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Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC)
journal contribution
posted on 2023-05-17, 17:04 authored by Romeo-Casabona, C, Nicolas, P, Knoppers, BM, Joly, Y, Wallace, S, Donald ChalmersDonald Chalmers, Dyke, S, Kennedy, K, Troncoso, A, Kaan, T, Rial-Sebbag, EThere is a noticeable lack of international regulation on personal data exchange and management in research. This artcle sheds lights in this area by describing how the International Cancer Genome Consortium is developing policies and procedures to address the ethical and legal issues raised by the international transfer of data and results. These policies and procedures aim, first and most importantly, to safeguard the interests of the research participants and other involved stakeholders and, secondly, to facilitate the sharing of data and results to realize greater benefits from this kind of internationally collaborative genetic research.
History
Publication title
Revista de Derecho y Genoma Humano / Law and the Human Genome ReviewVolume
37Issue
July-December 2012Pagination
15-34ISSN
1134-7198Department/School
Faculty of LawPublisher
Catedra InteruniversitariaPlace of publication
Bilbao, SpainRights statement
Copyright 2012 Catedra InteruniversitariaRepository Status
- Restricted