Table 3 Two profiles of respondents
Profiling respondents… a | |
|---|---|
Profile A (n = 120; 58.5%) | Profile B (n = 65; 31.8%) |
- Would offer WGS to all their patients or do so in limited circumstances | - Would not offer WGS to their patients, or did not know about the uses of WGS |
- Treating mainly children | - Treating mainly adults |
Returning WGS results to patients by Profile | |
- An unexpected result should always be about a disease for which effective preventive interventions or treatment are available | |
No difference between profiles | |
- An unexpected result should always indicate a high probability to develop a specific disease (as opposed to a result indicating a low probability to develop a disease | |
Profile A tended to agree (p < .001) | |
- An unexpected result should always be about a disease whose onset may be expected in a near future | |
Profile A tended to agree (p < .001) | |
- Parents or other proxies should remain free to choose not to know about unexpected finding in the patient’s W GS, including findings about preventable or treatable disease | |
Profile B tended to agree (p < .001) | |
- Conveying genetic results with uncertain clinical significance if requested by parents or proxies | |
Profile A respondents were more inclined (p < .001) | |
- Analysis of genomics data should be limited to the genes likely to be relevant to the patient’s specific medical condition, so as to limit unexpected findings | |
Profile A tended to agree (p < .001) | |
Recontacting patients by Profile | |
- Neurologists have the responsibility to recontact and inform their patients of clinically significant, newly discovered mutations that were linked to their neurological condition | |
Profile A tended to agree (p < .001) | |
- Neurologists have the responsibility to recontact and inform their patients of clinically significant, newly discovered and for IFs | |
Profile A tended to agree (p < .05) | |
- The responsibility to return results should be for as long as neurologists are treating the patient | |
Profile A tended to agree (p < .05) | |