The ability of science to find treatments and cures for debilitating human diseases and ailments relies upon fully understanding the condition. Scientists need to investigate the underlying causes of the disease, why/how it develops, and how it affects the body. As such understanding matures the aim then turns to how to prevent, alleviate/treat or even cure such conditions. All potential treatments need to take into account possible unwanted events, whereby treating one condition may in fact cause major negative side-effects for the patient. There is much to consider.

Such research (called Life Science Research) invariably starts in the laboratory. This may be Universities, Charity or Government Funded Bodies or in Companies. A vitally important part of this research strategy is for scientists to have good models of the disease and what they are studying. Samples taken directly from the human body, or patient suffering from the disease under study, offer the best ‘model’ for which to conduct research. Indeed, some important questions that come up about a disease, or its treatment, can only be answered with access to the human bio-samples.

So, what’s involved, how are patients involved and how are the samples actually obtained………..

A visit to a hospital often results in a sample of patient tissue and/or bodily fluid being taken. For example, tissue is often removed during routine surgery (for example cancer surgery, mole removal) while blood or urine (wee) samples are commonly taken to investigate the condition of a patient, for diagnosis, to determine treatment and/or to discover how treatment is progressing.

We work with the patients medical team to seek permission to involve the patient and ask for approval. If they feel that it not appropriate (for example due to treatment) we will not approach the patient. If they agree then we will work with the patients clinical team and ask them to approach you. Patients are given a ‘Patient Information Sheet’. This explains what’s involved during the process and gives answers to a list of common questions a donor may have. Some key points are:

Q: How will the patients treatment be affected?

Treatment will not be affected whether a patient agree to take part or not. The risk does not change as all procedures/treatment go ahead as normal. What we will do is simply take a sample for research at a time which it is possible to do.

Q: Do patients have to take part?

Not at all. The decision is entirely at the free will of the patient, and the patients alone. Patients can say no without giving a reason. Patients will not be asked why they said no.

Q: What happens if a patient says Yes?

Your treatment won’t differ at all. from that normally. The only difference would be that any excess samples would be diverted towards research as opposed to being discarded.

Q: Do Patients have to give personal information

No. Personal, identifying information is not needed. However, we will ask approval to look at medical records for clinical information (i.e. treatments, how patients responded to treatment, results of blood tests etc). The reason for this is that it will give the scientists a better idea of what the results mean when the sample is used in studies.

Q: can patients change their mind?

Yes. Patients can change their mind at any time. If patients do change their mind then they simply contact the administrator named on the information sheet and we will take the necessary steps to remove their samples from the BioBank.

Q: What kind of samples are the scientists after.

This varies considerably but typically includes:

- Solid tissue (such as small fragments of Liver, Kidney, Skin)
- Whole Blood
- Parts of the blood including Serum or Plasma
- Urine (wee)

Patients can ask as many questions as they like about the process and permission is only ever obtained when the patient feels comfortable enough to give such permission.

We record all permission in writing.