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

Total n = 21. The consent form sections relating to “carrier status findings” are not reported here as these were only relevant to a subset of six appointments.

PIS patient information sheet