by Jake Meyer

Stephen Friend, a former senior vice president at Merck & Co., and Eric Schadt, the former executive scientific director of a subsidiary of Merck & Co.,  have announced plans to create an open-access online database of medical research called Sage, with the hopes of making it the "Google of biological science."  Sage was designed "to create open access, integrative bionetworks, evolved by contributor scientists, to accelerate the elimination of human disease."  According to Friend, "biology has mostly been archivists building up stacks of data," producing "linear data that set out . . . variations, rather then give us an understanding."  By establishing a forum where researchers can view and post data, Friend hopes to create a dynamic database of clinical, genetic, and other molecular data where researchers can collaborate and develop novel solutions to complex diseases.  It will take time for the project to develop into the global network of scientists Friend imagines; however, he hopes to start by addressing a few core diseases, including metabolic diseases, diabetes, and cancer.

Studies conducted by researchers at Merck's subsidiary, Rosetta, which resulted in at least nine papers published in peer reviewed journals in 2008, serve as the foundational research for Sage.  To help launch the project Merck is donating equipment and software, the pharmaceutical company Whitehouse Station is donating genomic information that doesn't relate to its drug discovery programs, and the Massachusetts General Hospital (affiliated with Harvard Medical School) is donating brain tissue samples.  A 3-5 year "incubation period" is planned for Sage during which it will operate in partnership with only a select few universities (potentially including University of Washington, Yale University, and University of California at San Francisco).  During this period, Sage's governing rules will be tweaked and a tool kit will be created for submission and review of the database.  The development model of Sage is similar to Facebook by making the website available only to select universities with minimal features before expanding to researchers at other universities, and eventually the public. 

A website where both academic and private researchers can share data freely and openly to discuss models for curing human diseases sounds great, but the commercial incentives institutions have may prevent the full potential of the system.  A tremendous amount of money can be made by developing new testing or treatments for human diseases –- if a monopoly over the testing or treatments is secured by a patent.  Researchers with commercial interests protect their interests in ways that are fundamentally opposed to the notion of collaboratively sharing research.  They keep information confidential that they used to readily share, since, if the invention has been disclosed in a publication for more than a year before the patent application is filed, a patent will not be granted.  For example, the scientific report of the discovery of the hemachromatosis gene was not submitted for publication until over a year after the patent on the gene was filed.  Apparently, the fact that people with the disease could have been diagnosed and cured during that time period did not matter to the researchers seeking the patent.

And one might think that only private companies would profit from research, but universities have a financial stake in research as well.  The Bayh-Dole Act of 1980 provides that universities retain ownership of inventions made through federally funded research –- meaning academic researchers have been receiving patents and commercially marketing their inventions obtained through federally sponsored research.  With the opportunity to profit from their research, academic researchers also have an incentive to withhold research findings.  In 1997, David Blumenthal and his colleagues at the Harvard Institute of Health Policy reported that one of every five professors in the life sciences had delayed publication of research results for at least half a year in order to protect financial interests.  Scientists who directly engaged in the commercialization of their research were three times more likely to delay publication and twice as likely to refuse to share information as those doing basic research.  In 2006, Blumenthal and colleagues reported that forty-four percent of geneticists at the 100 most research-intensive universities in the U.S had withheld data, either in verbal exchanges or as part of the publishing process.

Sage may be an unworkable model for disease research –- it would require philanthropy, community, and collaboration among researchers when the reality is that researchers withhold data and findings in order to obtain patents, particularly in the area of genetics.  Stephen Friend suggests that frequent contributors to Sage will receive an increased professional status and peer recognition, but these benefits are already available to researchers who publish their results, yet publications are delayed in favor of patents and profits.  For Sage to be successful, it will require a fundamental shift in how scientific research of diseases is done in the U.S. –- from profits to philanthropy.  And to encourage this shift, Sage should implement a rule that no contributor or user of Sage's resources can obtain a patent and benefit from this communal effort to cure human diseases.