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Governments, fund raising bodies and individuals have given billions to scientists for research into prostate cancer and other diseases. Did you ever have the impression that these good people slaved away to try to find cures or causes, sharing their ‘Eureka’ moments with each other to create short cuts and avoid duplication of work. I did, sorta, but it turns out I was way wrong.
In 2003, a group of scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined in a project that experts say had no precedent: a collaborative effort……….
and
The key to the ….. project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world. No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort. “It was unbelievable,” said Dr. John Q. Trojanowski, ……. “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.”
"It’s not science the way most of us have practiced it in our careers" - what an indictment! Reminds me of something I came across in The New England Journal of Medicine in 1997 – thirteen years ago
The many recent changes in therapeutic approaches to localized prostate cancer are exciting and preoccupying but to patients they are bewildering and can seem dangerous. Until the trials now under way have been completed, we have no firm guidelines for advising our patients about which therapeutic option is best. This means that education is more important than ever, but the art of multidisciplinary counseling is hampered by rivalries that seem more common among prostate-cancer specialists than in other cancer specialties. This must change.
Hands up anyone who has seen any change in the co-operation between the various branches of the prostate cancer industry.
Why can’t we as taxpayers, voters, contributors to causes demand and insist that any funds we contribute must only be used for research that is shared in this manner. As the good doctor quoted in the article says:
“This one makes sense. The development of reliable and valid measures of Alzheimer’s [for Alzheimer’s read ANY] disease requires such large science with such limited returns on the investment that it was in no one company’s interest to pursue it.”
and
“We weren’t sure, frankly, how it would work out having data available to everyone, …. but we felt that the good that could come out of it was overwhelming. And that’s what’s happened.”
Gee, what a surprise – co-operation leads to better outcomes – who’d a thought it? E Pluribus Unum : Ex Unitate Vires and so on might give a clue.
Can we do anything at our level to influence the course of research? Well, we could if we got off our tails and actually did something, like insisting that all fundraisers co-operation as a standard requirement; by getting lobby groups like US-Too to insist on that caveat for all funds, to lobby your representatives. Will it happen? Probably not, most of us are happy to critcise but apathetic about getting involved.
