Table 2.
Preferences regarding being contacted directly by health professionals about medically actionable genetic risk information.
| n = 1030 | n | % | |
|---|---|---|---|
| What are your thoughts about being told (by a health professional) about genetic information that might show that you are at risk for future health problems that can be prevented (or detected and treated early)? | I would want to be contacted and told that this information exists, and be given the option to find out more or not | 496 | 48.2 |
| I would want to be contacted and told up-front what this information is and what the health risks to me are | 376 | 36.5 | |
| I would not want to be contacted to be offered this type of genetic information | 158 | 15.3 | |
| Thoughts about Letter 1, which did not say which condition the hypothetical family member’s test relates to | I would have felt better informed if the genetic condition had been included in the letter | 749 | 72.7 |
| Including the genetic condition in the letter would have been overwhelming for me at this early stage | 250 | 24.3 | |
| Other | 31 | 3.0 | |
| Thoughts about Letter 2, which contains more information about the genetic condition | I felt better informed from this letter than from the previous letter | 775 | 75.2 |
| It felt overwhelming to have that level of information at this early stage | 231 | 22.4 | |
| Other | 24 | 2.3 | |
| Which letter do you prefer? | Letter 1 (no specific information about the genetic condition) | 217 | 21.1 |
| Letter 2 (specific information about the genetic condition) | 691 | 67.1 | |
| No preference | 122 | 11.8 | |
| How easy was letter 1 to understand? | Very easy to understand | 428 | 41.6 |
| Easy enough to understand | 497 | 48.3 | |
| A bit difficult to understand | 89 | 8.6 | |
| Very difficult to understand | 16 | 1.6 | |
| How easy was letter 2 to understand? | Very easy to understand | 454 | 44.1 |
| Easy enough to understand | 473 | 45.9 | |
| A bit difficult to understand | 91 | 8.8 | |
| Very difficult to understand | 12 | 1.2 | |
| Would you have any privacy concerns about being sent a letter directly by a health professional, using details provided to them by your relative? | No concerns | 878 | 85.2 |
| A little concern | 104 | 10.1 | |
| Significant concerns | 48 | 4.7 | |
| Would you have any other (non-privacy related) concerns about being sent a letter directly in this way? | No concerns | 946 | 91.8 |
| A little concern | 57 | 5.5 | |
| Significant concerns | 27 | 2.6 | |