by Jake Meyer
Researchers studying Alzheimer’s disease have been using an approach to learning about the disease rarely used in the life sciences – cooperation. In 2003, the Alzheimer’s Disease Neuroimaging Initiative formed as a collaborative effort to find biomarkers that show the progression of Alzheimer’s disease in the brain. Researchers from the National Institute of Health, Food and Drug Administration, the drug and medical imaging industries, and universities and non-profits have been sharing all of their data and making every finding freely accessible to the public. The collaboration agreed that no one would either own the data or submit patent applications. Now in 2010, the collaboration is starting to bear fruit.
The Alzheimer’s collaboration is significant for two reasons. First, the collaboration of Alzheimer’s disease research is yielding promising results for the understanding and treatment of the disease. This collaborative approach looks to be effective – currently there are over 100 studies being conducted to test drugs that could slow the effects of the disease or cure it. Second, this type of collaboration in the life sciences is rare, as the practice of allowing patents on the results of basic scientific research (such as human gene sequences and correlations between genetic mutations and disease) in the life sciences fields has created an incentive to not share results, but instead withhold data. Dr. John Q. Trojanowski, an Alzheimer’s disease researcher at the University of Pennsylvania, describes how uncommon collaboration like this is in the life sciences: "It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately."
Studies have indicated that data sharing is not the norm in the life sciences. Frequently researchers are withholding data and results and this is harming research. A 2002 study published in JAMA indicated that of the 1240 geneticists surveyed, 77% thought that the failure to share data diminished communication in science and 73% thought that it slowed the rate of progress in their field. Fifty-eight percent of geneticists reported that data withholding had hindered their own research.
To find biomarkers for Alzheimer’s disease it was estimated that 800 subjects would be needed. It’s common for a large number of subjects to be needed for study in the biological sciences, and that’s the strength of collaborating on a disease or disorder – data on research subjects can be pooled and the data can be used by many different researchers. Researchers working on other diseases or disorders – such as autism – haven’t been so quick to collaborate and share data.
When Jonathan Shestack’s son was diagnosed with autism in 1992, he contacted four groups of university scientists who were searching for autism genes and offered them funding. Experts estimated that researchers would need DNA samples from at least 100 families with two or more autistic members in order to pinpoint a gene associated with autism. He discovered that no group had enough DNA samples to determine which genes are autism-related, but there were more than enough if the groups pooled their samples. Shestack asked the four groups to share their DNA samples with each other so that they all had a better shot at identifying autism-related genes. Every researcher that he spoke with refused to share samples, because each researcher wanted to be the first to patent the autism gene.
There is big money to be made as the first to patent a gene related to a disease or disorder. Myriad Genetics, the company that owns patents on the human breast cancer genes BRCA1 and BRCA2 was formed to commercialize the genes once they were fully sequenced. Although most of the work to identify the BRCA1 and BRCA2 genes was done by a collaborative international consortium of scientist – the consortium of scientists had located the breast cancer genes on chromosome 17 and was engaged in determining its various DNA sequence – a University of Utah scientist who was part of the public consortium patented the genes and created Myriad. In 2008, Myriad had revenue for its molecular diagnostic tests totaling $222,855,000.
As technology increases researchers’ capabilities for collaboration and as the questions researchers seek to answer about the genetic components disorders and diseases require larger pools of subject samples, the Alzheimer’s Disease Neuroimaging Initiative should be looked to as a model. The collaboration has allowed for the sharing of data and has led to the development of over 100 drug studies. By not allowing researchers to keep ownership in their data and not allowing patent applications to be submitted on the collaborative research, collaboration is encouraged. Further, private companies are still allowed to patent new drugs and new diagnostic testing methods. This allows for collaboration, but also provides the incentive of patents for the development drugs and testing methods. When researchers are free to patent and effectively own and control basic research – such as genetic sequences or correlations between a genetic mutation and a disorder or disease – an incentive exists to not collaborate with other researchers. This slows the development of drugs and testing methods for these diseases and disorders. The Alzheimer’s Disease Neuroimaging Initiative is a good example of researchers selflessly collaborating and will hopefully come to represent the norm among life science researchers.