ISBN:
9783642331169
Language:
English
Pages:
1 online resource (332 pages)
Edition:
1st ed.
Parallel Title:
Erscheint auch als
DDC:
174.957
Keywords:
Biobanks -- Law and legislation
;
Biology -- Research -- Law and legislation
;
Konferenzschrift 2010
Abstract:
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.
Abstract:
Intro -- Comparative Issues in the Governance of Research Biobanks -- Property, Privacy, Intellectual Property,and the Role of Technology -- Contents -- Contributors -- Chapter 1: Introduction: A Law and Technology Approach to the Law of Biobanking -- Part I: Property and Privacy in Biobanking -- Chapter 2: Research Biobanks Meet Synthetic Biology: Autonomy and Ownership -- 2.1 Introduction -- 2.2 Research Biobanks -- 2.3 Havasupai Blood Samples -- 2.4 Synthetic Biology -- 2.4.1 Repositories of Biological Materials -- 2.4.2 Zinc Finger Technology -- 2.4.3 Intellectual Property Rights and Open-Source in Zinc Finger Technology -- 2.4.4 Why We Should Have Few Reservations About Sangamo´s Preeminence -- 2.5 Conclusion -- Appendix -- References -- Chapter 3: Regulating Biobanks: Another Triple Bottom Line -- 3.1 Introduction -- 3.2 The Regulatory Environment and Biobanking -- 3.3 After Property, Privacy, and Consent: The Question of Feedback -- 3.3.1 Clinical Feedback -- 3.3.2 False Positives -- 3.3.3 Consent -- 3.3.4 The Right to Know and the Right Not to Know -- 3.4 Stewardship and the Agency Commons -- 3.5 Moral Community -- 3.6 Conclusion -- 3.6.1 Coda -- References -- Chapter 4: Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States -- 4.1 History of the Bill -- 4.1.1 GINA: Content of the Act -- 4.2 The Case for GINA -- 4.3 The Case Against GINA -- 4.3.1 Criticisms of Title I -- 4.3.2 Criticisms of Title II -- 4.3.3 Litigating Genetic Discrimination -- 4.4 Conclusion -- References -- Chapter 5: Ownership of Biomedical Information in Biobanks -- 5.1 Introduction -- 5.2 Genomics Research -- 5.3 What Is Property, and Why Does Property Matter? -- 5.4 Ownership of Information in Relation to a Single Individual -- 5.5 Ownership of a Collection of Information.
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