UK Millennium Cohort Study

1. UK Millennium Cohort Study Issues of Consent Kate Smith & Lisa Calderwood Centre for Longitudinal Studies Institute of Education, University of London EUCONET Workshop February 17-18 2009

2. About the Millennium Cohort Study • Millennium Cohort Study (MCS) is a birth cohort study of nearly 19,000 children born in 400 areas of the UK • Children in England and Wales wereborn between:01/09/2000 and 31/08/2001 • Children in Scotland and Northern Ireland were born between: 24/11/2000 and 10/1/2002

3. MCS Surveys • 9 month Survey in 2001/2002 • Age 3 Survey in 2003/2004 • Age 5 Survey in 2006 • Age 7 Survey Jan 2008-Jan2009 • Next follow-up likely when the children are aged 10/11

4. Objectives of MCS • To chart the initial conditions of the social, economic and health advantages and disadvantages facing new children in the new century and their consequences • To capture information for the future • To compare patterns of development with other cohorts • To collect information on previously neglected topics, such as father’s involvement and child care • To investigate the wider social ecology of the family, including community and services, splicing in geo-coded data

5. MCS Study Design • Cohort born over a 12 month period • Includes children in England, Scotland, Wales and Northern Ireland • Geographically clustered by electoral ward • Over represents children from different ethnic groups and those in deprived areas

6. MCS Response: Families

7. Content of MCS Surveys

8. MCS Add-on Projects • Linkage to administrative data • Maternity and birth registration • Hospital episodes • School Records • Benefit and NI Records • Geo-coded data • Postal survey of mothers who had assisted fertility treatment • Nursery Observations  • Every Tooth Tells a Story • Non response project

9. Consent in MCS • Initial sample – opt in vs opt out • Birth registration – opt in – rejected due to anticipated non response • Child benefit register – opt out - used • Informed consent in MCS needed for 2 main purposes: data collection & linkage • data collection – from MCS2 written consent from each individual & for each individual element of data collection at each survey • linkage – written consent for each element of linkage & from each individual

10. Consents for child data 9 months linkage to birth & maternity records & parent NHSCR record of child Age 3 cognitive & physical assessments parent saliva sample parent linkage to child’s hospital records of disease parent & accident to age 7

11. Consents for child data Age 5 cognitive & physical assessments parent linkage to child’s hospital records of disease parent & accident to age 7 (if not given at age 3) linkage to foundation stage profile (England)/ parent postal survey of teachers (rest of UK) older siblings paper self completion (age 10-15) parent Age 7 cognitive & physical assessments parent physical activity monitor parent child self-completion parent class teacher survey parent linkage to: education records to age 16 parent health records to age 14 parent

12. Informing the MCS children • Age 7 - child’s leaflet ‘What would you like me to do’ • Age 8 – child feedback

13. MCS - Future Issues for interviewing Children • Making children the focus of the survey • approaching them within their own right • Keeping children interested for the future • Methodologies

14. Issues for discussion • Should written consent or verbal agreement be required for data collection in general? • Pros: unambiguous protection for interviewer & survey when dealing w ‘sensitive’ issues such as children • Cons: time consuming potential ‘hit’ on response, esp at 1st survey

15. Issues for discussion • Parents as ‘gate-keepers • at what age should this stop & children become their own agents? 16? • at what age are children old enough to giver their own written consent to: a) data collection b) info from other sources – data linkage to admin records & other people such as teachers?

16. MCS - Future Issues for interviewing Children