Table 2 Frequency with which 100,000 Genomes Project consent form topics were included in the discussion
Topic | Frequency topic included in discussion |
|---|---|
What personal health data will be accessed and how it will be used | 20 |
All information will be confidential | 20 |
Information about main findings (including potential benefit to patient) | 20 |
Participant can withdraw any time | 20 |
Participant can choose whether they want to receive secondary findings | 19 |
Information generated may have implications for participant's family members | 19 |
Checking the participant has read the PIS and/or had opportunity to ask questions about PIS content | 17 |
Information about giving blood and future samples | 17 |
Commercial companies can access the participant’s data | 17 |
The participant may be contacted by the clinical or project team in the future | 17 |
Results may not be able to provide a diagnosis or change the participant’s care | 17 |
Results may not be returned in a time frame that is clinically useful | 17 |
How the participant's samples will be used | 16 |
The participant will not benefit financially | 16 |
Other findings (outside of agreed secondary findings) will not be routinely returned | 16 |
Participation in the 100,000 Genomes Project is voluntary | 15 |
Declining to take part in the 100,000 Genomes Project won’t affect the care the participant receives | 13 |
Uncertainty about disease risks associated with secondary findings | 13 |
Participant can change mind about secondary findings (through opt-in and opt-out forms) | 8 |
