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Balancing the local and the universal in maintaining ethical access to a genomics biobank

Overview of attention for article published in BMC Medical Ethics, December 2017
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About this Attention Score

  • In the top 5% of all research outputs scored by Altmetric
  • Among the highest-scoring outputs from this source (#31 of 641)
  • High Attention Score compared to outputs of the same age (94th percentile)
  • High Attention Score compared to outputs of the same age and source (97th percentile)

Mentioned by

blogs
1 blog
twitter
58 tweeters
facebook
2 Facebook pages
googleplus
2 Google+ users

Citations

dimensions_citation
8 Dimensions

Readers on

mendeley
48 Mendeley
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Title
Balancing the local and the universal in maintaining ethical access to a genomics biobank
Published in
BMC Medical Ethics, December 2017
DOI 10.1186/s12910-017-0240-7
Pubmed ID
Authors

Catherine Heeney, Shona M. Kerr

Abstract

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research data resources and consortia. We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource. We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects. Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance. We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported. A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context.

Twitter Demographics

The data shown below were collected from the profiles of 58 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 48 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 48 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 10 21%
Student > Ph. D. Student 9 19%
Researcher 8 17%
Student > Doctoral Student 3 6%
Professor 3 6%
Other 6 13%
Unknown 9 19%
Readers by discipline Count As %
Social Sciences 11 23%
Medicine and Dentistry 7 15%
Biochemistry, Genetics and Molecular Biology 4 8%
Business, Management and Accounting 3 6%
Engineering 2 4%
Other 10 21%
Unknown 11 23%

Attention Score in Context

This research output has an Altmetric Attention Score of 44. 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 18 July 2019.
All research outputs
#451,613
of 14,557,458 outputs
Outputs from BMC Medical Ethics
#31
of 641 outputs
Outputs of similar age
#20,018
of 400,267 outputs
Outputs of similar age from BMC Medical Ethics
#2
of 71 outputs
Altmetric has tracked 14,557,458 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 96th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 641 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 14.5. This one has done particularly well, scoring higher than 95% 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 400,267 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 94% of its contemporaries.
We're also able to compare this research output to 71 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 97% of its contemporaries.