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A qualitative study of participants’ views on re-consent in a longitudinal biobank

Overview of attention for article published in BMC Medical Ethics, March 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 (#30 of 581)
  • High Attention Score compared to outputs of the same age (93rd percentile)

Mentioned by

news
1 news outlet
twitter
44 tweeters

Citations

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3 Dimensions

Readers on

mendeley
38 Mendeley
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1 CiteULike
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Title
A qualitative study of participants’ views on re-consent in a longitudinal biobank
Published in
BMC Medical Ethics, March 2017
DOI 10.1186/s12910-017-0182-0
Pubmed ID
Authors

Mary Dixon-Woods, David Kocman, Liz Brewster, Janet Willars, Graeme Laurie, Carolyn Tarrant

Abstract

Biomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or "biobanks" over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank. We conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank. Their views were elicited using a semi-structured interview schedule and scenarios based on a hypothetical biobank. Data analysis was based on the constant comparative method. What participants identified as requiring new consent was not a straightforward matter predictable by algorithms about the scope of the consent, but instead was contingent. They assessed whether proposed new research implied a fundamental alteration in the underlying character of the biobank and whether specific projects were within the scope of the original consent. What mattered most to them was that the cooperative bargain into which they had entered was maintained in good faith. They saw re-consent as one important safeguard in this bargain. In determining what required re-consent, they deployed two logics. First, they used a logic of boundaries, where they sought to detect any possible rupture with their existing framework of cooperation. Second, they used a logic of risk, where they assessed proposed research for any potential threats for them personally or the research endeavour. When they judged that a need for re-consent had been activated, participants saw the process as way of re-actualising and renewing the cooperative bargain. Participants' perceptions of research as a process of mutual co-operation between volunteer and researcher were fundamental to their views on consent. Consenting arrangements for biobanks should respect the cooperative values that are important to participants, recognise the two logics used by research volunteers, and avoid rigidity. Agility may be favoured by tiered consent combined with strong oversight mechanisms; this approach requires evaluation.

Twitter Demographics

The data shown below were collected from the profiles of 44 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 38 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 38 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 11 29%
Student > Master 8 21%
Unspecified 7 18%
Student > Ph. D. Student 6 16%
Other 3 8%
Other 3 8%
Readers by discipline Count As %
Social Sciences 11 29%
Unspecified 7 18%
Biochemistry, Genetics and Molecular Biology 5 13%
Medicine and Dentistry 4 11%
Computer Science 3 8%
Other 8 21%

Attention Score in Context

This research output has an Altmetric Attention Score of 38. 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 04 June 2017.
All research outputs
#454,004
of 13,569,569 outputs
Outputs from BMC Medical Ethics
#30
of 581 outputs
Outputs of similar age
#17,214
of 262,387 outputs
Outputs of similar age from BMC Medical Ethics
#1
of 1 outputs
Altmetric has tracked 13,569,569 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 581 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 10.6. This one has done particularly well, scoring higher than 94% 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 262,387 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 93% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them