Performing research for any disease takes hard work, but it is nearly impossible to conduct ground-breaking research and advance science in an expedient manner without a solid starting point--The specimens. The raw material for most of the good work to happen in the life sciences can likely be found in ample quantities of quality-controlled and well-catalogued specimens linked to information about the person from whom they came and their health status.
Simply put, a shortage of properly documented biospecimens slows down progress and delays discovery. The roadblocks to effective biobanking--though many are seemingly simple--are painful, and they need to be addressed. Here are the top five challenges always front of my mind when trying to conceptualize and develop software to remove these barriers to specimen acquisition.
1. There might be ample specimens out there (somewhere), but how many are usable?
There is no doubt growing awareness of the importance of human specimens in research. This is accompanied by increasing acknowledgement of the deficiencies of existing archives of tissue. This is akin to when you look in the bottom of your freezer only to find something you want, or could have used, but it has been there too long and it is no longer usable. Time to pitch it--And by that point you have lost time and certainly money. We should not be abusing valuable human specimens like this. We need to get the bank contents properly documented, and get the specimen data out and available for all researchers to find.
2. Simplification of consent.
Who doesn't want to help cure cancer? The main reason for collecting samples is to find new way of diagnosing and treating disease. But reality has medical and research professionals spending valuable time chasing down patients, explaining the legal language, answering countless questions, and trying to get that signature--Often all just before a patient undergoes a stressful surgical procedure. Let's just make it a blanket statement on your driver's license that you either are or are not consenting to give your tissue for research should the occasion arise, similar to organ donor programs. Wouldn't it be great to get an email after making a tissue donation that says, "thank you for your contribution--your tissue has been used succesfully in a cancer research project!" - Sure sounds good to me.
3. Nobody talks to anyone.
There are tons of biobanks all doing great work with tons of samples warehoused in each of them. Unfortunately, each biobank is effectively a silo trapped in the basement of the collecting facility. It is nearly impossible to know what is in each biobank (and that what you might need is right down the street, or easily acquired) if we don't come together and start communicating more effectively. We can communicate by networking the banks together--We can take the catalog of inventory in multiple banks, consolidate the data into a single view. And once there, it can be viewed by an exponential amount of researchers, the right specimens can be acquired by the research facilities that need it most, and the valuable tissue can actually be used by the right teams for the right research to make amazing advancements.
4. Scientifically valid research.
This goes along with simplifying the consent process. If you have checks and balances on the research proposal requesting specimens, then we all can rest easy that our specimens are being used for sane and ethical research.
5. We must identify and use a common language.
Standards are an age old problem. No one seems to be able to agree on what medical code sets to use (ICD9, ICD-10, SNOMED CT, etc). Each year, there are code set revisions and decisions have to made about upgrading to the latest code set. This ushers in other issues with compatibility that no one wants to take on due to all the work involved. It can become a complicated mess. We all use different code sets and all have different versions, and nobody can authoritatively settle on any one standard. And unfortunately, this is a real-world problem that has no simple common sense answer--At least not one I can conceive. Here is some an article on controlled vocabularies.
Have you had your research project rejected or delayed because you could not identify or acquire the right tissue needed?
What experiences have you had in working with biobanks?
Any suggestions how to solve the language problem in medical code sets?
Let's hear from you about your issues and solutions.
-Bill Mason, 5AM Solutions
Photo Credit: BBC UK