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1-11 of 11
Keywords: Data sharing
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Journal Articles
Yana Alexandra Wilson, Sarah McIntyre, Emma Waight, Marelle Thornton, Saskia van Otterloo, Sophie Rachel Marmont, Michael Kruer, Gareth Baynam, Jozef Gecz, Nadia Badawi
Journal:
Public Health Genomics
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:
Public Health Genomics
Public Health Genomics (2019) 21 (5-6): 207–216.
Published Online: 05 June 2019
... members. Results: Three major themes emerged related to: (1) perceived individual and social harms associated with data sharing; (2) concerns to address when governing access to RPGEH data; and (3) impact of a blurred boundary between research and clinical care in the context of biobanking. Conclusions...
Journal Articles
Journal:
Public Health Genomics
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
Journal:
Public Health Genomics
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:
Public Health Genomics
Public Health Genomics (2015) 18 (3): 160–172.
Published Online: 13 March 2015
...Christine Critchley; Dianne Nicol; Margaret Otlowski Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party...
Journal Articles
Isabelle Budin-Ljøsne, Paul Burton, Julia Isaeva, Amadou Gaye, Andrew Turner, Madeleine J. Murtagh, Susan Wallace, Vincent Ferretti, Jennifer R. Harris
Journal:
Public Health Genomics
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
Journal:
Public Health Genomics
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:
Public Health Genomics
Public Health Genomics (2014) 16 (6): 322–335.
Published Online: 03 February 2014
...D. So; Y. Joly; B.M. Knoppers Background: Data sharing from clinical trials can be key to the development and approval of medicines for rare diseases. Many events during the first half of 2013 have contributed to the movement for increased transparency. These include the development of the European...
Journal Articles
Journal:
Public Health Genomics
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
Balancing the Risks and Benefits of Genomic Data Sharing: Genome Research Participants’ Perspectives
Journal:
Public Health Genomics
Public Health Genomics (2012) 15 (2): 106–114.
Published Online: 30 December 2011
... data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information...
Journal Articles
Journal:
Public Health Genomics
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...