Questions to ask before donating

 

It is important to know what you are agreeing to in medical research. If you take part, researchers could find out about you and your relatives’ genetic makeup and possible health issues though you may not be told about them.

 

Biobanks are being used more and more for research into diseases and their causes and treatments. For this to happen they need samples and information from large numbers of people. This means that it’s becoming more likely that you will be asked to consider donating to one so it may be helpful to know what they are and what they are used for before you are asked.

 

Many people both in the UK and around the world have already donated to biobanks. Many universities and hospitals have also set them up.

500,000 people enrolled for the
UK Biobank

There are many reasons why biobanks are set up and there are different circumstances under which you may be invited to think about donating to one. You will of course be given information and have the chance to ask questions, and you will have to sign a consent form before anything can go ahead. However, there are still a lot of things to think about and it can be helpful to have some background knowledge.

 

Genetic information

Donating to a biobank means you’re giving your DNA. You may have heard DNA described as the ‘blueprint for life’, or ‘the code that makes us what we are’. This is a bit of a simplification but it’s helpful to think of it as carrying the instructions for building your body and how it develops and functions. 


Although humans share a great deal of the same DNA, the bit that is unique to you is very important and plays a part in determining what makes you ‘you’. DNA is in most cells in your body. So if you decide to donate anything to a biobank, you’re also donating your genetic material; it’s important to understand the implications of this and how you feel about it, although you will only be doing it with your consent.

 

Mapping and sequencing human DNA

The Human Genome Project (HGP) involved scientists around the world working together to find out more about human genes. Your genome is the complete set of instructions and genes are the sections of DNA that it’s made up of. The aim of the HGP was to find out where genes in the genome are – this is often described as ‘mapping the genome’. 


You may also have heard of genetic sequencing. This involves finding out the order of the different building blocks of DNA that make up genes. This in turn can show any changes in genes that might lead to disease.


All of this means that scientists now understand much more about genetic information and how it affects the development (or not) of some diseases. If specimens from you containing your DNA are used for research, all or parts of your DNA may be sequenced. This may provide information about you that you aren’t aware of and may never find out about. 


 

For more information about genetic sequencing and what will happen if you agree to it for research, read Patricia's story.

Patricia

What could you find out?

Patricia is 45 and has been diagnosed with breast cancer which is shocking news for Patricia and her family. As well as understanding the information about her diagnosis and treatment, Patricia has been asked to think about donating her tumour tissue.

 

Consent
Do you know what you’re saying ‘yes’ to?

Consent forms contain lots of detail and it can be hard to know exactly what you’re agreeing to. But it’s really important that you do – and not only for the reasons explained here about genetic material.

You may wish to think about the following and ask questions if you’re not sure of anything.

  • Some studies will provide feedback about the research results, but others won’t. Think about whether this matters to you.
     

  • You will get information about what happens if you decide you want to withdraw from the biobank. It’s likely that if you decide to withdraw some time after donating, your samples and the information linked to them will have already been used in research. It won’t be possible to remove them from these, but your samples and information will be destroyed and will not be included in future studies.
     

  • You may be asked to think about allowing researchers to get back in touch with you at a later date. You need to think about whether you would be happy with this and under what circumstances.
     

  • Think about any possible implications for your family. There may be none but there is a chance that you may find out information that affects them.
     

  • Check if signing the consent form means you’re handing over any rights to ownership of your samples and information. This is the case for some biobanks.
     

  • It’s possible that your information could be used in research that enables the development of products (medicines for example) that are then sold for a profit. It’s important that you know if you’re happy with this.
     

  • All research projects have Participant Information Sheets. These explain what is involved and give details of who to contact if you have questions. You should read this information carefully and ask any questions before giving consent.

 

Broad consent

Biobanks exist partly so that scientists can do research in the future using the results of other studies. But because they don’t yet know what the results of current research will be, they can’t be specific about the sorts of things that your samples and information will be used to investigate. So when you consent to donate to a biobank you’re probably giving ‘broad consent’. This means that you are only asked to give consent once but your information and samples could be used in a range of studies that fall within a particular research area (diabetes for example).  It’s important to understand that you will only get limited information about how your donations are used and that you’re happy not knowing exactly what research could be done with it in the future.