Table 2. Information given to the volunteer during the process of obtaining consent. This table demonstrates the principal investigator (PI) responses to the question: “during the process of obtaining informed consent from the volunteer by the researcher, information is provided on which of the following?”.
| Answer option(s) | Number of PIs answering ‘Yes’a (total of n=62) |
|
| Current practice n (%) | Ideal practice n (%) | |
| 1. What happens to the patient's personal data | 51 (82) | 26 (42) |
| 2. Contingency plans should any incidental findings be foundb | 54 (87) | 21 (34) |
| 3. Disclosure of any incidental findings to the volunteer's general practitioner/treating clinician | 47 (76) | 16 (26) |
| 4. Disclosure of any incidental findings to the volunteer themselves by a member of the research team | 24 (39) | 16 (26) |
| 5. Whether any incidental findings are likely to be treatable | 13 (21) | 11 (18) |
| 6. Potential benefits of any incidental findings should they be found (e.g. prophylactic intervention) | 16 (26) | 13 (21) |
| 7. Potential harms of any incidental findings should they be found (e.g. medical insurance being affected) | 19 (31) | 19 (31) |
| 8. The extent (if any) of the investigator's responsibility to provide medical services should any incidental finding be found | 26 (42) | 19 (31) |
| 9. Potential future re-contact in anticipation that the data be re-analysed in the future after this project has finished | 23 (37) | 20 (32) |
aPIs were informed that they could choose more than one option.
bExamples are: (a) a suitable mechanism is always in place for disclosure of an incidental finding to the volunteer; (b) the plan is to always not disclose.