Table 2.
Characteristics of dataset initiatives (N = 22)
| Characteristic | n (%*) |
|---|---|
| Primary role | |
| Research | 3 (14%) |
| Interpretation | 7 (32%) |
| Repository | 5 (23%) |
| Registry | 2 (9%) |
| Matchmaking | 2 (9%) |
| Platform | 3 (14%) |
| Date launched | |
| Before 2011 | 8 (36%) |
| 2011 to 2014 | 6 (27%) |
| 2015 to 2018 | 8 (36%) |
| Primary institutional affiliation | |
| Commercial | 6 (27%) |
| Academic | 5 (23%) |
| Governmental | 1 (5%) |
| Independent non-profit | 4 (18%) |
| None | 6 (27%) |
| Potential financial implications** | |
| Free to participate | 16 (73%) |
| Cost to participate | 6 (27%) |
| Paid to participate | 4 (18%) |
| Potential inputs** | |
| Biospecimens | 8 (36%) |
| Genetic data | 22 (100%) |
| Survey data | 14 (64%) |
| Social media or fitness data | 5 (23%) |
| Analysis | 10 (45%) |
| Potential non-IP returns** | |
| Raw genetic data | 5 (23%) |
| Ancestry or relative information | 5 (23%) |
| Health, wellness, or trait information | 16 (73%) |
| Scientific training | 2 (9%) |
| Educational credit | 2 (9%) |
| Research matchmaking | 11 (50%) |
| Participant matchmaking | 13 (59%) |
* Due to rounding, percentages in each category may not add to 100%
** Characteristics in this category are not mutually exclusive