The Biobanking Debate

Sample management software

Biobanking refers to the practice of storing blood, cell and tissue samples from a group of people for research purposes. 82% of biobanks list research or medical research as the primary reason for establishment. The field of biorepository management has escalated drastically in the new millennium- the number of samples in U.S. biobanks was appraised to be more than 300 million in the year 2000, with freezer inventory samples increasing at an incredible 20 million a year since then. Translational research, (the practice of applying basic scientific research to enhance medical practices) has helped millions of people through medical advancements. On Jan 1, 2014, approximately 14.5 million people with cancer were still alive due to advancements because of this type of research.

The existence of biobanking has raised many issues as far as ethics in research practices. Here is a quick guide to some questions raised by three of the major issues:

  1. Privacy
    The general consensus in the biobanking field is that research participants have a right to the protection of their privacy and identity. This can be problematic, however, because research requires sharing results. The United States has an Office for Human Research Protections that recommends an encryption process that stores participant’s personal information away from the research results, with a coded key in the event that researchers need to locate the participant specifically. However, since the increase in computer communication and the massive amount of information in databases, this approach has become less secure, especially since a small amount of genetic data in biobank software can be enough to specifically identify someone.
  2. Informed Consent
    Biobanking historically has had a problem with formulating the proper informed consent. A lot of people don’t understand what biobanking is, for starters, because it’s so relatively new and a complicated issue. Previously used consent forms need to be tweaked because often research participants are required to come back over a period of time and donate multiple samples. It is essential to make sure subjects have a thorough understanding of what they are participating in.
  3. Ownership of specimens
    Ownership of donated specimens is not clear cut, because even though the patient is donating it to research, it is still their original genetic material. Additionally, uses for the specimens range from research to commercial uses including biological patenting. The debate stems from the question of how much a donor should be able to control what is done with their sample after it is given to research, and has been the basis of at least two Supreme Court cases.