| Title |
Registered access: authorizing data access
|
|---|---|
| Published in |
European Journal of Human Genetics, August 2018
|
| DOI | 10.1038/s41431-018-0219-y |
| Pubmed ID | |
| Authors |
Stephanie O. M. Dyke, Mikael Linden, Ilkka Lappalainen, Jordi Rambla De Argila, Knox Carey, David Lloyd, J. Dylan Spalding, Moran N. Cabili, Giselle Kerry, Julia Foreman, Tim Cutts, Mahsa Shabani, Laura L. Rodriguez, Maximilian Haeussler, Brian Walsh, Xiaoqian Jiang, Shuang Wang, Daniel Perrett, Tiffany Boughtwood, Andreas Matern, Anthony J. Brookes, Miro Cupak, Marc Fiume, Ravi Pandya, Ilia Tulchinsky, Serena Scollen, Juha Törnroos, Samir Das, Alan C. Evans, Bradley A. Malin, Stephan Beck, Steven E. Brenner, Tommi Nyrönen, Niklas Blomberg, Helen V. Firth, Matthew Hurles, Anthony A. Philippakis, Gunnar Rätsch, Michael Brudno, Kym M. Boycott, Heidi L. Rehm, Michael Baudis, Stephen T. Sherry, Kazuto Kato, Bartha M. Knoppers, Dixie Baker, Paul Flicek |
| Abstract |
The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting. |
X Demographics
The data shown below were collected from the profiles of 14 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 2 | 14% |
| United States | 2 | 14% |
| Australia | 1 | 7% |
| Kenya | 1 | 7% |
| Switzerland | 1 | 7% |
| Austria | 1 | 7% |
| Belgium | 1 | 7% |
| Unknown | 5 | 36% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 6 | 43% |
| Scientists | 6 | 43% |
| Practitioners (doctors, other healthcare professionals) | 1 | 7% |
| Science communicators (journalists, bloggers, editors) | 1 | 7% |
Mendeley readers
The data shown below were compiled from readership statistics for 77 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 77 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 13 | 17% |
| Researcher | 12 | 16% |
| Other | 11 | 14% |
| Student > Master | 7 | 9% |
| Professor | 5 | 6% |
| Other | 12 | 16% |
| Unknown | 17 | 22% |
| Readers by discipline | Count | As % |
|---|---|---|
| Biochemistry, Genetics and Molecular Biology | 11 | 14% |
| Computer Science | 11 | 14% |
| Agricultural and Biological Sciences | 9 | 12% |
| Social Sciences | 8 | 10% |
| Medicine and Dentistry | 7 | 9% |
| Other | 13 | 17% |
| Unknown | 18 | 23% |
Attention Score in Context
This research output has an Altmetric Attention Score of 12. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 17 January 2020.
All research outputs
#3,052,738
of 25,056,530 outputs
Outputs from European Journal of Human Genetics
#718
of 3,638 outputs
Outputs of similar age
#58,293
of 336,675 outputs
Outputs of similar age from European Journal of Human Genetics
#10
of 56 outputs
Altmetric has tracked 25,056,530 research outputs across all sources so far. Compared to these this one has done well and is in the 87th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,638 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 10.5. This one has done well, scoring higher than 80% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 336,675 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 82% of its contemporaries.
We're also able to compare this research output to 56 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 82% of its contemporaries.