To the Editor:
Nature Medicine recently drew attention to an issue of great concern: the underuse of biobank samples by researchers around the world (Nat. Med. 19, 253, 2013). As the journal's news story describes, the lack of engagement by scientists in the biobanking system is clearly a problem. But so is the lack of a basic understanding by the general public about how such repositories help advance medical research.
Most people simply do not know what a biospecimen is, let alone what uses could be made of such sample donations (J. Natl. Cancer Inst. Monogr. 2011, 41–42, 2011). Even among informed participants in medical research, few donors take an interest in what is done with their tissues. This is not the case in other areas of health research, where patient groups take a very active role in defining needs and priorities in research funding. In contrast, it seems the public underestimates the relevance that biobanks have in clinical practice and research.
The Genetic Alliance represents a good example in that direction, with a leading role as a general advocacy group for genetic studies. However, patient partnership and a relational approach toward patients and research subjects should be a regular concern for all biobank-related studies.
It is time to engage patients as partners in the biobanking process. If we want long-term support for biorepositories, we need a change in public perception. Biobanks should not be viewed as a danger for donors but rather as a need for public health (Eur. J. Human. Genet. 17, 1544–1549, 2009). Public involvement, in addition to better scientific engagement, should facilitate a more efficient and effective biobanking system.
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Paradiso, A., Hansson, M. Finding ways to improve the use of biobanks. Nat Med 19, 815 (2013). https://doi.org/10.1038/nm.3256
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DOI: https://doi.org/10.1038/nm.3256
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