Biobanking is the process of collecting samples of tissue or bodily fluid for research to understand health and diseases better. Researchers usually collect this information to get breakthroughs in science and conduct experiments.
Other information they may collect for biobanks includes weight, height, and other questions related to health (lifestyle and family history). Researchers collect additional information to give context to the samples.
It is not uncommon that they’ll keep these samples for several years or indefinitely, depending on the length of the study, so they can further carry-on research in the future. The researchers may also further track participants’ health by checking their past and future records, of course with permission.
History: How Did Biobanking Start?
Before biobanks, scientists would typically collect biospecimens they needed for experiments on a case-by-case basis. However, they soon realised that while genetics may have a factor in many diseases, you can only trace a few diseases to one defective gene. This led to the conclusion that many diseases result from multiple genetic factors, not just one.
Soon, scientists started collecting more information any chance they had to aid their research further. Also, technological advancements made it possible to share the information obtained widely without geographical restrictions. All of this led to the conclusion that access to data collected for any genetics research or work could be helpful in other genetic research areas. Soon, scientists started storing genetic data in one place so their entire community could have access.
It is all these that led to the discovery of nucleotide polymorphisms. Even though the new practice allowed them to collect and share genotype data, there was no system for collecting related phenotype data. You can obtain genotype data from biospecimens, but you can only get phenotype data from interviews, examination, and donor assessment. There were concerns about the ethics surrounding sharing the information in scenarios where they had phenotype data.
This led to the development of biobanks for storing genotypic and phenotypic data so researchers who need it may have access. Since the 1990s, biobanks have become an essential resource for medical research as it supports the fields of genomics and personalised medicine. Today, there are still some social, ethical, and legal issues surrounding biobanks that are in constant flux.
Types of Samples in Biobanking
A lot of the samples in biobanks are from donations. As described earlier, these samples are tissues and bodily fluids from human participants. Some of the most common samples for biobanking include:
- Biopsy Samples
- Fat samples
- Umbilical cord blood
- Spinal fluid
- Silvia samples
Are You Invited to Donate, or You’re Thinking of Volunteering?
Biobanking requires participation from healthy volunteers and people with particular conditions for samples. If you choose to participate in the drive, you should be prepared to give samples of your tissue, blood, saliva, urine, or a combination.
The biobank will store these samples and use them to improve their understanding of health or illnesses. Sometimes, this isn’t a one-and-done project as the research might need the biobank to keep tracking your medical records after long periods. It is not uncommon to get an invitation letter in a post urging you to take part in a biobank project. You should expect this letter from your GP or sometimes the project staff.
If you’re invited by post, the information should be detailed and explain all involved in the process. You can also request further information or ask questions if you feel the one provided isn’t sufficient. About half of the participants get invites by letter in the UK after the biobank has acquired the appropriate permission and contact details from NHS to invite people in specific age groups and areas.
Information and Questions Related to Donating for a Biobank
Before you participate in the research, the biobank will give you an information sheet detailing all you need to know about the study and all they need to do. The information sheet should also contain any advantages or disadvantages of providing your samples for a biobank. Biobanks give all of this information so you can make an informed decision about taking part in the project.
Some people are usually satisfied with the information provided with them using words like “clear” and “about right” and stating that there was enough information in the information sheets to make decisions. However, we have observed that some people are not satisfied with some biobanks’ information sheets. Common complaints we’ve heard is that the leaflets were too long, repetitive or the language was too technical for regular people.
The information sheet is crucial for any biobank project because it can discourage or encourage them to participate. People’s views on the amount of information provided on the information sheets vary. Some feel like because there is minor inconvenience or risk involved with biobanking, they didn’t need detailed, lengthy leaflets.
Reasons Why You Should take Part in Biobanking
There are many reasons why you may decide to take part in biobanking. Some of these reasons are:
Help Others and Aid Medical Science
It is not uncommon for people to volunteer their blood, tissues, etc., to advance medical science. Also, it is not unusual that some may receive compensation or payment for participating in biobanking. Not all studies offer this, but it is usually a small payment to compensate people for their time.
Many studies, however, pay for the travel expenses of participants. Some healthy volunteers have confirmed receiving compensation for participation, but that was not their primary motivation. Other reasons why volunteers have given for participating include finding out more information, their interest in research, and their curiosity.
Improve Understanding and Treatment of Their Health and Illness
Many who volunteer for biobank projects have severe medical conditions like Motor Neurone Disease (MND), cancer, and Hepatitis C. Many people feel contributing samples to a study might help them find a cure for their condition in their condition lifetime, which is usually unlikely.
People with particular conditions participate in biobanking because they will be able to get better care of their illness or get updated information about their condition. Also, some with peculiar conditions believe that participating in the drives will make it possible for them to reach leading health specialists that they previously had no access to.
Reassurance About Their Health or Progress of Their Condition
Another reason why some participate in biobanking projects is to get reassurance about their health. Many look at it as an opportunity to have a thorough health check, and if they have any challenges, the process will flag them. This also includes those who have concerns because of a history of illness and other health conditions in their families.
Some of these issues include heart disease and high cholesterol levels. Involvements in biobank projects allow them to check if they are in good shape and not affected by hereditary conditions.
Participating in biobank research could often be a combination of the above reasons and not just one.
What is Involved in Taking Part of Biobanking?
A necessary part that people are often concerned with is all the details involved with taking part in biobanking, and rightfully so. In the cases where the volunteers had health conditions, the biobanking donations are usually part of their regular appointments. Other people got separate invitations to attend specific appointments at a particular time and place.
Biobanking projects usually have more invasive procedures like taking blood, fat biopsies, or tissues; there is a risk of minimal side effects. One of the most common side effects people report includes discomfort or bruising. Lumbar punctures are incredibly uncomfortable for some people.
Other side effects people experience are more specific to biopsies. Some had a form of puncture mark where the scientists inserted the needle and swelling in the area. While most people aren’t put off by this, it is crucial to consider. We would also recommend that you tell the biobank of any reactions you’ve had previously in the past.
Some biobanking projects may require people to participate in other types of assessments apart from giving a sample. An example of one of these assessments is MRI scans, and it is not uncommon for people to feel claustrophobic. Another thing that may trouble people in MRI scanners is the noise it produces, which is like a loud banging or clicking.
The research staff in biobanks would typically inform you of any possible side effects before they begin the process, and you can withdraw if you are uncomfortable.
Apart from providing samples, another part of these procedures you should be ready for is giving information. Depending on the study, some biobanks will ask you to answer your lifestyle and family history questions. The scope of these questions could vary from the past couple of days or throughout an individual’s lifetime. Also, prepare for regular height and weight measurements.
Locations for this research would typically occur in hospitals, but UK Biobanks could also collect this information from other areas that aren’t health centres. Depending on the samples they want to order and the number of people present, taking part in the exercises in biobanks shouldn’t take very long.
Ethical Issues with Biobanks
The Human Tissue Authority or a Research Ethics Committee (REC) has to approve any biobanking project before it starts.
The Research Ethics Committee works to protect the dignity, safety, well-being, and rights of all people participating in the National Health Service research. This body usually reviews all the applications for research projects and gives their opinions about the proposed involvement of participants and whether the research is ethical.
The Human Tissue Authority is another body that has a duty in licensing and inspecting organisations that remove, store and use human tissue for research in any form. The Human Tissue Authority aims to keep confidence by ensuring that all biobanks and organisations use human tissue safely, ethically, and with consent.
Biobanks must obtain informed consent from volunteers before proceeding as a prerequisite for participating in these studies. As earlier explained above, the information sheet will contain all of the relevant details they need to know about the research and who they can contact if they have any complaints throughout the process and after.
Participants are required to sign the consent form to indicate agreement to participate in the study and confirm that they understand what they agreed to do. Part of the agreement includes the participants knowing how to withdraw from the study if they want to.
In cases where people have specific conditions that affect their ability to give consent, the Mental Capacity Act states that researchers should assume that the potential participant can decide to consent or not unless there is evidence that shows otherwise. This means that sometimes researchers will have to ask additional questions or deliver information differently to ensure the volunteer is capable of understanding before choosing to proceed.
There are many options that a volunteer can withdraw their consent during or after the procedure. Participants may choose to remove their sample, data, or both from the biobank or continue to allow the biobank to have access to it but no further contact with them. Participants can request that their sample be destroyed, and the biobank has to comply.
While these permissions are there, it is essential to note that for practical reasons and to protect the confidentiality, data, and samples that a biobank has already distributed to other researchers may be untraceable. So, in cases like that, a biobank cannot guarantee that it can destroy all their samples or data.
People have a significant concern about how the biobank or other organisations will use their sample in the future. That is because biobanks share information and samples with researchers across the world, including government institutes, industry (pharmaceutical companies), universities, and so on. So, it is possible that people may not always know the kind of research conducted with their samples in the future.
Biobanks are going global, and in this increasingly interconnected world, biobanking solutions will soon be able to support projects of different complexities and challenges around the world.
If you’re thinking of volunteering for any biobank project, remember to read the information sheet thoroughly and ask any questions you may have.