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Privacy

The Twins Early Development Study (TEDS) Privacy Policy

In this privacy policy we will describe how we process data relating to:

  • Users of this web site
  • Participants in the TEDS study

We will describe how your data are processed, the purposes for which the processing takes place, and your rights in relation to the data. This policy helps fulfil our obligation to process personal data fairly, lawfully and in a transparent manner (as required by the General Data Protection Regulation and the Data Protection Act 2018).

The TEDS study is part of the university of King's College London (KCL), and we are governed by KCL general policies. In order to keep the TEDS privacy policy as concise as possible, we refer you to the KCL Core Privacy Notice, which includes some general information that we will not duplicate here.

For more general information about TEDS and our research, visit the About TEDS and Research sections of this web site.

This privacy policy may be updated from time to time. The current version is effective from January 2019.

Users of this web site

Web site users may include TEDS study participants (see below), researchers and members of the general public. Web site users may choose to use our contact us page (on this web site) in order to make enquiries, or to communicate via our social media presences (not on this web site) - issues relating to data provided via these means of contact are described further down this page.

For all web site visitors, we track activity by means of cookies and web server logs. Our use of web site cookies conforms with KCL policies: see the KCL Core Privacy Notice for details. We use Google Analytics cookies to track information such as the pages you visit and the web site you were referred from. These cookies do not contain your personal details; they are treated as first-party cookies on our web server, and are not copied to Google. Click here for an overview of privacy at Google. We do not use third-party cookies and we do not participate in marketing.

Our web server collects information about visitors in standard server logs. The information logged includes the pages you visited, the IP address of the device you used, and information about the browser you used. These logs help us to analyse data about web traffic in order to improve our web site. The logs may also be used to help identify problems in case of a fault on the server. The logs are not used for other purposes and will not be used in any attempt to identify any web site visitor. The web server periodically and automatically deletes old logs.

TEDS has a presence on social media, namely Facebook, Twitter and YouTube. Users of these social media should be aware that any information posted is covered by the terms and conditions of the respective site and is in the public domain. That is to say, any information posted may subsequently be more widely shared via these sites and may eventually be viewed by anyone in the general public. It is your responsibility to ensure that information you post on our social media sites is within the bounds of the law.

For any web site user who chooses to contact us via phone, email or other means, we may store your name and contact details for the purpose of contacting you again in relation to your enquiry. Your details will not be passed to any third party without your explicit permission. If you are a participant in the study (a TEDS twin or family member), please see the section below for details of the processing of your data.

Researchers may contact us for the purpose of collaboration or sharing data (see our data access policy). In addition to your name and contact details, and those of co-collaborators, you may supply additional information by means of documents such as the data request form and data sharing agreements. Your name and contact details will be retained for future enquiries about your collaboration. Information about research proposals will be logged securely for the purpose of documenting current and past collaborations. Information about current and past collaborations may be published on our web site for the benefit of other researchers, along with names of collaborators and outcomes such as links to published papers.

Participants in the TEDS study

The information below relates to the families of twins who participate in TEDS and provide data.

TEDS is an academic research project. It is part of the university of King's College London (KCL), and it is funded by the Medical Research Council (MRC). As such, we aim to comply with the policies of KCL and MRC with respect to the storage, processing and sharing of research data. We comply with the UK Data Protection Act (2018) and with the EU General Data Protection Regulation (GDPR).

What data do we collect?

The administrative data we collect from participants includes their names and contact details, including postal addresses, email addresses and phone numbers for twins and their parents. These are used solely for the purpose of contacting participants for the administration of the study, for example for the purpose of collecting new research data. We also hold contact details, where supplied by twins or their parents, for some relatives and friends of the families; these will be used solely for the purpose of tracing TEDS participants if we lose track of your current address or phone number.

The research data that we have collected, and continue to collect, from participants has included data from questionnaires, tests and interviews. These data have been collected by means of paper questionnaires or booklets, web tests and web questionnaires, an app running on mobile devices, telephone interviews, and (for some families when twins were aged 4) in-person tests and questionnaires during home visits. We have also collected DNA samples from twins, by means of cheek swabs and saliva samples sent by post.

These data are all ultimately converted into electronic forms of data. Paper questionnaires are electronically scanned, or manually keyed, into computer systems; and responses to questions are converted to electronic codes (usually, numeric categories). Information collected by phone interviews and during home visits were transferred onto paper questionnaires or score sheets, and again converted into electronic form by similar means. When we have verified the accuracy of such electronic transfers, the original media (usually paper) are destroyed.

Twin cheek swabs and saliva samples were processed to extract DNA samples. The original cheek swabs and saliva samples have been destroyed, while the remaining DNA samples, if not used up for the purposes described below, are stored in freezers in secure labs within KCL. The DNA samples have been genotyped, which means that information about each individual's genetic sequence has been derived, in coded electronic form. These data are referred to as genotypic data. In contrast, the data collected from questionnaires, tests and interviews may be referred to as phenotypic data.

As TEDS is an ongoing longitudinal study, the electronic research data will be kept for the duration of the study. When the TEDS study eventually ends, the research data will be archived for future research purposes, but in an anonymous form whereby participants are not identifiable. Administrative data such as names and contact details will be deleted when the TEDS study ends.

How do we use your data?

Administrative data, including your names and contact details, are used solely for contacts in relation to our studies, as mentioned above. These administrative details are stored in a secure database system within the KCL network. This system can only be accessed by authorised members of the TEDS admin team. Where participants have sent information by letter or by email, the necessary administrative information has been transferred into this system then the original letter or email has been destroyed or deleted. Administrative details such as names and contact details are not shared with any third parties except for related research studies within KCL, and even then they are only shared with your explicit consent. The administrative data are stored separately from the research data, in order to minimise any risk of linking confidential research data back to identifiable participants.

The research data that we have collected from you are used in statistical research projects. They are shared with academic researchers, both within KCL and elsewhere (including EU and non-EU universities). When such data are shared outside KCL, they are made completely anonymous, so that individual participants cannot be identified from the data. This is done by irreversibly changing any numeric IDs linked to the data, by stripping out potentially identifiable information such as names, birth dates and postcodes and by removing combinations of rare or unusual responses that might potentially be identifiable. Any responses made originally in the form of text is (where necessary) converted into coded numeric form so that it cannot be linked to any individual.

Parts of your administrative data, namely your postcode, may be linked to information about the area in which you live, for the purpose of statistical research. Where this has been done, the postcode itself is not provided to researchers, and steps are taken to ensure complete anonymity in the research data that are given to researchers for analysis.

Most of the research is carried out by researchers within KCL, but sometimes the data are shared with researchers outside KCL. The data are only shared with bona fide academic researchers based at recognised university research departments, both within the EU and in other countries. The conditions under which we share the data are described on our data access policy page - these conditions are designed to give maximum protection to the way in which the data are used and especially to the confidentiality of participants. All the research, whether in KCL or by collaborators at other universities, involves statistical analysis, and the results are published in peer-reviewed academic journals (see our publications list).

All original electronic research data, genotypic and phenotypic, are stored securely on servers within the KCL network. The files may only be accessed by authorised members of the TEDS staff. As mentioned above, some research data are transformed into anonymous form for the purpose of analysis by researchers, and data files in this form may be stored elsewhere by researchers. However, our conditions for sharing the data, even when in anonymous form, are that they are stored securely, not shared with any third parties, and are deleted once the purpose for which they were shared has ended.

All data, whether administrative or research data, phenotypic or genotypic, are classified as personal data under GDPR. Some of our research data are classified as special category personal data: these include (where you have provided them) genetic data, data relating to your ethnic origin, health, sexual orientation and sexual behaviour, and data about your political opinions and religious beliefs. The general processes of collecting and storing your information, and converting it into forms suitable for scientific research, are referred to under GDPR as processing your data.

What is our legal basis for processing your data?

TEDS is part of the university of KCL, which is officially our Data Controller. If you wish to enquire about our privacy policy you should contact the named Data Controller on the KCL core privacy notice page.

The purpose of TEDS is to conduct scientific research with the aim of improving the public good. This is part of the wider purpose of the university of KCL to conduct research aiming to improve scientific understanding. It is also part of the wider purpose of our funders, the MRC, in promoting scientific research for the purpose of improving public health.

Our official legal basis for processing your data, under GDPR and the Data Protection Act, is the performance of a task carried out in the public interest, namely scientific and statistical research purposes.This legal basis permits us to process special category personal data, as defined above.

This legal basis is separate to, and additional to, issues of consent and ethics. Whenever we collect data from a participant, we do so with their explicit and informed consent. Prior to any data collection, the conduct of the study is passed by an ethics committee within the university of KCL.

What are your rights?

Each participant has the right to withdraw from TEDS at any time. On withdrawal, we delete the participant's contact details, and we agree not to contact them again. However, under the legal basis described above, we have the right to continue to use any research data that you provided, with your consent, prior to withdrawal.

As a longitudinal study, TEDS will typically contact a participant repeatedly over a period of years for distinct studies within TEDS, where consent has been provided for this. Each participant may decide not to take part in any given study, with the option of participating again in future studies. If a participant does not consent to being contacted in this way, we will not contact them again during the given study.

You have the right to receive a copy of all administrative data that we hold about you, for example your contact details. You may also ask us to correct or delete parts of the contact details that we hold. You may also ask us to correct any errors that you think you made when providing your research data.

Related to our legal basis for processing data, as stated above, there are research exemptions that mean you do not have the right to demand erasure of research data that you have previously provided with consent; nor do you have the right to demand changes or restrictions to the ways in which we process the data; nor do you have the right to demand a copy of all the research data provided by or about you. This is because such demands would be detrimental to the research purposes for which the data were originally collected.

Any questions or complaints about TEDS, as well as requests relating to personal data, should be addressed to the KCL Data Controller, whose contact details are on the KCL core privacy notice page. If you are not satisfied with the response given by the Data Controller, you are entitled to complain to the Information Commissioner's Office.