What does the biobank do with my samples and data?

Samples may be used immediately or stored securely with restricted access in the biobank for future research. When a sample is first collected, the name of the patient and medical record number is recorded, so that the healthcare team can link the samples to the patient. Your sample will not be labelled with any information that can identify you. Instead, it will be given a unique biobank number or code.

Your healthcare data will be stored on a secure password-protected computer and only the investigating healthcare team will have access to information that identifies you. Your sample and healthcare data may be shared with other researchers, however, your identity will never be shared. Researchers very often work with other universities, hospitals or health-related companies (businesses involved in the development of new tests, treatments, medicines, medical devices) in Ireland and abroad, so that their work will have a wider impact and they can avail of other technologies that will lead to better tests and treatments.

The biobank does not benefit financially from sharing your samples and healthcare data. The healthcare team will discuss this in more detail with you if you decide to participate in the biobank.

How does the biobank protect my confidentiality?

The biobank has very strict governance procedures in place to ensure your healthcare data is treated with privacy and confidentiality, according to EU and Irish data protection laws. All research studies need ethical approval to ensure they are carried out ethically and safely, that your rights are protected and that the study complies with data protection regulations. If your coded sample and data is being shared with other researchers, a legal agreement is put in place to ensure that these are used as agreed.

How do I get involved?

To contribute to the biobank, please speak to a member of your medical team.

For more information on biobanks and associated research studies, please see www.stjames.ie/cancer/research/biobanknetwork/

Email: cancerbiobanks@stjames.ie

We are grateful to the patients and public who contributed to the development of this leaflet with the Biobank Network in Trinity St. James’s and the National Biobank Working Group. This project was kindly supported by the Irish Cancer Society. Version 1.0 December 2020 Why are biobanks important for research


Lay description:

A biobank is a collection of blood and/or tissues together with associated clinical data from healthy volunteers and/or patients which is made available for medical research. Researchers need to study these samples and associated clinical data from large numbers of people, in order to understand complex disease processes such as cancer and how these can be targeted through the development of new treatments that will ultimately lead to better responses and longer survival. Such large numbers of samples are not easily obtained and their collection often proves costly and time consuming. Biomedically-relevant and quality-assured biological specimens within a biobank therefore provide a powerful and valuable resource for researchers and their industry partners to develop and validate targets for screening, monitoring and treating diseases. Such biological resources, together with information derived from the human genome, continue to play a role in the development of novel personalised therapies for patients based on understanding an individual’s genetic make-up. An example of this is the success of Herceptin in the treatment of HER2-positive breast cancer. Biobanks are therefore part of key infrastructure required in sustaining the collection of patient samples for research, in addition to continued participation in international collaborations and clinical trials. All samples and data collected as part of a biobank are assigned a unique code to maintain the privacy and confidentiality of the patient and in line with international best practices for biobanking and current GDPR and Health Research Regulations in Ireland.


Today’s health research is tomorrow’s healthcare. While it takes several years before findings from basic research benefit patients, without it, we would not have many of the treatments that we currently rely on for treating cancer and other diseases. Discoveries such as Herceptin and Glivec (Imatinib) and other drugs which fall into the category of personalised medicine, could not have been developed without the relevant research and patient samples which permitted the translation of this research into personalised treatments for patients.

Patients and the general public are important to the success of such discoveries and drug development. Patients contribute samples on which current and future research is based, and importantly, both patients and the general public have a major role to play in relation to influencing public and government opinion and those who provide funding for research. Therefore, one of the Biobank’s essential roles will be to ensure that people understand how their consented donation of samples will benefit them and future generations. In addition to patient involvement, education and awareness of biobanks, we believe, should also involve patient organisations and the general public. Increasingly, the general public, including patient-support groups, are recognised as active participants in the development of such large-scale projects. Patient organisations can ensure that information materials are appropriate for target groups. These can be communicated with participants, and they can also offer a sounding board in relation to issues such as consent. Patient organisations and lay personnel currently participate in ethics and advisory committees relating to research projects and biobanks, providing a key input from a patient perspective in the design, execution and dissemination of research outputs.