Privacy and ethics

Privacy Statement

The Institute of Cancer Research (ICR) is committed to protecting your privacy. All information provided by participants and collected from them during the course of the study will be kept strictly confidential. The storage of personal contact details is necessary to enable the study team at the ICR, with appropriate ethics approval, to communicate with individual women who are taking part in the Generations Study.  

How do we (i.e. ICR employees, with appropriate ethics approval) collect information from this website?

What information do we collect?

The information collected is your name, postal address, telephone number and email address. By providing this information, you consent to its collection and use in accordance with the purposes below.

How do we use this information?

We will use the contact details you have entered on the website to provide you with the information you have requested about the study. The personal information you supply will only be available to the study team at the ICR, with appropriate ethics approval. In particular, it will not be supplied to, or be available to, other ICR employees or Breast Cancer Now, and will not be used to solicit donations by or on behalf of Breast Cancer Now or the ICR.

How do we protect personal information?

The personal information you enter can be accessed only by the staff at the ICR conducting the Generations Study. The ICR takes appropriate measures to ensure that the information is kept secure.

Will we disclose the information we collect from the website to outside parties?

No. The ICR will only disclose your information with your consent or if required to do so by law.

Will the information collected about me be kept confidential?

Yes, of course. All information collected about you during the course of the research will be treated in the strictest confidence, in accordance with the Data Protection Act, and kept under the supervision of Professor Houlston, who is a medical doctor. We will not pass on personal information to anyone outside the study, and no individually-identifiable information will be published. All individually-identifiable data will be destroyed at the end of the study.

How is the study ethically approved?

The study has been approved, under the procedures for national medical research studies, by the South-East Multi-Centre Research Ethics Committee. 

Breakthrough UK Women’s Cohort Study (Breast cancer now Generations Study)

With appropriate ethics committee and Health Research Authority approval, since 2003 individually identifiable information from medical health records and on cancer and mortality in women in the UK who joined the Breast Cancer Now Generations Study (previously known as the Breakthrough Generations Study) have been sent to The Institute of Cancer Research by NHS-Digital and National Records of Scotland (Public Health England ceased to exist from 1st October 2021 and the information PHE previously provided is now supplied by NHS-Digital). The information originates from medical records and national cancer and death registrations, and is necessary to enable the analyses described to participants when they joined, including finding factors affecting risk of breast cancer, other cancers and causes of death. As stated to women when they joined, the study will continue for at least 40 years, and individually identifiable data from these organisations will not be shared outside The ICR.

The women who have joined the study are volunteers, and are free to withdraw if they wish to do so at any time. Appropriate ethics and data protection approval is carried out at all levels in the process.

The ICR is the data controller for this study. The ICR collect special category data (health information) for the purposes of this study. The lawful basis for processing this information is for the performance of a task carried out in the public interest. The ICR processes sensitive health and genetic information for the purposes of scientific research with appropriate safeguards in place to protect personal information, as required by the UK General Data Protection Regulation.

Individuals have the right to request from the controller access to and rectification or erasure of the personal data, or restriction of processing of personal data, or to object to the processing of such personal data, as well as data portability.

If you are a member of this study and want further information or wish to opt out of future supply of the above data by these NHS organisations, please do not hesitate to contact us via email at or by post:

ICR Data Protection Officer,
123 Old Brompton Road,

If you feel we have breached your rights under UK GDPR you have the right to lodge a complaint with the Information Commissioners Office.