August 19th, 2010
Amalia Rosenblum in Haaretz reports that the open source concept is emerging in biomedical research, leading to a major new development in Alzheimer’s disease diagnosis for an unusually small investment of monetary resources. Furthermore, the results are being shared with little regard for traditional “intellectual property” rights which impede rapid dissemination and utilization of newly-generated knowledge:
A daring initiative for the good of humanity
Business must follow science in democratizing knowledge in the Internet age.
By Amalia Rosenblum
The ability to diagnose Alzheimer’s disease based on a spinal fluid test has made significant progress, media outlets around the world reported last week. This progress joins breakthrough studies after decades in which Alzheimer’s research hardly advanced and the disease could only be diagnosed conclusively by an autopsy.
Progress has been made possible by collaboration among scientists, universities, the U.S. administration and large pharmaceutical companies. They aim to disseminate the findings and discoveries immediately, free of charge, waiving scientists’ intellectual property rights. The project, incorporated under the name Alzheimer’s Disease Neuroimaging Initiative, was launched in 2003 and has cost some $100,000. In American terms, the price of one day of war has produced a generational leap in researching one of the most agonizing diseases known to mankind.
Such a low cost underlines the absurd way the race for money and prestige limits the development of critical tests and medicines. A number of factors combine to create a reality almost contradictory to the Hippocratic oath. The main ones are the U.S. administration’s restricted funding for university research and the Bayh-Dole Act, which since the 1980s has let drug companies finance university studies in exchange for exclusive control of the patents and influence over research objectives.
In view of this, the ethos of the Alzheimer’s Disease Neuroimaging Initiative is inspiring. Instead of having small study groups keeping their knowledge secret until publication for fear of losing funds or prestige, scientists now dare to unite resources and information. The idea is seen as innovative in especially competitive areas of medical research. A similar study focusing on Parkinson’s disease was launched recently with $40 million in funding. Similar initiatives are underway in scleroderma (an autoimmune disease ), Huntington’s disease, asthma and heart failure among young women.
But in a wider cultural perspective, this may be seen not as an academic upheaval but an expansion of the new paradigm of know-how based on the Internet revolution – the Wiki or open-source concept. This concept is based on collaboration, transparency and availability of research and development. Entire computer systems are based, at least partially, on open-source software. This philosophy holds that private ownership of content does not serve humanity. Take it from the millions of people who turn to Wikipedia as their first step in seeking information – this idea is contagious.
The problem, of course, is that a similar trend has not yet occurred in the economy. In other words, no sound business model has been designed to accompany the democratization of knowledge or the immediacy and joy of spreading content on the Web.
Scientists, like pilots, teachers, artists and bus drivers, must make a living, of course. And drug companies cannot be expected to risk billions of dollars on experiments and research without making appropriate profits. But as the Alzheimer researchers’ initiative shows, the Internet revolution will spare no Old World monopoly – because nobody can write a patent on the human aspiration for knowledge and answers.