| Title |
Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing
|
|---|---|
| Published in |
Journal of Genetic Counseling, June 2016
|
| DOI | 10.1007/s10897-016-9987-0 |
| Pubmed ID | |
| Authors |
Michele C. Gornick, Aaron M. Scherer, Erica J. Sutton, Kerry A. Ryan, Nicole L. Exe, Ming Li, Wendy R. Uhlmann, Scott Y.H. Kim, J. Scott Roberts, Raymond G. De Vries |
| Abstract |
The increased use of genomic sequencing in clinical diagnostics and therapeutics makes imperative the development of guidelines and policies about how to handle secondary findings. For reasons both practical and ethical, the creation of these guidelines must take into consideration the informed opinions of the lay public. As part of a larger Clinical Sequencing Exploratory Research (CSER) consortium project, we organized a deliberative democracy (DD) session that engaged 66 participants in dialogue about the benefits and risks associated with the return of secondary findings from clinical genomic sequencing. Participants were educated about the scientific and ethical aspects of the disclosure of secondary findings by experts in medical genetics and bioethics, and then engaged in facilitated discussion of policy options for the disclosure of three types of secondary findings: 1) medically actionable results; 2) adult onset disorders found in children; and 3) carrier status. Participants' opinions were collected via surveys administered one month before, immediately following, and one month after the DD session. Post DD session, participants were significantly more willing to support policies that do not allow access to secondary findings related to adult onset conditions in children (Χ (2) (2, N = 62) = 13.300, p = 0.001) or carrier status (Χ (2) (2, N = 60) = 11.375, p = 0.003). After one month, the level of support for the policy denying access to secondary findings regarding adult-onset conditions remained significantly higher than the pre-DD level, although less than immediately post-DD (Χ (2) (1, N = 60) = 2.465, p = 0.041). Our findings suggest that education and deliberation enhance public appreciation of the scientific and ethical complexities of genome sequencing. |
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 % |
|---|---|---|
| Scientists | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 56 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 56 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 11 | 20% |
| Researcher | 9 | 16% |
| Student > Ph. D. Student | 7 | 13% |
| Professor | 4 | 7% |
| Student > Bachelor | 2 | 4% |
| Other | 10 | 18% |
| Unknown | 13 | 23% |
| Readers by discipline | Count | As % |
|---|---|---|
| Social Sciences | 13 | 23% |
| Biochemistry, Genetics and Molecular Biology | 8 | 14% |
| Medicine and Dentistry | 6 | 11% |
| Agricultural and Biological Sciences | 4 | 7% |
| Nursing and Health Professions | 2 | 4% |
| Other | 7 | 13% |
| Unknown | 16 | 29% |
Attention Score in Context
This research output has an Altmetric Attention Score of 13. 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 11 November 2022.
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#2,525,611
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Outputs from Journal of Genetic Counseling
#110
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#43,211
of 330,442 outputs
Outputs of similar age from Journal of Genetic Counseling
#3
of 27 outputs
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We're also able to compare this research output to 27 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 92% of its contemporaries.