Overview

Biobanking is when patients agree that we can take extra or unused tissue or bodily fluids during an operation, biopsy or blood test for research. A biopsy is when a doctor removes a small amount of tissue or cells to examine under a microscope.

Samples can include:

• tissues or cells that are taken during surgery but not needed for diagnosis
• extra blood or tissue being taken for diagnosis or treatment
• pee (urine), poo (stool) or saliva collected specifically for the biobank

Scientists analyse the extra material to find better ways of diagnosing, preventing and treating medical conditions. They can include heart disease and cancer.

Along with the sample, the biobank also collects relevant information about each patient and their diagnosis.

Your donated samples can help us better understand diseases that affect you and future generations.

Who can give samples

• Patients who come to our hospitals
• Healthy volunteers

Unfortunately, we cannot accept samples from all patients into our research biobanks.

For more information, please speak to the clinical staff who are looking after you.

How to give a sample

When you come to one of our hospitals, we might ask you about donating samples to a biobank and giving us access to your medical information.

If you have an operation, not all of the tissue is needed for diagnosis. We would like to 'bank' the unused pieces and use them for research.

If you have a biopsy or some blood taken, we would like to take a little bit more for a biobank.

Sometimes, we also ask for saliva, pee or poo samples.

We may ask if you are willing to donate blood, saliva or pee samples if you come to clinics in the future. We can use these samples to monitor health and help to predict how well a treatment will work.

Participation is completely voluntary. Your decision does not affect your clinical care in any way.

We might give you more detailed information about a biobank at your appointment. You can ask us any questions.

How our research helps

Guy's and St Thomas' hospitals and our academic partner King's College London manage biobanks that research specific conditions. These include:

• cancer
• dermatology (skin conditions)
• infectious diseases
• thrombosis (a serious condition where one or more clots block the blood vessels)
• women's health

Biobanks help scientists answer important questions about why conditions happen and who is at risk. The answers to these questions can lead to earlier, more accurate diagnosis and better treatment.

The same disease can affect individuals in various ways. Some people respond better to treatment than others. Scientists need to study samples from people with different ethnic and cultural backgrounds so that they can help all patients.

By using research biobanks, scientists can quickly access a large number of samples and information from the local patient population.

Giving your permission (consent)

We ask you to complete a consent form, which allows a biobank to collect samples and data. We also hope that you agree for us to collect extra samples from any future surgery you may have.

On some consent forms, you can choose the types of research that you'd like your samples to be used for.

Your data and confidentiality

At our biobanks, we put patients first. Patients might benefit from the research we support, but they are also essential in guiding our activities and making sure that the information we give is relevant.

We appreciate that there are times when being asked to donate to a biobank is not your priority. So, we work with patient representatives to reduce the impact on you, while making sure we continue to comply with all the regulations.

Confidentiality

We have a legal and moral duty to make sure that we do our research with the maximum respect for participants and their privacy.

We always ask for consent to use samples and access medical data.

When we give these samples to scientists, they are anonymised. This means that there is no way that the scientists could work out who the patient is. We have robust systems to make sure we never release any information that allows you to be identified.

Storing your samples and information

We collect information about you and your medical condition to add to the biobank database. These include:

• your diagnosis, treatments and response to treatment
• your family history
• other illnesses you have or medicines you take
• smoking and drinking habits

Collecting this data means we can identify patients who have similar conditions or have been treated in a similar way.

The samples are helpful in many different projects. For this reason, we would like to keep the samples until we have had a chance to use them. We may need to store the samples for more than 20 years.

If you change your mind, you can withdraw your consent at any time. We then dispose of any samples that we may still have in the biobank and delete any data we collected.

How your samples and data might be used

• Scientists from the NHS, universities and commercial companies (national and international) can apply to use samples and data.
• We may use your samples and data to find new biomarkers. They are substances that can predict how well a treatment will work. This may include examining genetic changes.
• For research where donated tissue samples are kept alive and grown in the laboratory or used in animal models, we always ask for specific consent.

Video of the journey of a biobank blood sample

This video shows what might happen to your blood sample when you donate to the King's Health Partners Cancer Biobank.

The video has no sound and was filmed before the coronavirus (COVID-19) pandemic.