Table 4. Importance of available resources for return of secondary findings to research participants1.
| Resource | Essential % (n) |
Important % (n) |
Somewhatimportant % (n) |
Notimportant % (n) |
|---|---|---|---|---|
| Qualified staff and/or genetic counselors to educate participants (N=190) | 72.2% (143) | 17.7% (35) | 5.1% (10) | 1.0% (2) |
| Well curated mutation and polymorphism databases (N=188) | 59.6% (118) | 26.3% (52) | 7.1% (14) | 2.0% (4) |
| Guidance for IRBs on returning secondary findings (N=189) | 52.0% (103) | 29.3% (58) | 13.1% (26) | 1.0% (2) |
| Accessible software to efficiently analyze sequence data (N=187) | 46.5% (92) | 29.3% (58) | 15.7% (31) | 3.0% (6) |
| Funding for clinical confirmation of research results in a CLIA laboratory (N=188) | 40.9% (81) | 30.8% (61) | 19.2% (38) | 4.0% (8) |
| Recommended lists of genes for return (N=190) | 33.3% (66) | 31.8% (63) | 22.2% (44) | 8.6% (17) |
| Mechanisms to locate previously enrolled research participants (N=188) | 25.8% (51) | 38.9% (77) | 24.2% (48) | 6.1% (12) |
| Mechanisms to easily and effectively maintain contact with research participants (N=190) | 25.3% (50) | 48.5% (96) | 19.7% (39) | 2.5% (5) |
| Online or video educational materials to educate participants (N=188) | 19.2% (38) | 42.4% (84) | 26.8% (53) | 6.6% (13) |
1
Percentages based on total number of respondents (N=198)