| Title |
Tailoring the process of informed consent in genetic and genomic research
|
|---|---|
| Published in |
Genome Medicine, March 2010
|
| DOI | 10.1186/gm141 |
| Pubmed ID | |
| Authors |
Charles N Rotimi, Patricia A Marshall |
| Abstract |
Genomic science and associated technologies are facilitating an unprecedented rate of discovery of novel insights into the relationship between human genetic variation and health. The willingness of large numbers of individuals from different ethnic and cultural backgrounds to donate biological samples is one of the major factors behind the success of the ongoing genomic revolution. Although current informed consent documents and processes demonstrate a commitment to ensuring that study participants are well informed of the risks and benefits of participating in genomic studies, there continues to be a need to develop effective new approaches for adequately informing participants of the changing complexities of the scientific and ethical issues that arise in the conduct of genomics research. Examples of these complexities in genomic research include more widespread use of whole-genome sequencing technologies, broad sharing of individual-level data, evolving information technology, the growing demand for the return of genetic results to participants, and changing attitudes about privacy and the expansion of genomics studies to global populations representing diverse cultural, linguistic and socio-economic backgrounds. We highlight and briefly discuss the importance of ten core scientific, cultural and social factors that are particularly relevant to tailoring informed consent in genomic research, and we draw attention to the need for the informed consent document and process to be responsive to the evolving nature of genomic research. |
Mendeley readers
The data shown below were compiled from readership statistics for 100 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 3 | 3% |
| United Kingdom | 1 | 1% |
| South Africa | 1 | 1% |
| Unknown | 95 | 95% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 22 | 22% |
| Student > Master | 15 | 15% |
| Student > Postgraduate | 11 | 11% |
| Student > Ph. D. Student | 9 | 9% |
| Student > Doctoral Student | 7 | 7% |
| Other | 19 | 19% |
| Unknown | 17 | 17% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 30 | 30% |
| Agricultural and Biological Sciences | 13 | 13% |
| Social Sciences | 12 | 12% |
| Biochemistry, Genetics and Molecular Biology | 7 | 7% |
| Nursing and Health Professions | 3 | 3% |
| Other | 19 | 19% |
| Unknown | 16 | 16% |
Attention Score in Context
This research output has an Altmetric Attention Score of 7. 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 04 December 2013.
All research outputs
#5,130,299
of 25,371,288 outputs
Outputs from Genome Medicine
#943
of 1,585 outputs
Outputs of similar age
#21,442
of 103,192 outputs
Outputs of similar age from Genome Medicine
#3
of 10 outputs
Altmetric has tracked 25,371,288 research outputs across all sources so far. Compared to these this one has done well and is in the 79th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,585 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 26.8. This one is in the 40th percentile – i.e., 40% 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 103,192 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 79% of its contemporaries.
We're also able to compare this research output to 10 others from the same source and published within six weeks on either side of this one. This one has scored higher than 7 of them.