| Title |
Does a Duty of Disclosure Foster Special Treatment of Genetic Research Participants?
|
|---|---|
| Published in |
Journal of Genetic Counseling, May 2013
|
| DOI | 10.1007/s10897-013-9597-z |
| Pubmed ID | |
| Authors |
Robin Z. Hayeems, Fiona A. Miller, Jessica P. Bytautas, Li Li |
| Abstract |
The principle that research participants not receive enhanced care compared to non-participants may be challenged by a duty to disclose genetic research results, especially where care is otherwise inaccessible. Autism researchers' attitudes toward providing enhanced care to study participants were analyzed quantitatively using descriptive and multivariate analyses of survey data and qualitatively through thematic analysis of interview data. Approximately half of survey respondents (n = 168, RR = 44 %) agreed they should provide additional knowledge (52 %) or services (48 %) to study participants that may not be available to non-participants. Qualitatively (n = 23), respondents were motivated by the notion of reciprocity but highlighted tensions when research enables access to expertise and therapeutic resources that are otherwise difficult to obtain. For researchers, feeling obliged to report research results may be in conflict with the obligation to avoid special treatment of research participants; this may in turn threaten principles of voluntariness, autonomy, and justice. |
X Demographics
The data shown below were collected from the profile of 1 X user who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 30 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 30 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 7 | 23% |
| Researcher | 5 | 17% |
| Student > Ph. D. Student | 4 | 13% |
| Student > Doctoral Student | 3 | 10% |
| Professor | 2 | 7% |
| Other | 5 | 17% |
| Unknown | 4 | 13% |
| Readers by discipline | Count | As % |
|---|---|---|
| Psychology | 7 | 23% |
| Biochemistry, Genetics and Molecular Biology | 3 | 10% |
| Agricultural and Biological Sciences | 3 | 10% |
| Medicine and Dentistry | 2 | 7% |
| Social Sciences | 2 | 7% |
| Other | 6 | 20% |
| Unknown | 7 | 23% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. 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 23 September 2013.
All research outputs
#15,280,625
of 22,723,682 outputs
Outputs from Journal of Genetic Counseling
#771
of 1,141 outputs
Outputs of similar age
#121,377
of 196,386 outputs
Outputs of similar age from Journal of Genetic Counseling
#17
of 22 outputs
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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 21st percentile – i.e., 21% of its peers scored the same or lower than it.
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We're also able to compare this research output to 22 others from the same source and published within six weeks on either side of this one. This one is in the 22nd percentile – i.e., 22% of its contemporaries scored the same or lower than it.