Looking after your information Q&A

University College London (UCL) is data controller of the study. The Centre for Longitudinal Studies (CLS), is in charge of the study and is part of UCL.

This research has been reviewed and approved by an NHS Research Ethics Committee. This is an independent group of people committed to protecting your safety, rights, well-being, and dignity.

Data protection means treating information about people fairly and using it properly according to the law. The DPA 2018 and the UK GDPR are data protection laws in the UK. These laws include principles, rights and obligations which apply when we process personal data.

A Data Controller decides how and why personal data are processed. The Data Controller is responsible for ensuring that this data is processed lawfully.

UCL is the Data Controller of the personal data held by the study. This includes information given by participants, information added to the study from other sources and the information provided by the organisations who provided your details to invite you to the study. 

In Northern Ireland, the Health and Social Care Trusts are the Data Controllers of the personal data used to inform you of your opportunity to take part in the study and to opt out of your details being passed to the study.

The UK GDPR and DPA give people rights over their personal data including the ‘right to be informed’. We inform participants of how their data will be used in the study privacy notice.

Yes. We review the study privacy information when we do a new survey and update it if we change how we process study data.

A Data Protection Officer (DPO) is a position set out in the UK GDPR and DPA 2018. Further information about the services and support that the UCL Data Protection Team provides is available here: https://www.ucl.ac.uk/data-protection/reporting-breach-or-subject-access-request/contact-data-protection-team#our-services.

We have to have a valid reason in data protection law for processing study data. This is known as a ‘lawful basis’.

UCL’s ‘statement of tasks in the public interest’ explains more about the reason for using the ‘public task’ lawful basis: https://www.ucl.ac.uk/legal-services/sites/legal_services/files/ucl_statement_of_tasks_in_the_public_interest_-_august_2018.pdf

This statement says that “public task” is the lawful basis for processing study data because UCL is carrying out tasks in its capacity as a public authority when it carries out research. Research for the study is carried out in the public interest with the aim of contributing to public policy.

We seek your informed consent to be part of the study so that you know what to expect when you take part. However, we do not use UK GDPR consent as the lawful basis for using your data.

The UK General Data Protection Regulation (GDPR) gives you rights over your data.

Individual rights requests (e.g., ‘can I have a copy of the survey data that I’ve given to the study’) can be sent to 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

We normally respond to data subject access requests within 1 month.

The study used information from records of births – birth registration records and/or health records - held by government departments and agencies to invite you to the study. In England, Wales and Scotland, the study used birth registration and health records. In Northern Ireland, the study used health records only. Birth records are the information recorded when you registered your baby’s birth and obtained their birth certificate. Health records of births is the information recorded by the NHS when your baby was born. Health records are also used to obtain up-to-date addresses.

The study also uses information from health records 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.   

These records were used as they are a representative and inclusive list of all babies who are born. These organisations provided your name, address and additional information about you and your baby. This has been approved by special committees in each country to allow this.

In England, Wales and Scotland, we hold your name, address and additional information about you and your baby from records of births. This may contain details of your and/or your baby’s race and ethnicity. In Northern Ireland, we hold your name, address, and your and your baby’s month and year of birth from health records. As well as inviting you to take part, this information is used to make sure the study represents the UK population, and to help us understand who does and doesn’t take part.  

We also receive address information from health records. Table 1 summarises the data that we hold about you and your baby from birth records.

In England and Wales, the study has been provided with records of births from birth records and records of births from health records for families in the study. We have also received updated address information. This data has been provided by NHS England for England and Wales.  

In Scotland, the study has been provided with records of births from birth records and records of births from health records for families in the study. This data has been provided by the National Records of Scotland and Public Health Scotland.

In Northern Ireland, the study will receive records of births from health records only from the Northern Ireland Maternity Information Systems, and updated address information from the National Health Application Infrastructure System in Northern Ireland. These records are held by the Northern Ireland Health Trusts and will be provided by the Northern Ireland Health and Social Care Business Services Organisation, acting on their behalf.

Table 1 in the privacy notice lists which organisations have provided the information that we hold about you and your baby from birth records.

The study has approval from special committees to receive and use your and your baby’s data from birth records and/or health records.

For England and Wales, we received approval from NHS England’s Advisory Group for Data (AGD) to receive your data and we also obtained support from 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 2006.

For Scotland, we received approval from the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care which considers requests to use specified health care data involving identifiable data whether with or without consent.

In Northern Ireland, we received approval from the Health and Social Care Trusts. We have received guidance and support from the Northern Ireland Health and Social Care Privacy Advisory Committee and the Department of Health.

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 2006.

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.

In 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 of Health.

The NHS national data opt-out applies in England only.

Those patients who opted out of their NHS patient information being used for research purposes were not contacted to take part in the study – NHS England did not provide the study with any data about those patients.

For those of you who participate in the study, if you subsequently choose to opt out of your NHS patient information being used for research purposes, please note that the NHS national data opt-out does not apply where you have consented to participate in the study and where you have chosen for us to link your health records to your survey data.

For those of you who choose not to take part in the study, we will use your de-identified information (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. In Northern Ireland, the data will be accessed securely via the Honest Broker Service, a safe setting hosted by the HSC Business Services Organisation. 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’.

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.

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 the survey or providing biological samples.

Information that we collect from you and other sources, and who we share it with, is summarised in Table 2 of the privacy notice.

Yes, the study receives information from other sources including:

Information from government departments and agencies: you may have chosen to add your health, education, and social care records, and those of your baby, to the survey data. These departments and agencies are trusted to keep your personal details secure. More about adding information to your record from other sources is available here. Adding this information helps to build up a fuller picture of the lives of a new generation and will be used to answer important research questions and to improve families’ lives. Information from your records will be made available to researchers via secure mechanisms such as the UK Data Service or similar organisations.

Information from our contact tracing activities: We use information from the records of NHS and contact tracing services to update your record to keep in touch with you.

Mortality information from the NHS: we have permission for the NHS to tell us if study members or their parents have died. We use this information, so we don’t contact those who have passed away.

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.

Information about where you live: We use your address to add information about the area where you live (e.g., about the local environment, weather, pollution, and the facilities available) and about your property.

We do not ask your permission to add this 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 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

We ask you to give us contact details someone who you don’t live with (e.g., a relative, a neighbour, a friend) so that we can get in touch with them if we are unable to contact you. We refer to these people as ‘Stable Contacts’. In rare circumstances we may contact your stable contacts if someone tells us that you are at risk of harm. 

Our surveys often include questions about your child’s other parent, your partner, parents, children, and other people who you may live with. This is important because family circumstances have a huge impact on people’s lives. We ask for some personal information relating to family members including names. This is so that in later surveys we can refer back to them and ask if their circumstances have changed. We will not include any information that could allow your partner or other family members to be identified in the data made available to researchers.

We will ask for the name, relationship to you and your baby, gender, and date of birth of your other children and people who live in your household.

We will ask for your child’s other parent’s/your partner’s name, gender, sex, date of birth and age at last birthday. We will ask whether they live with you or elsewhere, and how much your child sees them if they live elsewhere. We will ask whether you are in a relationship with them and your marital status.

We will ask about your partner’s employment, parental leave, education, ethnicity, and health.

If you do not live with your child’s other parent, we will ask you for their contact details to help us contact them to invite them to take part.

You do not have to provide this information, and you can skip any questions that you don’t want to answer.

Tables 1 and 2 ‘who we share your data with’ in the study privacy notice summarise the data that we hold for the study including the information provided by the organisations who provided your details to invite you to the study.

Our service providers

Other organisations may receive your data when they provide us with services related to the study. Ipsos is the research organisation (or survey agency) which is acting as our data processor to undertake the study sampling and recruitment tasks, and to carry out the interviews for the study.

Biological laboratories

With permission, we collect biological samples from you and your baby which are then sent to accredited laboratories that store and process these samples for research.

Providers of ‘administrative’ data

It’s your choice whether we share contact details and personal information with government agencies so that we can link data from their records to study data.

The research community via Trusted Research Environments

Pseudonymised study data is made available for research purposes to the research community from around the world under secure access arrangements. Research data include survey responses as well as other research data such as linked administrative data and are either securely deposited at UK data sharing repositories called “Trusted Research Environments” (TREs) such as the UCL Data Safe Haven, Secure Lab at the UK Data Service or released directly to the researchers following substantial data de-identification.

Access to sensitive data or data that could identify you is managed by the https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_DAC_Terms_of_Reference.pdf.  Information about how researchers access data from the study, is described on the CLS website at ‘Accessing data directly from CLS’: https://cls.ucl.ac.uk/data-access-training/data-access/accessing-data-directly-from-cls/.

Researchers can apply to CLS Data Access Committee (DAC):

• For genetic data linked to survey data
• For biological samples and related data such as DNA: including for genotyping or for generation of new analyses (an analyte is a substance whose chemical parts are being identified and measured). Further information on why we process your DNA sample is available here.
• For CLS to do extra linkages of data from external sources to your survey data.
• For data that has not been deposited at a TRE or which is held in non-digital formats.
• For access to research data deposited in a UK Trusted Research Environment.

Organisations that we communicate our research to

Our surveys sometimes ask you to describe your experiences in your own words. Pseudonymised responses may be quoted in press communications about the research and study data. Other people will not be able to identify you through your responses unless you have agreed to reveal your name.

Public authorities and your stable contacts

In exceptional circumstances, your personal data may be shared securely with public authorities/your stable contacts, if something you tell us indicates that someone is at risk of harm.

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

We respect that you have donated your data to the study. We are committed to treating study data confidentially and keeping it secure. We keep study data secure when working on it, sharing it with other organisations or linking data to study records. The following measures are in place to keep this data secure:

Research ethics committees

Research projects involving personal data are scrutinised and approved by a research ethics committee so that our research is carried out to ethical standards.

Independent registration and standards

As part of UCL, we:

• Are included in UCL’s Data Protection Registration by the Information Commissioner’s Office (ICO) (registration number: Z6364106).
• Meet the standards of the NHS Digital Data Security and Protection Toolkit (DSPT) when we process data in UCL’s secure Data Safe Haven (DSH). The DSH is covered by UCL’s active ISO27001 certification.

Governance and accountability

The following people, committee and group ensure that we process your data appropriately:

• Information Asset Owner (IAO): The CLS Managing Director is also Information Asset Owner (IAO) and is accountable to the UCL Senior Information Risk Owner (SIRO) for ensuring risks associated with processing personal data at CLS are properly managed. The IAO is assisted by other roles including CLS Information Asset Administrator, Records Manager and Archivist, and Information Governance and Data Protection Officer.

• CLS Data Access Committee (DAC): Access to CLS research data is controlled by the DAC. Further information about DAC is available here: https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_DAC_Terms_of_Reference.pdf.

• CLS IG Steering Group (CLS IG SG): CLS IG SG, is chaired by CLS’ Managing Director and attended by representatives from across CLS. This group meets regularly to oversee information governance and data protection issues at CLS.

• CLS Information Asset Administrator (CLS IAA): The CLS IAA is responsible for the proper handling of information within CLS studies.

• CLS Information Governance and Data Protection Officer (CLS IG/DPO): The CLS IG/DPO monitors and evaluates CLS’ processing activities and supports teams to ensure CLS complies with formal laws and standards.

• CLS research data governance: CLS research data is governed by the principles and procedures set out in the CLS Research Data Access Framework and CLS Data Classification Policy. 

Security measures

The following security measures help keep your data secure:

• UCL Data Safe Haven: Contact details and personal information and survey data are held in this secure database and processed by separate teams.
• Access restricted to specialist teams: Study data is managed by experienced teams who are all trained to keep your data confidential. We protect confidentiality by removing contact details from survey responses. Contact details and survey responses are managed by two separate teams. The Cohort Maintenance Team deals with identifiable information such as contact details. The Research Data Management Team manages information from survey responses. The CLS Records Manager holds secure scanned copies of original questionnaires and consent forms in our scanned and physical archives.
• Data classification: Research data is classified according to sensitivity and deidentified if necessary before it is shared outside of CLS. Access to CLS research data is governed by the principles and procedures set out in our CLS Research Data Access Framework and CLS Data Classification Policy. The CLS Data Classification Policy is in place to enable CLS to manage any disclosure and sensitivity risks associated with sharing research data. We assess and classify our research data before sharing it with the research community. Data is classified, pseudonymised and de-identified before it is shared securely with researchers.  This ensures that you (or your family, household, or partner) are not identified in any of the research data that we share with researchers, data sharing repositories or trusted research environments. Further information is available at: https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy.pdf.
• Technical measures: We pseudonymise and de-identify personal data before it is shared with data stores or TREs. This means that we remove the things that would identify you (your family, household, or partner) from our research data (such as name or address) from the survey responses provided and reduce risk of identification by combining or removing information. We also use security methods such as encryption when transferring personal data outside of UCL. 
• Contracts with third parties: ensure that your data is treated lawfully when they provide services to us (e.g., mailing or surveys or records linkage). These organisations are also required to hold appropriate registrations and certifications.
• Physical security: We process and store any physical documents containing identifiable data, securely in locked rooms.
• Transfer of data outside of the EEA: We put contracts in place and check that there are safeguards in place to keep your data safe before we send your data outside of the UK.

Policies, procedures, and training

All CLS staff are required to follow UCL’s data protection and Information Security Policies:

• CLS Data Access Framework: CLS research data is governed by the principles and procedures set out in our CLS Data Access Framework.
• Information Governance Training: All staff must complete approved information security and GDPR training which tells them how to protect your data.

Risk management

We ensure that any risks to your data are documented, assessed, and managed:

• Data Protection Impact Assessments (DPIAs): We do DPIAs to ensure that data flows are recorded, individual rights are considered, and plans are put in place to minimise any risks to data.
• Information Governance Risk Register: The CLS IG risk register is reviewed regularly, and risks are escalated to the UCL Senior Information Risk Owner (SIRO) as necessary.
• Data breaches: Our data breach guidelines ensure that any data breaches are reported to UCL ISG immediately, in line with UCL policy.

Access to your study information by staff at Ipsos is limited to those who need this for the purpose of conducting the study, and to those who keep the system safe.

Ipsos take information security responsibilities seriously and apply various precautions to ensure your information is protected from loss, theft, or misuse. Security precautions include appropriate physical security of offices and controlled and limited access to computer systems.

Ipsos have regular internal and external audits of its information security controls and working practices and is accredited to the International Standard for Information Security, ISO 27001.

All of your personal data used and collected for this study will be stored securely in data centres and servers within the United Kingdom.

If you take part in a Microsoft Teams interview, the email address that you provide will be processed on Microsoft servers located in the EEA. Your survey responses will NOT be processed or stored on Microsoft servers.

Ipsos will only retain your study information for a limited amount of time and will delete it at the end of their contract with us.

Pseudonymised research data are shared securely with researchers and research organisations from across the world. Biological samples may be sent for analysis at laboratories outside of the UK under secure agreements.

The information you give is used for research purposes only. Your survey responses will be put together with the answers from all the other people who are interviewed and made securely available for research via the UCL Data Safe Haven, UK Data Service, and other secure research environments. This research data does not contain any names, addresses, or other personal details that could directly identify individuals in the study.

The information you give will be kept entirely confidential from other members of your family and from organisations who provide services or administer benefits that you or your baby may use or receive. In very exceptional circumstances your confidentiality may be broken, for example, if something you tell us indicates that someone is at significant risk of harm.

If you have provided a saliva sample for yourself and / or your child, the saliva samples will be sent to the University of Bristol research laboratory which is licensed by the Human Tissue Authority. Your family’s name and address will not be attached to the saliva samples. A sample of DNA will be extracted and stored securely and anonymously for research about genes in the future. The saliva samples will be destroyed once the DNA sample has been extracted.

The DNA samples will be used for research purposes only. Researchers using the DNA samples will not have access to your family’s name, address or any other personal details that could directly identify individuals in the study.

The DNA samples will never be used for paternity testing or human cloning. Your DNA will never be given to lawyers or insurance companies. We will not sell or make any profit from the samples you give.

The researchers who use the study data are usually from universities, government, and non-commercial organisations like charities. Sometimes the research may include commercial organisations using the data for approved research purposes. Researchers from commercial organisations will usually partner with public organisations (e.g., the NHS or universities) except under circumstances of exceptional potential public benefit.

Yes, researchers from outside the UK can use the study data. For some types of data, for example administrative records, access is restricted to researchers in the UK.

Researchers usually require approval from an ethics committee for the research they would like to do using the data.

For the DNA samples, qualified researchers will need permission from a special committee with expertise in genetics and in overseeing and safeguarding access to the samples. They'll only be given permission if their research will benefit the public. This committee is the CLS Data Access Committee.

We deposit your de-identified survey responses with the UK Data Service, based at the University of Essex. Researchers may also sometimes access the study data via the UCL Data Safe Haven. We may deposit your de-identified survey responses via other secure research environments.

Linked administrative information, geographical information and genetic information from DNA samples is also made available via secure research environments, with additional measures in place for these types of data.  

Making the study data available through these central data stores makes it easier for scientists from different sectors, working in a wide variety of fields, to access and use the information in their research.

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, including Generation New Era.

Access to your survey responses by staff at the data stores is limited to those who manage and prepare the data for access and to those who keep the system safe.

The data are de-identified at all times, and steps are taken to ensure confidentiality and data security. The data services have leading Information Security accreditation (ISO27001) and are regularly audited by IT professionals, the NHS and UK statistics agencies.

Legitimate researchers apply to these data stores to access the data under a strict licence agreement and are required to use the data for legitimate purposes. Where your routine administrative records have been linked to your survey responses, additional measures are in place, including limiting access to researchers based in the UK and to researchers who need to demonstrate that they will be competent and safe users, that their project is in the public interest, is not run for profit making purposes, and will meet the requirements of CLS and the owners of the administrative data.

If you choose not to take part, the survey agency (or UK government department or agency for Northern Ireland) will provide UCL with your data from birth and/or health records in de-identified pseudonymised form and we will retain it for a limited amount of time 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.

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

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.

You have the right at any time to withdraw from the study. You can withdraw from the study as a whole, or from just a particular survey, or from having your biological samples collected, or from the records linkage programme. If you send us a request to withdraw from the study, we would be grateful if you could specify what your withdraw request covers so that we know what to do with the data that we already hold. If you want to withdraw, you can contact 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

If you withdraw from the study after the interview, we will not contact you again to invite you to participate in Generation New Era.

The information which the study has already collected about you will be kept and continue to be used for research unless you tell us not to. It will be retained for other study purposes where the law allows us to do this. It will be kept for the duration of the study or until no longer required by the study. Further information about this is given below.  

Your contact details:

Your contact details will be removed from our mailing lists as well as the mailing lists of the external organisations we contract to carry out the study. We will not contact you again to ask you to participate in Generation New Era.

We will, however, continue to securely store your contact details within the Centre for Longitudinal Studies (CLS) because this provides us with a record of your previous participation, along with your request to be permanently removed from the study.  This will help us to ensure that we do not contact you again.  Your contact details will also still be used by us to add information from administrative records held by government agencies (described below).

Your survey data:

The information you have given to the study will be deposited in pseudonymised form at secure data sharing platforms including the UK Data Service. Your pseudonymised data will continue to be made available to researchers via secure data sharing platforms unless you request for it not to be. We will continue to store this information securely within the Centre for Longitudinal Studies (CLS).

The survey data that you have given to Generation New Era is important research data collected in the interest of the public. The research findings will be used to shape policy and practice.

Your biological samples:

If you have given us consent to store any biological samples you have provided for future analysis, these will continue to be stored. The samples and data deriving from them will continue to be used for research unless you request for this to stop.

Information from administrative records held by Government departments and agencies:

If you have chosen for us to add information from administrative records held by government agencies such as the National Health Service (NHS) to the data you have provided us during the surveys, we will continue to add information from these records unless you request us not to.  Any data from these records which has already been obtained and deposited in pseudonymised form at data sharing platforms will continue to be made available for research purposes.

Information about where you live

We use your address to add information about where you live such as the local environment, weather, pollution, and the facilities available (e.g., shops and green spaces). The information that we add may be about your local area as a whole, your street or sometimes your specific address. We will continue to do this, using the information we hold about where you lived up to the point at which you stopped taking part in the study.

If we lose touch with you, we will try and find new contact details for you so that we can ask you if you’d like to continue taking part. 

The information which the study has already collected about you will be kept and continue to be used for research unless you tell us not to. It will be retained for other study purposes where the law allows us to do this. It will be kept for the duration of the study or until no longer required by the study.  Further information about this is given below.

Your contact details:

Your contact details will be removed from our mailing lists as well as the mailing lists of the external organisations we contract to carry out the study. We will not contact you again to ask you to participate in Generation New Era unless we find new contact details for you.

We will, however, continue to securely store your contact details within the Centre for Longitudinal Studies (CLS) because this provides us with a record of your previous participation and could help us find new contact details for you.  If you have given us permission, then your contact details will also still be used by us to add information from administrative records held by government agencies (described below).

Your survey data:

The information you have given to the study will be deposited in pseudonymised form at secure data sharing platforms including the UK Data Service. Your pseudonymised data will continue to be made available to researchers via secure data sharing platforms.

We will continue to store this information securely within the Centre for Longitudinal Studies (CLS). The survey data that you have given to Generation New Era is important research data collected in the interest of the public. Our research findings will be widely used to shape policy and practice.

Your biological samples:

If you have given us consent to store any biological samples you have provided for future analysis, these will continue to be stored. The samples and data deriving from them will continue to be used for research.

Information from administrative records held by Government departments and agencies:

If you have previously chosen for us to add information from administrative records held by government agencies such as the National Health Service (NHS) to the data you have provided us during the surveys, we will continue to add information from these records. Any data from these records which has already been obtained and deposited in pseudonymised form at data sharing platforms will continue to be made available for research purposes.

Information about where you live

We use your address (and previous addresses) to add information about where you live such as the local environment, weather, pollution, and the facilities available (e.g., shops and green spaces). The information that we add may be about your local area as a whole, your street or sometimes your specific address. We will continue to do this, using the information we hold about where you lived up to the point at which you stopped taking part in the study.

We are only asking parents to consent for their individual participation in the study, not their child’s. It is therefore up to each parent to decide if they individually want to take part and answer questions about their child. 

We will, however, ask one parent to consent for their child’s administrative records to be linked with their survey responses, and consent for a saliva collection if applicable. We will only be asking the parent who completes the longer interview for these consents, so you may wish to discuss this with your child’s other parent.

Further information about the study is available in Your Questions Answered.

Joining the study should not cause any harm and it will never affect any services or care. If your interview leaves you worrying about anything that’s happening in your life, there are organisations you can talk to.  Sources of advice and support are available here.

We can be contacted 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

If after contacting us, there are still concerns about how personal data is being processed, the UCL Data Protection Office can be contacted at: data-protection@ucl.ac.uk or Private and Confidential, Data Protection Officer, UCL Gower Street, London WC1E 6BT.

We hope that we will be able to resolve any complaints that there may be about the study.

Study members have the right to complain to the ICO – the independent regulator which upholds information rights in the UK. Further information about making complaints to the ICO is available at: https://ico.org.uk/make-a-complaint/your-personal-information-concerns/.

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