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Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective

Overview of attention for article published in Journal of Bioethical Inquiry, May 2018
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2 tweeters

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1 Dimensions

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4 Mendeley
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Title
Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective
Published in
Journal of Bioethical Inquiry, May 2018
DOI 10.1007/s11673-018-9856-7
Pubmed ID
Authors

Lisa Eckstein, Margaret Otlowski

Abstract

In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens-traversing technical, interpretative, and ethical dimensions-as well as uncertainty and inconsistencies for research participants. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical Research Council to put forward strategies for supporting return of finding decision-making. In particular, we propose a pyramid of decision-making support: decision-making guidelines, technical and interpretative assistance, and ethical assistance for intractable "tough" cases. Each step of the pyramid involves an increasing level of regulatory involvement and applies to a smaller subsection of genomic research findings. Implementation of such strategies would facilitate a growing evidence base for return of finding decisions, thereby easing the financial, time, and moral burdens currently placed on researchers and other relevant decision-makers while also improving the quality of such decisions and, consequently, participant outcomes.

Twitter Demographics

The data shown below were collected from the profiles of 2 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 4 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 4 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 2 50%
Student > Ph. D. Student 1 25%
Student > Doctoral Student 1 25%
Readers by discipline Count As %
Nursing and Health Professions 1 25%
Psychology 1 25%
Social Sciences 1 25%
Medicine and Dentistry 1 25%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. 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 31 October 2018.
All research outputs
#8,071,531
of 12,867,507 outputs
Outputs from Journal of Bioethical Inquiry
#231
of 337 outputs
Outputs of similar age
#163,593
of 271,747 outputs
Outputs of similar age from Journal of Bioethical Inquiry
#10
of 13 outputs
Altmetric has tracked 12,867,507 research outputs across all sources so far. This one is in the 23rd percentile – i.e., 23% of other outputs scored the same or lower than it.
So far Altmetric has tracked 337 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.4. This one is in the 20th percentile – i.e., 20% of its peers scored the same or lower than it.
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 271,747 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 30th percentile – i.e., 30% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 13 others from the same source and published within six weeks on either side of this one. This one is in the 15th percentile – i.e., 15% of its contemporaries scored the same or lower than it.