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The BIO-PIN paradigm: 'access to' or 'return of' results?

Nature Reviews Cancer volume 11, page 895 (2011)Cite this article

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With the increasing importance of biobank infrastructures for research, new ways to deal with personal data are being developed. The 'Bio-PIN' as proposed in the recent article by J. J. Nietfeld, Jeremy Sugarman and Jan-Eric Litton (The Bio-PIN: a concept to improve biobanking. Nature Rev. Cancer 11, 303–308 (2011))1 uses genotype identification of biological samples from participants to establish a coding system that guarantees the privacy of the donors of specimens to biobanks. The Bio-PIN exemplifies an important shift in thinking about biobanking: biobanks should no longer return results to donors (which is practically unsustainable for biobanks and might also be undesirable for donors in the long term) but should instead allow donors access to results by providing donors with a means to check the kind of research that has been or will be done with their sample and also the ability to check the (individual) results of this research.

The Bio-PIN contributes to the debate about the governance of biobank infrastructure, but it is also a technique with a central flaw that is connected to the paradigm shift from return of results to access to results. The Bio-PIN is firmly based in the protection of the privacy of donors, but as a consequence the biobank cannot contact the donors: “A biobank using the Bio-PIN system is dependent on the willingness of the depositors to contact the biobank” (Ref. 1). We think that this is undesirable as it is important for biobanks to be able to contact donors — for research purposes, for example — for updates of disease history or for confirmation of information, and for donors themselves — for example, in the case of severely life-threatening but curable incidental findings. In the case of a one-time contact and truly anonymous data this would be impossible; however, in principle, this is all the Bio-PIN allows. Moreover, unless donors have a relationship with the biobank (such as the relationship of patients with their treating physician and the hospital) we find it difficult to believe that donors could be easily evoked to submit additional information to the biobank on their own account.

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References

  1. Nietfeld, J. J., Sugarman, J. & Litton, J. E. The Bio-PIN: a concept to improve biobanking. Nature Rev. Cancer 11, 303–308 (2011).

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  1. Eric Vermeulen, Paul van der Valk, José J. M. Koevoets and Martina C. Cornel are at the VU University Medical Center, VU University Medical Center PO BOX 7057, 1007 MB Amsterdam, The Netherlands.,

    Eric Vermeulen, Paul van der Valk, José J. M. Koevoets & Martina C. Cornel

  2. Marjanka K. Schmidt is at Netherlands Cancer Institute – Antoni van Leeuwenhoek hospital, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands.,

    Marjanka K. Schmidt

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  1. Eric Vermeulen
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  2. Paul van der Valk
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  3. José J. M. Koevoets
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Correspondence to Eric Vermeulen.

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Vermeulen, E., van der Valk, P., Koevoets, J. et al. The BIO-PIN paradigm: 'access to' or 'return of' results?. Nat Rev Cancer 11, 895 (2011). https://doi.org/10.1038/nrc3022-c1

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