Patients

It is clear that biobanking is all about the patient. The patient provides personal information and biomaterial. With this donation she/he contributes to the biobank, which makes new scientific research possible. This scientific research can yield new knowledge about the disease from which the patient is suffering. This knowledge may come too late for this patient, but with his/her donation the patient hopes to contribute to the development of diagnostics, new successful treatments, better prognosis and more effective prevention in the near future.

Film about the Radboud Biobank

The patient has a permanent voice
The Radboud Biobank strives to have the patient's interests, after handing over biomaterial and providing clinical data, permanently protected by their representatives. For this reason, a prominent place in the Advisory Council, the role of chairperson, has been reserved for the patient representative. Disease specific foundations and societies are already involved in departmental research and will remain so.  There are plans for an internet portal for donors to the Radboud Biobank and lay people are represented in the Committee on Research involving Human Subjects. With these measures the interests of the patient receives a permanent, authoritative voice in the Radboud Biobank.

Recent research shows that patients are more than willing to participate in biobanking. In a number of cases patients have taken the initiative to set up a successful biobank. Dr. Cees Smit, former member of the Board of Directors of the Society for Cooperative Parent and Patient Organisations (VSOP), chairman of the Radboud Biobank Advisory Council, and actively involved internationally in biobanks as a patient representative, wrote in a medical journal: "Patients with rare disorders see the importance of collecting biomaterial and internet is enhancing this process. They start their own collections of biomaterial, seek researchers and raise funds for research." Legal and ethical issues involved in creating a biobank are of less importance for them, Smit says: "Legal and ethical issues are taken into consideration, and if there is cooperation with an academic centre, the research will be tested according to the obligations there." This however does not mean that patients are not concerned about the possible disadvantages of biobanking: "Naturally, informed consent has to be well organised, of course patient privacy has to be protected, but this should not impede research; after all, research is also of great importance for the patient." (Medisch Contact, 2010, (23), p. 1042-1045)