Co-operation? Surely not!!

[Guest guest]

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.

Read this bit in the New York Times http://tinyurl.com/RareShareNY and

see this:

<snip> 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………. <snip>

and

<snip> 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. 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.” <snip>

" 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

<snip> 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. <snip>

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:

<snip> “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.” <snip>

and

<snip> “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.” <snip>

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.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going

strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html