Table 1 Demographics of community leader key informants. Demographic information summarised from the sample of key informants who completed demographic surveys (n = 14)
|  |  | n = 14 |  |
|---|---|---|---|
Characteristics | Â | Frequency | Percent (%) of study populationa |
1. Age | Mean age, years (range; SD) | 46 (30–60); 9.5 | |
32 and under | 1 | 7% | |
33–41 | 3 | 21% | |
42–54 | 2 | 14% | |
55 and over | 2 | 14% | |
2. Gender identity | Male | 4 | 29% |
Female | 9 | 64% | |
Transgender | 1 | 7% | |
3. Ethnicity | Hispanic or Latino | 3 | 21% |
Not Hispanic or Latino | 11 | 79% | |
4. Race | American Indian/Alaska Native | 1 | 7% |
Asian | 3 | 21% | |
Black or African American | 1 | 7% | |
Native Hawaiian or other Pacific Islander | 1 | 7% | |
White | 8 | 57% | |
Other | 2 | 14% | |
5. Occupation | Medical/Genetics/Public Health Researcher, Community Health Advocate, Community Data Organiser, Web Developer, Policy Advisor/Deputy Director, Volunteer/Board Director for Rare Disease Foundation, Consultant, Patient Advocate, Attorney, Physician, Professor | ||
6. Highest level of education completed | Did not complete high school | 0 | 0% |
High school graduate/GED | 1 | 7% | |
Some college | 0 | 0% | |
College graduate | 5 | 36% | |
Post-graduate (e.g. MA, MS, MD, PhD) | 8 | 57% | |
7. Statement that best describes knowledge of genetics | I know nothing about genetics | 0 | 0% |
I remember some information about genetics from school | 4 | 29% | |
I am well informed about genetics | 10 | 71% | |
8. Community-based organisation? | Yes | 6 | 43% |
No | 5 | 36% | |
Doesn’t apply | 3 | 21% | |
9. Description of community or stakeholders | Community health centres, caregivers and patients of rare disease communities, tribal leaders and community members, non-profit organisations prioritising underserved populations, LGBTQ community, previvors and survivors with hereditary cancers | ||
10.Number of employees at organization | < 10 | 4 | 29% |
11 to 50 | 3 | 21% | |
> 50 | 4 | 29% | |
Doesn’t apply | 3 | 21% | |
11. Organization’s approximate annual operating budget | < 1 million | 4 | 29% |
1 to 3 million | 3 | 21% | |
> 3 million | 3 | 21% | |
Doesn’t apply | 4 | 29% | |
12. If applicable, populations served and/or represented by organisation | American Indian/Alaska Native | 5 | 36% |
Asian | 5 | 36% | |
Black or African American | 3 | 21% | |
Native Hawaiian or other Pacific Islander | 5 | 36% | |
White | 3 | 21% | |
Hispanic or Latino | 4 | 29% | |
Other | 3 | 21% | |
13. Ever had a genetic test? | Yes | 9 | 64% |
No | 3 | 21% | |
Don’t know | 1 | 7% | |
Pending | 1 | 7% | |
14. Ever participated in biomedical research? | Yes | 8 | 57% |
No | 5 | 36% | |
No response | 1 | 7% | |
15. Ever participated in genetic research? | Yes | 5 | 36% |
No | 8 | 57% | |
No response | 1 | 7% | |