank should be accorded priority of use for a certain period.
  • Although open access is the principle, this should be decided on a case by case basis. All research projects using stored biological material and data should be subjected to scientific and ethical review see Guideline 12.

Relevant documents

[ 50 ] Recommendation Rec(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin
[ 3 ] Biobanks for research
[ 8 ] Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services
[ 4 ] Universal Declaration on the Human Genome and Human Rights
[ 9 ] Proposal for an instrument on the use of archived human biological materials in biomedical research
[ 2 ] Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research
[ 54 ] Draft Report on Collection, Treatment, Storage and Use of Genetic Data