Future-proofing biobanks' governance

F Gille, E Vayena, A Blasimme - European Journal of Human Genetics, 2020 - nature.com
Good biobank governance implies—at a minimum—transparency and accountability and
the implementation of oversight mechanisms. While the biobanking community is in general …

Practice evaluation of biobank ethics and governance: current needs and future perspectives

H Langhof, J Schwietering, D Strech - Journal of medical genetics, 2019 - jmg.bmj.com
Background Biobank research faces many ethical challenges. Ethics research aims to
develop standards for governance to meet these challenges by elaborating overarching …

Biobank governance: a lesson in trust

AK Hawkins, K O'Doherty - New Genetics and Society, 2010 - Taylor & Francis
Biobanks are controversial due to their ethical, legal, and social implications. Recent
discussion has highlighted a central role for governance in helping to address these …

[HTML][HTML] A call for global governance of biobanks

H Chen, T Pang - Bulletin of the World Health Organization, 2014 - SciELO Public Health
The progress in genomic research has led to increased sampling and storage of biological
samples in biobanks. Most biobanks are located in high-income countries, but the …

Biobank governance: heterogeneous modes of ordering and democratization

H Gottweis, G Lauss - Journal of community genetics, 2012 - Springer
The great interest in biobanks, the related, substantial investments, and the expectations
connected with them raises the question of how to explain the relative successes and …

The art and science of biobanking

BM Knoppers, TJ Hudson - Human genetics, 2011 - Springer
The inspiration and impetus for this special issue on ''Biobanking''came after over a decade
of real world experience by the editors in the funding, building, and roll-out of biobanks …

Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law

G Laurie - Human genetics, 2011 - Springer
Although a few jurisdictions around the world have legislated in response to the
phenomenon of biobanking, the far more common response has been policy led with …

[图书][B] Governing biobanks: understanding the interplay between law and practice

J Kaye, S Gibbons, C Heeney, A Smart - 2012 - books.google.com
Biobanks are proliferating rapidly worldwide because they are powerful tools and
organisational structures for undertaking medical research. By linking samples to data on …

[图书][B] Ethical issues in governing biobanks: global perspectives

B Elger, N Biller-Andorno, AM Capron - 2016 - api.taylorfrancis.com
Population genomics research drawing on genetic databases has expanded rapidly, with
some of this information being combined in'biobanks'. Managing this information in an …

A legal framework for biobanking: the German experience

J Simon, R Paslack, J Robienski, DN Cooper… - European journal of …, 2007 - nature.com
Although biobanks are vital for modern medical research, serious concerns have been
raised about the legal basis and framework of such endeavours. This led the German …