Researchers at the Institute for Social and Economic Research (ISER) at the University of Essex are running the study. Verian and the National Centre for Social Research (NatCen) will be working with us to conduct fieldwork and collect the measurements.
Institute of Social and Economic Research, University of Essex, Wivenhoe Park, Colchester, Essex, CO4 3SQ
Web: https://www.iser.essex.ac.uk
The University of Essex is registered as a data controller with the Information Commissioner’s Office (Registration Number: Z699129X).
The Data Protection Officer for the University of Essex is:
Data Protection Officer, University of Essex, Wivenhoe Park, Colchester, CO3 4SQ
Telephone: +44 (0) 1206 874853
Email: dpo@essex.ac.uk
The Research Governance and Planning Manager for the University of Essex is:
Mantalena Sortiriadou, University of Essex, Wivenhoe Park, Colchester, CO3 4SQ
Email: ms21994@essex.ac.uk
Data collection for the project has been sub-contracted to the following organisations, who are acting as data processors:
- Verian (formerly Kantar Public) and the National Centre for Social Research (NatCen) who are conducting the survey fieldwork
- Thriva, the laboratory carrying out the blood sample collection and analysis
The research is funded by the Economic and Social Research Council (ESRC).
Ethics approval for the study has been provided by the NHS Health Research Authority, East of England – Essex Research Ethics Committee, reference: 22/EE/0260.
In this research study we will use information from you. We will only use information that we need for the research study. Verian and NatCen, our fieldwork partners, will use your name and contact details so they can invite you to the study and carry out fieldwork. If you take part in the blood sample collection, Thriva, the lab carrying out the analysis, will use your contact details and your date of birth and sex so that they can send you a collection kit and analyse your blood sample. Verian will send you the results of your blood analysis, if you wish to receive these.
If you agree to have your blood stored for future research, your name and address will not be attached to the sample and so your sample will remain confidential. Before being used in future research, some of the information we have collected in this survey (but not any details which would identify you) may be attached to the sample.
Everyone involved in this study will keep your data safe and secure. The results of the study will never include any names or addresses. The information collected is used for research purposes only and will be dealt with according to the principles of the Data Protection Act and General Data Protection Regulation (GDPR).
At the end of the study, anonymised data are made available from the UK Data Archive, the European Genome-Phenome Archive, other secure data repositories or by the study team, to trusted researchers. All research reports are written in a way that no-one can work out that you took part in the study.
Your participation is entirely voluntary. You have the right to change your mind about any measurement or withdraw from the study at any time without explanation. You can withdraw your consent to store your blood at any time, without giving a reason, by asking us in writing for your blood to be removed from storage and destroyed.
Under the General Data Protection Regulation (GDPR), a legal basis is required for processing of personal data. The legal basis under which data is processed within this project is:
Article 6 (1) (e) – “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;”
Processing of data concerning ‘special categories’ of data require the fulfilment of an additional condition under GDPR. The specific condition fulfilled by the processing of such data within this project is:
Article 9 (2) (j) – “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.”
For further information, see the ICO guide to lawful basis for processing.
Under the Data Protection Act 2018 we are also required to identify an appropriate condition for processing Special Category Data, and this is Schedule 1, part 1, paragraph 4
The project will collect data from sample members. This will include personal data, such as name, address, date of birth, contact details. The information will also include ‘special category’ data: we ask participants about their health, and collect a blood sample from participants. If participants choose to supply this information, it is processed along with other data. Personal data such as contact details are kept securely separate from survey responses, and are not deposited with the UK Data Archive, nor are they made available to researchers.
The General Data Protection Regulation provides the following rights for individuals in relation to their personal data:
- The right to be informed
- The right of access
- The right of 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
For further information, see the ICO guide to individual rights.
Anonymised survey data will be transferred to the UK Data Archive, and made available to registered researchers. Sample data (including contact information) will be transferred to the fieldwork agencies sub-contracted to carry out the data collection, to enable them to contact the sample member to invite them to participate. The fieldwork agency will also use this information to send participants the results of their blood sample analysis (if they consent to receiving this).
Sample data (contact information, date of birth and sex) will be sent to Thriva, the laboratory conducting the blood sample collection and analysis, so that they can send participants a blood sample collection kit and to carry out analysis of the blood sample.
All fieldwork agencies and Thriva, the laboratory conducting the blood sample collection and analysis, are certified to the Internationally agreed standard for Information Security (ISO27001:2013).
Data will be retained by the Institute for Social and Economic Research for as long as it may be required. The anonymised survey data will be made available to registered researchers from the UK Data Archive and other approved secure data repositories.
Please contact the Director of Understanding Society, Professor Michaela Benzeval:
Tel: 01206 873983 mbenzeval@essex.ac.uk
Paul Clarke, the Research Director of ISER:
Tel: 01206 873760 pclarke@essex.ac.uk;
Mantalena Sotiriadou, the Research Governance and Planning Manager at the University of Essex:
Tel: 01206 876320 ms21994@essex.ac.uk
If you have any questions about the security of your personal details, please email iserdpq@essex.ac.uk
The University of Essex is the registered organisation for data protection purposes, and may be contacted at dpo@essex.ac.uk
Additionally, any queries or concerns regarding the processing of personal data can be made to the Information Commissioner’s Office.
If you would like to contact us at any point you can call us on Freephone 0800 252 853 or email contact@understandingsociety.ac.uk
If you are interviewed face-to-face, the interviewer will try to answer any questions you have.