<script type="text/javascript">
<!--
document.write('<div id="oa_widget"></div>');
document.write('<script type="text/javascript" src="https://www.openaire.eu/index.php?option=com_openaire&view=widget&format=raw&projectId=undefined&type=result"></script>');
-->
</script>

COPY SCRIPT

For further information contact us at helpdesk@openaire.eu

Registered access: authorizing data access

descriptionPublicationkeyboard_double_arrow_right Article , Other literature type 02 Aug 2018Embargo end date: 01 Jan 2018 Switzerland, Spain, Belgium, United Kingdom, United Kingdom, United States English Publisher:Springer Science and Business Media LLCJournal:European Journal of Human Genetics, volume 26, pages 1,721-1,731 (issn: 1018-4813, eissn: 1476-5438,

Copyright policy )Funded by:WT | The Genome Campus Allianc..., NIH | Center for Critical Asses..., NIH | The UCSC Genome Browser +4 projects

Authors: Bartha Maria Knoppers; Tiffany Boughtwood; Miro Cupak; Samir Das; Shuang Wang; Serena Scollen; Ravindra Nath Pandya; +43 Authors

doi: 10.1038/s41431-018-0219-y , 10.3929/ethz-b-000307571

pmid: 30069064

pmc: PMC6244209

handle: 10230/42859 , 20.500.11850/307571 , 2381/44805

Registered access: authorizing data access

- Summary
- Subjects
- Related research
  (5)
- Metrics

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.

European Journal of Human Genetics, 26 (12)

ISSN:1476-5438

ISSN:1018-4813

Countries

Switzerland, Spain, Belgium, United Kingdom, United Kingdom, United States

Related Organizations

Broad Institute
United States
University of California, Berkeley
United States
University of California System
United States
University of California, San Diego
United States
National Institute of Health
Pakistan

View all View all

Keywords

Biochemistry & Molecular Biology, MATCHMAKING, 330, Genetics, Medical, Clinical Sciences, 610, Clinical sciences, and research governance, 3105 Genetics, Article, 8.3 Policy, Access to Information, Medical, Genetics research, Genetics, Humans, Genetics & Heredity, 0604 Genetics, Science & Technology, Biomedical and Clinical Sciences, Information Dissemination, 3202 Clinical sciences, 1103 Clinical Sciences, Genomics, Biological Sciences, ethics, Personalized medicine, Good Health and Well Being, 306, Practice Guidelines as Topic, Generic health relevance, Life Sciences & Biomedicine, Licensure, Health and social care services research

5 Research products, page of 1

Impact byBIP!

	citations This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).	34
	popularity This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.	Top 10%
	influence This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).	Top 10%
	impulse This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.	Top 10%