Table 2.
Risk Knowledge and Risk to Family by Consent Status
| Risk knowledge items | Authorized donation, n = 46 | Refused donation, n = 14 |
|---|---|---|
| Researchers using the donated tissue will know the patient's exact identity | 32 (69.6) | 6 (42.8)* |
| There is a slight risk that the patient's identity could be found out | 27 (58.7) | 4 (28.7)* |
| There would have been a slight risk that the identity of my family could be found out | 20 (43.5) | 4 (28.7) |
| If I signed the consent form and the donated tissue were used for a research project, I would have been told what they learned about patient's health | 30 (65.2) | 5 (35.7) |
| Risk to family | Authorized donation, n = 55 | Refused donation, n = 30 |
|---|---|---|
| Was the topic of risk to family associated with the release of genetic information discussed with the requester? | 28 (51.0) | 7 (23.3) |
| Was risk to family a topic you wanted to know about? | 35 (63.6) | 13 (43.3) |
| Did risk to family influence your decision to donate tissue for research purposes? | 13 (23.6) | 11 (36.7) |
| Was the topic of no direct benefits of participation discussed with the requester? | 37 (67.3) | 8 (27.6) |
| Was no direct benefits of participation a topic you wanted to know about? | 31 (56.4) | 8 (27.6) |
| Did no direct benefits of participation influence your decision to donate tissue for research purposes? | 6 (10.9) | 4 (13.8) |
Risk knowledge values expressed as count (percent) answering correctly. Knowledge questions were not administered to 15 FDMs who reported poor or unreliable recall of the GTEx request. Risk to family values expressed as n (%) endorsing “yes.”
*
p < 0.05.
GTEx, Genotype-Tissue Expression Project.