The New York Times yesterday described the emerging phenomenon of utilizing patient and online communities to jumpstart scientific research. In a previous post (Genomic Research Goes DTC) I discussed this trend, as well as a number of the legal uncertainties surrounding this new research model, particularly in the case of genomic research conducted by private companies.
That uncertainty is well covered in the Times article, thanks to Bob Cook-Deegan, Director of Duke University’s IGSP Center for Genome Ethics, Law & Policy, who strikes the proper balance in assessing the exciting but untested model of patient-driven research:
“I’m very suspicious of a company that has tons of private data getting too cozy with the drug or biotech industry,” he said. “But I don’t want to say it’s not going to work, because I can see all kinds of value that could come out of this.”
Where I found the article lacking, however, was in its description and presentation of the patient-driven genomic research model. As the Times describes it:
Supporters of this model—sometimes called crowd-sourcing or open-source research—call it democratization of research and say they are pioneering new models that put patients in control of their data and build bridges between researchers, patients and their doctors. (emphasis added)
It all sounds innovative and patient-friendly, but are “crowd-sourcing” and “open-sourcing” really interchangeable concepts? No, and conflating the two terms obscures one of the key features distinguishing patient-driven research from traditional modes of research.
“Crowd-sourcing” refers to using a large, often varied or undefined group or population to undertake a defined task. In the case of genomic research, this might entail using web-driven or other distributed modes of interaction to identify research populations, recruit participants and, ultimately, collect the data necessary to produce meaningful scientific research.
“Open-source,” although similar, means something different. It refers to the public accessibility of data, traditionally the source code for a particular piece of software. In genomics, this means public access to research data—whether collected through crowd-sourcing or other means. Those data can then be used by individuals, by companies or by scientists for whatever purposes they desire.
Although distinct, the two concepts are clearly compatible. The Personal Genome Project, for instance, uses a public website to crowd-source participant enrollment (it is currently in the process of enrolling the next 100 participants on its way to a total research population of 100,000) and it shares the data generated by those participants in an open-source format.
Research projects sponsored by private companies, in contrast, including the “Research Revolution” initiative of 23andMe that is highlighted in the Times article, tend to be crowd-sourced but not open-source. The Times article notes that “[23andMe] plans to store the genetic profiles of thousands of people to use for research internally and in partnerships with other companies.” When 23andMe co-founder Linda Avey declares that the “Research Revolution” represents “the Wikipedia approach versus Encyclopaedia Britannica,” she can only be referring to the manner of data collection (crowd-sourcing) and not data dissemination (open-sourcing) for, unlike Wikipedia, 23andMe has provided no indication that it plans to make its growing database of genetic and medical information available to even the individual participants in its research, let alone to the entire world.
Of course, there’s nothing wrong with crowd-sourcing the process of data collection while declining to provide open-source access to that data. A private company, 23andMe is devoting considerable resources to the development of a proprietary research database that it has no legal obligation to share with the rest of the world. Crowd-sourcing to improve and speed the development of that database is an innovative strategy that appears, at least so far, to be generating considerable momentum. But in the rush to proclaim the rise of a patient-driven revolution in genomic research, we should distinguish between research that is driven by patients for the benefit of patients, and research that is driven by patients for the benefit of profit.