The document discusses the limitations of open access in genomic data sharing, emphasizing the difficulty genetic researchers face in finding and accessing data despite the availability of numerous open access articles. It highlights a visibility gap where researchers know only a few data sources and suggests that enhanced discoverability and indexing of genomic data can improve data usage and research impact. The Repositive portal aims to address these issues by making data more visible and accessible to support researchers while increasing the impact of biomedical research and drug discovery.

1. Genome sharing projects
around the world
– Open access is not enough
Fiona Nielsen
Goettingen, June 8 2016
Slides will be made available online  Tweets welcome #ELPUB2016

2. Open access is not enough

3. Example: 600,000 open access articles

4. Example: 600,000 open access articles

5. Genetic researchers search for data to validate their hypothesis
and discover new relations between genetics and disease
We studied this problem in genomics

6. We interviewed and surveyed genetic researchers
T. A. van Schaik et al
The need to redefine genomic
data sharing: a focus on data
accessibility, Applied &
Translational Genomics, 2014
10.1016/j.atg.2014.09.013
We studied the problem by
qualitative interviews followed
by a survey of researchers in
human genetics

7. We studied the problem by
qualitative interviews followed
by a survey of researchers in
human genetics
Open Access more frequently accessed
T. A. van Schaik et al
The need to redefine genomic
data sharing: a focus on data
accessibility, Applied &
Translational Genomics, 2014
10.1016/j.atg.2014.09.013

8. We studied the problem by
qualitative interviews followed
by a survey of researchers in
human genetics
But Open Access is not enough
T. A. van Schaik et al
The need to redefine genomic
data sharing: a focus on data
accessibility, Applied &
Translational Genomics, 2014
10.1016/j.atg.2014.09.013
Researchers spend months to find
and access genomic data, and often
choose to not access data at all

9. • Genetic researchers know only a handful of data sources
average 4, max 10
• At our last Repositive data census we counted a total of
163 data sources
The visibility gap
• Read more in our recent PLoS Biology paper:
http://journals.plos.org/plosbiology/article?id=10.1371%2Fjournal.pbio.1002418

10. 10-20x more data is available – and Open Access!
Can download the
data straight away
or after logging in.
Need to apply for
access to the data.
Has both Open and Restricted
access data within one repository.

11. Lots of open access data in genomics

12. • Make data more visible, discoverable
• Increase data reuse
• Better use of funding
• More impact for biomedical research and drug discovery 
faster impact for patients
How can we close the gap?

13. Without adding to the confusion

14. Repositive has launched a portal (in beta)
Discover new data sources
• Indexing metadata,
ie data descriptions
• Easy search
• Simple access
• Free platform
• First ~42,000
genomic data sets
indexedhttp://repositive.io

15. Repositive increases data discoverability
Make your data visible
• Users can
contribute
descriptions to
improve visibility for
their research
• Researchers want
visibility because
they want credit
http://repositive.io

16. • Papers with Open Access data receive more citations
• Piwowar HA and Vision TJ (2013) Data reuse and the open data citation advantage. PeerJ, 1: e175.
http://dx.doi.org/10.7717/peerj.175
Does discoverability impact data reuse?
• Does discoverable open data increase data reuse?
• We are doing an experiment
with GigaScience to test the
data access impact of increasing
discoverability of their Open
Access genomics data

17. Thank you!