Transcript Child of the New Century

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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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 were
born between:01/09/2000 and 31/08/2001

Children in Scotland and Northern Ireland were born
between: 24/11/2000 and 10/1/2002
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
MCS Response: Families
COUNTRY
Number of
Sampled
Wards
MCS1
Achieved
Sample
MCS2
Achieved
Sample
(Total)
MCS3
Achieved
Sample
(Total)
MCS4
Estimated
Achieved
Sample
(Total)
ENGLAND
200
11532
10050
9717
8873
WALES
73
2761
2261
2181
1973
SCOTLAND
62
2336
1814
1814
1614
N IRELAND
62
1923
1465
1534
1371
TOTAL UK
398
18552
15590
15246
13831
following lives from birth and through the adult years
www.cls.ioe.ac.uk
Content of MCS Surveys
9m
Age 3
Age 5
Age 7




Cognitive assessments



Physical measurements



Saliva Sample

Older Siblings


Interviewer Observations





Interview (and self-completion) with
both resident parents
Teacher Survey
Child self-completion
following lives from birth and through the adult years

www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
Consents for child data
9 months
linkage to birth & maternity records &
parent
NHSCR record of child
Age 3
cognitive & physical assessments
saliva sample
parent
parent
linkage to child’s hospital records of disease
& accident to age 7
parent
following lives from birth and through the adult years
www.cls.ioe.ac.uk
Consents for child data
Age 5
Age 7
cognitive & physical assessments
linkage to child’s hospital records of disease
& accident to age 7 (if not given at age 3)
linkage to foundation stage profile (England)/
postal survey of teachers (rest of UK)
older siblings paper self completion (age 10-15)
parent
parent
cognitive & physical assessments
physical activity monitor
child self-completion
class teacher survey
linkage to: education records to age 16
health records to age 14
parent
parent
parent
parent
parent
parent
following lives from birth and through the adult years
parent
parent
www.cls.ioe.ac.uk
Informing the MCS children

Age 7 - child’s leaflet ‘What would you like me to do’

Age 8 – child feedback
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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
following lives from birth and through the adult years
www.cls.ioe.ac.uk
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?
following lives from birth and through the adult years
www.cls.ioe.ac.uk
MCS - Future Issues for interviewing Children
following lives from birth and through the adult years
www.cls.ioe.ac.uk