Table 2.
Researchers’ rationale for which results should be returned
| Actionable results | |
| For: (85%)a | When you can do something about it, I think it’s a duty, it’s a medical duty, it’s a medical diligence, to do something about it. |
| Because I think it’s part of the mission of trying to improve the quality of life of patients. If [it’s] medically actionable, yes, I think we have an obligation to return that. | |
| Against: (10%) | We’re not in that business. We didn’t promise to do that. The subjects are not expecting it. We have no resources to support this. We have no resources to provide interpretation. And we’re not looking for these things. |
| Research and clinical care should be kept completely separate, that researchers might be overly burdened by having to report, and that participants may be harmed by receiving information that they didn’t really anticipate when they signed up for the study. | |
| Non–medically actionable results | |
| For: (54%) | Participants (and sometimes families) have a “right to know,” and should be given the chance to prepare. |
| Can allow for behavioral change, family planning, end-of-life care, changes in lifestyle including diet and exercise, cognitive enhancement therapies, experimenting with pharmacogenetics or other interventions, and especially increased surveillance/monitoring of health status. | |
| Against: (15%) | If we don’t have the genetic testing at this point that’s going to change the immediate care of that patient, there is no rationale for doing it. |
| The question is, “Is it good or is it bad for the individual?” If it’s something that can be treated and important to recognize as early as possible, then it’s good. But if you can’t do anything about it, it’s a problem. The information is a burden. | |
| Variants of uncertain significance (VUS) | |
| For: (15%) | Some VUS are already being routinely returned anyway. |
| They may be associated with other treatable conditions. | |
| Against: (33%) | Considered to have “no meaning” yet for individual participants. |
| Could potentially cause undue concern or worry among participants, particularly those with existing psychiatric conditions that predispose them to stress, anxiety, or depression. | |
aPercentages reflect proportion of total sample supporting return of a particular result type, and may not add up to 100% due to omission in this table of participants reporting who did not provide a clear response in favor or against offering these results.