Looking after your information Q&A

The Centre for Longitudinal Studies (CLS) at University College London (UCL) is in charge of the study and is responsible for the study information.

UCL is legal data controller for the study.

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

Approval by special committees in each country was also needed to allow government departments and agencies to provide Generation New Era with your contact details and additional information from records of births.

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 and the Strategic Planning and Performance Group (SPPG) within the Department of Health 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: gnestudy@ucl.ac.uk

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

The study used records held by government departments and agencies to invite you to the study. In England, Wales and Scotland, the study used information from birth registration and health records. In Northern Ireland, the study used information from health records only. Birth registration records are the information recorded when you registered your baby’s birth and obtained their birth certificate. Health records from births are 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. The organisations who hold these records 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 in the privacy notice summarises the data that we hold about you and your baby from birth records.

This Table reflects the information we hold on families for phase 2 of the study. Similar information was used for phase 1 of the study.

In England and Wales, the study is provided with  information from birth registrations and health records from births for families in the study. This includes babies, mothers and fathers, where this information is recorded on these records. We also receive updated address information. This data is provided by NHS England for England and Wales.  In Scotland, the study is provided with information from birth registrations and health records from births for families in the study. This includes babies and mothers, but not fathers.  We also receive updated address information. This data is provided by Public Health Scotland and the National Records of Scotland.

In Northern Ireland, the study is provided with health records from births only for families in the study from the ENCOMPASS system, and updated address information from the Northern Ireland Digital Identity Service. This includes information about babies and mothers, but not fathers. These records are provided by the Northern Ireland Health and Social Care Business Services Organisation, acting on behalf of the Northern Ireland Health and Social Care Health Trusts.

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

This Table reflects the information we receive about families for phase 2 of the study. Similar information was used for Phase 1 of the study.

The study has approval from special committees to receive and use your and your baby’s data from birth registrations 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 panel has approved the use of the data under GDPR Article 6 (e) ‘Public task’.

In Northern Ireland, the HSC Trusts have approved the use of the data under GDPR Article 6 (e) ‘Public task’. 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 service users. 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 are not contacted to take part in the study – the study does not receive their contact details. If you take part in the study and later opt out of your NHS patient information being used for research, your agreement to join the study and your agreement to link your health records to your survey responses will still apply.

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 Scotland and Northern Ireland, the data will be accessed securely through approved safe settings — the National Safe Haven in Scotland and the Honest Broker Service in Northern Ireland, hosted by the HSC Business Services Organisation.. Only demographic information will be used for this and it will be securely deleted once this is completed. Your and your baby’s name and address will not be kept or used for any other purpose. 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’.

For families in phase 1 of the study, the survey agency has securely deleted your contact details and other information from birth registration and / or health records at the end of their contract. . 

If you participated in the study, the survey agency provided UCL with the contact details collected directly from you, not those from your birth and/or health records. UCL will continue to hold your contact details provided in the interview, as well as your survey responses

For families in phase 1 of the study, in England, Scotland and Wales, the survey agency provided UCL with other fields from birth and / or health records for all families invited to the study, whether or not they took part. This information was retained for a limited amount of time to understand who does and doesn’t take part in the study and has now been securely deleted .

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).

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.

Data relating to family members of study cohort members

During surveys we may have asked you to provide information about family 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  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.

Yes, it is your choice whether 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 including the UK Longitudinal Linkage Collaboration. Information that could identify you will be removed before it is shared via these 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 respondents or their children 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 current and previous address (from your interview) 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 gnestudy@ucl.ac.uk

For phase 1, although no further interviews are planned, we may still add this information from other sources. This hasn’t been decided yet. We will update these website pages with more information about this in the future. If you prefer that we don’t do this, please let us know. 

We ask you to give us contact details of 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 ask you to let this person know if you’ve passed on their details to the study. 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, sex, and date of birth of your other children and people who live in your household. We will also ask for the same information about any children who do not live with you as well as their gender.

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 for their mobile number and email address to invite them to take part in the study.

We will ask about their relationship to your baby, how much time they spend caring for the baby, 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 their employment, education, and ethnicity.

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.

These Tables reflect information we receive and share about families for phase 2 of the study. Similar information was used for Phase 1 of the study.

Our service providers

Other organisations may receive your data when they provide us with services related to the study. Ipsos is the lead independent research organisation (or survey agency) for the study, responsible for leading on the study sampling, recruitment and interviews. Two other independent research organisations – NatCen and Verian – are also doing interviews. All of these organisations follow the rules and Code of Conduct of the Market Research Society, and associated regulations and guidelines. They have lots of experience in carrying out similar studies with children and families.

International email, marketing automation, and customer engagement service providers  

In the future, we may use Dot Digital to send you emails about the study. In order to do this, we share your first name, email address and serial number with Dot Digital. Dot Digital will receive your IP address when you visit their site. Your survey responses are never sent to Dot Digital. You can unsubscribe from email newsletters at any time (information on how to do this is provided every time we send this information to you).

We may also use Qualtrics, an online survey platform, to contact you and to ask you to provide feedback about the study. If you complete this form, your details will be shared with Qualtrics.

Providers of ‘administrative’ data

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

The research community via Trusted Research Environments

Study data is made available to the research community from around the world under secure access arrangements. Survey responses linked to administrative data are always 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, and UK Longitudinal Linkage Collaboration. Research data that have been made substantially less detailed are also be released directly to researchers. Research data never includes any names, addresses or other personal details that could directly identify you or your family.  

Access to sensitive data or data that could indirectly identify you is managed by the CLS Data Access Committee 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 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. 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 voluntarily provided 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.
• Data classification: Research data is classified according to sensitivity and handled in a way that protects participants’ identities before it is shared outside of CLS and with the research community. The principles and procedures set out in our CLS Research Data Access Framework and CLS Data Classification Policy. ensure that you (or your child, family, household, or partner) are not identified in any of the research data that we share. Further information is available at: https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy.pdf.
• Technical measures: Before our research data is shared with data stores or TREs, we remove the things that would identify you (your child, family, household, or partner) (such as name or address) 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 UK: 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 survey agencies is limited to those who need this for the purpose of conducting the study, and to those who keep the system safe.

Survey agencies 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.

Survey agencies also have regular internal and external audits of their information security controls and working practices and are 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. The study’s appointed survey agencies will only retain your study information for a limited amount of time and will delete it at the end of their contract with us.

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. This is anticipated to be in December 2025, though this may be extended.   

Research data are shared securely with researchers and research organisations from across the world.

Yes, for families who took part in phase 1 in 2023/2024, information collected as part of the study will be retained by the study. It will be treated in strict confidence and kept securely. The information you and other families have provided will continue to be used, for many years to come, for research to improve the lives of children and families in the UK. 

Your name, address and other contact information, and contact details of other people you may have provided as part of the interview will also be retained.  

If you’d like to tell us that you prefer us not to stop using the information you gave us, please get in touch via the study website, by email: gnestudy@ucl.ac.uk or Freephone: 0808 175 6330.  

For families who took part in phase 1 in 2023/2024, it hasn’t been decided yet if we will add information from administrative records for your and/or your child, if you gave us your permission, or about your property or local area.

No information from any of these sources has been added so far. We will update these website pages with more information about this in the future.

If you’d like to tell us that you prefer us not to add this information, or to change your permissions, please get in touch via the study website [LINK], by email: gnestudy@ucl.ac.uk or Freephone: 0808 175 6330.

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.

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.

We deposit your 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 survey responses via other secure research environments such as the UK Longitudinal Linkage Collaboration.

Linked administrative information and geographical information 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 research 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 do not include any identifying information, 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 technical measures to ensure data cannot be downloaded to researchers’ home or work computers, 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) will provide UCL with access to your data from birth and/or health records and we will access 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 the survey agency 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. The survey agency provides this information to UCL, including for families who do not take part in the study, and we will retain it for a limited amount of time to understand who does and doesn’t take part. For families who do not take part, the information provided to UCL does not include your names or addresses.

In Scotland and Northern Ireland, the data will be accessed securely through approved safe settings — the National Safe Haven in Scotland and the Honest Broker Service in Northern Ireland, hosted by the HSC Business Services Organisation, where the data do not include name or contact information.[KD1] 

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 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 withdrawal 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:gnestudy@ucl.ac.uk

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

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.

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 at secure data sharing platforms including the UK Data Service. This data does not include your name or address. Your 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. The research findings will be used to shape policy and practice.

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 data sharing platforms will continue to be made available for research purposes. If you took part in Phase 1, it has not yet been decided if we will still add information from administrative records for you and/ or your child, if you gave us your permission.

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 you took part in phase 1, we may still add information about your property or local area. No information from any of these sources has been added so far. We will update these website pages with more information about this in the future.

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: gnestudy@ucl.ac.uk

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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