Why should I sign a consent?
Contributing to research that produces results can help you and other people in the future. This because one gains more knowledge about novel and unsolved problems in medicine.
Where can I get more information?
You can always contact Biobank1. In addition will also project managers for different project using Biobank1-facilities provide necessary information about their project.
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 are 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 others may be supplied, while the material stored in Biobank1 is 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 are 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.
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.