| Title |
Readability of informed consent forms for whole-exome and whole-genome sequencing
|
|---|---|
| Published in |
Journal of Community Genetics, August 2017
|
| DOI | 10.1007/s12687-017-0324-6 |
| Pubmed ID | |
| Authors |
Emilia Niemiec, Danya F. Vears, Pascal Borry, Heidi Carmen Howard |
| Abstract |
Whole-exome and whole-genome sequencing (WES, WGS) can generate an unprecedented amount of complex information, making the informed consent (IC) process challenging. The aim of our study was to assess the readability of English IC forms for clinical whole-exome and whole-genome sequencing using the SMOG and Flesch-Kincaid formulas. We analysed 36 forms, most of which were from US providers. The median readability grade levels were 14.75 (the SMOG formula) and 12.2 (the Flesch-Kincaid formula); these values indicate the years of education after which a person would be able to understand a text studied. All forms studied seem to fail to meet the average recommended readability grade level of 8 (e.g. by Institutional Review Boards of US medical schools) for IC forms, indicating that the content of the forms may not be comprehensible to many patients. The sections aimed at health care professionals (HCPs) in the forms indicate that HCPs should be responsible for explaining IC information to the patients. However, WES and WGS may be increasingly offered by primary care professionals who may not (yet) have sufficient training to be able to communicate effectively with patients about genomics. Therefore, to secure an adequate, truly informed consent process, the task of developing good, legible examples of IC forms along with educating HCPs in genomics should be taken seriously, and adequate resources should be allocated to enable these tasks. |
X Demographics
The data shown below were collected from the profiles of 25 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 Kingdom | 6 | 24% |
| Canada | 2 | 8% |
| Netherlands | 2 | 8% |
| Saudi Arabia | 1 | 4% |
| Austria | 1 | 4% |
| Portugal | 1 | 4% |
| Spain | 1 | 4% |
| Australia | 1 | 4% |
| France | 1 | 4% |
| Other | 2 | 8% |
| Unknown | 7 | 28% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 13 | 52% |
| Scientists | 10 | 40% |
| Practitioners (doctors, other healthcare professionals) | 2 | 8% |
Mendeley readers
The data shown below were compiled from readership statistics for 46 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 46 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 8 | 17% |
| Student > Ph. D. Student | 6 | 13% |
| Student > Master | 5 | 11% |
| Student > Doctoral Student | 4 | 9% |
| Other | 3 | 7% |
| Other | 9 | 20% |
| Unknown | 11 | 24% |
| Readers by discipline | Count | As % |
|---|---|---|
| Biochemistry, Genetics and Molecular Biology | 7 | 15% |
| Medicine and Dentistry | 6 | 13% |
| Psychology | 5 | 11% |
| Social Sciences | 4 | 9% |
| Nursing and Health Professions | 3 | 7% |
| Other | 8 | 17% |
| Unknown | 13 | 28% |
Attention Score in Context
This research output has an Altmetric Attention Score of 16. 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 18 September 2017.
All research outputs
#1,927,664
of 22,999,744 outputs
Outputs from Journal of Community Genetics
#31
of 369 outputs
Outputs of similar age
#39,619
of 316,373 outputs
Outputs of similar age from Journal of Community Genetics
#5
of 17 outputs
Altmetric has tracked 22,999,744 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 91st percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 369 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.2. This one has done particularly well, scoring higher than 91% 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 316,373 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 87% of its contemporaries.
We're also able to compare this research output to 17 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 70% of its contemporaries.