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- You will not be identified from the research - researchers do not see your name with your information - they just see your ID number
- Taking part in the project is voluntary and you are free to withdraw at any time without giving a reason.
- We do not do research with the aim of commercial gain - all our research aims to benefit society and is not for profit.
- 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, the BRHS 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.
BRHS Privacy Notice
The BRHS Privacy Notice has been updated in relation to the Data Protection Act 2018 (UK's implementation of the General Data Protection Regulation (GDPR)).
Participant consent
The BRHS is a voluntary research study. You are under no statutory or contractual obligation to provide us with your personal data. Consent has been sought to underpin the follow-up of all participants for all-cause mortality and morbidity and has been regularly updated when the participants have re-attended for follow-up clinical assessments. Each person who joined the BRHS provided their consent for us to collect, store and make available information about them (including data from genetic and other assays of the samples that were collected) for health-related research, and for their health to be followed over many years through medical and other health-related records, as well as by being re-contacted by BRHS research team.
Consent has been obtained for ethical reasons, collection and use of human tissue and compliance with the Common Law Duty of Confidence for disclosure of confidential information. With regards to the Common Law Duty of Confidence, we will ensure that this data is handled in line with participants' 'reasonable expectations'. It gives UCL permission to hold and use information that identifies you and allows us to follow up on any changes to your health.
Where it has not been possible or practical to contact study participants, we have approval from the NHS Health Research Authority’s Confidentiality Advisory Group (CAG) to obtain personal information directly from the NHS under a ‘Section 251 Exemption’. Section 251 enables the common law duty of confidentiality to be lifted to enable disclosure of confidential patient information for medical purposes, where it was not possible to use anonymised information and where seeking consent is not practical. For information about the CAG and Section 251, please visit the Health Research Authority website.
You have the right to withdraw consent at any time, You can find out more about the withdrawal options here