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Public Regulation of Tumor Banks - Establishment, Heritage Status, Development and Sharing of Human Biological Samples (Hardcover, 1st ed. 2018)
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Public Regulation of Tumor Banks - Establishment, Heritage Status, Development and Sharing of Human Biological Samples (Hardcover, 1st ed. 2018)
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The multidisciplinary book assesses the legal and economic
uncertainties surrounding the collection, storage, provision and
economic development of biological samples (tumors, tissues, cells)
and associated personal data related to oncology. Public, partly
public and private sector actors in the field of cancer care and
research hold collections supported by significant public and
social funding. Under certain conditions, particularly in the
context of networking (sometimes promoted by public authorities),
these collections can also represent major economic assets and
scientific resources. However, this involves a number of issues and
institutional constraints: legal: the will of the source person;
non-pecuniary damage; freedom to establish collections; competence
in deciding on their use; legal frameworks for their distribution;
desire for return on investment for public institutions, notably in
terms of industrial and intellectual property. economic: cost of
establishing and running biological resource centres; destroying
resources; emerging markets; profit sharing. public health policy
choices: prioritisation of therapeutic measures over research
(fundamental or clinical trials); conservation of resources;
promotion of scientific (and not commercial) value of collections.
The establishment, heritage recognition ("patrimonialisation"),
development and sharing of these resources thus merit our calling
into question present practices and their evolution, as well as the
leverage available to public authorities (incentives, legislation,
regulation) in a context where norms emerge from professional
practice to become widely used in collaborative networks. Filling a
gap in the current literature on law and economics, which pays
little heed to these specific considerations, this book explores
these considerations to bring to light the economic implications of
ethical choices and governance issues in the health sector
(structural organisation of local, national and European actors in
oncology). It is intended for researchers in fields such as law,
economics and biomedical sciences, as well as for public
policymakers.
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