Avon Longitudinal Study of Parents and Children

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ALSPAC/Children of the 90s privacy notice

In this privacy notice we:

1) Summarize how we use your information

2) Provide detail on our legal basis

3) Provide privacy notice information for all

4) Provide privacy notice information specific to researchers

5) Provide privacy notice information specific to study participants

1) HOW WE USE YOUR INFORMATION

This privacy notice tells you what to expect when ALSPAC (also known as ‘Children of the 90s’) collects your personal information. ALSPAC is a longitudinal birth cohort study. This is a type of research project that aims to identify the causes of why some people’s health, development or wellbeing are good, while others may face challenges. ALSPAC works by regularly asking a ‘cohort’ of about 15,000 families - originally from in and around Bristol - about all aspects of their life. ALSPAC also gathers information about these families from other sources (such as health records, or environmental records). ALSPAC processes these data to make sure they are as accurate as possible, as well organised as possible and to remove the risk that any person may be identified from the data. ALSPAC then share these processed data with researchers in order to conduct research aiming to improve the public good. These researchers can be based anywhere in the world.

ALSPAC is a research project run and owned by the University of Bristol. The University is the ‘data controller’ as defined in the Data Protection Act (the organisation who determines why and how personal data are processed). ALSPAC complies with the requirements of the General Data Protection Regulations (GDPR) and the Data Protection Act (2018) with regard to the collection, processing, storage and disclosure of personal information.

Our privacy policy explains how we will use any data that you share with us. We are legally required to tell you how we will use this information and give you the opportunity to tell us not to use your information in that way.

It applies to information we collect when you:

  • Visit our website
  • Post information on social media

For researchers:

  • Complete an online proposal form
  • Complete a data access agreement, International Data Transfer Agreement (where relevant), data user responsibilities agreement, HTA material transfer agreement, or non HTA material transfer agreement
  • Submit a manuscript for review

For participants:

  • Phone, email or text us
  • Send direct message on one of our social media channels
  • Complete our questionnaires via our website
  • Book focus clinic appointments via our website
  • Update your contact details via our website
  • Return completed questionnaires, consent forms, reply slips or other written information
  • Bio samples
  • Collect data from routine official records (for example NHS and other health records; school, college and university education records; economic records; criminal conviction and official caution records; environmental, census and local authority neighbourhood data)

It also applies to the way we handle, process and store your information in:

  • Sending mail, email or direct message via social media channel
  • Storing questionnaires and consent forms
  • Finding participants who we lose contact with
  • Providing research data for use in scientific research

We also provide you with further information on your privacy, confidentiality and anonymity in other parts of our website and, for participants, in the information we send you via post and email when we ask you to take part in clinics or questionnaires.

2) OUR LEGAL BASIS

Who controls the use of our data

ALSPAC is part of the University of Bristol, who is the Data Controller for the information directly collected by ALSPAC. ALSPAC is also the (joint) Data Controller for information about participants collected from routine administrative sources.

The University can be contacted at: Information Governance Manager and Data Protection Officer

The University Secretary, 67 St Michael's Hill, BS2 8DZ

Telephone: (0117) 455 6325

Email: cert@bristol.ac.uk

Complaints or queries

ALSPAC aims to meet the highest standards when collecting and using personal information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We welcome any suggestions for improving the way we handle your personal details.

This privacy notice is intended to be brief and clear and does not cover every single way we handle your personal details in minute detail. We are happy to provide further information on request.

If you would like to complain about our handling of your data, contact the University’s Information Rights Manager via email at data-protection@bristol.ac.uk.

Our legal basis:

ALSPAC’s purpose is to conduct scientific research that aims to improve the public good. This is part of the wider purpose of the University of Bristol to conduct research aiming to improve scientific understanding. Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is:

1) performance of a task carried out in the public interest (Article 6(1)(e) in the GDPR); and, where sensitive personal information is involved:

2) scientific or historical research purposes or statistical purposes (Article 9(2)(j) in accordance with Article 89(1)).

The GDPR defines ‘sensitive personal information’ as information that reveals a person’s racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership; and the processing of genetic data or biometric data for the purpose of uniquely identifying a person; data concerning health or data concerning sex life or sexual orientation.

This legal basis within GDPR and the Data Protection Act 2018 is separate to, and in addition to, our seeking consent to take part in the research process, which we use to help ensure our research is ethical and complies with other applicable laws.

We may disclose your personal information to third parties if we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or in order to enforce or apply our terms of use and other agreements; or to protect the rights, property, or safety of ALSPAC, or others.

3) PRIVACY NOTICE INFORMATION FOR ALL

Visitors to our websites

When someone visits our website, we collect standard internet log information and details of visitor behaviour patterns. We do this to find out things such as the number of visitors to the various parts of the site to help us monitor and improve our site. We collect this information in a way which does not identify anyone. We do not make any attempt to find out the identities of those visiting our website. We will not associate any data gathered from this site with any personally identifying information from any source. If we do want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We do not generally provide any personal information about users of our website to third parties or other users.

This notice is separate to, but supported by, the University of Bristol’s website privacy policy available at http://www.bristol.ac.uk/style-guides/web/policies/legal/privacy/.

ALSPAC uses the Five Safes framework which is a set of established principles which enable studies such as Children of the 90s to provide safe research access to your data and biomedical samples. Find out more here: 5 Safes Framework (PDF, 123kB)

Posting information on social media

ALSPAC maintains a number of social media presences, most notably on Facebook, Instagram, Twitter and YouTube. Users of these social media presences should be aware that any information posted is covered by the terms and conditions of the respective site and is in the public domain.

Please be aware that you have a responsibility to ensure that information you post on our social media sites is within the bounds of the law.

Accessing and updating personal information

As an individual, you have a right under GDPR to update or amend the personal information we hold about you, to ask us to remove your personal information from our records and to obtain information from us, including a description of the personal data that we hold on you. For more information about this please contact us.

ALSPAC aims to be as open as it can be in terms of giving people access to their personal information. Individuals can find out if we hold any personal information by making a ‘subject access request’ under the Data Protection Act 2018. If we do hold information about you, we will:

  • give you a description of it;
  • tell you why we are holding it;
  • tell you who it could be disclosed to; and
  • let you have a copy of the information in an intelligible form.

To make a request to us for any personal information we may hold you need to put the request in writing to the address provided on our website.

If you agree, we will try to deal with your request informally, for example by providing you with the specific information you need over the telephone. If we do hold information about you, you can ask us to correct any mistakes.

Links to other websites

This privacy notice does not cover the links on our website which link to other sites. We encourage you to read the privacy statements on the other websites you visit.

How to contact us

If you want to request information about our privacy policy, you can contact us via the details on our website. Further information is also available in the University of Bristol’s Information Security Policy, available at http://www.bris.ac.uk/infosec/policies/.

4) INFORMATION FOR ALSPAC RESEARCHERS ONLY

We will never sell your personal information to other organisations.

The accuracy of your information is important to us. If you believe any of the other information we hold concerning you is out of date, please let us know.

Online proposal form and supporting documents

This data includes the name and contact details of the Principal Applicant, and those of any co-applicants and any other data users on the proposal and supporting documents. We will use this data so we can communicate with you about your proposal. We may also collect your personal details on a number of supporting documents related to your proposal. These include: a data access agreement, International Data Transfer Agreement (where relevant), data user responsibilities agreement, HTA material transfer agreement, or non HTA material transfer agreement, and ALSPAC ethics and law committee application forms. We may also collect your personal details when you submit a manuscript for review.

List of collaborators with email addresses

This data includes your name and email address. We use this data so that we can communicate with you and keep you up to date with news and information from us. We have collected this data from previous proposal forms submitted by researchers applying to use our data.

5) INFORMATION FOR CHILDREN OF THE 90S STUDY PARTICIPANTS ONLY

Our commitment to you

Taking part in the project is voluntary and you are free to withdraw at any time without giving a reason. You will not be identified from the research – researchers do not see your name with your information – they just see your barcode ID number. Every research project is checked to make sure it meets the highest scientific and ethical standards. In the same way as a doctor who treats you is bound to keep your information confidential, Children of the 90s, and all the researchers we work with, are bound to keep your information confidential. There are independent experts whose job it is to look at what we do and how we do it to make sure your rights are protected. We do not do research with the aim of commercial gain - all our research aims to benefit society and is not for profit.

Changing your mind

If you wish to change the way you participate – or stop participating – in Children of the 90s you can do so at any time. More information on withdrawing from the study is available at: Changing Your Mind. Please contact us via the details on our website to let us know.

Phoning, emailing or texting us

When you phone, email, text or message us we will verify your identity and ensure that you are a study participant before proceeding. Any information that you give us will be recorded in our contact management system (Arcadia) unless you request otherwise. We will also record relevant details (such as date or time) of the phone call, email or text message.

The University’s third-party email provider is Microsoft (Outlook). Please be aware that you have a responsibility to ensure that any email you send to us is within the bounds of the law.

We use a variety of third-party mobile network providers.

Completing questionnaires via our website

When you login to the questionnaire portal of our website we will collect standard internet login information and details of visitor behaviour patterns to help us understand how people are accessing different parts of the questionnaire. We will also use this information to decide if you have completed your questionnaire or not and may then contact you to remind you to complete your questionnaire if you have not already done so.

If we do want to collect personally identifiable information through our website, we will be up front about this. For example, at the end of the questionnaire we will make it clear when we collect personal information such as your date of birth and will explain what we intend to do with it.

When completing your questionnaire online, all information you provide is confidential. Your research data and personal details are kept separately.No researcher will see your name linked to your research data.

Online questionnaires are administered on University of Bristol owned computer systems.

Completing virtual data collection

When you are invited to complete research data collection virtually (using video, or audio) we will make it clear what personal information is required and we will explain what we intend to do with it.

The University has number of recommended third party communications providers including Microsoft (Teams and Skype) and Zoom.

We use a variety of third-party mobile network providers.

Booking clinic appointments via our website

When you login to the clinic booking portal of our website we will collect standard internet login information and details of visitor behaviour patterns to help us understand how people are accessing different parts of the booking system.

If we do want to collect personally identifiable information through our website, we will be up front about this. For example, when you book your clinic appointment online we will make it clear when we collect personal information such as your date of birth and will explain what we intend to do with it. When you book your clinic appointment online we will then use this information to contact you and update your personal records in our contact management system (Arcadia).

The clinic booking system is administered on University of Bristol owned computer systems.

Updating your contact details via our website

When you update your contact details via the online form on our website and hit ‘submit’, your details will be saved as a survey response in our secure Microsoft Form. This form is only accessible to the ALSPAC Cohort Maintenance team staff who will then update your contact details on our contact management system. Your information in the Microsoft Form response will then be deleted.

Secondary contacts

Where you have given us this information, we will store personal contact details of a friend or family member. Please ensure you have their permission for us to store their contact details and for us to contact them if necessary. We store this information on our contact management system. We will use this information to contact your friend or family member if we are unable to get in touch with you.

Returning completed questionnaires, consent forms, reply slips or other written information

When you return an item to us in writing (for example a questionnaire, consent form, reply slip or written letter) we will treat this information as confidential. Your personal details will be kept separately from your research data. We will not pass your personal details to third parties without your consent except under the circumstances described below.

Recording and transcribing interviews

When research data is required to be recorded (audio or video) we will make this clear, explain what we intend to do with it and ask for your consent. Due to the difficulty in guaranteeing that a recorded interview will not contain personally identifiable data, we treat all as if they do.

Interviews are recorded on encrypted devices (such as Olympus DS-3500 digital recorder, encrypted smart phone/tablet/laptop). Interview recordings may be securely transcribed by a University of Bristol member of staff, or by an external transcription company approved by the University to process data subject to the Data Protection Act.

How we will use your personal details

We will keep your personal details confidential and separate from your research data. Your personal details will not be shared with third parties except for certain service providers working on our behalf.

These third parties include:

  • Data 8 (for conducting searches of public databases when we lose touch with you)
  • Shred-It (for confidential waste disposal)
  • V Cars (for taxi bookings for travel to and from our clinic)
  • STEXTS (for sending mass text messages)
  • Clarity Travel (accommodation provider for UoB)
  • RESTORE/Commercial Transfer (for long term storage of questionnaires)
  • University of Bristol Print Services
  • Higher Education Communications (sub processor of UoB Print Services)
  • TopLink Envelopes (sub processor of UoB Print Services)
  • Prism (sub processor of UoB Print Services)
  • The Print Co (sub processor of UoB Print Services)
  • Bristol Bioresource Laboratories
  • University of Bristol Library Special Collections

We will only share your personal details with these third parties under strict conditions set out in a legally binding data processing agreement. This offers assurances about the use, access and security of any personal data disclosed and does not allow any onward disclosure or sales of personal data by the third party. We also use Royal Mail for posting questionnaires, invitations to take part and other correspondence. We may also use data to improve or optimise our participant communications and to measure or understand the effectiveness of communications we send to you and others, and, where applicable, to deliver relevant information to you.

Some research projects need information based on locations - such as where you live, where you work, which school you went to etc. Children of the 90s use addresses and postcodes to produce new information - such as levels of air pollution near your home, or crime rates in your neighbourhood - which we then give to researchers. We do this in a way where the information about you that is used in our research (such as the information you give in questionnaires, or at focus clinic visits) cannot be linked back to your address.

How we will use your research data

We will only collect your data with permission, for example by asking you to attend a clinic or complete a questionnaire. Once we have collected it, it will be processed for research use. It will be stored securely and confidentially. We will de-identify the research data, so you cannot be identified from it. We will then provide this information to researchers on request and only under strict conditions. This process is described in detail at http://www.bristol.ac.uk/media-library/sites/alspac/documents/researchers/data-access/ALSPAC_Access_Policy.pdf A list of approved research projects using your data is available here: https://proposals.epi.bristol.ac.uk/?q=proposalSummaries

Social media

Social media will only be used as a communication tool between us and you. We will not use social media to collect your personal details. We may store your Facebook URL, Facebook email address or Twitter username so that we may continue to communicate with you. This piece of administrative data will be stored securely in our contact management database, along with your other contact details that you have provided to us in the past.

Collecting data from routine digital records

A great deal of information is collected and stored about all of us in our digital records. This information gives a detailed picture of many aspects of our life. Children of the 90s researchers use this information alongside the information we have collected about you (for example, in questionnaires or at ‘focus’ clinics). Through doing this, researchers study questions about why people lead different lives and why some people’s life experiences are positive whilst for others they are less so.

Where we have permission Children of the 90s will identify and take a copy of parts of your official records; including those held by the NHS, the education system, Ministry of Justice and the benefits, tax and earnings department. For some of you we will also collect information about criminal convictions and cautions. Children of the 90s would also like to collect other digital data from such diverse areas as social media, retail shopping and other local studies. We call this way of collection information ‘data linkage’. There is more information about data linkage on the Children of the 90s website at https://www.bristol.ac.uk/alspac/participants/using-your-records/.

Before we start linking to your official records we will write to you explaining how this works and giving you the opportunity to object. We have already done this for the young adults (those born in the early 1990s) in the study. We fully accept your right to decide that you don’t want us to access your records, and if you feel this way it is important that you tell us. For more information about how we use your linked records please visit https://www.bristol.ac.uk/alspac/participants/using-your-records/

Please let us know if you have any questions or if you object to your records being used in this way. You can call us on 0117 3310033, email alspac-linkage@bristol.ac.uk or write to: Data Linkage Team, Children of the 90s, Oakfield House, Oakfield Grove, Bristol BS8 2BN.

We will not provide the organisations who keep your records with any of the information you have given Children of the 90s; for example, information from questionnaires or given at ‘focus’ clinic visits. Collection of this information by Children of the 90s will not affect the services you receive from government departments in any way. To make sure we accurately identify your records we will use your personal details (e.g. name, address, date of birth, NHS ID) to make an accurate link to the equivalent information in your official records.

Children of the 90s and Data Linkage Collaborations

The Children of the 90s project is totally committed to making access and understanding of the study and the samples and data we have as clear and easy as possible. We have always worked closely with external researchers and encourage collaborations between organisations.

At the beginning of the COVID-19 pandemic Children of the 90s helped to found the UK Longitudinal Linkage Collaboration, a national Trusted Research Environment run by the University of Bristol (you can read more about the UK LLC here https://ukllc.ac.uk/) which brings together the de-identified study data and linked records of participants from over 20 UK longitudinal studies. By combining the data from a large number of studies approved researchers are able to access a larger dataset than any one study can provide. Researchers also benefit from accessing these multiple studies through a single point of contact, and they can use this data within the UK LLC but are not able to remove data from this secure environment.

The Children of the 90s has seen the success of this collaboration between studies in the field of COVID-19 research and are encouraged that this method of combining resources can provide significant benefits in other areas of research. No personal data or identifiers will ever be provided to any other study, or collaboration of studies. The Children of the 90s, and any other research collaborators, will continue to honour your individual instructions on which areas of your data (e.g. health, education, environmental) you allow us to access through secure data linkage. You must let us know if you do not want your data used in this way by getting in touch.

Who we share data with

Children of the 90s operates as a scientific resource for the legitimate research community. Researchers working at Universities, in government departments, at charities or other organisations across the world may apply to access research data. Each application is assessed by the ALSPAC Executive, who decide whether the researcher is legitimate, if the data requested is needed to conduct the research, and if the research project can be conducted in line with the commitments we have made to you. We only share data in a way that seeks to protect your confidentiality.

About this privacy notice

This is version 2.9 of the privacy notice, originally published 13/04/2015 as version 1.0 and most recently amended on 16/04/2024.

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