Biobanking (also called biorepository management) is the practice of collecting data and tissue samples and freezing it for the purposes of research. Usually these are human samples intended for medical research, though animal biobanks do exist. In the U.S. alone, there were an estimated 300 million tissue samples in biobanks in the year 2000. This number has been increasing at an estimated rate of 20 million a year since then. Of those biobanks, 53% of them identified their primary purpose as being research on a specific disease.
One challenge that biobanks face today is that there is very little regulation or legislation established to govern their operations. Since there is no standard of operation established, the biobanking industry has had to work on its own to establish a standard amongst themselves in the grey area of ethics in translational research.
One of the biggest problems also, is keeping track of freezer inventory. In the days before computer systems became commonplace in this industry, samples were continually lost or confused, which completely negates the efforts of the biobank. Now, companies have answered the call with biorepository software that tracks freezer inventory, noting who it is signed out to and often with scannable barcodes rather than identifying patient data.
Privacy is a large concern ethically for biobanks, because of the nature of the samples they collect. Software goes a long way toward eliminating this concern, because it generally codes the donor identity down to a number, with a key to decoding the information only given on a need to know basis. Opponents of biobanking point out that any amount of genetic data could be used to potentially identify a research participant no matter how encoded the information is. This is a challenge that biobanks continue to face going forward, and almost can’t be helped. In 2015 it is projected that well over 1.5 million new cancer cases will be diagnosed. This industry is key to helping find the cure for diseases like this.
Thoughts? We’d love to hear from you, leave a comment!