Comparative Issues in the Governance of Research Biobanks: by Giovanni Pascuzzi, Umberto Izzo, Matteo Macilotti

By Giovanni Pascuzzi, Umberto Izzo, Matteo Macilotti

In the previous few years, the increase in biobanking has triggered a full of life debate on a number of interrelated criminal concerns, corresponding to the Gordian knot of the possession of organic fabrics, in addition to privateness issues. The latter are as a result trouble of accepting that organic samples has to be thoroughly nameless with no making it essentially very unlikely to take advantage of their info power. the problems additionally contain the fragile function and the altering content material of the donor’s “informed consent” because the major felony instrument which can serve to hyperlink the privateness and estate pursuits of donors with the learn pursuits and the set of ideas that are meant to be on the center of the biobanking perform. finally, the IP matters and the patentability of organic samples in addition to the safety of databases storing genetic info acquired from the samples are lined. amassing eighteen essays written by means of eminent students from Italy, the U.S., the united kingdom and Canada, this publication offers new ideas to those difficulties. From a comparative standpoint, it explores the level to which electronic expertise might help in tackling the various regulatory matters raised by means of the perform of biobanking for learn reasons. those concerns could be thought of and analyzed lower than the normal paradigms of estate, privateness, educated Consent and highbrow Property.

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Extra resources for Comparative Issues in the Governance of Research Biobanks: Property, Privacy, Intellectual Property, and the Role of Technology

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Macmillan, New York Duffy JF (2004) Rethinking the prospect theory of patents. Univ Chic Law Rev 71(2):439–510 Faden RR, Beauchamp TL (1986) A history and theory of informed consent. R. Munzer Farrell J, Weiser PJ (2003) Modularity, vertical integration, and open access policies: towards a convergence of antitrust and regulation in the internet age. Harv J Law Technol 17(1):85–134 Gibson DG et al (2010) Creation of a bacterial cell controlled by a chemically synthesized genom. Science 329:52–56 Harmon A (2010) Indian tribe wins fight to limit research of its DNA.

2009 Form 10-K (5 March 2010), at 27–41, available at http://files. pdf. Accessed 25 October 2010. R. 5 Conclusion The Havasupai example and the zinc finger technology example have more in common than might at first appear. Both involve research biobanks, individual and group autonomy, informational asymmetries, and exchange. As to exchange, the Havasupai litigation turns on what the Arizona State University researchers gave the tribe in return for blood samples. Apparently, they gave them, or were on the way to giving them, information the tribe sought about its members’ predisposition to diabetes.

Y. pdf. Accessed 25 October 2010. 74 See Munzer (2009), supra note 28, at 276–280. 75 Chandrasekharan et al. (2009), supra note 39, at 140. 76 The authors’ Supplementary Table 1, which is available online (see note 48 supra), lists a total of 68 patents, and my Appendix lists an additional 35 patents. 77 Id. at 143. 78 The context and phrasing of the quoted sentence indicate that Chandrasekharan and colleagues are making a claim about Sangamo’s patents collectively—namely, that they gave the company a monopoly on ZF technology at the end of 2007.

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