Human Exceptionalism

Pushing Experimentation Without Consent

The New England Journal of Medicine–ever more radically utilitarian, in my view–has an article by prominent bioethicists urging that some less dangerous (comparative effectiveness research) medical experimentation be conducted on patients without our consent.

The call arises in the context of Obamacare and medical technocrats seeking to transform our hospitals, clinics, and medical offices into ”learning health care systems,” in which doctors not only treat us but are part of a burgeoning nation-wide information-gathering quality control project. From a description in the Hastings Center:

The Institute of Medicine has called on health care leaders to transform their health systems into “learning health care systems,” capable of studying and continuously improving their practices. Learning health care systems commit to carrying out numerous kinds of investigations, ranging from clinical effectiveness studies to quality improvement research and implementation science. 

The NEJM bioethicist-authors assert that we all have a “moral obligation” to participate in this revamped system of massive information gathering. From, “Informed Consent, Comparative Effectiveness, and Learning Health Care” (NEJM 370;8, February 20, 2014)

We also have put forward an ethics framework…to serve as the moral foundation for a learning health care system.

The Framework comprises seven moral obligations…seventh, contribute to the common purpose of improving the quality and value of clinical care and health care systems…The seventh falls on patients to participate in certain types of learning activities that will be integrated with their clinical care.

In some cases, this means participating in experiments without knowledge or consent–as determined in our ever-growing technocracy by “expert” panels:

The panels will determine whether particular CER (and quality-improvement) activities fall above or below a threshold of negative effect on expected clinical outcomes or other outcomes or values that matter morally to patients.

Research that falls below the threshold will be integrated into clinical care without specific notification to or consent from individual patients; however, public notification will be provided to the community of the system, including patients.

Does the bureaucracy never end?

No. I don’t care whether or not it is a good idea to transform our health care system into one engaged in ”learning.”  I don’t give a fig about the opinions of expert panels: We should not be experimented on without our consent.. 

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