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Ethical concerns on sharing genomic data including patients’ family members

Overview of attention for article published in BMC Medical Ethics, June 2018
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (80th percentile)
  • High Attention Score compared to outputs of the same age and source (83rd percentile)

Mentioned by

blogs
1 blog
twitter
5 tweeters
facebook
1 Facebook page

Citations

dimensions_citation
9 Dimensions

Readers on

mendeley
48 Mendeley
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Title
Ethical concerns on sharing genomic data including patients’ family members
Published in
BMC Medical Ethics, June 2018
DOI 10.1186/s12910-018-0310-5
Pubmed ID
Authors

Kyoko Takashima, Yuichi Maru, Seiichi Mori, Hiroyuki Mano, Tetsuo Noda, Kaori Muto

Abstract

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients' and family members' data collectively raises an ethical tension between the value of datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members' clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them.

Twitter Demographics

The data shown below were collected from the profiles of 5 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 > Ph. D. Student 13 27%
Researcher 7 15%
Student > Master 6 13%
Other 5 10%
Professor > Associate Professor 4 8%
Other 8 17%
Unknown 5 10%
Readers by discipline Count As %
Medicine and Dentistry 10 21%
Biochemistry, Genetics and Molecular Biology 9 19%
Agricultural and Biological Sciences 7 15%
Social Sciences 5 10%
Computer Science 4 8%
Other 8 17%
Unknown 5 10%

Attention Score in Context

This research output has an Altmetric Attention Score of 10. 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 23 December 2018.
All research outputs
#1,749,607
of 14,054,610 outputs
Outputs from BMC Medical Ethics
#194
of 609 outputs
Outputs of similar age
#54,069
of 273,817 outputs
Outputs of similar age from BMC Medical Ethics
#1
of 6 outputs
Altmetric has tracked 14,054,610 research outputs across all sources so far. Compared to these this one has done well and is in the 87th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 609 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 14.3. This one has gotten more attention than average, scoring higher than 67% 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 273,817 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 80% of its contemporaries.
We're also able to compare this research output to 6 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