‘Biohoarding’: treasures not seen, stories not told

This article raises the concern that biobanks are failing to realize the expected research and health service outcomes. Rather than biobanking, we have been engaging in ‘biohoarding’, where building a quantifiable collection of tissue samples is the primary basis of the bio-resource. The root cause of ‘biohoarding’ is an ideological and motivational confusion as to the purpose for collecting the tissue in the first place. We have lost sight of the knowledge gain that biobanks should generate. The obligation to prevent ‘biohoarding’ lies not with researchers, funders or managers but with policy makers.

[1]  Vince D. Calhoun,et al.  Life sciences. , 2012, Nature.

[2]  G. Laurie.  Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law , 2011, Human Genetics.

[3]  R. Cooter.  Biocitizenship , 2008, The Lancet.

[4]  G. Lauss,et al.  Biobank governance: heterogeneous modes of ordering and democratization , 2011, Journal of Community Genetics.

[5]  M. Deschenes,et al.  ‘Access Arrangements’ for Biobanks: A Fine Line between Facilitating and Hindering Collaboration , 2010, Public Health Genomics.

[6]  R. J. Cadigan,et al.  Genomics, Biobanks, and the Trade-Secret Model , 2011, Science.

[7]  E. Meslin,et al.  Biobanking and public health: is a human rights approach the tie that binds? , 2011, Human Genetics.

[8]  K. Dierickx,et al.  Children and biobanks: a review of the ethical and legal discussion , 2011, Human Genetics.

[9]  J. Kaiser.  Private Biobanks Spark Ethical Concerns , 2002, Science.

[10]  J. Otten,et al.  The charitable trust as a model for genomic biobanks. , 2004, The New England journal of medicine.

[11]  Rajiv Dhir,et al.  A multidisciplinary approach to honest broker services for tissue banks and clinical data , 2008, Cancer.

[12]  R. Scott,et al.  Biobank classification in an Australian setting. , 2015, Biopreservation and biobanking.

[13]  G. Henderson,et al.  Characterizing biobank organizations in the U.S.: results from a national survey , 2013, Genome Medicine.

[14]  Karen Pitt,et al.  Custodianship as an Ethical Framework for Biospecimen-Based Research , 2010, Cancer Epidemiology, Biomarkers & Prevention.

[15]  A. Braun,et al.  A European Survey on Biobanks: Trends and Issues , 2010, Public Health Genomics.

[16]  R. Gallagher,et al.  From consent to institutions: designing adaptive governance for genomic biobanks. , 2011, Social science & medicine.

[17]  J. Kaiser.  Biobanks. Private biobanks spark ethical concerns. , 2002, Science.

[18]  M. Burgess,et al.  Engaging the Public on Biobanks: Outcomes of the BC Biobank Deliberation , 2008, Public Health Genomics.