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Clinical providers’ experiences with returning results from genomic sequencing: an interview study

Overview of attention for article published in BMC Medical Genomics, May 2018
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About this Attention Score

  • Above-average Attention Score compared to outputs of the same age (62nd percentile)
  • High Attention Score compared to outputs of the same age and source (99th percentile)

Mentioned by

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8 tweeters

Citations

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40 Dimensions

Readers on

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59 Mendeley
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Title
Clinical providers’ experiences with returning results from genomic sequencing: an interview study
Published in
BMC Medical Genomics, May 2018
DOI 10.1186/s12920-018-0360-z
Pubmed ID
Authors

Julia Wynn, Katie Lewis, Laura M. Amendola, Barbara A. Bernhardt, Sawona Biswas, Manasi Joshi, Carmit McMullen, Sarah Scollon

Abstract

Current medical practice includes the application of genomic sequencing (GS) in clinical and research settings. Despite expanded use of this technology, the process of disclosure of genomic results to patients and research participants has not been thoroughly examined and there are no established best practices. We conducted semi-structured interviews with 21 genetic and non-genetic clinicians returning results of GS as part of the NIH funded Clinical Sequencing Exploratory Research (CSER) Consortium projects. Interviews focused on the logistics of sessions, participant/patient reactions and factors influencing them, how the sessions changed with experience, and resources and training recommended to return genomic results. The length of preparation and disclosure sessions varied depending on the type and number of results and their implications. Internal and external databases, online resources and result review meetings were used to prepare. Respondents reported that participants' reactions were variable and ranged from enthusiasm and relief to confusion and disappointment. Factors influencing reactions were types of results, expectations and health status. A recurrent challenge was managing inflated expectations about GS. Other challenges included returning multiple, unanticipated and/or uncertain results and navigating a rare diagnosis. Methods to address these challenges included traditional genetic counseling techniques and modifying practice over time in order to provide anticipatory guidance and modulate expectations. Respondents made recommendations to improve access to genomic resources and genetic referrals to prepare future providers as the uptake of GS increases in both genetic and non-genetic settings. These findings indicate that returning genomic results is similar to return of results in traditional genetic testing but is magnified by the additional complexity and potential uncertainty of the results. Managing patient expectations, initially identified in studies of informed consent, remains an ongoing challenge and highlights the need to address this issue throughout the testing process. The results of this study will help to guide future providers in the disclosure of genomic results and highlight educational needs and resources necessary to prepare providers. Future research on the patient experience, understanding and follow-up of recommendations is needed to more fully understand the disclosure process.

Twitter Demographics

The data shown below were collected from the profiles of 8 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 59 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 59 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 14 24%
Other 10 17%
Student > Bachelor 7 12%
Student > Ph. D. Student 5 8%
Student > Master 5 8%
Other 6 10%
Unknown 12 20%
Readers by discipline Count As %
Biochemistry, Genetics and Molecular Biology 25 42%
Medicine and Dentistry 9 15%
Agricultural and Biological Sciences 4 7%
Social Sciences 3 5%
Engineering 2 3%
Other 3 5%
Unknown 13 22%

Attention Score in Context

This research output has an Altmetric Attention Score of 4. 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 10 May 2018.
All research outputs
#5,765,263
of 19,010,680 outputs
Outputs from BMC Medical Genomics
#271
of 1,012 outputs
Outputs of similar age
#105,902
of 290,403 outputs
Outputs of similar age from BMC Medical Genomics
#1
of 8 outputs
Altmetric has tracked 19,010,680 research outputs across all sources so far. This one has received more attention than most of these and is in the 68th percentile.
So far Altmetric has tracked 1,012 research outputs from this source. They receive a mean Attention Score of 4.6. This one has gotten more attention than average, scoring higher than 71% 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 290,403 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 62% of its contemporaries.
We're also able to compare this research output to 8 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