Human Exceptionalism

Your Body Belongs to Us for Experimentation

The obligation of researchers to gain informed consent from those willing to be human subjects is a sacrosanct human right established by the Nuremberg Code.

But some in the bioethics movement seek to undermine this crucial human subject protection–to a respectful listen at the highest level of bioethics discourse, including the Hastings Center Report.

Author Barbara A. Koenig writes in the context of genetic research, but the adverse principles she espouses could apply to any human subjects research. First, she sniffs that our devotion to consent has a religious or cult feeling to it. From, “Have We Asked Too Much From Consent?”

My view, though, is that the focus on consent in contemporary biomedical research has become the modern equivalent of a fetish. Recitations of consent’s key components in consent forms and institutional review board protocols have a liturgical feel. Name an issue in human research protection, and the answer is “more consent.”

Rather than each subject deciding whether to participate in certain experimental protocols based on receiving full disclosure of the hoped-for benefits and potential adverse consequences, a group of community representatives–selected and informed by the researchers–would be empowered to decide:

In this model, the meaning and moral force of the initial consent derives not from specific upfront choices, but from consent to a governance scheme. A participant agrees to be governed by the deliberations of others…

The focus turns away from a ceremony of individual control and choice. Instead, consent is about giving up control, agreeing to accept a set of procedures and practices created and interpreted by a group of fellow citizens; it is “consent to be governed.”

Escaping Koenig: It is always easier to decide the ends justifies the means for someone else.

Koenig believes ”experts” brought in by the institution sponsoring the experiments should have the power to consent for the subject:

I would argue that IRBs [Institutional Review Boards] have the authority to authorize experiments that test novel methods, even though exercising that authority requires a reexamination of the dominant liturgy.

And get this ending:

I hope an alternative, favoring talk over technology and community wisdom over individual control, will prevail.

You first, Ms. Koenig.

“Community wisdom,” in the wrong hands, becomes authoritarian. No way anyone should consent to participate experiments in which they lose the right to truly consent. 

 

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