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Comparative Issues in the Governance of Research Biobanks - Property, Privacy, Intellectual Property, and the Role of Technology (Hardcover, 2013 ed.)
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Comparative Issues in the Governance of Research Biobanks - Property, Privacy, Intellectual Property, and the Role of Technology (Hardcover, 2013 ed.)
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In the last few years, the boom in biobanking has prompted a lively
debate on a host of interrelated legal issues, such as the Gordian
knot of the ownership of biological materials, as well as privacy
concerns. The latter are due to the difficulty of accepting that
biological samples must be completely anonymous without making it
practically impossible to exploit their information potential. The
issues also include the delicate role and the changing content of
the donor's "informed consent" as the main legal tool that may
serve to link the privacy and property interests of donors with the
research interests and the set of principles that should be at the
core of the biobanking practice. Lastly, the IP issues and the
patentability of biological samples as well as the protection of
databases storing genetic information obtained from the samples are
covered. Collecting eighteen essays written by eminent scholars
from Italy, the US, the UK and Canada, this book provides new
solutions to these problems. From a comparative viewpoint, it
explores the extent to which digital technology may assist in
tackling the numerous regulatory issues raised by the practice of
biobanking for research purposes. These issues may be considered
and analyzed under the traditional paradigms of Property, Privacy,
Informed Consent and Intellectual Property.
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