what is a biobank?
A biobank is a non for profit organisation whose mission as established by law – Biomedical Research Act 14/2007 – is to safeguard human samples and make them available to researchers in the best possible conditions for carrying out their scientific projects, with the aim of supporting biomedical research.
For this, the Biobank guarantees the highest quality in the processing of samples, as well as in their storage and access; bearing in mind that each biological sample is invaluable.
All Biobank activity pays special attention to protecting the legitimate rights of donors, particularly their privacy.
Why donate my samples or data to a Biobank?
Human samples (and their associated data) are key elements essential for the advancement of scientific knowledge, which in the field of biomedicine, is aimed to improve the diagnosis and treatment of patients. The Biobank is the organisation that provides your sample to researchers and supports your participation in scientific progress, offering you absolute confidentiality and the proper use of your samples while adhering to ethical and legal standards. The CNIO Biobank, specifically, by belonging to an internationally recognised institution of research excellence, offers you the opportunity to participate in research projects at the highest level.
What kind of samples can I donate to the Biobank?
Any biological sample can be donated to CNIO´s Biobank. The Centre directly focuses on cancer research, thus priority will be given to the collection of oncology specimens or any other samples from related processes, whether solid tissues (frozen, fresh or fixed), peripheral blood, bone marrow, other tissues or body fluids (urine, saliva, nails, hair, etc.) or their derivatives (DNA or RNA). Samples donated to the CNIO Biobank have two main sources:
- Excess tissue from diagnosis: once your injury has been removed and the diagnosis completed, part of the excess tissue may be used for research, (always ensuring that there is enough residual tissue available at the hospital to allow for further re-evaluation of the diagnosis if necessary). The CNIO Biobank prefers these types of samples, so there is no extra hassle for you.
- Prospectively collected samples: you may be selected based on certain clinical criteria, after that you will then be invited to donate your sample (generally a small biopsy or peripheral blood). This prospective collection, which is necessary for certain research projects, will always require approval from the Biobank´s external ethics committee, which will assess, amongst other things, the risk / benefit balance to ensure that you will not suffer unnecessarily.
In any case, before adding the sample to the Biobank, you will receive an informed consent document that will specify the terms of the donation. If you agree with the conditions, you must then sign this document empowering the Biobank to guard your sample for its future use in research projects.
What will be the use of my samples or data?
Samples and data managed by the CNIO Biobank will only be used in research projects approved by both an ethics and a scientific committee, which shall ensure that your rights as a donor are respected and the objectives of the proposed research project are ethically appropriate and scientifically relevant. In any case, you can express specific limitations or preferences regarding the use of your samples and data at the time of signing the informed consent, and such limitations shall be recorded in the Biobank and will always be taken into account before any assignment.
If I decide to donate my personal or clinical data to the Biobank, does it mean that all researchers who use my samples will know of my identity? Who will have access to my data?
Donor´s personal identification data are confidential and only the CNIO´s Biobank staff will have access to this information. Samples and clinical data will always be transferred to the researchers anonymously, never allowing anyone to access your personal data other than the Biobank staff.
All personal data will be treated according to legal requirements specified in the Data Protection Law (LOPD); this includes the highest level of protection.
How can I know in which research project my sample is being used?
If you are interested in knowing the research projects that are using your sample or have used it in the past, just let us know. You can contact the CNIO Biobank by email firstname.lastname@example.org or by phone (912 246 900) and we will keep you informed.
Should I expect some benefit from my donation?
Donations are altruistic and donors never receive any compensation for their sample. The only benefit to be expected from it, therefore, is to contribute to the advancement of science.
If I decide not to donate my samples or data to the Biobank, will I see my health care affected?
No. If you choose not to donate your samples to the Biobank, they will be stored in the hospital where they were obtained for diagnostic purposes, but in any case the health care you receive will not be affected by it, either positively or negatively.
Will the biobank staff get in contact with me periodically in the future if I decide to donate my samples?
Once your samples are hosted in the CNIO biobank, in principle, we will not get in contact with you again, unless the Biobank undergoes any change in its policy/activities (i.e. cessation of activity), or in cases where, incidentally, some information relevant to your health comes out as a result of a research study. In that case, the ethics committee in close contact with your health care professionals may decide to contact you, if you have agreed to this on the informed consent. This will always be done for you and for your family´s best interest.
Outside these exceptional circumstances the Biobank organisation and its committees are in place to ensure that your rights are observed and that your samples or data are used properly.
What should I do if I decide not to use my sample or data in research any more, or if I change any of my data?
In case you wish to revoke your consent, or modify any of the data you provided at the time, you must please contact us by email email@example.com or by phone (912 246 900). If you have any other questions regarding the Biobank that we have not covered in this section, please feel free to contact us by email firstname.lastname@example.org).
If you donate your samples to the CNIO Biobank, or to any other biobank, you must know that you are entitled to:
- Revoke your consent to the use of samples or data in research: in this case, biological samples will be made irreversibly anonymous or destroyed, and your data will be removed from the Biobank database. The donors in this case, may not withdraw samples.
- Cancel the use of personal data.
- Access to personal data stored in the Biobank.
- Update your personal data stored in the Biobank.
To exercise any of these rights or to obtain more information, contact us at the following address:
Spanish National Cancer Research Centre – CNIO s
c/ Melchor Fernández Almagro, 3
28029 – MADRID (Spain)
Telephone: +34 912246917