Privacy Notice

Privacy Notice for families invited to take part or participating in Generation New Era

Version 6: Applicable from: 23 April 2024

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About Generation New Era
About this privacy notice
Giving and withdrawing your permission to take part in Generation New Era
Data controllers
Lawful basis for processing
Your individual information rights
Personal data we collect about you
Personal information that we collect from other sources
Why we process your data
Who we share your data with
Transfers of data outside of the UK
Data security
How long we keep your data for
Complaints
Cookies
Further information
Version control

About Generation New Era

Generation New Era is a research project commissioned by the Economic and Social Research Council. The study is led by the UCL Centre for Longitudinal Studies (CLS) and is one of several national longitudinal cohort studies at CLS. A longitudinal study collects information from the same people (cohort) over time. Generation New Era will collect rich data on several thousand babies born in November and December 2022 in England, Wales and Scotland and in June and July 2023 in Northern Ireland, when they are around 9-10 months old, and their families. It will capture the economic and social environments that these babies are born into, their health, well-being and early development, including building up a picture of the impacts of COVID-19 and the cost-of-living crisis. The data from the study will be made available to the research and policy community and be used to answer important research questions and to improve families’ lives. The study is managed by the CLS, with support from a consortium of partners including Swansea University in Wales, the University of Edinburgh in Scotland and Ulster University in Northern Ireland

Ipsos (‘the survey agency’) is carrying out the interviews for Generation New Era. Ipsos (market research) Limited is a specialist research agency, commonly known as “Ipsos”. Ipsos is a member of the Market Research Society, and as such they abide by the Market Research Society Code of Conduct and associated regulations and guidelines. Ipsos was chosen to carry out the interviews as they have lots of experience in carrying out similar studies with children and families.

About this privacy notice

CLS (‘we’, ‘our’ and ‘us’) values your contribution to Generation New Era (‘the study’). We respect your privacy and are committed to protecting your personal data. This privacy notice tells you why and how we collect and use your personal data and provides information about your rights. This privacy notice applies to personal data provided to us, by you and about you by third parties. This privacy notice is for anyone whose data that we hold for the research purposes of the study including:

Families invited to take part in the study
Respondents – parents/legal guardians/partners of parents of babies in the study
The babies in the study
Other family or household members

CLS applies to government agencies for a representative and inclusive list of people to invite to take part in the study. This includes names, addresses and limited additional information about you and your baby. We will also use this additional information for the purposes of understanding who does and doesn’t take part in the study, which helps ensure that statistics reported are as accurate as possible.

CLS collects data from respondents by asking for information about themselves, their babies and other family members. Some respondents are also asked to consent to provide saliva samples for themselves and from their babies.

CLS also collects some data from your own and your babies’ records from government departments and agencies. It’s your choice which of these records are added to the study.

We use the terms ‘you’ or ‘your’ in this document when referring to respondents.

Giving and withdrawing your permission to take part in Generation New Era

We seek your informed consent to be part of the study. We provide you with appropriate information about the study and how your information will be used. We do this so that you know what to expect when you choose whether you would like to take part. You can tell us at any time that you no longer want to be contacted about the study or if you change your mind about adding information from administrative records or about the use of your or your baby’s DNA sample. You do not need to give a reason for this. Consent is not our UK GDPR lawful basis for processing study data for research purposes. The lawful basis section below gives more information about this.

Data controllers

We apply to government agencies for a representative and inclusive list of people to invite to take part in the study. UCL is the Data Controller of the study. The government agencies that give us this list are independent Data Controllers of the information that they provide to UCL.

In Northern Ireland, the government agency providing this information – the Health and Social Care (HSC) Trusts – is sole data controller during the initial opt-out stage, which is carried out on their behalf by the HSC Business Services Organisation (BSO) acting as their data processor. The BSO send the opt-out letter from the HSC Trust, which includes information about the study. A list of those who do not opt-out at this stage is then provided to Ipsos, and UCL become data controllers for the further use of this information for the study.

When we share data with other organisations, these organisations may also be Data Controllers. In the study letters and leaflets and in table 1 below, we tell you about how UCL and other organisations that we work with process your data and whether these organisations are data controllers. We will also provide this information in the study FAQs.

Contact details of the Data Controller

You can contact us at the details below if you:

Have any questions about the study or the way that we process your data
Want to opt out of taking part in the study, to withdraw from the study, or from a survey, or from having your records linked or biological samples stored or used
Want to use your individual information rights
Want to update your contact details

Email: gnestudy@ucl.ac.uk
Post: Freepost GENERATION NEW ERA or Generation New Era, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL

Contact details of the UCL Data Protection Officer (DPO)

If after contacting us, you need more help or wish to complain about how we use your personal data or use any of your individual information rights, please contact UCL’s DPO:

Email: data-protection@ucl.ac.uk
Post: Data Protection Officer, UCL, Gower Street, London WC1E 6BT.

Lawful basis for processing

Study data is processed for research purposes under GDPR Article 6 (e) ‘Public task’. CLS processes sensitive or special category personal data for research purposes under Schedule 1, Paragraph 4 of the DPA 2018. Consent is not the UK GDPR lawful basis for processing study data for research purposes.

If required, we may also process your personal data according to GDPR Article 6(c): ‘processing is necessary for compliance with a legal obligation to which the controller is subject’.

To contact people to invite them into the study, we have sought approval from special committees. For England and Wales, we applied to the NHS Research Authority’s Confidentiality Advisory Group to set aside the common law duty of confidentiality under Section 251 of the National Health Service Act. For Scotland, we applied to the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care. which considers approvals to use specified health care data involving identifiable data whether with or without consent. The legal gateway for the Registrar General for Scotland sharing the data is provided by the Local Electoral and Registration Services (Scotland) Act 2006 section 56.

For Northern Ireland, the HSC Trusts have approved the use of the data under GDPR Article 6 (e) ‘Public task. The HSC Trusts are able to use this legal basis as they are a public authority for the purposes of data protection legislation. Research for public benefit supports the remit of the HSC Trusts to improve public health and social well-being under the general terms of Section 21 of the Health and Social Care (Reform) Act (Northern Ireland) 2009. Health and Social Care research is specified by the Department of Health Code of Practice on Protecting the Confidentiality of Service User Information (2019) as permitted secondary use of personal identifiable information for purposes of health and social care not directly related to the care of this service user. We have received guidance and support from the Northern Ireland Health and Social Care Privacy Advisory Committee (PAC) and the Department for Health.

To receive notifications of deaths and moves out of the NHS for contact tracing and research purposes, for England and Wales we apply to the Confidentiality Advisory Group to set aside the common law duty of confidentiality under Section 251 of the National Health Service Act. For Scotland, we apply to the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care.

The legal bases within GDPR and the Data Protection Act 2018 are separate and in addition to, the permission you gave to take part in the study.

Your individual information rights

You are free to choose whether to provide us with your personal data. The UK GDPR gives people rights over their data. Some of these rights depend on the reason for collecting your data and do not apply in every circumstance. These rights, therefore, may be subject to our policies or ‘exemptions’ (opt outs) allowed by the UK GDPR. You can contact us at any time to tell us:

to stop processing your child’s data, your data, or data you have provided to us about your partner or other family members for research
to inform you about how your information is being used. We do this in this document.
to give you access to copies of your personal information.
to rectify information that is factually inaccurate or misleading (e.g., to correct incorrect contact details).
to erase (delete) your data in certain circumstances, (e.g., to delete incorrect contact details or data that is no longer required, or we’re legally required to erase).
to restrict (limit) processing of your data in certain circumstances, for example if your contact details are incorrect.
you object to the way we process your data.
you want to use the right to data portability: You can receive a copy of your electronically held data and reuse it. We cannot send your data to others at your request.
you want to use your right to object to solely automated decision making and profiling with legal effects for you: We use your data for research purposes and not to make decisions that would affect you individually.

When you contact us to exercise your rights, we will:

tell you that your request has been received
write to tell you if your request is not applicable and give the reasons
act on your request within the time period required by the current data protection law
write to inform you if we need to extend the period of time required to respond due to the complexity

Exception to the right to be informed

It would take disproportionate effort to inform all potential participants about the study prior to them receiving a letter (e.g. informing everyone registering a birth about the study and the possibility they could be invited to take part). We are therefore using the UK GDPR ‘disproportionate effort’ ‘opt out’ from the ‘right to be informed’. We recognise that not providing individuals whose data we’ve received from other sources with this privacy notice directly in advance, poses risks that:

individuals are unaware that the study is collecting and using their personal information and therefore may not be expecting their data to be used in this way.
individuals cannot control how their data is used and therefore cannot use their data protection rights.
individuals who we contact to participate in the study are discouraged from taking part in the study as they were not expecting their data to be used.

To reduce these risks, we have the following safeguards in place:

we have carried out a Data Protection Impact Assessment to identify and mitigate any data processing risks.
in Northern Ireland, your HSC Trust will notify you of the intention for the HSC Business Services Organisation to share your contact details with the study’s fieldwork agency (Ipsos), so that you can opt-out of your details being shared. This will mean you will not be invited to take part in the study.
we’ve published this privacy notice prior to the study letters being sent
this privacy notice will be included as a weblink in the study notification letter to families that we invite to take part in the study.
accessing the data requires us to make an application to a research ethics committee and to gain approval from the government agencies and a number of special committees.
we will ensure that the third-party survey organisation that sends out the study invitations, acts only on our instructions, and that they will delete your data when the contract ends.
we have conducted research with members of the public to demonstrate the acceptability of the study and its approach to inviting people to take part.

For those of you who choose not to take part in the study, we will use your de-identified information to understand who does and doesn’t take part.

Personal data we collect about you

Personal data, or personal information, means any information about an individual from which that person can be identified. Access to personal data is strictly controlled. The study collects, uses, stores, deposits, shares and transfers different kinds of personal data about study members. The data that we will hold for the study includes:

Information from birth and/or health records that we obtain from other organisations to invite you take part in the study

We apply to UK government departments and agencies that hold birth and/or health records to provide our appointed survey agency with a random sample of people whose babies were born in two specific months and are living in the 250 areas randomly selected for the study, and to also provide the survey agency with up-to-date addresses.

In Northern Ireland, we have obtained permission from the HSC Trusts to allow the HSC Business Services Organisation to use your health records to send a notification letter to a random sample of people whose babies were born in two specific months. This letter gives you the opportunity to opt out of the study and of your contact details being passed to Ipsos, the study’s fieldwork agency. We apply to the HSC Trusts to provide Ipsos with the names and up-to-date addresses of the sample who have not opted out of taking part in the study.

The survey agency is also provided with information about deaths and moves out of the UK so that people who have died or moved out of the country are not invited to take part. We do not ask your permission for this. We do not ask you to put yourself forward for the study before we’ve invited you to take part. This is because expert research sampling statisticians and study funders agree that this approach is the best way of recruiting a representative and diverse study group.

These birth and/or health records are received from NHS England for England and Wales, the National Records of Scotland, and Public Health Scotland and (if approved) Northern Ireland Maternity Information Systems and National Health Application Infrastructure System in Northern Ireland. The information we receive from these records is explained in detail in Table 1 below.

We will only keep the minimum amount of data required to ensure a representative and inclusive sample and data that is needed to invite families to participate in the study. If you choose to participate, the survey agency will provide UCL with your data from birth and/or health records, including your contact details so that we can keep in touch with you and invite you to take part in future surveys that are part of Generation New Era and to understand who does and doesn’t take part. If you choose not to take part, in England, Wales and Scotland, the survey agency will provide UCL with your data from birth and/or health records in anonymised form and we will retain it for a limited amount of time to understand who does and doesn’t take part. The study’s survey agency will only retain your data from birth and/or health records for the amount of time needed to conduct the survey and will delete it at the end of their contract with us. In Northern Ireland, for everyone including those who chose not to take part before and after the sample is provided to Ipsos, UCL will apply to access limited data from your health records in anonymised form via the Honest Broker Service, a safe setting hosted by the HSC Business Services Organisation. This will be used to understand who does and doesn’t take part. We do this to help us understand how representative the study is of the wider population, to see if certain groups are more or less likely to participate in the study and to adjust the results of statistical analyses to better reflect the wider population. This is something that is routinely done by similar studies. Understanding the characteristics of those who don’t take part is important to ensure that the circumstances, experiences, and voices of particular groups, such as those from a particular region or ethnic group, are represented in the study, including in policy relevant research. If you prefer us not to retain or use your data for this purpose, you can contact us and ask us to delete your data – see ‘Contact details of the data controller’ above. The study’s survey agency will only retain your data from birth and/or health records for a limited amount of time and will delete it at the end of their contract with us.

Information that you share with us during surveys:

Personal data that relates to and can identify you (e.g., contact details and personal information).
Sensitive / special category personal data (e.g., details about race or ethnicity, religious or philosophical beliefs, sexual orientation, political opinions, trade union membership, information about health and genetic data).
Biological samples: (e.g., saliva samples if you agreed to give samples for yourself and / or your baby).

Information from the data that you share with us during surveys:

Research data from your survey answers: We hold sensitive research data and other research data that could potentially identify you. This includes research data from the study survey, sensitive data and linked data. The information that would directly identify you is removed from this data before it is safely deposited at national data sharing stores.
Genetic information from your and your baby’s biological samples (if you agreed to this): Once analysed, this will include information about your and your baby’s genotype. This data is stored securely and will be used in the future for research purposes under restricted access arrangements.
Information provided by other organisations: as part of our linked data programme (e.g., government departments and agencies such as NHS organisations or Department for Education) and for contact tracing purposes (e.g., to help us keep your contact details up to date).

Data relating to family members of study cohort members

During surveys we may have asked you to provide information about family members of study members such as your child’s other parent (including if you don’t live with them) and/or your partner.

Family members may also have provided information about themselves by participating in surveys, providing biological samples or by taking part in our linked data programme.

Information that we collect from you and other sources, and who we share it with, is summarised in table 2.

Personal information that we collect from other sources

We collect information from external sources for contact tracing and research into the topics that affect your baby’s generation. We link records from external sources to the data collected in surveys as part of our linked data programme (described below).

Administrative records are created when you interact with government services (e.g., use the NHS, pay taxes, access benefits, receive education etc).

We also use data from your birth and/or health records from NHS England in England and Wales and the National Records of Scotland and Public Health Scotland, and (if approved) from the Northern Ireland National Health Application Infrastructure System to update your record for contact tracing purposes (described below) and to understand how representative the study is.

You were only invited to take part in this study if you have NOT opted out of your NHS confidential patient information being used for research and planning via the NHS national data opt-out in England. Please note that the NHS national data opt-out in England does not apply where you have chosen for us to link your health records to your survey data.

Why we process your data

We process your data to keep in contact with you, to ensure a representative sample and to understand who does and doesn’t take part, to carry out and share our research about the topics that you and your baby experience in your life and to keep a record of our contact with you:

To contact you

We apply to use your contact details, such as name and address, from birth and/or health records to invite you to take part in Generation New Era. We do not ask your permission for this in England, Wales and Scotland. In Northern Ireland, we have obtained permission from the Health and Social Care (HSC) Trusts to allow the HSC Business Services Organisation to send you a notification letter to give you the opportunity to opt out of your contact details being shared with the study’s fieldwork agency, Ipsos. If you agree to be part of the study, we will continue to use these details and the details you provide as part of the interview to keep in touch with you and to invite you to take part in surveys and activities that relate to the study. We apply to the NHS and/or other government agencies for up-to-date contact details and for notifications about participants who have left the UK or died. This will make sure that we do not contact these people about the study. Contact details are shared securely with organisations that provide services to us, including the survey agency who collect the data on our behalf, and other data controllers as part of our linked data programme.

2. To ensure a representative sample and to understand who takes part

We apply for some limited additional information about you and your baby from birth records and/or health records. This may contain details of your race and ethnicity. We do not ask your permission for this. We have approval from special committees for this, after a careful review of the information the study will hold, and to ensure that your data and privacy are protected. The information we receive is explained in detail in Table 1 below. We apply for this information so that we can ensure that the study is inclusive of groups who are less often included in longitudinal studies and representative of the UK. We will also apply for access to other information that will make sure the study represents the UK.

In England, Wales and Scotland, this information is received from birth records and health records and is supplied to Ipsos along with your contact details. It may also be used during fieldwork to make sure the study represents the UK population and includes groups who are less often included in longitudinal studies.

In Northern Ireland, this additional information is used from health records only. The data will not include name or contact information and will only be accessed securely by the research team via the Honest Broker Service, a safe setting hosted by the HSC Business Services Organisation. It will not be held by UCL or Ipsos.

3. To record that you were invited to take part in the study

We keep a record of all of the data listed in Table 1 to record that you were contacted to take part in the study.

4. For understanding who does and doesn’t take part in the study

We keep the data listed in Table 1 of those who do not take part in the study in de-identified form (this means that names and addresses are removed), to help us to understand how representative the study is of the wider population, to see if certain groups are more or less likely to participate in the study and to adjust the results of statistical analyses to better reflect the wider population. If you prefer us not to retain or use your data for this purpose, you can contact us and ask us to delete your data – see ‘Contact details of the data controller’ above.

5. Contact tracing

We ask you for contact details of other people too – including someone outside of your household (known as your ‘stable contact’). This is so that if you move to a new address and we’re not able to contact you, we can contact these people to try to find out where you have moved to. Please do tell us if your contact details change. If you provide us with contact details for anyone else, please check with them that they are happy for us to hold this information. Please let us know if not and we are happy to remove these details if they do not wish for us to hold them.

We also apply to the NHS for up-to-date contact details – for example, the address at which you are registered with your GP – and for notifications about study members who have moved out of the UK or who have died. In the future, we may also apply to other government departments for contact details that they may hold. We match the contact details and personal information that we hold with similar data from NHS records or the records of other government departments. We also use data checking services and information that you’ve made publicly available online to update your contact details.

6. Research into the topics that affect your and your baby’s life

Survey and research data

We collect your survey data (and other kinds of research data) with your permission to understand the things that are important to your baby’s generation. You have the option to refuse to answer any individual questions without explanation. You can also withdraw from the survey at any time. You do not need to give a reason. We share pseudonymised research data securely and under licence arrangements for research purposes via the UK Data Service, and other trusted research environments such as the (SAIL) Databank. Information that would directly identify you is removed from this data.

Linked data programme

Our linked data programme links a range of external data to study records to build up a fuller picture of participants’ lives.

It is your choice whether we will share your contact details and personal information with government departments and agencies, and NHS organisations. We will do this to add information about your and your child’s health, education, and social care records from these organisations to your survey data. Adding information to your survey responses helps us to understand the things that affect your and you child’s life and to produce research about a new generation.

Linked data is pseudonymised and deposited at the UK Data Service and similar research environments.

This video explains more about adding administrative information to your survey responses.

Your address and postcode are also used to match data on your location/neighbourhood to your study data. The information that we add is about your local area as a whole, your street or sometimes your specific address or property. This includes a broad range of data including Ordnance Survey, housing, environment, weather data or economic characteristics of your area such as deprivation levels.

We do not ask your permission to add this kind of information because the data is not individual level information about you. Frequently, this information is publicly available and adding this information does not usually require us to share any of your personal information with any other organisations.

However, if you would prefer that we don’t add any information about your area or property to your study record then please let us know by contacting us at:

Email: gnestudy@ucl.ac.uk
Post: Freepost GENERATION NEW ERA or Generation New Era, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL

Your biological samples

Our collection, storage and use of these samples is regulated by the Human Tissue Act 2004.

For some of you, we ask permission to collect:

Saliva from you and your baby. DNA will be extracted from the saliva sample and genotyped for future research.

We will not provide you with feedback of the results of genetic (DNA) testing. This data is used for research and not clinical diagnostic purposes. This position is considered current ‘best practice’ given we cannot be certain about the clinical relevance of any individual person’s results. However, scientific developments in genetics are happening rapidly and this policy will be regularly reviewed.

Not all families will be asked for this, and only biological parents will be included.

We’ll let you know if this applies to your family in your study invitation letter and leaflet, and the interviewer will also give you a separate information leaflet about this. We will update this website with these letters and leaflets, and more information about the saliva sample collection, before these letters are sent to families.

7. Research, record keeping and archiving

Requests

We keep a record of any requests that we have from you.

8. Making the data available for research

We deposit your de-identified survey responses with the UK Data Service, based at the University of Essex, and similar data stores.

UK Data Service

The UK Data Service is funded by the Economic and Social Research Council (ESRC) to meet the data needs of researchers, students, and teachers from all sectors. The UK Data Service collection includes major UK government-sponsored surveys, cross-national surveys, longitudinal studies, UK census data, international aggregate data, business data, and qualitative data. We deposit de-identified data from all the studies that we run.

Table 1: Summary of the sampling data that we hold about you, where we get this data from (sources), who receives this data and the purposes of processing.
Types of data that we hold about you	Sources of data/Data Controllers other than UCL	Who receives your data	Purposes of processing
ENGLAND AND WALES
Birth registration records: · Date of birth mother · Date of birth father · Date of birth baby · Sex of baby · Multiple births · Socio-economic status code of mother and (if registered) father · Occupation code of mother and (if registered) father · Date of registration · Registration type (joint/sole) · Birth registration informant type (e.g. mother, father) · Birth in / outside marriage · Name and address mother · Name and address father (if registered) · Baby name · Country of birth mother · Country of birth father (if registered) · Previous births of mother	· NHS England	· Survey agency · UCL	To draw the sample, send out invites and carry out recruitment for the study. Methodological purposes (to understand how representative the study is of the wider population). For those who do not take part, UCL receive de-identified data.
Health records: · Age of mother · Multiple births · Birthweight baby · Address mother · Address father · Address baby · Ethnicity baby · Previous births mother · Gestational age baby · NHS Number mother · NHS Number father · NHS Number baby · Mortality data and moves out of the NHS for baby, mother and father	· NHS England birth notification records and Personal Demographics Service (PDS)	· Survey agency · UCL	To draw the sample and send out invites and carry out recruitment for the study. Methodological purposes (to understand how representative the study is of the wider population). For those who do not take part, UCL receive de-identified data.
SCOTLAND
Birth registration records: · Age of mother · Age of father · Date of birth baby · Sex of baby · Multiple births · Socio-economic status of mother and (if registered) father · Occupation of mother and (if registered) father · Industry of mother and (if registered) father · Social class of mother and (if registered) father · Employment status of mother and (if registered) father · Parents married indicator/Registration type (joint/sole) · Name and address mother · Name and address father (if different from mother’s) · Name and address baby · Country of birth mother · Country of birth father (if registered) · Previous births mother	· National Records of Scotland (NRS).	· Survey agency · UCL	To draw the sample send out invites, and carry out recruitment for the study. Methodological purposes (to understand how representative the study is of the wider population). For those who do not take part, UCL receive de-identified data.
Health records: · Age of mother · Multiple births · Birthweight baby · Address mother and baby · Ethnicity baby · Ethnicity mother · Previous births mother · Gestational age baby · Mortality data and moves out of the NHS for baby, mother and father	· Public Health Scotland (PHS) · PHS & NHS Scotland Health Boards (addresses) · Maternity records, child health records	· Survey agency · UCL	To draw the sample, send out invites and carry out recruitment for the study. Methodological purposes (to understand how representative the study is of the wider population). For those who do not take part, UCL receive de-identified data.
NORTHERN IRELAND
Health records: To survey agency · Name and address mother · Mother month and year of birth · Baby month and year of birth · Mortality data and moves out of the NHS for mother and baby Secure access provided to UCL via BSO Honest Broker Service (de-identified for all) · Multiple births · Birth type (multiple singleton) · Birthweight · Ethnicity baby · Ethnicity mother · Previous births · Gestational age · Baby month and year of birth · Mother month and year of birth · Mother’s country of birth · Baby’s sex	· Northern Ireland Maternity Administrative System (NIMATS) / National Health Application and Infrastructure Services (NHAIS) · Business Services Organisation (BSO)	· UCL · Survey agency	To send out invites and carry out recruitment for the study (following an opt out letter sent by BSO) Contact details only provided to survey agency for those who do not opt out. Methodological purposes (to understand how representative the study is of the wider population) For all, UCL receive secure access to de-identified data via the BSO Honest Broker Service.

Table 2: Summary of the data that we hold for participants in Generation New Era and who we share it with
Types of data that we hold about you	Controllers	Categories of recipients	Purposes of sharing your data
Contact details, personal information	UCL	International email, marketing automation, and customer engagement service provider Survey agencies	To contact you and keep your record up to date for the purposes of Generation New Era.
Survey answers	UCL	Survey agencies Trusted research environments	For research, statistical and archiving purposes.
Biological samples (e.g., saliva)	UCL	Survey agency Licensed laboratories Researchers Research organisations Biobanks	To collect and process your sample for research, statistical and archiving purposes.
DNA from saliva sample Data derived from biological samples : (e.g., DNA information, and potentially whole genome sequence data and other genomic datasets)	UCL	Licensed laboratories Researchers/research organisations Biobanks	For research, statistics and archiving purposes.
Research data from the study including: – Genetic data linked to survey results – Pseudonymised data from the data linkage programme (e.g., received from NHS organisations, government departments, research and statistics organisations, databanks).	UCL (and public sector bodies for specific projects)	Survey agencies Biobanks Trusted research data services Researchers/research organisations SAIL	To add information to your record. For research purposes. For contact tracing.
Name, sex, postcode, date of birth, address, NHS number/ID (if known) and study ID (study-specific pseudonymised identifier).	UCL	Government departments NHS organisations Trusted external organisations for data linkage Research/statistics organisations	To contact you and keep your record up to date for the purposes of the study.
Publicly available information (e.g., contact details from social media)	UCL		To contact you and keep your record up to date for the purposes of the study.
Personal information, sensitive/special category personal data	UCL, relevant authorities/bodies	Public sector bodies/authorities (e.g., police, NHS, social services) your stable contacts	To meet our legal obligations. For safeguarding purposes.

Microsoft Teams: In some circumstances, you can choose to take part in the survey via video call using Microsoft Teams. If so, your email address, when collected for the purpose of inviting you to take part in a MS Teams call, will be deleted from the Ipsos Electronic Contact Sheet (Dimensions) system when the survey fieldwork has finished in January 2024

(Please note this is separate to any personal data that might be collected within the survey itself).

There may be rare occasions where it may be necessary to use your personal information to protect you or others. For example, when something you tell us indicates that someone is at risk of harm. We may share this information with your stable contacts or appropriate public sector bodies.

Transfers of data outside of the UK

The personal data that we process for the purposes of inviting you take part in the study will not be transferred outside of the UK or Europe. CLS, and the organisations that we work with, transfer personal research data outside of the UK and Europe. Some countries outside of Europe have different data protection rules and may not protect personal data to the same standard. In this case, we are required to have agreements in place to protect this information in accordance with the law.

Data security

We have put in place appropriate security and organisational measures to prevent your personal data from being accidentally lost, used, or accessed in an unauthorised way, altered or disclosed. We have established procedures to deal with any suspected personal data breach and will notify study members and any applicable public body of a breach where we are legally required to do so.

How long we keep your data for

We keep your sampling data for as long as is required for the purposes of contacting you about the study and for understanding who does and doesn’t take part and as long as is allowed in the agreements we hold with the organisations who’ve provided the information, and in accordance with our statutory and legal obligations.

As the study follows study members’ whole life course, we keep study data for at least as long as the study exists and as long as the law allows us to. We will review the data that we hold whenever we receive an individual rights request. Further information on how long we keep records for is included in the UCL records retention schedule: https://www.ucl.ac.uk/library/about-us/records-office/records-retention.

Complaints

Those who wish to complain about our use of personal data, may send an email with the details of the complaint to the Data Protection Officer (data-protection@ucl.ac.uk) so that we can look into the issue and respond.

Study respondents also have the right to lodge a complaint with the Information Commissioner’s Office (ICO) (the UK data protection regulator). For further information on information rights and how to complain to the ICO, please refer to the ICO website: https://ico.org.uk/.

Cookies

When people visit our site, cookies are sent to their computer. Cookies are small text files placed on devices which web servers use to produce information about how our site is used.

Further Information

This privacy notice supplements the following UCL Privacy Notice(s): Research participants for health case purposes privacy notice: https://www.ucl.ac.uk/legal-services/privacy/ucl-general-privacy-notice-participants-and-researchers-health-and-care-research-studies

More information about how we use personal data including how we keep it secure is available in the looking after your information Q&A.

Version control

We keep this privacy notice under regular review to make sure it is up to date. The last update was on: 23 April