FAQs from biobank participants:
What is a biobank?
A biobank is a collection of biological samples or ‘biospecimens’ (e.g. blood, urine, reproductive cells or tissue removed during an operation) and/or products that can be obtained from these such as DNA. Biospecimens can also include isolated infectious organisms, cells obtained from plant samples or animal cell lines.
Biobanked samples are often annotated with additional information about where the sample came from and the conditions under which it was collected. For human samples, the health of the donor, treatments the donor may have had or other health related outcomes are commonly collected data. Adding this information to a sample is called annotation and it increases the value of the specimen for research by adding context and further detail.
What type of samples do biobanks collect?
Animal, mineral, vegetable! Every biobank is different and anything from a living organism be that a plant, animal or person can be biobanked. ABNA has a wide membership that includes biobankers focusing on marine science, human cancer, infectious diseases, endangered plant and animal species, hereditary diseases and all manner of other areas.
The type of samples collected is highly dependent on the area being studied and on what is deemed most valuable to research. For human and animal samples this can be anything from saliva, to blood to tissue.
How do biobanks get their samples?
As with the type of samples, how they are obtained varies greatly depending on the area being studied. For human samples they can be collected using swabs or during routine blood and urine tests. Another commonly collected sample is excess tissue removed during surgery. This type of sample is collected when a person presents for surgery in the hospital system. Once it’s been removed during surgery it is sent to pathology for assessment by a pathologist and once this is occurred any excess tissue not used for diagnosis can be biobanked.
Biobanked samples are collected under strict principles of informed consent, meaning that participants need to be fully informed of their role in biobanking before any samples can be collected, stored or used.
Why do biobanks exist?
A biobank is a vital resource utilised by the research community. It gives researchers access to samples and data, far larger than that that could be attained historically. It gives multiple researchers access to the same sample for multiple purposes, which is of particular use in gaining insight into the various diseases that can be associated with the one genetic condition?
It may be established and developed for many reasons. Some Biobanks are set up for medical research to accelerate insight and advances into areas such as disease early detection, treatment (ie personalized medicine), cause and cures. Others are set up for pure scientific research with vision to gain insight into things such as forensic investigation, conservation and sustainable use of biodiversity)
In human disease, biospecimens help to bridge the gap between the laboratory bench and the patient bedside in what is called translational research or translational medicine.
I’ve been asked to participate in biobanking – what choices do I have?
Participation in biobanking is always voluntary and deciding to participate or not participate will have no impact on the health care that you receive. If you are asked whether you’d be willing to participate in biobanking you’ll be provided with an information sheet and a consent form. This will explain to you why they would like to collect a specimen from you, what that involves and what it is likely to be used for. In many cases researchers don’t know exactly how the specimen will be used and in this instance they’ll refer to ‘unspecified medical research’. This is because in many cases it’s not until a few years after samples are collected that a research question is raised that could be answered by investigations on your sample.
Who can use my sample and health data?
Doctors and scientists who would like to use your sample in their research must apply to a research ethics committee to gain approval first. This committee is made up of other doctors, researchers and specialists in medical ethics who will determine that their use of the sample is ethical and of value to the scientific and medical community. Strict principles of confidentially and donor privacy are employed by all biobanks and these researchers will not be made aware of who you are or personal details above what you have consented to.
FAQ from researchers:
Who are ABNA?
ABNA is an organisation committed to providing an opportunity for individuals who have an interest in tissue banking and biorepositories to share information and experience. Our membership includes biobankers from right across Australia and New Zealand, spanning human disease, zoological and agricultural biobanks.
Why should I join ABNA?
ABNA is the largest network of biobankers in Australia and New Zealand and has close ties to the international biobanking community through partnerships with the International Society for Biological and Environmental Repositories (ISBER). ABNA is a community dedicated to networking and the sharing of skills and knowledge to increase awareness of the value of biobanking. We are also committed to ensuring that available specimens are accessible to the researchers who need them and encourage collaboration wherever possible.
What sort of opportunities do ABNA provide for engagement?
Each year ABNA holds a national conference to facilitate the sharing of knowledge and achievements within the biobanking community. In past years this has included national and international speakers – handbooks for which can be found in the past events section of our Events page.
ABNA is always looking for new opportunities to engage with members and will regularly post details of smaller events or webinars on the website. Should you have an event that you would like us to share, please contact a committee member.
My local biobank doesn’t have the samples I need – where else should I look?
ABNA has a large membership, documented on our member biobanks page. Each of these has a unique research focus and mission statement dictating the focus of their sample collections. If a collection that meets your needs does not exist, many biobanks are able to facilitate protocol driven collections through existing partnerships within the clinical community. Each biobank will have varying policies surrounding this and it would therefore need to be discussed at a local level.
What kind of data should I expect with my sample?
This can vary between biobanks but is often negotiable depending on accessibility to relevant donor records and local Human Research and Ethics Committees. It’s best to speak with your local biobank regarding this.
I’ve recently obtained a sample from a biobank and as a result I now have a finding that could be relevant to the patient. What should I do?
Policies for the return of incidental findings is something each biobank will have discussed with the local Human Research and Ethics Committee. In each case there will be a policy in place to determine if and when a treating physician will be notified. If you find yourself in this position please contact the biobank that supplied the samples as a priority.