Quote:
=G. Owen Schaefer;547960
Participants should keep in mind the sharp distinction between the goals of research (to gather information for future use) and treatment (to care for the patient in front of you).
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Quote:
Originally Posted by girija
In the spirit of science and hoping for a good discussion I say that I fail to see a sharp distinction between the goals of research and treatment. In fact, I see them overlapping. The goals of research, particularly in biology are to understand a given problem and solve it, gain information for both immediate as well as future use. Future use may be the bigger picture and so its easy to forget the immediate use.
In many fields of biology, patients and treatments or lack there of drive research. Research and treatment feed into each other. For example, Phase 1 clinical trials are for saftey (research, data collection), but don't we all look for efficacy (treatment+ data)? Whether its Phase 1 or 3, as a researcher, I gather info, and as a patient it is an experimental treatment for me. The anticipation and the goals of a researcher and a patient are same i.e., that the drug works. Yes, there is a possibility it might not work, but one cannot participate in a clinical study if she/he thinks its a futile exercise.
girija
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Thank you to Mr. Schaefer for responding to our discussion and to girija for responding from a researcher's perspective. Perhaps my thought process is hindered by the fact that I don't have a background in science or philosophy, so what girija states above, to me, is just plain common sense. Why does the goal of scientific research have to be mutually exclusive from one of its tested outcomes which is often improved treatment? In other words, some trials are designed specifically to test new treatments: safety, dosage efficacy, etc. A desire for novel new treatments and the advancement of scientific knowledge are generally symbiotic, are they not? If Mr. Schaefer is saying that participants, in later trial phases, should not expect to continue receiving the treatment because it will skew data, then I fully understand.
I have never questioned that the goal of research is to treat the participant in the here and now with a potentially novel, effective therapy- this negates the whole idea of scientific control to know efficacy in the first place. Furthermore, if most people hold this therapeutic misconception, why do less than 1% of the 100,000,000 PWP participate in research? (NPF stat) Wouldn't we be then tripping, albeit rather slowly, over our fellow PWP for access to novel treatments? I would argue for a new model of research, one that continues the goal of advancing knowledge, but acknowledges that in many diseases, none of us has time to wait for patents to run out, or for trial outcomes to "trickle down" to us in the neurologist's office or on the operating table.
I would like to see, and I don't know how this conforms to any current philosophical thought on medical or bio ethics, a research paradigm that primarily advances knowledge but that also acknowledges the reality of human suffering in the here and now, and uses the results, all the brain power, funding, etc. we can muster in applying potentially beneficial treatments as soon as possible. What concerns me with the discussed line of ethics is what might happen if someone has a "Eureka moment" very soon and a cure is discovered. How long will it take us merely average PWP to receive curative treatment? Would the FDA super fast track a potential curative? Will our insurance immediately cover its cost? Has anyone ever entertained this thought using the current research model? Really, can anyone with knowledge of how this works be able to draw up research phase to patient benefit timeline? I'm 42, I daresay at my age, I'd be long buried before I had access to a cure if we continue to deny the practical need for treatment in the current model of research .
My thoughts,
Laura