| Title |
Informed Consent Form Challenges for Genetic Research in a Developing Arab Country with High Risk for Genetic Disease
|
|---|---|
| Published in |
Journal of Genetic Counseling, September 2014
|
| DOI | 10.1007/s10897-014-9763-y |
| Pubmed ID | |
| Authors |
Satish Chandrasekhar Nair, Halah Ibrahim |
| Abstract |
The prevalence of genetic disease is high in the Middle East, particularly in the United Arab Emirates. Our study assesses the information provided in, and the readability ease of, informed consent forms (ICF) for genetic research studies. A multicenter retrospective cross-sectional review of 54 ICFs was conducted to assess compliance by comparing them with standard good clinical practice guidelines for developing consent forms. Readability of the forms was determined using the Flesch-Kincaid scale. Overall Good Clinical Practice compliance for the ICFs averaged at 63 %. Information regarding privacy, confidentiality, specimen collection and storage were absent from the majority of the ICFs. Readability ease score was low (36.7 ± 4.6) and required college-level (11.8 ± 1.4) reading skills to understand the information. Our study highlights the need to improve the readability and information contained in the ICFs for genetic research studies in our setting. Our findings may be generalized to similar cultures in the Middle East and Asia. |
X Demographics
The data shown below were collected from the profiles of 3 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 3 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 3 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 24 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 24 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Doctoral Student | 4 | 17% |
| Student > Master | 4 | 17% |
| Other | 2 | 8% |
| Student > Bachelor | 2 | 8% |
| Student > Ph. D. Student | 2 | 8% |
| Other | 3 | 13% |
| Unknown | 7 | 29% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 6 | 25% |
| Biochemistry, Genetics and Molecular Biology | 3 | 13% |
| Pharmacology, Toxicology and Pharmaceutical Science | 2 | 8% |
| Business, Management and Accounting | 2 | 8% |
| Nursing and Health Professions | 2 | 8% |
| Other | 2 | 8% |
| Unknown | 7 | 29% |
Attention Score in Context
This research output has an Altmetric Attention Score of 2. 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 07 April 2015.
All research outputs
#14,201,088
of 22,764,165 outputs
Outputs from Journal of Genetic Counseling
#672
of 1,141 outputs
Outputs of similar age
#128,574
of 249,644 outputs
Outputs of similar age from Journal of Genetic Counseling
#11
of 24 outputs
Altmetric has tracked 22,764,165 research outputs across all sources so far. This one is in the 35th percentile – i.e., 35% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,141 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.9. This one is in the 38th percentile – i.e., 38% of its peers scored the same or lower than it.
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 249,644 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 45th percentile – i.e., 45% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 24 others from the same source and published within six weeks on either side of this one. This one is in the 41st percentile – i.e., 41% of its contemporaries scored the same or lower than it.