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Biobanking: What It Is & Why You Should Care

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picture of test tubes in laboratory

Biobanks continue to evolve over time.

What started out as simple biological and environmental repositories for various sample collections continues to expand into large infrastructure collection points for studying cancer, diseases, and human conditions like Down syndrome.

At DownSyndrome Achieves, we continue to advocate for Down syndrome research. We created the DSA Biobank to greatly contribute to this effort, helping us better understand health-related conditions associated with those who have DS.

Most individuals don’t realize that they can also benefit from research studies utilizing biobank specimens to better understand various health conditions. These studies sometimes result in new drug discoveries, treatments, and therapies—advances that can help all.

Biobanking Definition & Purpose
Future research is dependent on biobanking.
 
What is biobanking?
Biobanking, in simplest terms, refers to collecting biospecimens for research purposes. By studying these specimens, researchers can collect clinical data and better understand certain conditions, potentially leading to new treatments or cures.
 
What is the purpose of biobanking?
Genetic research, cancer research, and any research projects aimed at improving the quality of life of individuals require human biological material to study.
 
Biobanks must undergo a certification process, which can sometimes take months, given their size and the number of personnel overseeing their operations.  These certifications help to ensure samples are handled, managed, and store appropriately.  It also verifies that the Biobank is following proper procedures and protocols for biobanking.
 
Researchers benefit from biobanking, conducting studies with biospecimens collected and stored in biobanks they can trust. The general population can also benefit from medical developments much faster because researchers have these biobanks with samples ready to study, allowing them to start the study without major delays.
 

What is an example of a biobank?

There are all kinds of biobanks.

A biobank is a physical space where specimens are stored. This is usually in a room full of freezers, keeping specimens at exactly the right temperature so they are viable. Security ensures they are protected and can’t be easily tampered with or harmed. 

Not all Biobanks are created the same.  Typically a Biobank is focused on supporting research for a specific condition, like Down syndrome.  Each biobank also stores a variety of different sample types depending on the research it is being set up to support.

Nicole White, researcher and DSA Biobank Coordinator, talks about what a biobank is and why it’s so important.

Biobank Locations

Just as there are biobanks for different diseases and health conditions, biobanks also range in size and location.

There are several hundred biobanks across the world. In the 1990s, more and more biobanks were established.

Biobanks can be found at hospitals, universities, medical schools, pharmaceutical companies, or wherever scientific research occurs in the lab.

They can also range in size from small refrigerators to freezer warehouses, depending on the number of samples collected and stored.

Biobank Samples

Biobank samples are biospecimens or tissue specimens collected from individuals. These individuals could be considered healthy, living with a particular disease, health condition, or postmortem samples.

Along with the tissues and genetic material collected, an individual’s family history, medical history, and past medical records are also considered with consent from the individual.

What is stored in biobanks?

Biobanks store biological samples. These DNA samples can include:

  • Blood samples
  • Urine
  • Tissue samples
  • Hair
  • Saliva
  • Tears
  • Stool
  • Spinal fluid
  • Plasma
  • Umbilical blood samples
  • Depending on the type of study, different samples may be needed. Certain samples can be stored for years and used for future research purposes.

At DownSyndrome Achieves, we are currently supporting several funded studies with plasma, serum, DNA, RNA, saliva, and tears.

Researchers looking to study Down syndrome and related health conditions can use these samples after they have been approved through a formal application and review process.

Biobanking Benefits
Biobanking has many positive benefits to the research community and the general population.
 
Researchers Gain Access to High-Quality Samples
With several hundred biobanks available, researchers gain a trusted and certified location for biospecimens to conduct their studies. They can be assured that they are starting with high-quality specimens.
 
They can also save time by knowing that different locations are available and furnishing specific types of samples they may need.
 
Discovery of New Treatments & Improved Care
As a result of biobanking and researchers striving to understand human health better, they can discover new treatments for improved care for those with certain health conditions. This is priceless in the eyes of those faced with health challenges or family members who are caretakers.
 
Biobanking Ethical Issues
Several ethical issues come into play when you talk about collecting human samples for research purposes. These ethical issues include:
 
  • Final ownership of samples collected
  • Biobank sustainability
  • Veto rights of how samples should be used
  • Having informed consent
All of these are taken into careful consideration.
 
Biobanking Consent
Consent is required when any individual decides to donate biospecimens to be stored in a biobank.
 
Consent often involves clearly understanding what their biospecimens will be used for and what’s involved in the collection. At any point, the person can decline involvement.
 
At DSA, under parent FAQs, it’s very clear what your legal rights are when you decide to donate to the DSA Biobank.
 
  • You must give consent or permission to participate in the research study.
  • You have the right to be told the purpose of the research study.
  • You must be informed of the possible risks or discomforts you may experience if you decide to participate.
  • Your personal information will be kept private.
  • You can withdraw from the study at any time.
Biobank Research Needs Your Support
No one can deny the knowledge gained from biobanking. Researchers and countless individuals benefit from discoveries made using biospecimens stored in biobanks.
 
At DownSyndrome Achieves, our DSA Biobank helps researchers interested in studying health-related conditions often associated with those with Down syndrome. Those challenges can include:
  • Gastrointestinal disorders
  • Heart defects
  • Hearing loss 
  • Obstructive sleep apnea
  • Blood disorders like leukemia
  • Celiac disease
  • Thyroid conditions
  • Eye diseases and vision problems
  • Increased chance of developing Alzheimer’s
Better treatments for health conditions that co-occur with DS are within reach. For as little as $21/month, you can help support our efforts to find new treatments and therapies that can transform the lives of people with DS.
 
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