Biobanking is the practice of storing blood, cell and tissue samples from a group of people, generally for medical research (82% of biobanks list research or medical research as the primary reason they were established). The field of biorepository management has exploded in the last ten years- the number of samples in U.S. biobanks was estimated to be more than 300 million in the year 2000, with freezer inventory samples increasing at an astounding 20 million a year since then. Translational medicine, (the practice of applying basic scientific research to enhance medical practices) has helped millions of people through advancements in medicine. On Jan 1, 2014, almost 14.5 million people with cancer were still alive because of advancements in medicine due to this type of research.
The existence of biobanking has raised many questions as far as ethics in research practices. Here is a quick guide to some questions raised by three major issues:
Biobanking serves interests in many different sectors- public, private, commercial or noncommercial. Adding in that the federal government is the largest source of funding for about one third of biobanks, and this raises some questions about regulating the banks, ownership of the specimens in the event of commercial interests, and whether or not this will skew focus towards profitable research as opposed to not profitable research that is more medically necessary.
Most biobanks target a specific group for research, such as adults with bipolar disorder, or people with lupus, to help study and target that particular issue. This can possibly have a negative effect on the participants in the form of discrimination- Research, especially genetic research, will reveal information about the participants by its very nature. This raises questions as to the privacy of the participants, and how much responsibility the bank has to mitigate the problem. A lot of biobanks use biorepository software to help protect the identity of their donors.
The questions raised here are all about administration- there is no standard of governance for all banks, so how will they run themselves? What checks and balances will be in place to ensure responsibility? To combat this concern, most (about 80% of) biobanks have some kind of internal oversight board that are independent of the bank itself.