Participation in biobank research
Participation in biobank research is voluntary
Donating samples to a biobank is voluntary. A request to donate samples for biobank research can come in a variety of ways. For example, in population studies a person can receive an invitation letter in the mail. During a hospital visit, a patient can be asked whether he or she would be interested in donating his or her samples, such as a small piece of tissue from a biopsy or excess blood taken at the laboratory visit, to the hospital’s biobank.
The potential sample donors will receive detailed information about biobank research and data privacy issues, after which they can decide whether to donate their samples. Sample donors can also at any time withdraw their consent and prohibit further use of their samples. Samples collected prior to September 1 2013, by hospitals or in research projects, can also be transferred to the biobank. The transfer of old samples requires the assent of the Regional Ethics Committee, as well as the sample donor’s consent.
The sample donor has the right to
- know where the sample taken of him or her is located
- know which studies their sample has been assigned to
- obtain general information about results from the study that the sample was used for
- decide whether to be informed about biobank research findings that may be relevant to his/her own health
- know about the research results and development work if it may have a positive impact on the patient’s own disease
- cancel the consent regarding the use of the sample in a single study or in all studies
- deny the transfer of a previously donated sample to a biobank
Consent and withdrawal of consent
According to the biobank law, each sample donation requires a written consent of the sample donor or of his/her guardian. If a person is willing to donate a sample, he/she receives a consent document to fill out and sign.
The donor may later cancel the consent or restrict the use of the sample at any time without giving any reason. The withdrawal or restriction should be made in writing to the biobank, according to the biobank’s specific instructions.
The withdrawal of consent is documented in the biobank’s consent register, after which the samples and the information will no longer be used.
