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comment by OftenBen
OftenBen  ·  3058 days ago  ·  link  ·    ·  parent  ·  post: Bone marrow stem cells shown safe, beneficial for chronic stroke patients

The real bind is the 'No Better options' bit. That's coercion, which is something that we have to avoid. Nevermind that the 'coercion' is 'I'm probably going do die really soon and want to at least help out if you can't treat me/cure me/ improve my quality of life.' Research has to be voluntary, and being put between a rock and the hardest possible place makes conducting that kind of study very difficult both practically and ethically speaking.





user-inactivated  ·  3058 days ago  ·  link  ·  

So it's preferable to do the riskier studies on people with less risky options? That's counterintuitive, at least. I'm pretty sure I'd opt in for "I'm probably going do die really soon and want to at least help out if you can't treat me/cure me/ improve my quality of life" if I were going to die pretty soon, at least with a side of "and if it goes wrong in a way that hurts, make sure you give me the good drugs."

OftenBen  ·  3057 days ago  ·  link  ·  

    So it's preferable to do the riskier studies on people with less risky options?

It's more a case of a lot of studies are intentionally being designed to focus on early diagnosis, early intervention type stuff. Of the set of 'Clinical Research Studies' a small portion are on high risk, ethically difficult populations. As it is, my research is difficult enough because we are asking people to participate in research in the same setting where they are receiving some of the highest quality care possible for the disease, which borders on ethically sticky. Lots of cardiologists have patients with this diagnosis, but not a lot of cardiologists have outcomes like my team, so we have to be very careful about how we approach the consenting process. We have an incredibly low threshold for disqualifying someone we believe is feeling forced to participate including kids not wanting to spend a whole day in the hospital getting poked, prodded and stared at. And that's for relatively non-invasive, low-risk procedures and interventions.