Biobanking from the patient’s perspective
Bio banks are well-organized resources comprising biological samples and associated information that are accessible to scientific investigation (75). Across Europe millions of samples are held in different types of collections.
Biobanks differ in:
- Purpose: research, therapeutic or diagnostic;
- Regulatory Framework: explicit law, a set of regulations or best practice protocols;
- Mission goals: gene mapping, drug development, service institution for research teams;
- Material: blood, cancer tissue, tissue slides, bacterial strains, therapeutic substances, DNA.
And stakeholders that are involved in upholding them:
- The pharmaceutical industry;
- Research groups;
- Patient organisations.
Biobanking as such is thus not a straight forward process; each particular stakeholder translates its Biobanking activities differently. Therefore the practice of Biobanking should be surveyed against the background of the Biobanking institution and the particular context in which it is embedded.
This is no different for Biobanks that have been set up by patient organisations themselves or by private institutions to directly benefit patients and parents of sick children. In general the degree of involvement of patient organisations can range from informing their members of the existence of the biobank to governing an entire biobank (76).
An example is the case of Genethon DNA and Cell Bank which is driven by the patient organisation AFM. AFM decided to become active in genetic research in the 1980’s to help find a cure for neuromuscular diseases (16). The AFM is said to be born from a new generation of patients and patient’s relatives who have decided to take their destiny in and to put off resistance to the disease on all fronts. Their involvement in biomedical and genetic research is just another step to find a cure for rare disease patients (AFM mission statement). As Biobanking was and is seen as an important tool to drive genetic research and so AFM founded the Genethon DNA and Cell bank in the 1990’s. Until date the AFM still has retained contained complete control over the biobank, as the decision making power is held by the patient organisation, whilst up keeping a tight partnership with the involved scientists (76).
Another example of the patient organisation’s power in Biobanking is that of the American Genetic Alliance Biobank that was set up in 2003 by the Genetic Alliance. The biobank is based on the organisational strategies of the PXE International, an advocacy group set up by two parents whose children were diagnosed with the incurable condition PXE.
The pare set up a biobank to be able to influence research by being the ones who kept the essential information that was needed to perform the research. From there, the pare helped discover the gene for PXE by raising the funds for and performing the research into the genetic background of the condition (65).
Taking both of these examples into account patient involvement in Biobanking can and is a powerful tool to actively influence therapy development. The model is most obviously suited for the rare diseases for which in most cases the underlying biological mechanism is not known and every step closer to therapy is welcomed with open arms. However this model, as more and more information on “frequent” medical conditions is being sought for, may also be of some value for the more common conditions. As more and more biobanks will rise in the near future so will the number of patient advocacy groups that get involved in Biobanking. This role will not come naturally and will need support.
In conclusion: Patient organisations have an important role in bio-banking. They can raise awareness about the usefulness of bio-banks. But there is a need to educate patient organisations in how to start and structure a bio-bank (77).