| Title |
Effect of deliberation on the public’s attitudes toward consent policies for biobank research
|
|---|---|
| Published in |
European Journal of Human Genetics, January 2018
|
| DOI | 10.1038/s41431-017-0063-5 |
| Pubmed ID | |
| Authors |
Tom Tomlinson, Raymond G. De Vries, H. Myra Kim, Linda Gordon, Kerry A. Ryan, Chris D. Krenz, Scott Jewell, Scott Y. H. Kim |
| Abstract |
In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent. |
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 % |
|---|---|---|
| United States | 1 | 33% |
| Unknown | 2 | 67% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Practitioners (doctors, other healthcare professionals) | 1 | 33% |
| Members of the public | 1 | 33% |
| Scientists | 1 | 33% |
Mendeley readers
The data shown below were compiled from readership statistics for 36 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 36 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 9 | 25% |
| Student > Ph. D. Student | 5 | 14% |
| Student > Master | 4 | 11% |
| Student > Doctoral Student | 2 | 6% |
| Professor > Associate Professor | 2 | 6% |
| Other | 1 | 3% |
| Unknown | 13 | 36% |
| Readers by discipline | Count | As % |
|---|---|---|
| Social Sciences | 10 | 28% |
| Medicine and Dentistry | 6 | 17% |
| Biochemistry, Genetics and Molecular Biology | 1 | 3% |
| Business, Management and Accounting | 1 | 3% |
| Environmental Science | 1 | 3% |
| Other | 4 | 11% |
| Unknown | 13 | 36% |
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 22 January 2018.
All research outputs
#16,317,939
of 24,810,360 outputs
Outputs from European Journal of Human Genetics
#2,907
of 3,616 outputs
Outputs of similar age
#268,463
of 452,849 outputs
Outputs of similar age from European Journal of Human Genetics
#46
of 70 outputs
Altmetric has tracked 24,810,360 research outputs across all sources so far. This one is in the 32nd percentile – i.e., 32% of other outputs scored the same or lower than it.
So far Altmetric has tracked 3,616 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 10.5. This one is in the 17th percentile – i.e., 17% 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 452,849 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 37th percentile – i.e., 37% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 70 others from the same source and published within six weeks on either side of this one. This one is in the 28th percentile – i.e., 28% of its contemporaries scored the same or lower than it.