Ethical Tissue and the University of Bradford take data privacy very seriously and the information below is especially relevant for patients and volunteers who have kindly agreed to donate samples and data to the biobank.
The University is a public research institution established by Royal Charter to advance knowledge and education through its teaching and research activities. The University’s Royal Charter can be found on the University website.
Health and care research should serve the public interest, which means that we must demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
Why we obtain personal data and what we do with it
Scientists need human tissue, cells and body fluids for research into how a disease starts as well as finding different ways of diagnosing and treating a disease or illness. The purpose of Ethical Tissue is to help them achieve this.
When donors agree to be involved, the samples we have permission to collect are transported to our tissue bank and either used immediately or stored for use at a later date. We may send some stored samples to other approved tissue banks or companies both in the UK and abroad to support their research work.
All tissue samples need to be associated with some basic information about the donor and specific information about the donation. This data enables researchers to have a better understanding of the results they obtain.
Donors can have complete confidence that their personal details are never released. Data is stored with minimal identifying information on the secure Ethical Tissue database. All donations and information go out to the researcher using the unique code on their consent form and are completely anonymous. Donors can also withdraw their support from ongoing biomedical research by writing to us in confidence.
Frequently asked questions
Under data protection law we have to specify the legal basis that we are relying on to process your personal data. In providing your personal data for this research we will process it using explicit consent as the lawful basis.
All patients are required to give consent every time we collect data and tissue samples. A booklet will be given for them to read and they will be given an opportunity to ask questions. They are then asked to sign a consent form for the storing and use of their data for teaching and research purposes.
When you agree to donate samples and data to Ethical Tissue we will collect the relevant information from your NHS medical records and/or through consultation. This information may include your name, NHS number, contact details, date of birth, gender, ethnicity, as well as other health-related data required for scientific studies such as previous medical history, smoking history, alcohol use and medication information. We will use your personal information to make sure we are matching the correct medical record to the correct donated samples. A researcher may need some or all of this information.
To safeguard your rights, we will use the minimum personally identifiable information possible.
Researchers receiving samples and data from Ethical Tissue will NOT receive your personal information.
We collect your personal data through discussions with the donor or alternatively accessing your hospital notes once you have consented for us to do so.
The information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.
Your information could be used for research in any aspect of health or care and could be combined with information about you from other sources held by researchers, the NHS or government.
Where this information could identify you, the information will be transferred and held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.
Due to the long term research value of the data we are retaining, we will hold this data indefinitely.
As a person whose personal data we are processing, you have certain rights in respect of that personal data; you have the right:
- To withdraw consent
- To access your personal data that we process;
- To rectify inaccuracies in personal data that we hold about you if it is inaccurate or incomplete;
- To request the deletion or removal of your personal data where there is no compelling reason for its continued processing;
- To restrict the processing of your personal data in certain ways;
- To obtain your personal data for reuse;
- To object certain processing of your personal data;
- To complain to the Information Commissioner’s Office about the way in which we process your personal data.
|Written by||Wayne Burrill|
|Reviewed by DPO:||15 January 2020|
|Approved By:||Matthew Stephenson|
|Date Approved:||15 January 2020|
|Next Review Date:||1 February 2020|