F. Triumph or Tragedy: The Moral Meaning of Genetic Technology
F. Triumph or Tragedy: The Moral Meaning of Genetic Technology
F. Triumph or Tragedy: The Moral Meaning of Genetic Technology
101
102
103
Neither can we hold or defend the line between therapy and genetic
enhancement, despite the naive hopes of many that this will prove possible.
Would people reject additions to the human genome that enabled us to produce,
internally, vitamins or amino acids we now must get in our diet? Would we
oppose the insertion of engineered foreign genes that would be antibiotic to
bacteria and parasites or would offer us increased resistance to cancer?
Alterations in the immune system that would increase its efficacy or make it
impervious to HIV? When genetic profiling becomes able to disclose the genetic
contributions to height or memory or intelligence, will we deny prospective
parents the right to enhance the potential of their childrenby genetic means,
among others? Finally, should we discoveras no doubt we willthe genetic
switches that control our biological clock and that very likely influence also the
maximum human life expectancy, will our life-prolonging culture opt to keep its
hands off the process of aging and the upper limit on human life expectancy?
Not a chance.
We thus face a paradox. On the one hand, genetic technology really is different,
because it can and will go to work directly and deliberately on our basic,
heritable, life-shaping capacities, at their biological roots, and it can take us
beyond the existing norms of health and healingperhaps even to alter
fundamental features of human nature. On the other hand, we will find its
promise familiar and irresistible, precisely because the goals it will serve, at least
to begin with, will be continuous with those of modern high-interventionist
medicine. This paradox itself contributes to public disquiet: We rightly perceive
a powerful difference in genetic technology, but we also sense that we are
powerless to use that recognized difference to establish clear limits to the use of
genetic power. The genetic genie, first unbottled to treat disease, will, we rightly
suspect, go his own way, whether we like it or not.
104
some cases, if it can lead to easy measures to prevent or treat the impending
disorder and if we are talking about genes that predispose to disorders that do
not powerfully affect self-image or self-command. But will and should we
welcome knowledge that we carry a predisposition to Alzheimers disease,
schizophrenia, or some other personality or behavior disorder? That we
definitely carry genes that will surely produce a serious but untreatable disease
that will strike us at an unknown future time? Still harder will it be for most
people to live easily and wisely with less certain information about predilections
and predispositions, say, where multigenic traits are involved or where the
predictions are purely statistical, with no clear implication for any particular
predisposed individual. The recent case of a father who insisted that
ovariectomy and mastectomy be performed on his 10-year-old daughter because
she carried the BRCA-1 [breast cancer] gene dramatically shows the toxic effect of
genetic knowledge.
Less dramatic but more profound is the threat that excessive genetic
foreknowledge poses to human freedom and spontaneity, a subject explored 25
years ago by the late philosopher, Hans Jonas, one of our wisest commentators
on technology and the human prospect. In a discussion of human cloning, Jonas
argued for a novel right to ignorance, necessary for human freedom and
authentic action:
That there can be (and mostly is) too little knowledge has always
been realized; that there can be too much of it stands suddenly
before us in a blinding light. . . . . The ethical command here
entering the enlarged stage of our powers is: never to violate the
right to that ignorance which is a condition for the possibility of
authentic action; or: to respect the right of each human life to find its
own way and be a surprise to itself. (Jonas, 1974, p. 163. Italics in
original.)
To scientists who see only how knowledge of predispositions can lead to rational
preventive medicine, Jonas defense of ignorance will look like obscurantism.
But, as Jonas observes,
knowledge of the future, especially ones own, has always been
excepted [from the injunction to Know thyself] and the attempt
to gain it by whatever means (astrology is one) disparagedas
futile superstition by the enlightened, but as sin by theologians; and
in the latter case with reasons that are also philosophically sound.
(Jonas, 1974, p. 161.)
Everyone remembers that Prometheus was the philanthropic god who gave to
human beings fire and the arts, but we forget that he gave them also the greater
gift of blind hopesto cease seeing doom before their eyes (Aeschylus, lines
105
250ff)precisely because he knew that ignorance of ones own future doom was
indispensable to any human beings aspiration and achievement. I suspect that
many people, taking their bearings from life lived open-endedly rather than from
preventive medicine practiced rationally, will prefer ignorance of the future to
the scientific astrology of knowing their genetic profile. In a free society, that will
be their right. Or will it?
106
Most of our genetic technologists, quite properly, will not recognize themselves
in this portrait. Though they concede that abuses or misuses of power may
occur, especially in tyrannical regimes, they see themselves not as predestinators
but as facilitators, merely providing increased knowledge and technique that
people can freely choose to use in making their health or reproductive decisions.
Genetic power, they tell us, serves to increase freedom, not to limit it. But as we
can see from the existing practices of genetic screening and prenatal diagnosis,
this claim is at best self-deceptive, at worst disingenuous. The choice to develop
and practice genetic screening and the choices of which genes to target for testing
have been made not by the public but by scientists and not on liberty-enhancing
but on eugenic (albeit, so far, on negative eugenic) grounds. Moreover, in many
cases, practitioners of prenatal diagnosis refuse to do fetal genetic screening in
the absence of a prior commitment from the pregnant woman to abort any
afflicted fetus. And while a small portion of the population may be sufficiently
educated to participate knowingly and freely in genetic decisions, most people
are now, and no doubt always will be, subject to the (often but not always)
benevolent tyranny of expertise. Every expert knows how easy it is to get most
people to choose one way over another, simply by the way one raises the
questions, describes the prognosis, and presents the options. The genetic
preferences of scientists and counselors will always overtly or subtly shape the
choices of the counseled.
In addition, economic pressures to contain health-care costs will almost certainly
constrain free choice. Discrimination in insurance may eventually work to
compel genetic abortion or genetic intervention, through decisions to refuse
coverage for this or that genetic disease. State-mandated screening already
occurs for PKU. In France, the government has mandated that all citizens will
need to carry all their personal information on a smart card by the year 2000.
The growing tendencies to rationalize health care and to make it more costeffective may constrain choice precisely as they enhance prospects for prevention
and treatment. Moreover, with full-blown genetic screening, there will likely be
increasing pressure to limit reproductive freedom, all in the name of the wellbeing of children. Already, in 1971, geneticist Bentley Glass, in his presidential
address to the American Association for the Advancement of Science, enunciated
the right of every child to be born with a sound physical and mental
constitution, based on a sound genotype. Looking ahead to the reproductive
and genetic technologies that are today rapidly arriving, Glass proclaimed: No
parents will in that future time have a right to burden society with a malformed
or a mentally incompetent child. (Glass, 1971, p. 28.) It remains to be seen to
what extent such prophecies will be realized, but they surely provide sufficient
107
Playing God
Curiously, the worry about dehumanization is sometimes expressed,
paradoxically, in the fear of superhumanization, that is, that man, or rather some
men, will be playing God. This complaint is too facilely dismissed by scientists
and others who are nonbelievers. The concern has meaning, God or no God. By
this phrase is meant one or more of the following: (1) Man, or, again, some men,
are becoming creators of life, and indeed, of individual living human beings (in
vitro fertilization, cloning); (2) they not only create life, but they stand in
judgment of each beings worthiness to live or dienot on moral grounds, as is
said of Gods judgment, but on somatic and genetic ones (genetic screening and
abortion); and (3) they also hold out the promise of salvation from our genetic
sins and defects (gene therapy and genetic engineering). Man, not God, is a god
to man.
Never mind the exaggeration in the conceit and the fact that man, even at his
most powerful, is capable only of playing at being God. Consider only that, if
scientists are seen in the godlike role of creator-judge-savior, the rest of us must
stand in inferior relation to them as creatures-judged-tainted. These worries,
despite the hyperbolic speech, are not far-fetched.
108
One example will suffice. Not long ago, in my own institution, a physician
making rounds with medical students stood over the bed of an intelligent,
otherwise normal ten-year-old boy with spina bifida. Were he to have been
conceived today, the physician casually informed his entourage, he would
have been aborted. Determining who shall live and who shall dieon the basis
of genetic meritis a godlike power already wielded by genetic medicine. And
this power will only grow.
109
that will surely operate in this area; with their advent, the commodification of
nascent human life will be unstoppable.
110
eugenicists. They pursue, or think they pursue, not some far away positive good,
but the positive elimination of evils: diseases, pain and suffering, the likelihood
of death. But let us not deceive ourselves. There is in all this avoidance of evil an
implicit positive goal: nothing less than a painless; suffering-free; and, finally,
immortal existence. What is more, though unstated, this implicit goal is in fact
held to be uncontroversial and paramount. Only the presence of such a goal can
justify sweeping aside all opposition to the progress of medical science. Only
such a goal gives to the principle cure disease, relieve suffering its trumping
value in nearly all arguments about medical ethics: Cloning human beings is
unethical and dehumanizing, you say? So what: it will help us treat infertility,
avoid genetic disease, and provide perfect materials for organ transplantation.3
Never mind whether it means creating and growing human embryos for
experimentation, changing the definition of death to facilitate organ
transplantation, growing human body parts in the peritoneal cavities of animals,
perfusing newly dead bodies as factories for useful biologicals, or
reprogramming the human body and mind with genetic or neurobiological
engineering: Who can sustain an objection if these practices help us live longer
and with less overt suffering?
111
inevitable result of making the essence of human nature the final object of the
conquest of nature for the relief of mans estate. Like Midas, bioengineered man
will be cursed to acquire precisely what he wished for, only to discover
painfully and too latethat what he wished for is not exactly what he wanted.
Or, worse than Midas, he may be so dehumanized he will not even recognize
that, in aspiring to be perfect and divine, he is no longer even truly human. To
paraphrase Bertrand Russell, technological humanitarianism is like a warm bath
that heats up so imperceptibly you do not know when to scream.
I am sorry to paint such a gloomy prospect. I surely have no way of knowing
whether my worst fears will be realized, but you surely have no way of knowing
that they will not. True, Huxleys portrait is science fiction, but what was
debunked as mere science fiction not 20 years ago is today genuine biological
possibility. But my main point is not the rightness or wrongness of this or that
imagined scenarioall this is admittedly highly speculative. It is rather the
plausibility, or even the wisdom, of thinking about genetic technology, like the
entire technological venture, under the very ancient, profound, yet profoundly
un-American idea of tragedy, that poignantly human adventure of living in
grand self-contradiction. In tragedy, the failure is embedded in the heros
success, the defeats in his victories, the miseries in his glory. The technological
way of approaching both the world and human life, a way deeply rooted in the
human soul and spurred on by the utopian promises of modern thought and its
scientific crusaders, seems to be inevitable, heroic, and doomed.
112
113
114
115
References
Aeschylus, Prometheus Bound, lines 250ff.
Glass, Bentley, Science: Endless Horizons or Golden Age? Science, Vol. 171,
1971, pp. 2329.
International Academy of Humanism, Statement in Defense of Cloning and the
Integrity of Scientific Research, May 16, 1997.
Jonas, Hans, Philosophical Essays: From Ancient Creed to Technological Man,
Englewood Cliffs, NJ: Prentice Hall, 1974.
_____, The Phenomenon of Life: Toward a Philosophical Biology, Chicago: University
of Chicago Press, 1982.
Kass, Leon R., Toward a More Natural Science: Biology and Human Affairs, New
York: The Free Press, 1985.
_____, The Hungry Soul: Eating and the Perfecting of Our Nature, 2nd. ed., Chicago:
University of Chicago Press, 1999.
Kaye, Howard, The Social Meaning of Modern Biology, 2nd ed., New Brunswick,
NJ: Transaction Publishers, 1997a.
_____, Anxiety and Genetic Manipulation: A Sociological View, paper
presented at the Hastings Center, December 1997b.
Lewis, C. S., The Abolition of Man, New York: Macmillan, 1965.
National Bioethics Advisory Commission, Cloning Human Beings, June 1997
Pinker, Steven, A Matter of Soul, The Weekly Standard, Correspondence Section,
February 2, 1998, p. 6.
Walters, LeRoy, Human Gene Therapy: Ethics and Public Policy, Human Gene
Therapy, Vol. 2, 1991, pp. 115122.