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Thursday, April 17, 2014

Another chapter in the never endling clash between the collective and the individual regarding health care

The following comments were inspired by this insightful and very well written commentary by Margarit Gur-Arie entitled "Is the Nuremberg Code Obsolete?" After reading about where the cronies at IOM and the ideologues at Hasting Institute want to take us, I have to shout "It sure as hell better not be obsolete and do you people even know anything about the events that took place in Europe (or Macon county,Alabama for that matter)  in the 20th century and why we have the Code in the first place."

One of the more troubling developments in recent years in medical care is the seemingly increasing acceptance of the notion of the importance of the health of the collective even if sometimes to the determent of the welfare of the individual and that the latter seem to exist for the welfare of the former.

One of the latest twists here is that some are arguing that certain types of clinical research can be done without getting consent of the participants or even informing them about what it going on.

Quoting Gur-Arie:

" The Office for Human Research Protections (OHRP) held a public hearing in August 2013 regarding the nature of informed consent for randomized clinical trials...., two very distinct opinions regarding consent emerge from reading the various testimonies before the committee. The traditional opinion argues that there is a difference between treatment and research and that informed consent is required for both, including study of “standard care” interventions, CER and QI; that randomization always deprives research subjects of the judgment of their physician and that these issues are governed by law (e.g. the Constitution and such). The progressive view, presented by testimony from members of the Institute of Medicine (IOM), its Clinical Effectiveness Research Innovation Collaborative (CERIC), NIH and other research establishments, posits that randomization of “standard care” interventions poses no additional risks to patients, since doctors’ decisions are essentially like flipping a coin anyway, and therefore patients in this new learning system may be subjected to randomized CER and QI experiments without explicit consent and with minimal, if any, information (e.g. “something posted on the door”)."

 Related is this Hasting Center  report which speaks of   (with my bolding):

"The obligation of patients to contribute to the common
purpose of improving the quality and value of clinical care
and the health care system.
Traditional codes, declarations,
and government reports in research ethics and clinical ethics
have never emphasized obligations of patients to contribute
to knowledge as research subjects. These traditional presumptions
 need to change. Just as health professionals and
organizations have an obligation to learn, patients have an
obligation to contribute to, participate in, and otherwise facilitate learning.
This obligation is justified by what we call a norm of
common purpose. This norm of common purpose is similar
to what John Rawls calls the principle of the common good."

Wow, here is a group composed mainly of several ethicists from Johns Hopkins who presume to define an obligation for everyone and redefine the ethics of medical research, a goal they openly admit to in the first paragraph of their report.Everyone has an obligation to work for the common purpose of better health care.

Once all the health care providers and all the patients work together to participate in and gather the data about various medical tests and treatments the very smart people will be able to analyze it all and determine what is best for the collective. Utopian health care is within the reach of the  very smart people with ideas.

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