Table 1.
Demographics of Genomic Research Programs
| Characteristic N=35 (%) | |
|---|---|
| Informant Position | |
| PI | 20 (57%) |
| Co-PI | 8 (23%) |
| Genetic Counselor | 4 (11%) |
| Project Manager | 3 (9%) |
| Geographical Region | |
| Northeast | 9 (26%) |
| Southeast | 11 (31%) |
| Midwest | 3 (9%) |
| Southwest | 3 (9%) |
| West | 6 (16%) |
| Multi-Region | 3 (9%) |
| Number of Research Participants Per Program | |
| <500 | 8 (22%) |
| 500–4,999 | 17 (49%) |
| 5,000–49,999 | 4 (11%) |
| 50,000–199,999 | 3 (9%) |
| >200,000 | 3 (9%) |
| Demographic-Specific Programs | |
| Yes | 26 (74%) |
| No | 9 (26%) |
| Disease-Focused Programs | |
| Yes | 13 (37%) |
| No | 22 (63%) |
| Biobanks | |
| Yes | 5 (14%) |
| No | 30 (86%) |
| Discloser of Genomic Results a | |
| Participants’ Provider | 23 (67%) |
| Genetic Counselor | 19 (55%) |
| Clinical Geneticist | 7 (21%) |
| Return of Results Service | 3 (9%) |
a
Genomic research programs may use more than one discloser to return a result