| Title |
Personalized Genomic Results: Analysis of Informational Needs
|
|---|---|
| Published in |
Journal of Genetic Counseling, February 2014
|
| DOI | 10.1007/s10897-014-9693-8 |
| Pubmed ID | |
| Authors |
Tara J. Schmidlen, Lisa Wawak, Rachel Kasper, J. Felipe García‐España, Michael F. Christman, Erynn S. Gordon |
| Abstract |
Use of genomic information in healthcare is increasing; however data on the needs of consumers of genomic information is limited. The Coriell Personalized Medicine Collaborative (CPMC) is a longitudinal study investigating the utility of personalized medicine. Participants receive results reflecting risk of common complex conditions and drug-gene pairs deemed actionable by an external review board. To explore the needs of individuals receiving genomic information we reviewed all genetic counseling sessions with CPMC participants. A retrospective qualitative review of notes from 157 genetic counseling inquiries was conducted. Notes were coded for salient themes. Five primary themes; "understanding risk", "basic genetics", "complex disease genetics", "what do I do now?" and "other" were identified. Further review revealed that participants had difficulty with basic genetic concepts, confused relative and absolute risks, and attributed too high a risk burden to individual single nucleotide polymorphisms (SNPs). Despite these hurdles, counseled participants recognized that behavior changes could potentially mitigate risk and there were few comments alluding to an overly deterministic or fatalistic interpretation of results. Participants appeared to recognize the multifactorial nature of the diseases for which results were provided; however education to understand the complexities of genomic risk information was often needed. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| South Africa | 1 | 50% |
| United Kingdom | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 50% |
| Scientists | 1 | 50% |
Mendeley readers
The data shown below were compiled from readership statistics for 55 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Canada | 2 | 4% |
| Unknown | 53 | 96% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 21 | 38% |
| Student > Ph. D. Student | 7 | 13% |
| Researcher | 6 | 11% |
| Student > Bachelor | 4 | 7% |
| Other | 3 | 5% |
| Other | 7 | 13% |
| Unknown | 7 | 13% |
| Readers by discipline | Count | As % |
|---|---|---|
| Biochemistry, Genetics and Molecular Biology | 11 | 20% |
| Medicine and Dentistry | 10 | 18% |
| Agricultural and Biological Sciences | 8 | 15% |
| Social Sciences | 7 | 13% |
| Nursing and Health Professions | 4 | 7% |
| Other | 6 | 11% |
| Unknown | 9 | 16% |
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 15 February 2014.
All research outputs
#15,293,290
of 22,743,667 outputs
Outputs from Journal of Genetic Counseling
#771
of 1,141 outputs
Outputs of similar age
#189,713
of 307,468 outputs
Outputs of similar age from Journal of Genetic Counseling
#11
of 16 outputs
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