Donors

Information for Donors

Your Samples

Your samples will be stored securely in the Liverpool University Biobank (LUB) with access restricted to Biobank trained staff.

Some may be used in Liverpool for current research and be used up in a few weeks, while other samples will be stored securely for future research.

Some of your samples may be used to study genetic material (DNA, RNA) and protein, for example, trying to understand if certain individuals or families are more at risk of certain conditions because of their genetic makeup (DNA).

Sample Ownership

LUB acts as custodian of your cells, tissue and DNA but they belong to you.  If you change your mind you can withdraw your consent at any time by completing the consent withdrawal form.

Your left over tissue is gifted, to support medical research so you will not receive payment for your tissue. However, future patients may benefit from the results by an increase in the range of treatments available.

Protecting Your Data

Researchers will not receive any information that will identify you such as your name, date of birth or hospital number. They will have access to clinical data relating to your sample such as:

  • Disease
  • Sex
  • Age
  • Treatments

This information is essential to help researchers understand what your illness was like and relate what is found in the laboratory to what happens to patients.

Data Protection

The University processes personal data as part of its research and teaching activities in accordance with the lawful basis of ‘public task’, and in accordance with the University’s purpose of “advancing education, learning and research for the public benefit. Under UK data protection legislation, the University acts as the Data Controller for personal data collected as part of the University’s research.

The [Principal Investigator / Supervisor] acts as the Data Processor for this study, and any queries relating to the handling of your personal data can be sent to the LUB Manager / Data Manager at Biobanking@liverpool.ac.uk.

If it is necessary to transfer personal data outside of the EU, advice on ensuring adequate protections are in place would be sort from the University of Liverpool Legal Services department. Any information that leaves the Biobank will be anonymised so that the researchers who work on your samples will not be able to identify you personally.

Research

LUB supports a large range of research interests that contribute to the understanding and treatment of diseases and include the following:

  • Investigation into the mechanisms involved in the development of disease
  • The discovery and validation of new therapeutic targets
  • The identification and validation of biomarkers for disease diagnosis, prognosis, treatment classification, and treatment response prediction
  • The further development of personalised medicine.

Researchers will use your samples to understand why cells or tissues have become diseased or are functioning correctly. In order for them to do this, they must repeat tests on as numerous samples from as many different donors as possible. In order to detect differences between samples, it is essential to compare diseased samples to healthy ones.  

Governance

The use of human samples in medical research is highly regulated.

LUB store samples under the ethical and legal framework of the Human Tissue Act (2004) and confidential donor information is stored under the Data Protection Act (2018).

Human Tissue Act

The Human Tissue Act 2004 regulates the removal, storage, use and disposal of Relevant Material. In order to use the material in a research project approval is required from a Research Ethics Committee. LUB has been ethically approved by the North West – Liverpool East Research Ethics Committee as a Research Tissue Bank with generic approval status for projects.

Quality Management

All LUB staff must follow the University of Liverpool policies for Research Tissue Banks, the Operation Manual and Standard Operating Procedures (SOPs). These are in place to ensure that:

  • all staff are trained
  • procedures are well documented
  • consent forms are in place
  • systems are in place to protect the integrity of all samples and data
  • samples can quickly and easily be retrieved.

 

 

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