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World's Largest Medical Experiment
eldavojohn writes "Recently in the UK, a Biobank project has been rolled out to 'unpick' the genetic basis of diseases such as cancer on half a million volunteers. This is based on the success of a three-month pilot phase conducted on 3,800 participants. From the article: 'Over the next four years, blood and urine samples will be collected from volunteers aged 40 to 69, to help scientists unravel the genetic foundations of common diseases, including cancer, heart disease, diabetes, dementia and joint problems. If you live in the UK, agreeing to this survey may involve a little more than you would expect."
Theres a project like this in Iceland called DeCODE. They've been given a lot of power over the data collected, enough to make some people wary. It's a fair assumption that this project will face similar problems, although the measures governing DeCODE seem to protect the company much more than the individual. It will be interesting to see how Biobank handles this.
I think such a study would be seminal work in this area....
If...
they properly inform people about the program and its uses before having them volunteer.
they are rigorous in protecting privacy. (No AOL fiasco.)
they closely monitor different companies are doing with the data - no cross-referencing with their own data to identify people, no reselling of the data, etc.
they allow patients to "opt-out" even after they have volunteered.
they provide it for free to interested, responsible paries. (Or at least cheap enough that major pharmaceutical companies aren't the only customers.)
they follow the ethical standards of the profession, and not the ethical standards of the mighty dollar (or pound).
Reading code is like reading the dictionary - you have to read half of it before you can go back and understand it.
What about all the fluoride in the water? It's a conspiracy... a secret experiment that's been conducted for a generation. Who knows what effects that has on us? It might be turning us all into communist spies. Perhaps we'll all wake up one day under the influence of a massive KGB mind control beam. Anything could happen! We must protect our precious bodily fluids at all costs!
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...a species that historically procreates before 30 years of age is kept alive until their 80s by improved hygiene and medicine. Your body was never designed to last as long as it usually does nowadays, and the systems break down. Cancer isn't a "manmade virus;" it's the end result of a lifetime's worth of minor genetic insults.
We need people to die..
Fine. You first.
The Future of Human Evolution: Autonomy
Volunteers in medical studies often (nearly ALWAYS) recieve medical advice and consultation, possibly free medication, and follow-through care. It sounds like you do not want to volunteer -- please don't. Some people, however, feel that participating in a worthy endeavor is payment enough. If it leads to improved health care, great. If you are concerned about pharma companies making money, go into politics. These issues do not belong in science.