Table 3.

GenV consent components

Consent component		From
General consent—for primary parent/guardian (usually mothera) and child
1	Access to/retrieval of health, education, social and place-based information including: a. Administrative data spanning physical and mental health, education, social, births and deaths, geographic b. Service & clinical data including individual (e.g. hospitals, GPs) and collated, Electronic Health Records (EHRs), digital data (e.g. MRI scans)	P1
2	Ongoing contact by GenV to a. Collect new information b. Provide information to participants c. Collect additional consent (eg participation in collaborating studies)	P1
3	Updating participant contact details from parent or via public records or information held by agencies	P1
4	Unspecified use of data for future ethically-approved research	P1
5	Sharing and 2-way exchange of data with approved GenV users (e.g. Integrated Studies)	P1
6	Retrieval and use of residual clinical biosamples stored pre/postnatally	P1
7	Collection and use of new biosamples (infant stool swab, breast milk)b	P1
Item-by-item consent—for primary parent/guardian (usually mother) and child
8	Genetic research	P1
9	Collection and use of new biosamples (saliva)	P1
Separate consent—for 2nd parent/guardian (usually father)
10	Participation covering all of the above for 2nd parent	P2
11	Collection and use of new biosamples from 2nd parent (saliva)	P2

P1 = parent consenting on behalf of themselves and the child (usually the mother). P2 = parent consenting for themselves only (usually the father). ^a Only the mother who carried the child can consent for access to her records and retrieval and use of her pre/postnatal biosamples, except in the rare situation where the mother herself has a guardian. ^b Introduced October 2022