caa a22 4500 445860820 CHVBK 20180317145442.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1044-3 doi (NATIONALLICENCE)springer-10.1007/s00439-011-1044-3 Genomic databases access agreements: legal validity and possible sanctions [Elektronische Daten] [Yann Joly, Nik Zeps, Bartha Knoppers] 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. Springer-Verlag, 2011 Joly Yann Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5101, H3A 1A4, Montreal, QC, Canada aut Zeps Nik St John of God Pathology, Subiaco, Western Australia aut Knoppers Bartha Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5214, H3A 1A4, Montreal, QC, Canada aut Human Genetics Springer-Verlag 130/3(2011-09-01), 441-449 0340-6717 130:3<441 2011 130 439 https://doi.org/10.1007/s00439-011-1044-3 text/html Onlinezugriff via DOI 1 review-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1044-3 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Joly Yann Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5101, H3A 1A4, Montreal, QC, Canada aut NATIONALLICENCE 700 1- Zeps Nik St John of God Pathology, Subiaco, Western Australia aut NATIONALLICENCE 700 1- Knoppers Bartha Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5214, H3A 1A4, Montreal, QC, Canada aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 441-449 0340-6717 130:3<441 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer