| Title |
An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health
|
|---|---|
| Published in |
Biopreservation and Biobanking, April 2016
|
| DOI | 10.1089/bio.2016.0005 |
| Pubmed ID | |
| Authors |
Vasiliki Rahimzadeh, Stephanie O.M. Dyke, Bartha M. Knoppers |
| Abstract |
The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. Worldwide representation of institutions, funders, researchers, and patient advocacy groups at the Global Alliance is testament to a shared ideal that sees maximizing the public good as a chief priority of genomic innovation in health. The Global Alliance has made a critical stride in this regard with the development of its Framework for Responsible Sharing of Genomic and Health-related Data.(1) This article first discusses the human rights pillars that underlie the Framework and mission of the Global Alliance. Second, it outlines the Global Alliance's use of data governance policies through a number of demonstration projects. Finally, the authors describe how the Global Alliance envisions international data sharing moving forward in the postgenomic era. |
X Demographics
The data shown below were collected from the profiles of 11 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| India | 1 | 9% |
| United States | 1 | 9% |
| Unknown | 9 | 82% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 9 | 82% |
| Scientists | 2 | 18% |
Mendeley readers
The data shown below were compiled from readership statistics for 61 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Netherlands | 1 | 2% |
| United States | 1 | 2% |
| Bulgaria | 1 | 2% |
| Canada | 1 | 2% |
| Unknown | 57 | 93% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 11 | 18% |
| Researcher | 10 | 16% |
| Student > Bachelor | 5 | 8% |
| Student > Master | 4 | 7% |
| Librarian | 3 | 5% |
| Other | 13 | 21% |
| Unknown | 15 | 25% |
| Readers by discipline | Count | As % |
|---|---|---|
| Social Sciences | 10 | 16% |
| Nursing and Health Professions | 8 | 13% |
| Agricultural and Biological Sciences | 7 | 11% |
| Biochemistry, Genetics and Molecular Biology | 5 | 8% |
| Computer Science | 3 | 5% |
| Other | 13 | 21% |
| Unknown | 15 | 25% |