Fair Processing Notice for families invited to take part or participating in Generation New Era
Version 5: Applicable from: 15 February 2024
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Contents
About Generation New Era
About this fair processing notice
How we use your information
How we protect study data
Further information
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About Generation New Era
Generation New Era is one of several national longitudinal cohort studies at the UCL Centre for Longitudinal Studies (CLS). UCL is the Data Controller of the study working with a consortium of partners. The study follows the lives of thousands of babies born in November and December 2022 in England, Wales and Scotland and in June and July 2023 in Northern Ireland, and their families. The information that you give to the study enables research on a range of topics about the lives of your baby’s generation. We share our research data and findings from the study to help researchers learn about this generation of babies and their families. Please do contact us if you need more information about the study:
Email: gnestudy@ucl.ac.uk
About this fair processing notice
This notice is for anyone whose data that we hold for the study. It tells you what we do with data for the study and where the data comes from. We use ‘you’ or ‘your’ when referring to parents/legal guardians/partners of parents of babies in the study.
How we use your information
We appreciate the participation of families and their babies in the study. Research data from the study will be used by researchers from across the world and made available as an important resource for public policy and service planning. Study data is collected for research purposes under the UK General Data Protection Regulation (GDPR). Your data will be used for legitimate reasons connected to the study including to:
Invite you to take part in the study
We apply for your contact details, such as name and address, from birth and/or health records, to invite you to take part in Generation New Era. These details are provided to Ipsos, a survey agency, who use them to contact you to invite you to take part in the study. Ipsos shared your name and address with their contractor, Formara, to assemble and send you your invitation letter and participant pack.
We do not ask your permission for your contact details to be shared with Ipsos in England, Wales and Scotland.
In Northern Ireland, before your contact details (i.e., your full name and address, your month and year of birth and your baby’s month and year of birth) are securely shared with Ipsos, your Health and Social Care (HSC) Trust will notify you of the intention for the HSC Business Services Organisation (BSO) to share your contact details for those purposes, so that you can opt-out before this process happens. This means you will not be invited to take part in the study, and your contact information will not be shared with UCL or Ipsos.
If you agree to be part of the study, we will continue to use these details and the contact 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. Your contact details are shared securely with Ipsos. Your contact details are never included in the data we share for research. 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. We will also apply for access to other information, set out in Table 1 of the privacy notice, that will make sure the study represents the UK population.
Ensure the study represents the UK population
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 and/or your baby’s 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 from these records is explained in detail in Table 1 of the privacy notice. We apply for this information to make sure that the study represents the UK population and includes groups who are less often included in longitudinal studies, and to help us to understand who does and doesn’t take part.
In England, Wales and Scotland, this additional 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. It 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 (BSO), and will not include names or contact information.
Record whether you take part in the study
We keep a record of all birth and/or health records that we receive for the stutdy, to record that you were contacted to take part in the study. The information that we receive from birth and/or health records is explained in detail in Table 1 of the privacy notice.
In England, Scotland and Wales, we keep the data of those who do not take part in the study in de-identified form (that is, names and address are not included, only an anonymous identifier), 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, we keep the data of those who do not take part in the study in de-identified form (with anonymous identifier), where this information is supplied to Ipsos, to record that you were contacted for the study.
We also keep a record of any requests, comments, or complaints about the study.
Keep in touch with you
Your contact details are used to keep in touch with you and to invite you to take part in surveys and activities that relate to the study.
We collect contact details for people who live with you and contacts outside your household to help us try to find you if we lose touch. We may also use these contact details in an emergency.
We 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 participants who have left the UK or died. In the future, we may also apply to other government departments for contact details that they may hold. We also use data checking services to keep your contact details up to date and information that you’ve made publicly available online to update your contact details.
Carry out surveys
The answers you give to our survey questions are used for research purposes. Some of our surveys include the collection of sensitive data such as information about your, or your child’s, health.
We collect information about your baby’s other parent (including if you live apart from them), partners, children, other family members and others you may live with. We ask for this information because family circumstances have a huge impact on people’s lives.
Most surveys are carried out by third parties on our behalf. The third-party organisations may use other organisations to conduct work on their behalf. Ipsos, an independent research organisation, is carrying out the interviews for Generation New Era.
For our 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. We use your contact details and personal information to link data from government agencies about you and your child (e.g., your and your child’s health, education and social care records) to your survey data. It’s your choice which of these records are added to your study responses, and you can change your mind at any time. Data from these government agencies is generated when you use their services and are known as ‘administrative data’.
We also use your address to add information about the area in which you live (e.g., air pollution levels, green spaces) and about your property (e.g. energy efficiency of your home). Frequently, these data are publicly available. We do not ask your permission for these linkages. If you prefer that we don’t do this, please let us know.
Collect and analyse your biological samples
With your permission, we plan to collect saliva samples from some of you and from your baby to carry out research about genes. If we have your permission, DNA will be extracted from these saliva samples and used in the future for research about genes. This DNA is stored in a laboratory accredited by the Human Tissue Authority for research purposes.
Once the DNA has been extracted the saliva samples will be destroyed by the laboratory.
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.
Share our research data
Our research data (e.g., survey data and linked data) is deposited with the data stores used by CLS so that it can be used by researchers (under secure access arrangements) to help them understand this generation. This data does not contain any personal details that would directly identify you (or any of your family members).
Share our research findings
We share the findings of our research with the research community. Our surveys sometimes ask you to describe your experiences in your own words. These responses may be used in communications about the research and study data. Other people will not be able to identify you through your responses unless you have agreed to your name being revealed.
Record your participation in the study
We keep a record of any requests, comments, or complaints about the study.
Understand how our website and social media are used
We collect information about how our social media and web content are used.
How we protect study data
As the study follows study members’ whole life course, we plan to keep study data for at least as long as the study exists and as long as the law allows us to. We review the data that we hold whenever we receive an individual information rights request. In certain circumstances, these rights include; The right to be informed; The right of access; The right to rectification; The right to erasure; The right to restrict processing; The right to data portability; The right to object; Rights in relation to automated decision making and profiling.
We take the confidentiality and security of study data seriously. We have people, policies, systems, and procedures in place to keep study data safe. Transfer of study data outside of the UK takes place under secure arrangements.
In exceptional circumstances study members’ or household confidentiality may be broken, for example, if something we are told indicates that someone is at risk of harm.
Further information
The study privacy notice provides more information about how we handle data. We would be happy to answer any questions or concerns that there may be about the way that we process study data.
You can also contact UCL’s Data Protection Officer: data-protection@ucl.ac.uk. You also have the right to contact the UK Information Commissioner for advice and support: https://ico.org.uk/your-data-matters/.
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This Fair Processing Notice is updated regularly and was last updated on 15 February 2024.