Donors
What is the implication of donating research material to Biobank1® ?
Biobank1® is the research biobank of the Regional Health Authority of Central Norway. Its mission is to collect biological samples, such as, for example: blood, urine, tissue, etc., from patients in the hospitals of Central Norway, and to store this material together with information about the donor. The material and information shall only be used in medical research in order to improve prevention, diagnosis and treatment of disease. In general, patients are asked for consent to such use of biological material and personal information.
If you are asked to donate material to Biobank1, you will receive an information leaflet and a consent form. If you sign the form, some additional tests may be performed simultaneously with the ordinary diagnostic or therapeutic procedures. The collected information and results of analyzes of the biological material is stored in the health registry Biobank1, where it will be kept as long as we think it may be useful for future medical research. The Data Inspectorate has given Biobank1 concession to store and use health data for research purposes. The materials and information about you will be anonymized so that no research data can be linked to you as a person. Anyone who handles biological material and health information is legally compelled to observe strict confidentiality. In some cases it may be necessary to transfer some of the material to collaborating researchers in other countries.
Biological material and health information may only be used in projects that have been approved by the Regional Committee for Medical and Health Research Ethics (REK), in accordance with the Health Research Act and other Norwegian Law.
Why do we need biobanks?
Throughout history, patients and healthy individuals have let information about their own health and disease to go into the large, common knowledge base called scientific medicine. In building this vast array of information, analyses of biological samples, such as blood samples, urine, tissue, etc., played an important part. Everybody has benefited from the contributions made by previous generations, and have in return entered information about their own health in order to improve care for future generations. We can say that modern medicine is the result of a major international volunteer project that has been going on for centuries, where many have a small contribution – and we all have retrieved big advantages.
Information hidden in biological samples can provide answers to many of the questions that underlie the further development of medicine. There is reason to believe that access to biological samples of high quality, from healthy people and from patients, will be of crucial importance. The lack of such specimens may be the factor limiting the advancement of research – and possibly delaying further medical improvement.
Under Norwegian law, biological samples to be used for research must be part of an approved research biobank. Therefore, the Regional Health Authority of Central Norway established Biobank1, which by professionalizing the collection, storage and management of research samples will help to increase the medical research activity in the region and to raise the quality of the research.
FAQs
Why should I sign a consent?
Where can I get more information?
How can I contribute to research?
In case of illness you can be requested by staff at the hospital to contribute to research by signing a consent.
How will samples be used?
The samples are registered and stored in a biobank. Scientists who are starting a new project can contact Biobank1 to request samples for their purpose.
How do I know that the samples will be used for their intended purpose?
Researchers must apply to the Regional Committee for Medical Research Ethics (REK) before they can start a research project. They state what they will be studying, and this must conform to the guidelines of Biobank1 and provisions of the consent form. You can also read about published research results on these pages so you can be updated on what is going on.
How is privacy maintained?
Biobank1 is legally regulated by including the Personal Data Act and the Health Research Act. Anyone who treats biological material and associated data are bound to secrecy and all personal data is treated confidentially. This is controlled by the Inspectorate. The samples are pseudonymised and registered by serial number.
Will Biobank1 store the samples forever?
The samples will be stored in Biobank1, and they will be stored as long as there is something left of the material.
How old must you be to contribute?
There is no absolute requirement to age. If a patient is under 16 years, parents, guardians or similar can sign the consent on their behalf.
Is this the same as beeing an organ donor?
No, it’s not the same as being an organ donor. You give permission to use biological samples for research purposes.
Is this the same as beeing a blood donor?
No, the donor gives blood that will help other patients, while the material stored in Biobank1 will be used for research.
Do I have to sign consent each time I give samples?
You will most likely be asked to contribute because it is an ongoing research project regarding your illness. If it’s necessary to take additional samples to another project later, you will be asked again.
Can I withdraw my consent?
Yes. You can always withdraw your consent (written or oral) without stating a specific reason. If desired, the samples will be removed from Biobank1 and destructed. If the data and samples have already been used in research, consent can not be withdrawn. Your decision will not affect your further treatment.
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Will the research benefit me directly?
The research will benefit future generations rather than you directly.
Questions about “individual findings“
Usually scientific research results are not provided back at individual level. In exceptional cases, it could by chance be discovered something which may be of direct relevance to your personal health or the health of your family. These so-called “individual findings” will be reported to the hospital where you are or were treated. Your doctor will discuss this with you if it is determined that the findings are directly relevant to the health of you or your family, and can be treated or be offset by measures.