Securing your official records

How often will Children of the 90s access my records?

Your records will probably be accessed once or twice a year to allow our researchers to measure changes over time. This will allow us to keep up to date with your health status and the other big events in your life.

Protecting your privacy

How a person or organisation can or cannot lawfully use your personal data is set out in the Data Protection Act 2018 (also known as the EU General Data Protection Regulations, or GDPR) and is enshrined in Common Law (the Common Law Duty of Confidentiality) and in ethical standards.

The responsibility for making sure your personal information (that is, information that links to you as an individual) is used within the law rests with the organisation which determines the purposes for and manner in which your personal information is to be collected and used. This makes this organisation the data controller for this personal information.

Information that you give to Children of the 90s

Children of the 90s (part of the University of Bristol) is responsible for the information you give us at a focus clinic or in questionnaires and we decide how it is used in order to comply with your rights. Therefore, for the purposes of the Data Protection Act, the University of Bristol is the data controller for personal information it collects from you for the purposes of this study.

Information about you that we receive from your official records

Organisations that collect your information for official records, (e.g. the NHS collects information about you in your patient health records) are the data controllers for this information.

Children of the 90s will extract a copy of these records under a data sharing agreement with the organisation that originally collected your records. Once Children of the 90s have received your records then the University of Bristol will be the data controller for this information (but can only use the data in line with the terms of our sharing agreement).

Children of the 90s (University of Bristol) will

  • Make sure that your records remain confidential and advise our researchers on how these records should be handled in accordance with the Data Protection Act in order to comply with your rights.
  • Work together with the official organisations which collect your records to protect your privacy.
  • Children of the 90s will respect your decision if you don’t want your information used in this way.

Your personal details

These include your name, date of birth, address, phone number(s), email address and study status: i.e. what you have agreed to take part in. You can update your personal details by contacting us.

Under the Data Protection Act 2018, you have a right to know what personal data belonging to you that we hold. Where requested, we will provide you with a readable copy of your personal details and study status we hold, by contacting us at the address below. We will need to confirm your identity before supplying you with this information to ensure confidentiality and to comply with the Data Protection Act.

Where the data has been collected by Children of the 90s (University of Bristol) we allow you to challenge the data we hold about you and where appropriate you may have the data erased, rectified, amended or completed. For complaints or queries about the privacy policy or data protection queries generally please contact us at:

Email: info@childrenofthe90s.ac.uk
Phone: 0117 33 10010
By post: Children of the 90s, Oakfield House, Oakfield Grove, Bristol BS8 2BN

If you would rather speak to someone outside of Children of the 90s then you can contact the independent ALSPAC Ethics and Law Committee. One of their roles is to see the study from the point of view of the families involved.

Chair of ALSPAC Ethics and Law Committee
University of Bristol
Oakfield House
Oakfield Grove
Bristol
BS8 2BN, UK

Email: ethics@childrenofthe90s.ac.uk

Or, you can speak to someone from the University of Bristol who is not part of Children of the 90s.

Information Rights Manager
University of Bristol
Senate House
Tyndall Avenue
Bristol
BS8 1TH, UK

Email: data-protection@bristol.ac.uk

If you are not satisfied with the reply you receive, you can contact the Information Commissioner’s Office (ICO), the UK’s independent public body set up to promote access to official information and protect personal information:

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Tel: 01625 545745

Email: via website

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