The Internet revolution has had a seismic impact on how people interact, connect, and conduct research. The Internet and the Web are responsible for generating an information age in which anyone is a simple online search away from being a self-reported expert on a topic. Who among us has not had a patient present an article on a particular symptom, medical study, or purported cure for a disease?
Technology has shifted the balance. Where once medical institutions were the "ivory towers" of information, now patients have nearly equal access to medical information. This has shifted the doctor-patient relationship toward a more equal partnership. An engaged patient who is motivated to seek out information can be a great asset to a physician, particularly in the field of genomics where new discoveries and associations occur at a tremendous pace.
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The power of connecting via social media cannot be overestimated. Facebook, LinkedIn, and Twitter are industry giants leading the charge. It took Facebook approximately 6 months to add 100 million individuals and the number of regular users has far surpassed this number. Approximately 42% of U.S. adults use social networking sites, and it accounts for 1 of every 6 minutes spent online.
This time spent online is not just for perpetuating the latest celebrity gossip. The Centers for Disease Control and Prevention used Twitter to update physicians during the 2009 H1N1 outbreak via an emergency information feed that had 1.2 million followers. Patients, physicians, researchers, and industry now intersect in social media spaces and push the very definition of clinical research – particularly in genomics – where often hundreds, if not thousands, of patients may be required to measure an effect.
The direct-to-consumer (DTC) genomic testing company 23andMe is an early adopter of combining the power of social media and research. While the clinical utility of DTC genome scans has not been established and the ability to obtain this information without involving the medical system remains controversial, 23andMe has demonstrated the potential power of combining social media and genomic research into their web-based genetic association study for several common traits (PLoS Genet. 2011;6:e1000993 [doi:10.1371/journal.pgen.1000993]).
Is finding the single-nucleotide polymorphism (SNP) associated with the photic sneeze reflex that makes people sneeze when going from darkness to light groundbreaking research? Not necessarily. But the method of discovery that 23andMe uses is intriguing. Concerns have been raised regarding issues of privacy, informed consent, the need for an institutional review board (IRB) involvement, and the reliability of self-reporting. However, their approach has uniquely combined two rapidly evolving technologies. Building on this momentum, 23andMe has developed new social media communities with the intention of advancing genomic research in Parkinson’s disease and several cancers.
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