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dc.contributor.authorJoly, Y.
dc.contributor.authorZeps, Nikolajs
dc.contributor.authorKnoppers, B.
dc.date.accessioned2017-01-30T14:37:06Z
dc.date.available2017-01-30T14:37:06Z
dc.date.created2016-04-21T19:30:21Z
dc.date.issued2011
dc.date.submitted2016-04-22
dc.identifier.citationJoly, Y. and Zeps, N. and Knoppers, B. 2011. Genomic databases access agreements: Legal validity and possible sanctions. Human Genetics. 130 (3): pp. 441-449.
dc.identifier.urihttp://hdl.handle.net/20.500.11937/39797
dc.identifier.doi10.1007/s00439-011-1044-3
dc.description.abstract

Large-scale, public genomic databases have greatly improved the capacity of researchers to do genomic research. In order to ensure that the scientific community uses data from these public resources properly, data access agreements have been developed to complement already existing legal and ethical norms. Sanctions to address cases of data misuse constitute an essential part of this compliance framework meant to protect stakeholders in genomic research. Yet very little research and community debate has been done on this most important topic. This paper presents a review of different sanctions that could be invoked in cases of non-compliance from data users. They have been identified through comprehensive research and analysis of over 450 documents (journal articles, policy, guidelines, access policies, etc.) related to this topic. Given the considerable impact on users of even the milder sanctions considered in our paper, it is essential that stakeholders strive to achieve the highest degree of standardization and transparency when designing controlled-access agreements. It is only fair, after all, that users be able to expect that the border between acceptable and unacceptable conduct is clearly delineated and predictable in controlled-access policies. This suggests the importance for researchers to undertake additional empirical studies on the clarity and accessibility of existing database access agreements and related policies in the near future.

dc.titleGenomic databases access agreements: Legal validity and possible sanctions
dc.typeJournal Article
dcterms.dateSubmitted2016-04-22
dcterms.source.volume130
dcterms.source.number3
dcterms.source.startPage441
dcterms.source.endPage449
dcterms.source.issn0340-6717
dcterms.source.titleHuman Genetics
curtin.digitool.pid239683
curtin.pubStatusPublished
curtin.refereedTRUE
curtin.identifier.scriptidPUB-VC-ORD-SA-92612
curtin.identifier.elementsidELEMENTS-67076
curtin.accessStatusFulltext not available


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