Biomedical Engineering Reference
In-Depth Information
one question has not been thoroughly analyzed to this day: When may investi-
gators, actively or by acquiescence, expose human beings to harm in order to
seek benefits for them, for others, or for society as a whole? If one peruses the
literature with this question in mind, one soon learns that no searching general
justifications for involving any human beings as subjects for research have ever
been formulated. . . . Instead, in the past and even now, it has been assumed
without question that the general necessity for experimenting with human beings,
while requiring regulation, is so obvious that it need not be justified. ...I do not
contend that it cannot be justified. I only wish to point to the pervasive silence
. . . and, more specifically, to the lack of separate justifications for novel inter-
ventions employed for the benefit of future patients and science, in contrast to
those employed for patients' direct benefits.
25
At the heart of this is “a slippery slope of engineering consent,” one that
leads “inexorably to Tuskegee, the Jewish Chronic Disease Hospital in
Brooklyn, LSD experiments in Manhattan, DES (diethylstilbestrol)
experiments in Chicago”—and many others might be added—all of
which are “done in the belief that physician-scientists can be trusted to
safeguard the physical integrity of their subjects.”
26
It might be said, of course, that the physician-scientists involved in
these events, like those who conducted the experiments in the Nazi con-
centration camps, the Gulag Archipelago, Willowbrook, or others, are
perverse or even evil persons. Science and medicine are value neutral;
they are “intrinsically benign,” it might be said.
27
Evil actions stem not
from science but from individuals who are evil, or who do evil things
because of the ways they use science and medicine. To suggest otherwise,
Katz verges on saying, would be to court something scandalous—if not
unspeakable or unthinkable, then surely repugnant, and that would be
something awful, appalling even, quite as much as engaging in an act of
incest.
A few things are clear. In the new genetics, nothing seems beyond the
limits of newly possible interventions designed to correct, refigure,
conquer, or replace—most of all before flawed genes can do their
inevitable work. Reflecting on Mawer's narrative about Ben Lambert,
something unspeakable emerges as somehow connected to this point:
that we dare not say what we truly believe about individuals such as
dwarfs—that is, until and unless something can be done to correct or
ameliorate phenomena such as achondroplasia. Then, there is that “per-
vasive silence” that puzzles Katz.
