| Title |
Considering the Benefits and Risks of Research Participants' Access to Sequence Data
|
|---|---|
| Published in |
Genetic Testing, October 2017
|
| DOI | 10.1089/gtmb.2017.0143 |
| Pubmed ID | |
| Authors |
Susanne B. Haga, Bethany Friedman, Gabriele Richard |
| Abstract |
The use of sequencing technologies has greatly expanded in both research and clinical settings. The generation of voluminous datasets has raised several issues regarding data sharing and access. Current regulations require clinical laboratories and some research laboratories to provide access to test data, including sequencing data, directly to patients upon request. There is some controversy over whether this access right may be somewhat broader, encompassing research data as well-a question beyond the scope of this article. It is clear that in the research setting, deposition of sequencing data into public or private databases often occurs, although little information exists about the return of data files to research participants (in contrast to the extensive deliberations regarding return of results). Thus, further consideration of the issue of access to data files is warranted as well as more effort to understand both patients' and research participants' use of the data. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Belgium | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 50% |
| Scientists | 1 | 50% |
Mendeley readers
The data shown below were compiled from readership statistics for 12 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 12 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Lecturer > Senior Lecturer | 1 | 8% |
| Librarian | 1 | 8% |
| Student > Bachelor | 1 | 8% |
| Professor | 1 | 8% |
| Student > Master | 1 | 8% |
| Other | 1 | 8% |
| Unknown | 6 | 50% |
| Readers by discipline | Count | As % |
|---|---|---|
| Agricultural and Biological Sciences | 2 | 17% |
| Social Sciences | 2 | 17% |
| Philosophy | 1 | 8% |
| Medicine and Dentistry | 1 | 8% |
| Unknown | 6 | 50% |
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 22 June 2018.
All research outputs
#17,292,294
of 25,382,440 outputs
Outputs from Genetic Testing
#338
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Outputs of similar age
#215,365
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Outputs of similar age from Genetic Testing
#2
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