What to expect when donating samples

It is difficult to generalise what to expect when you donate your tissue to a biobank, as each biobank will operate in a slightly different manner. So this has been intended as a guide describing some of the key points during the various stages of biobanking to give you an idea what is likely to happen.

When will I be approached?

A biobank may contact you at anytime but the most likely scenario is when you have a hospital appointment. You may first receive some information through the post, such as information leaflets or consent forms, but you should be given the opportunity to speak to a biobank staff member about your questions at the time of your appointment. All biobanks have to seek your informed consent, so it is important that your questions are answered so you understand what you are being asked to do before you sign the consent form.

What will I be asked to do?

Many biobanks are seeking your consent to collect any leftover samples that were taken from you but not needed for your care and so would otherwise be thrown away. In these situations, it is most likely that will not have to do anything more than what you would have been asked to do at your hospital appointment in the first place. The biobank will liaise with your clinical team to ensure the samples can be retrieved and stored if you have consented.

Sometimes biobanks will require additional samples to be taken in addition to what was taken during your appointment. For example, this may mean taking an additional blood sample from you that your clinical team would not have needed for your care. If you are unclear why you are being asked for any additional procedures, please ask a member of the biobank staff.

Your consent can also cover any future procedures at your current and surrounding hospitals. Therefore, you should check whether you are consenting to a ‘one-off’ donation or ‘enduring’ consent, meaning they have your permission to take samples in similar situations in the future.

What happens to information about me?

Your personal information or data, is as valuable as your sample. The biobank will not only protect and look after your sample but they will equally keep your data secure and private. How they access and retrieve and store your data can vary.

Why do they need my data?

We are an incredibly diverse species and so the diseases we suffer are also diverse. In breast cancer, an area which receives much research, there are currently four widely accepted sub-types. Most recent research using samples from a biobank has suggested there could be seven different types of breast cancer. From the donated samples, researchers are able to detect differences in the make up of these cancers to help them understand the different types. However, they can only answer the really important questions, such as, ‘Do patients with a particular type of breast cancer survive longer?’ if they also have access to records about the person who donated the samples.

How do they access my data?

The most common method is for the biobank, with your consent, to access your medical records and find the required data. During the consent process they should make it clear to you what data they will take and use. It is not uncommon for the biobank to also ask you to undertake a questionnaire, usually at the time they seek your consent, and potentially a follow-up questionnaire several years later. Again, this should be made clear at the point of seeking your consent.

What about my privacy?

Biobanks act as a guardian of the data about you and your samples and nearly all operate on the principle that the researcher can never know your identity. Biobanks can achieve this in several ways. The most common is by creating a random, but unique, identification number (or, ‘identifier’) for you with only the biobank knowing the link between your real identity and the random identifier given to you and your samples. The researcher would then only ever have your random identifier. This technique is referred to in two main ways either ‘linked-anonymised’ or ‘pseudo-anonymised’. How they protect your privacy should be made clear when they ask for your consent.

Will I be contacted again in the future?

Whether you are contacted in the future will depend largely on the biobank. Currently the sole point of contact with the biobank is usually at the time of consent and nothing more will be asked of you in the future. This approach is starting to change, particularly in two areas.

The first area, is in relation to data. Your data can be incredibly useful and some biobanks would like to follow your health for an extended period of time. Sometimes it is not possible to access the information they need and therefore contacting you to ask you about your health may be the most reliable option.

The second area, is for you to receive feedback about what samples from the biobank were used for and in particular, if anything proven to be of direct relevance to your care was found. Returning results to donors is a controversial area as biobanks are not qualified to give health information and advice to patients. This area is receiving greater attention and increasing pressure is being placed on biobanks to set up systems to provide more information back to donors whose samples have been used.

In both scenarios you should be made fully aware of any future contact by the biobank at the time of consent.

What if I am unsure?

The primary role of the biobank in relation to donors is to make sure you are fully informed of what they intend to do and how they will do it. If you are unsure of anything being asked of you, you should first talk to a representative of the biobank. They should give you sufficient time to take in the information they give you before asking you to sign the consent form and also give you the option of withdrawing your consent should you change your mind in the future.

For independent advice on donating samples visit givemysample.org