A) Preclinical Drug Development
The Status Quo:
For drug target/validation studies or biomarker development researchers oftentimes need larger quantities of patient samples (often, from hundreds of patients) in order to obtain statistically significant data. Hospital-based biobanks and, eventually, independent biobanks, are organizations that usually have direct access to patients. However, often it becomes quite time-consuming to source needed samples.
As Matt Jones, staff reporter for GenomeWeb Daily News, pointed out in his most recent article:
- Two-thirds of the nation's biobanks were established over the past decade—it is estimated that there are about 800 biobanks within the U.S.
- The increase of genomics and related large-scale studies have led biobanks to play an increasingly central part in biomedical R&D—genomic research appears as if it is a key driver in the “biobank explosion”.
In short, based on increasing demand, competition is increasing, and given the fact that sequencing costs are rapidly decreasing, one can imagine that this trend will continue. But as biobanks increase and specific patient populations stay the same (especially rare diseases), sample/data sourcing becomes a big issue.
Matt Jones points out that with all the data being generated, certain new regulations might “kick in” within the next few years. Privacy protection always was, and increasingly will be, a topic of many future discussions—especially after the Yaniv Ehrlich’s recent Science article: “Identifying Personal Genomes by Surname Inference”. No matter what your attitude towards these findings is, patients that become aware of these potential "threats" to privacy will increasingly fear breach of “protected” private data and therefore probably be less willing to donate and share their valuable biosamples and medical information. (If interested, further comments can be read in a New York Times article from January 17, 2013: “Web Hunt for DNA Sequences Leaves Privacy Compromised”).
Why Engage with Patients?
It is necessary to connect and build trust. Social media is a powerful tool to engage in two-way-communication with patients: for instance, at the biobank Sanguine Biosciences’ patient blog, patients are writing about their experiences, their fears, and how they overcame those. The company realizes that it is important to actually work with patients to learn about and educate them: learning, listening, and educating needs to go both ways.
Furthermore, increased transparency is another way to develop trust. For instance, in the near future, the biobank will notify patients about the impact their samples made by informing them about where they have been sent to and/or for what purpose they were used for. Sure, some companies or research institutes will not allow communicating any information at all; however, others are very interested in working with companies to help them bridge the company-patient-gap.
Additional engagement strategies include partnerships with nonprofit organizations to provide patients the right education and to learn first-hand about the difficulties patients are dealing with on a daily basis.
Ultimately, if there is already an existing hospital/biobank-patients bond, sourcing samples and data will be faster and less costly, and longitudinal collection studies will become easier. Recruiting donors for clinical trials (i.e., based on their genetic profile) will become easier, too.