| Title |
Variation among Consent Forms for Clinical Whole Exome Sequencing
|
|---|---|
| Published in |
Journal of Genetic Counseling, July 2017
|
| DOI | 10.1007/s10897-017-0127-2 |
| Pubmed ID | |
| Authors |
Sara A. Fowler, Carol J. Saunders, Mark A. Hoffman |
| Abstract |
The goal of this study was to explore variation among informed consent documents for clinical whole exome sequencing (WES) in order to identify the level of consistency with the recommendations from the American College of Medical Genetics and Genomics (ACMG) and the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) regarding informed consent for clinical WES. Recommendations were organized into a framework of key points for analysis. Content analysis was conducted on a sample of informed consent documents for clinical WES downloaded from 18 laboratory websites. We observed considerable variability in the content of informed consent documents among the sample of 18 laboratories. The mean Flesch-Kincaid Grade Level, a measure of readability, of the consent forms was 10.8, above the recommended 8th grade level. For each of the individual ACMG and Bioethics Commission recommendations, the frequency of inclusion ranged from 11% to 100%. For the overall list of 18 consent items, inclusion ranged from 11 to 17 items (Mean = 13.44, Mode = 14). This analysis will be useful to laboratories that wish to create informed consent documents that comply with these recommendations. The consistent use of standardized informed consent process could improve communication between clinicians and patients and increase understanding of genetic testing. |
X Demographics
The data shown below were collected from the profiles of 9 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 3 | 33% |
| United Kingdom | 3 | 33% |
| Australia | 1 | 11% |
| Saudi Arabia | 1 | 11% |
| Canada | 1 | 11% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Scientists | 6 | 67% |
| Members of the public | 2 | 22% |
| Practitioners (doctors, other healthcare professionals) | 1 | 11% |
Mendeley readers
The data shown below were compiled from readership statistics for 42 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 42 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 8 | 19% |
| Other | 5 | 12% |
| Student > Master | 5 | 12% |
| Student > Bachelor | 3 | 7% |
| Student > Ph. D. Student | 2 | 5% |
| Other | 6 | 14% |
| Unknown | 13 | 31% |
| Readers by discipline | Count | As % |
|---|---|---|
| Biochemistry, Genetics and Molecular Biology | 12 | 29% |
| Medicine and Dentistry | 7 | 17% |
| Agricultural and Biological Sciences | 2 | 5% |
| Social Sciences | 2 | 5% |
| Psychology | 1 | 2% |
| Other | 3 | 7% |
| Unknown | 15 | 36% |
Attention Score in Context
This research output has an Altmetric Attention Score of 6. 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 02 May 2018.
All research outputs
#5,969,566
of 24,267,449 outputs
Outputs from Journal of Genetic Counseling
#324
of 1,225 outputs
Outputs of similar age
#88,135
of 316,091 outputs
Outputs of similar age from Journal of Genetic Counseling
#8
of 29 outputs
Altmetric has tracked 24,267,449 research outputs across all sources so far. Compared to these this one has done well and is in the 75th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,225 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.0. This one has gotten more attention than average, scoring higher than 73% 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 316,091 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 72% of its contemporaries.
We're also able to compare this research output to 29 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 72% of its contemporaries.