Biomedical Engineering Reference
In-Depth Information
feature of biomedical science: informed consent. If medicine's point is to
help sick, compromised people who cannot help themselves—people
who for that very reason are multiply disadvantaged and at their most
vulnerable—how could there ever be any question at all about inform-
ing people and ensuring that nobody takes advantage of them?
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Yet just
that doctrine of informed consent has become a centerpiece of medicine
and biomedicine, not only in research, but in daily clinical practice as
well.
In both cases, there would be no need for either a taboo (in the case
of incest) or the legal requirement for informed consent (in the case of
human subjects research) if there were not a preexisting context requir-
ing the one or the other. If vulnerable patient-subjects were not abused
in some manner in the first place, the demand to obtain informed consent
would be pointless—as would a taboo on incest, if no parent or sibling
engaged in sexual activities with children or other siblings. Just as incest
seems barely capable of being spoken or thought about, so is it scan-
dalous that otherwise-decent people who are researchers (not simply
those who were Nazis) must be subject to the rule of informed consent,
as if they could not be trusted.
Rheinberger is in any event clear about what especially concerns him
as scandalous (in the same sense as the incest taboo):
With the acceleration of a historical, irreversible alteration of the earth's surface
and atmosphere, which is taking place within the span of an individual human's
lifetime; with the realization that our mankindly, science-guided actions result,
on a scale of natural history, in the mass extinction of species, in a global cli-
matic change, and in gene technology that has the potential to change our genetic
constitution, a fundamental alteration in the representation of nature is taking
place, which we are still barely realizing.
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To be sure, discovery and diagnosis continue to occupy the limelight
of human genetics research—even with its newly acquired name,
genomics—with treatments and understanding lagging far behind.
Nonetheless, the regularly stated, almost mantralike discourse about
(and often justifications for) genetics projects, and the probable future
reality of genomics, is that clinical practice will be totally transformed
as new genetic knowledge leads eventually to effective treatment mod-
alities. With that eventuality, a wholly new meaning of “health” must
shortly follow: it will be more a matter of healthy genes (with the ability
