Who's participated in the survey so far?
Most are female (86%), age between 19-50 (50%), white (88%), and have some college education (77%).
Were they interested in accessing DNA information?
Most are interested (91%) in accessing DNA information.
Roughly 44% of people have used DNA information in their healthcare.
Most are just curious. Many want to know more about their health and figure out what to do next. Several have a rare disease and are involved in research.
What DNA service have most people done?
The majority (40%) report having diagnostic testing for some adult onset illness “so that they could be diagnosed correctly”. Others (20%) had carrier testing and research testing. (A carrier is an individual who carries and is capable of passing on to their children a genetic change or mutation associated with a disease and for which they may or may not display disease symptoms.) Almost 37% have participated in research.
Healthcare providers (HCP) are important to those receiving DNA information. Are Health Care Providers (HCP) meeting their needs?
Most respondents felt HCP provided information needed (65%).
However, only 53% felt they got the services needed.
And only 47% felt they were referred for services needed.
37% felt they did not get support needed and 52% felt they could have benefitted from additional resources.
Looks like an area where HCP may still need to learn and use more DNA information in practice.
It’s great to see that many of you would be willing to contribute more to this website by providing additional information about your experiences.
Most would be willing to be interviewed (73%).
Many would be willing to complete a survey (73%).
63% would be willing to contribute a story.
A lot (60%) would be willing to do a one year follow-up survey.
Fewer would be willing to submit a video story (27%) or do a family survey (33%).