Who owns the samples in BBMRI.se?
The custodian of a sample collection has the right of disposition of the samples, also when the custodian himself/herself does not store the samples. BBMRI.se is a facility that offers storage and analysis services to the custodians of sample collections. BBMRI.se will also provide support in related areas, such as data management and study design.
Do you have to use BBMRI.se?
No, it is up to the custodian of a sample collection if he/she wants to use the services of BBMRI.se or not.
In what way will researchers benefit from using BBMRI.se?
Modern medical research is increasingly using international collaboration, where it is a requirement that samples and related information are collected using international standards that make collaborative studies based on many different collections world-wide possible. Both peer-reviewed journals and funding agencies have increasing demands on documentation of the quality of materials used in science. Such documentation should be in agreement with internationally recognized quality standards.
BBMRI.se is pursuing an active and internationally established research & development activity within all the major areas where cutting edge competence is needed for successful and cost-efficient biobanking: ethics, quality assurance, standards, sample management, sample refinement, automation and logistics, sample analysis, data management, registry linkages, accessibility and biostatistics. Development of internationally competitive tools and knowledge would be very difficult and costly for individual universities or research groups.
I am a scientist who intends to collect samples. Can I use the services of BBMRI.se for this?
As BBMRI.se does not have unlimited resources, we are currently only able to provide services to sample collections that are of national interest (e.g. sample collections that are large-scale and/or nation-wide). Please contact us with your request info@bbmri.se.
Are there any constraints that a scientist using BBMRI.se biobanking facilities has to conform to?
Samples and data must be collected in a standardized manner and the sample collection has to conform to fundamental requirements on quality and accessibility. BBMRI.se is happy to assist on these issues.
The customer must also be able to pay the fee for the services. The price list has yet to be determined, but the large scale of our operations and the basic infrastructural funding to BBMRI.se will, however, result in low prices.
How is the integrity of the sample donor protected?
Current legislation provides a good protection of the personal integrity, both through the Biobanks Act (2002:297), the Patient Data Act (2008:355) and the Personal Data Act (1998:204). All samples are coded. No research results will be linked to any particular individual.
What is the procedure for a researcher wanting access to samples?
All custodians of sample collections who use BBMRI.se are required to participate in the Swedish Research Council/BBMRI.se Biobank Catalogue, where instructions on how to make sample requests can be found.
What is the procedure for evaluation of a sample request?
A custodian of a sample collection who uses BBMRI.se will make a commitment for accessibility, which means that applications for access must be judiciously evaluated and that any restrictions in accessibility can only be made if motivated by the quality of the research project, the sample quality, available sample volumes or ethical and legal issues.
What is the point in collecting samples if you should share them with other researchers?
To be useful for others, a sample collection must be properly designed, quality assured, well-managed and actively made accessible. Whether the collection has been useful for high quality research by many researchers will be a major evaluation criteria for sample collections – and hence also a merit for the custodian of the sample collection.
From a medical-ethical point of view, we can assume that the custodian of the sample collection desires the samples to be used in the manner that is most beneficial for the patients.