Arguments for and against different options for the feedback of research results
| Feedback policy | Arguments for | Arguments against |
|---|---|---|
| (A) No feedback | Feedback harmful if unexpected; no evidence of benefits; resource implications (clinical validation, no trained personnel); feedback may fuel therapeutic misconception and undermine altruistic research participation | Undermines autonomy; missed opportunity for detection and prevention |
| (B) Severe, clinically actionable* findings | Enhances prevention and detection of disease; targets scarce resources where they will be most effective | How to determine criteria for feedback; may fuel therapeutic misconception and undermine altruism; undermines autonomy to not know; resource intensive |
| (C) All health-related findings regardless of severity and actionability | Overcomes criteria problem of B enhances autonomy; enhances prevention and detection of disease | Psychological harm of knowing untreatable risks social and economic harms; undermines autonomy to not know; resource intensive (required clinical validation, no trained personnel); feedback may fuel therapeutic misconception and undermine altruistic research participation |
| (D) Whole sequence | See C; enhances autonomy; overcomes criteria problem of B | Information may be uninterpretable; see C: no evidence of benefits; resource implications (clinical validation, no trained personnel); feedback may fuel therapeutic misconception and undermine altruistic research participation |
| (E) Research participant chooses feedback option | Maximises autonomy | Overwhelming choice; informed consent process too onerous; resource implications (clinical validation, no trained personnel); feedback may fuel therapeutic misconception and undermine altruistic research participation |
*It should be emphasised that the exact criteria for considering whether a variant is considered to be actionable or not and serious or not is context dependent and will be subject to a range of factors (eg, current knowledge, established treatment practices, available and accessible healthcare resources, researchers’ judgements and ethical or IRB ruling) and may only emerge during the process of seeking ethical approval for the study.