Millennium Cohort Study Ethical Review and Consent Authors: Peter Shepherd, Emily Gilbert Second Edition February 2019 Centre for Longitudinal Studies Following lives from birth through the adult years i www.cls.ucl.ac.uk CLS is an ESRC Resource Centre based at the Institute of Education, London First published in 2019 by the Centre for Longitudinal Studies UCL Institute of Education 20 Bedford Way London WC1H 0AL www.cls.ucl.ac.uk © Centre for Longitudinal Studies The Centre for Longitudinal Studies (CLS) is an ESRC Resource Centre based at the Institution of Education. It provides support and facilities for those using the three internationally-renowned birth cohort studies: the National Child Development Study (1958), the 1970 British Cohort Study and the Millennium Cohort Study (2000). CLS conducts research using the birth cohort study data, with a special interest in family life and parenting, family economics, youth life course transitions and basic skills. The views expressed in this work are those of the author(s) (amend as necessary) and do not necessarily reflect the views of the Economic and Social Research Council. All errors and omissions remain those of the author(s). This document is available in alternative formats. Please contact the Centre for Longitudinal Studies. tel: +44 (0)20 7612 6875 email: [email protected] 1 Table of Contents Introduction ......................................................................................................................... 4 Background ......................................................................................................................... 4 MCS and ethical review ...................................................................................................... 4 Summary of MCS MREC ethical approval 2000-2015 ....................................................... 5 MCS and consent ................................................................................................................ 5 MCS1 Consents ................................................................................................................ 6 MCS2 Consents ................................................................................................................ 7 MCS3 Consents .............................................................................................................. 10 MCS4 Consents .............................................................................................................. 13 MCS5 Consents .............................................................................................................. 17 MCS6 Consents .............................................................................................................. 19 Further information ........................................................................................................... 21 Annex: Examples of letters, leaflets and consent forms................................................ 22 MCS1 .............................................................................................................................. 23 DSS Opt-out letter: English .......................................................................................... 23 Study leaflet: English ................................................................................................... 24 Advance letter .............................................................................................................. 26 Information Sheet ......................................................................................................... 27 Consent Forms ............................................................................................................ 29 MCS2 .............................................................................................................................. 30 Advance information sheet .............................................................................................. 31 Advance letters ............................................................................................................ 35 Consent forms ............................................................................................................. 36 MCS3 .............................................................................................................................. 40 Pre-notification letter: England, Wales and Scotland .................................................... 41 Advance letter: England and Scotland ......................................................................... 42 Leaflet sent with advance letter: England ..................................................................... 43 Second leaflet: England, Scotland and Wales .............................................................. 45 Consent forms: England ............................................................................................... 47 Northern Ireland, Scotland and Wales .......................................................................... 55 MCS4 .............................................................................................................................. 61 Pre-notification letter: Productive England Wales Scotland .......................................... 62 Advance letter: England, Scotland ............................................................................... 63 2 Leaflet sent with advance letter .................................................................................... 64 Second leaflet .............................................................................................................. 66 Child leaflet .................................................................................................................. 68 Information from other sources leaflet .......................................................................... 70 Consent forms ............................................................................................................. 72 MCS5 .............................................................................................................................. 78 Pre-notification mailing ................................................................................................. 79 Advance leaflet for parents (England and Wales) ......................................................... 80 Advance letter .............................................................................................................. 81 Advane leaflet for child (England and Wales) ............................................................... 82 Advance letter for child ................................................................................................. 83 Child elements leaflet ................................................................................................... 84 Consent form (Child) – England and Wales ................................................................. 91 Consent form (Child elements) – England and Wales .................................................. 96 Consent form (Main parent) ........................................................................................ 96 Consent form (Partner) ................................................................................................ 98 Letter from parent to teacher ........................................................................................ 99 MCS6 ............................................................................................................................ 100 Prenotification mailing ................................................................................................ 101 Advance letter for study members .............................................................................. 103 Advance letter for parents .......................................................................................... 104 Advance leaflet for study members ............................................................................ 105 Advance leaflet for parents ........................................................................................ 111 Consent forms ........................................................................................................... 117 3 Introduction This note reports on the approach adopted to ethical review and informed consent for the various stages of the Millennium Cohort Study (MCS) - a continuing, multi-disciplinary longitudinal study which takes as its subjects all those born in selected areas of England, Scotland, Wales and Northern Ireland over a 17 month period in 2000-2002. Below, a brief summary of the background to the study is followed by an account of how the approach to ethical review and consent has changed over the course of the study to date. Examples of letters, leaflets and consent forms used for various MCS surveys are provided in an Annex. Background The Millennium Cohort Study (MCS) is a multi-disciplinary research project following the lives of around 19,000 children born in the UK in 2000-2. It is the most recent of Britain’s world-renowned national longitudinal birth cohort studies. The study has been tracking the Millennium children through their early childhood years and plans to follow them into adulthood. It collects information on the children’s siblings and parents. MCS’s field of enquiry covers such diverse topics as parenting; childcare; school choice; child behaviour and