title: Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC).
abstract: There is a noticeable lack of international regulation on personal data exchange and management in research. This article sheds light 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.
authors.affiliation: ICGC. carlosmaria.romeo@ehu.es
authors.forename: Carlos
authors.initials: C
authors.lastname: Romeo-Casabona
authors.forename: Pilar
authors.initials: P
authors.lastname: Nicolás
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
authors.forename: Susan E
authors.initials: SE
authors.lastname: Wallace
authors.forename: Don
authors.initials: D
authors.lastname: Chalmers
authors.forename: Stephanie
authors.initials: S
authors.lastname: Dyke
authors.forename: Karen
authors.initials: K
authors.lastname: Kennedy
authors.forename: Antonio
authors.initials: A
authors.lastname: Troncoso
authors.forename: Terry
authors.initials: T
authors.lastname: Kaan
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Rial-Sebbag
mesh_terms: D035843:Biomedical Research / Q000331:legislation & jurisprudence*; D030541:Databases, Genetic / Q000941:ethics / Q000331:legislation & jurisprudence*; D036281:Genetic Research / Q000331:legislation & jurisprudence*; D007390:International Agencies; D038622:Internationality