|In recent weeks, the scientific community has been buzzing with predictions that the United States might put more focus on medical research. Spurred by remarks President Barack Obama made in his State of the Union Address regarding precision medicine, experts have debated the possibility that the U.S. would create a national biobank. Now, several webinars, public statements and press releases suggest that this initiative is on its way, foreshadowing huge changes in how diseases and therapies are researched and created.
A biobank is a research facility that stores huge amounts of data, which can be used to study a variety of scientific questions. Medical research, for example, may collect and store blood samples, genetic data and lifestyle information in a biobank before combining and analyzing them for research.
Currently, there are a number of academic and private biobanks located around the U.S., but no national resource. The creation of the Precision Medicine Initiative would change that: focused on developing cheaper, safe, individualized drugs and treatments, the facility would become the U.S.’s largest biobank, storing information from more than a million Americans. The Precision Medicine Initiative would also make this data available to thousands of scientists, mathematicians and statisticians, further expanding the potential benefits of the collected information.
To expedite the creation of the Initiative, the program has suggested using data already collected with funding from the National Institute of Health (NIH). Gathered from hospitals, universities and private institutions, at least one report suggests that there are at least 50 large-scale research cohorts funded by the organization that are eligible to be included in the biobank’s database. This would give the Initiative access to information from more than 12.3 million people of all ethnicities, lifestyles, cultures and more. But questions are being raised about how this information would be used, and who would be using it.
Currently, the NIH has reported that study participants would have a significant amount of control over their genetic data, particularly through an option to contribute their health information on a lifelong or periodically renewable basis. Using online portals or dashboards, individuals and their doctors would have a level of real-time access to their samples. This is an exciting development, given the degree of anonymity that is often considered necessary to patient confidentiality, but which also prevents patients and researchers from learning more about the samples in question. However, it also increases the chances for controversy: for example, what if a patient disagrees with the study their biological data is being used for?
However, the Initiative could actually improve conditions for researchers, especially freelance or small-scale researchers. Currently, the field of clinical research is often dominated by large, private enterprises, such as pharmaceutical companies, who can afford to create their own biobanks. A national biobank will not only make samples more readily available, but will likely expand the number of projects available. This could prove extremely beneficial to freelance researchers, who are hired by everything from magazines to corporations to analyze data, an intriguing development in a world where freelance work is becoming increasingly popular. The Initiative’s online portals could also help offsite researchers, like freelancers, better access information to study.
The benefits of such a preventative medicine program can be seen in other countries that already have biobanking programs. Iceland, for example, was one of the first nations to create a large-scale genetic biobanking programs in the early 90s. Called the deCODE project, the program began mapping the genome of the small, highly homogeneous Icelandic population, many of whom can trace their ancestry back thousands of years. This effort helped simplify the process of identifying genes associated with different diseases. Now that the processes of mapping genomes, comparing data, collecting samples and recruiting participants has become markedly easier, a similar program in the more diverse U.S. could have a world-changing impact.