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Keywords: Data sharing
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Journal Articles
Public Health Genomics (2022) 25 (1-2): 22–31.
Published Online: 17 September 2021
... and preferences to genomic research, including international data sharing and biobanking. Methods: Individuals with CP and their family members were invited to participate in the web-based survey via email (NSW/ACT CP Register) or via posts on social media by Cerebral Palsy Alliance, CP Research Network, and CP...
Journal Articles
Journal Articles
Public Health Genomics (2018) 20 (5): 293–306.
Published Online: 07 February 2018
... regarding data sharing such as misuse of data, the fear of becoming a transparent citizen, and data safety. However, 20% of the participants express confidence in data protection. Even participants who were skeptical in the beginning of the interviews admitted the benefits of data sharing. Discussion...
Journal Articles
Public Health Genomics (2016) 19 (4): 211–219.
Published Online: 01 June 2016
... among the most interesting ones. However, due to the free rider problem, clinical trial data sharing among biopharmaceutical companies could undermine their innovativeness. Method: Based on the theory of public goods, we have developed a commons arrangement and devised a model, which enables secure...
Journal Articles
Journal Articles
Public Health Genomics (2015) 18 (2): 87–96.
Published Online: 13 December 2014
... a broader range of ethics-related data-sharing concerns. Methods: Ethics-related data-sharing concerns of Institutional Review Boards, ethics experts, international research consortia and research participants were identified through a literature search and systematically examined at a multidisciplinary...
Journal Articles
Public Health Genomics (2014) 17 (3): 149–157.
Published Online: 28 March 2014
..., instructions or products referred to in the content or advertisements. Biobank Data sharing Epidemiological research Ethics Law Policy Statistical analysis Large collections of biomedical data are becoming increasingly available for use by the research community. Data resources from...
Journal Articles
Journal Articles
Public Health Genomics (2012) 15 (5): 272–284.
Published Online: 20 June 2012
... Data sharing Focus groups Genetic privacy Policy Public engagement Qualitative research Reciprocity Research participation When participants are recruited into a biobank study, they typically donate samples such as of blood, urine, saliva, and tissue. These donations are different from...
Journal Articles
Journal Articles
Public Health Genomics (2010) 13 (6): 368–377.
Published Online: 15 January 2010
... of Genotypes and Phenotypes (dbGaP) [ 6 ]. In addition, the NIH has a Policy for Sharing of Data in NIH-Supported or Conducted GWAS, which outlines data sharing procedures, data access principles, and research participant protections for submitting investigators [ 7 ]. Although there are considerable...