T/86  Hastings Center for Bioethics.
  Moral Imperatives in Research.
        January 4 1996

.fi
When I was a very young child, and first motivated to enter a
scientific career, I had certain misconceptions about science.
I thought it was among the imperatives of human existance to
achieve understanding of ourselves, and of the world in which we
found ourselves -- indeed I saw that as the flowering of the
religious impulse, to illuminate ignorance, to use that as a route
to understanding whatever purpose there might be to our existence.

In addition, medical and agricultural science offered great promise
of human benefit: more efficient crops and vaccines and drugs that
could help feed the hungry and provide against pain, sickness and
death.

All of these seemed to confer on science something of a sacred
calling, fraught also with great responsibility to conduct its
affairs in as humane a way as possible, to minimize pain and risk
within the necessities of getting answers to humanly important
questions.

With some astonishment, I have grown up in a world in which most of
those premises are challenged by the political and public majority.
Science is suspect, to where apart from any other activity it is
presumed guilty until declared otherwise, e.g. by the bureaucracies
of ethical review and the IRB's -- so that even to do an experiment
without prior approval is already an infraction.  Some presumptions
of guilt are categorical, for example in the disqualification of
prisoners from ever volunteering in an experiment, regardless of their
express intention.  At least the forms of informed consent are an
available recourse for legally competent adults -- but better not ask
too closely what that ritual has actually achieved.  And what
contortions we face in testing drugs that might be extended from
adults to children.

So above all, there is a new god, of individual autonomy -- the
enshrinement of the right to absolute selfishness in disregard of any
alleged interests of the community, for example in the validation of
new drugs and vaccines, indeed even of the old ones that may be used
indefinitely without clear evidence.  Not just selfishness, even
orneryness: the individual has the right to refuse treatment even when
every commonsense judgment would insist on that in his self-interest.
The only domains that occur to me where individuals can be coerced on
behalf of the community are military service, taxation and jury duty;
and the first two of these are exposed to perennial democratic
debate.  If one stretches that a bit, one might add compulsory
education.

This calculus imposes no obligation of self-sacrifice, say for medical
testing on behalf of the multitude -- and however noble a purpose that
might seem, it is all too easy to see how abuses might creep in, in its
name.  The same, I suppose, accounts for endless preoccupation on the
property rights of ownership of a single embryo, to the relative neglect
of the ethical issues raised by the millions of deaths that might be averted
by more broadly shared responsibility for the health of children exposed
to vaccine-preventable disease.  I will confess that I do feel some
obligation to devote my talents and energies to those macroscopic burdens.
Experience has taught me to stress self-interest rather than ethical
obligation when I speak to others on this matter.

These new principles, of the transcendent inviolability of the
individual are unshakeable; and together with many other scientists
I do not dare challenge them.  Like Descartes, after Bruno's
immolation, we have accepted that science could only continue in
submission to these rules of ethical authority, and that we had
better not interfere.  Mere nonchalance, not to mention hostility,
on the part of the ecclesiastical, no I mean political, authority
is enough to undermine our funding at a critical time.

So if there is no obligation to submit to research, how can there
be an obligation to conduct it?  Simpler to pretend that we do it out
of whim and curiosity, perhaps livelihood, profit and prestige; and
if some public good can come out of it despite all the harassments,
so much the better.   Should we make any larger claims for ethical
obligation to sustain the enterprise, and therefore its ethical
priority, we will be shaking the temples at our peril.

In fact, how could I argue otherwise?  Perhaps some scientists are
saints, but enough are not (a possibly blessed truth) that they can
hardly be trusted merely because they profess a vocation.  The
enterprise has grown large and dollar-laden, and subject to fierce
competitive pressures.  Many others do experiments that I would
deem to be premature, risky, or most often just plain sloppy.
Since you will not delegate the authority for decision to me, it
must go to some broader public interest, hopefully reasonably
informed by scientific expertise.  But do not be disappointed or
surprised if that bureaucratically laden process is rather slow and
inconclusive in bringing about all the succor that science could
more rapidly muster in principle.  I hope you will be able to
conclude that, in exchange, ethical regulation has won its merits
by the remediation of abuses in significant scale, and that these
could not be dealt with in any better way.  My modest proposal is
to put a mite more stress on methodological rigor, so that whatever
experiments are done at least have substantial scientific value.

 ---
At another time, I gathered and taxonomized the motives I could locate
for fear and suspicion of science.  Let me pass out those tables, and
see if you can help me elaborate that "technopathy".

.nf
Hand out will be:

196.  Lederberg, J., 1972.
      The freedom and the control of science - notes from the ivory tower.
      Southern California Law Review 45:596-614.

275  Biomedical Science, Infectious Disease, and the unity of
     humankind.
     "Nobel" colloquium, Paris, Jan 1988. Mitterand-Wiesel
	JAMA 260 (5): 684-685 (1988)  8/5