The creation of an information standard shifts the boundaries of the private and public between individual donors, biological samples, and data in their becoming visible – to the extent specified by the MIABIS standard – to users of BBMRI-related infrastructure services, researchers, and research communities alike.
Furthermore, the virtual infrastructure for EU biobanks shifts the boundaries of private and public for individual donors, biological samples, and data as these elements become visible for biomedical researchers and research communities, while it also reorganises their mutual relations in line with the MIABIS 'attributes'attributes
The Lausanne branch of the Ludwig Institute for Cancer Research (LICR-LB) performed extensive pre-testing of donor samples and selection of appropriate donors.
In this case, as in that of anonymization, the researchers lack the possibility of relating samples and data to their donors" [ 11, 36].
The ethical review standard specification of the China National Genebank (Shenzhen) [ 38] states that unless samples and data have been delinked from the donor, the donor can withdraw from the study at any time unconditionally.
Britain's UK Biobank, for example, will encrypt the identity of donors, so that only selected users will be able to link samples and data to particular individuals.
For example, samples and data should be coded, so that the identity of the donor is not available to the researcher using the sample.
A key to such investigations is the facilitation of structured access to quality-controlled patient donor samples and data in an ethically appropriate and privacy-compliant manner.
Here, donors can compare their own provided data with the biobanks' aggregated data in real-time, in a protected environment, and furthermore they could be kept posted on results of studies involving their sample and data.
