What are the benefits & risks?
Generally, the purpose of donating to a biobank is not to get direct personal benefits by participating. This is true of most research studies.
Depending on what tests you have when you sign up to a biobank, you may get some health information that it’s helpful to know about. An example could be finding out that your blood pressure is high and being advised to ask your GP for guidance about steps you can take to try to lower it. But this won’t be the case for all biobanks – most research studies don’t provide any feedback to participants and the kinds of testing done on samples for research are not equivalent to clinical testing. And although your GP may be told if you’re donating to a biobank, they won’t receive any additional health information about you.
It’s important to understand that any samples you donate aren’t for finding out more information about you as an individual. Rather they will may be used to enable research about things that affect people all over the world.
However, this potential value of biobanks – and your donations to them – for research into diseases and their causes and treatments can’t be underestimated. By contributing to one you are helping this research to happen and in future the health outcomes for many people could be greatly improved.
You may be able to access publications or summaries of the results of research about the work that has been done using materials from a biobank that you donated to. These are often available online if the biobank has a website.
A particular area of medicine that may benefit from research done using biobank resources is personalised medicine. It’s thought that the way many diseases progress and affect people varies depending on their genetic make-up – just like a person’s genes determine the things we can see about them (their hair and eye colour for example).
Personalised medicine would use the detailed information provided by a person’s genes to potentially predict and therefore prevent illnesses they may be at risk of. This genetic information could also make it possible to treat diseases in a way that is more effective for the person who has it.
However, at the moment, scientists don’t know enough about how our genes affect how diseases develop or affect us – so on the whole, the treatment for a disease tends to be the same for everyone who has it.
Biobanks hold genetic material from thousands of people, along with information about their health and lifestyle, so they give researchers the ability to investigate on a much larger scale how these interact. In time, it is thought that this will enable them to use a person’s genetic make-up and medical information to try to prevent common diseases from developing and treat them more precisely if they do.
Any risks will vary depending on the type of biobank and what you’re donating. If you’re donating to a biobank as a healthy person, you will probably have some measurements taken, such as height, weight, blood pressure, and you’re likely to have a small sample of blood taken. The risks associated with these procedures are minimal but may cause some discomfort or inconvenience (for example, you may be asked to fast overnight before having blood taken).
Other types of biobank may collect samples of tissue, skin for example or a small part of an organ such as your liver. This may be more inconvenient and perhaps painful for you although the samples may be taken during surgery that you’re having anyway. An example might be if you’re having a portion of your liver removed in an operation, you may be asked to consent for some of this to be used to research conditions that affect the liver.
Other risks may be less obvious. Remember that you’re providing a lot of information about yourself although every step will be taken to minimise the possibility of your confidentiality being breached, there is still a very small chance that this could happen. The Data Protection Act means that your information is legally protected and will not be shared or used for anything other than the purposes that were laid out when you donated. You can read more about this in Who can access information and samples?
If this feels like too much of a risk for you, you can of course decide not to donate to a biobank. And if you have already donated but later change your mind, you can withdraw at any time. Bear in mind that although your information and samples won’t be used in any future research studies, it probably won’t be possible to remove them from any that have already begun or been completed. For more information about things to consider before consenting to participation in a biobank, read Why do I need to know about biobanking?
When you donate a sample to a biobank you’re donating your genetic information. Over the last couple of decades, scientists have made huge progress in studying and understanding more about genes and how they can affect the development (or not) of some diseases.
You can read more about this in Why do I need to know about biobanking?
These advances mean that if you donate to a biobank, the researchers who use your samples may find out information about you from your genes. Depending on what this is, there may be health implications for your relatives you as well as your relatives. On the other hand, they may not find any relevant information. Depending on what tests you have when you sign up to a biobank, you may get some health information that it’s helpful to know about. An example could be finding out that your blood pressure is high and being advised to ask your GP for guidance about steps you can take to try to lower it. But this won’t be the case for all biobanks – most research studies don’t provide any feedback to participants. And although your GP may be told if you’re donating to a biobank, they won’t receive any additional health information about you.
You can find out more information about researchers using your genetic material and the possible implications for you and your family in the following case study.