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Introduction
lair" or just"is it right that some should lose and others gain in that
way?
The second set of values that will figure in our argument constitute what I
have elsewhere called detached values: these are values that do not
derive from the interests of particular people, but are rather intrinsic to
objects or events in some other way. Many people think that great works
of art have detached value, that their value does not depend on whether
they actually give pleasure or enjoyment. Many people think that animal
species have detached value: they think it is intrinsically wrong when a
distinctive animal species becomes extinct, that this is bad quite apart
from the impact on the interests of actual people.
The controversy over abortion brings out the importance of the difference.
If, as 1 have elsewhere argued, an early fetus can have no interests of its
own, then the argument that abortion is wrong because it is against someones interests is indefensible. But it nevertheless makes sense to believe,
as a great many people do, that abortion is always morally problematic,
and at least in some cases morally wrong, because it offends an intrinsic
or detached valuethe sanctity of human life in any form. Advances in
genetic science raise many problems, as we shall see, about derivative
interests: these are problems of efficiency and justice. But I shall argue
that the sharp negative reactions that both people and governments have
displayed to some of the more speculative genetic techniques, particularly
cloning and radical genetic engineering, are not best understood as
appealing to derivative values of that kind, though they are often, rather
lamely, presented in that dress. They are much better understood as deep
and instructive appeals to intrinsic, detached, value.
II. Diagnosis and Prognosis
A. Should Tests lie Offered?
It is a large question (taken up, in part, in Chapter 8) how much of its
treasure any society should devote, through public or private vehicles, to
health care, how much of that to research rather than to treatment or
public health, and how much of that to research into any particular
medical condition or disease. No doubt many people object to large-scale
programs in genetic research, like the genome project, on grounds of cost:
they think the money would be more usefully spent in other ways. My
discussion will be limited, however, to the nonbudgetary reasons that
people have offered for not developing genetic tests for disease or
predisposition to disease, or not making these tests widely available if
they are developed.
Some of the diseases that can be predicted by genetic testing, cither with
certainty or with an important degree of probability above the norm, are in
different ways treatable: a course of treatment, or of monitoring, or of
changes in diet or life style can reduce the probability or the seriousness
of the disease. These include certain bowel cancers and rarer diseases,
like phenylketonuria. It is difficult to imagine good arguments against
making testing for those diseases both legal and readily available. It is
true that the availability of such tests might further increase the
advantages of the rich over the poor, either because the tests could be
afforded only by the rich, or because the treatment that capitalizes on the
informationfrequent colonoscopy or a very expensive special dietis
itself too expensive for some. It is also true that test results may fall into
the hands of othersemployers or insurersto the patients damage. But
these disadvantages cannot outweigh the value of an increased life
expectancy. Genetic tests can identify the certainty or likelihood of other
diseases, however, like Huntingtons disease and, it appears, certain
breast cancers, that cannot be cured or alleviated, at least at the present
stage of medical knowledge. We must consider the argument, about these
diseases, that genetic testing can do no good, and may well do harm,
because a death sentence is very likely to be demoralizing, and because it
will often be catastrophic if the information falls into the hands of
employers, insurers, or others from whom the subject wishes to keep that
information. My own view, however, is that adults who wish the tests, and
have been given as clear an understanding as is possible of their import,
and of the risks that the information will be available to others, must be
permitted to have them. Some such peoplein whose family, for example,
Huntingtons disease has occurredwill already be terrified that they will
be victims as well, and they must be permitted to judge whether the
potential relief from a negative result is worth the risk of a positive and
devastating one. Many people, too, would want to know that their life is
doomed to be a short one, in order to capitalize on that short life more
effectively, and they should be permitted that opportunity. We have more
general reasons, as we shall sec, for restricting the access that third
parties may have to genetic tests. But whatever limitations on third-party
access the community decides are feasible and desirable, adult patients
must be allowed to gauge for themselves the risk of whatever danger
remains.
What about children, however? Should blanket genetic tests be permitted
soon after birth, if not before, that would reveal any genetic
abnormalities? It might seem unfair for a child to grow up in a world in
which others know he is doomed, even if this information is somehow
limited to his own family, who would inevitably treat him differently. But
would it be right to deny a family such information, which it might use not
only to help prepare for his life but to avoid the worst consequences for
other members of the family? A legal prohibition on blanket testing might
have a deleterious effect on research, moreover, and hinder the search for
treatment of diseases now intractable. On balance, I believe that families
should be allowed blanket testing of infants, but that the practice
underscores the need for effective limits on the dissemination of genetic
information.
B. Prenatal Testing
The major objection to prenatal testing is a fear of abortion, or of abortion
for the wrong reasons. Of course, parents might wish to have as full a
genetic profile as possible of a fetus, just as many are now anxious to
know its sex, for less minatory reasons. But abortion is the main worry,
and we shall therefore have to face a particularly difficult and frightening
question. Under the law now in force in the United States and, at least in
practice, elsewhere in democratic societies, there is no legal prohibition of
early abortion for any reason, and it is unlikely that more stringent legal
restrictions will be adopted soon. In these circumstances, it strikes the
fiercest opponents of abortion as particularly important that no
information be available that would be likely to increase the number of
abortions. Theysensibly, given their convictionsthink that any means,
including bans on discovery, are justified that will reduce the number of
what they believe to be murders. But those of us who reject their general
position, because we do not believe that it even makes sense to suppose
that a fetus has interests of its own before sentience has developed, have
more difficult choices to make. We face a series of questions. Is abortion
ever a moral mistake? If so, does whether it is a mistake depend on the
motive for the abortion? If so, is it appropriate for us, if we are in the
majority, to enforce our conviction that abortion is wrong through the
criminal law? If so, is the means now under discussion restricting the
discovery by a woman of facts about a fetus she is carrying an
appropriate means of enforcing that conviction?
We must remember that under the hypothesis that an early fetus has no
interests, we are considering a moral question on the second dimension I
distinguished: a question of detached not derivative value. Opinions about
such values are notoriously varied, even within a particular democratic
culture, in large part because they are sensitive to the very different
religious convictions that coexist in such cultures. I myself believe that an
abortion is morally wrong when it does not show respect for the intrinsic
value of every human life, in no matter what stage or form, and that the
moral rightness or wrongness of an abortion therefore depends critically
on its motive.2 An abortion shows the proper respect for human life, in
principle, in two circumstances: first, when the life of the child, if carried
to term, would be a frustrating one, in which the ambitions common to the
full range of normal lives, which indude freedom from pain, ample physical
mobility, the capacity for an intellectual and emotional life, and the
capacity to plan and execute projects, could be realized, if at all, only to a
sharply reduced degree; second, when bearing a child is foreseeably likely
to have so catastrophic an impact on the success of other livesof the
mother and of other children in the family, for examplethat concern for
the intrinsic value of the latter lives might plausibly be thought to
outweigh concern for the life of the fetus, in which no investment beyond
the biological had as yet been made.
The second of these circumstances, though of enormous moral and political importance, is not in point here. The first distinguishes between conditions so threatening to a prospective life that they justify abortion out of
concern for the value of that life, and those that are not so threatening.
How shall we make that distinction? The devastating genetic defects that
take hold immediately, or in infancy, and insure an early death seem to
Consider this thought experiment. Suppose that all the citizens of any
particular political society, with their present tastes and ambitions, had
the average wealth now found in that society, as well as full, state-of-theart information about what benefits genetic engineering might bring them,
under imagined circumstances, and what the cost of insuring to provide it
in those circumstances would be. If we think that citizens generally would
purchase insurance to provide a particular kind of therapysay, genetic
tests to improve the effectiveness of chemotherapy should they need it
then we should insist that a national health service provide that
treatment. If, on the contrary, we think that citizens would not purchase
insurance providing for a particular therapysay, growth treatment for a
marginally short child they might conceivebecause they would think
they had better uses for the money the premiums would cost, given how
unlikely they were to need the treatment, then a national health service
should not provide that treatment, so that the collective wealth saved
could indeed be spent elsewhere. My own opinion, however, once again, is
that rich people should be allowed to purchase therapy, at market rates,
beyond what that calculation would mean providing for everyone. We do
not in general seek equality by leveling down, and even a diminished
demand for a particular therapy will stimulate research, with possibly
unanticipated general benefits, that would not otherwise take place.
III. Cloning and Engineering
A. Why Not?
So far we have been occupied with familiar problems of personal and
social justice in a new context: these problems are exacerbated, but their
character is not fundamentally changed, by genetic discoveries and
inventions. We have also been concerned, except in our brief discussion of
abortion, with what I called derivative rather than detached values. We
have been worrying about how the new technology should be used and
regulated so as to protect peoples interests. Our next discussion will
reverse this emphasis: we will henceforth be worried mainly by
dramatically new issues and by values of a different and detached
character.
The most arresting of the possibilities geneticists are now exploring would
give scientists and doctors the power to choose which human beings there
will be. People gained that power long ago, in a broad and clumsy way,
when they came to understood that allowing certain people rather than
others to mate would have consequences for the kind of children they
produced. Eugenics which was supported by George Bernard Shaw and
Oliver Wendell Holmes as well as Adolf Hiller, was modeled on that simple
insight. But genetic science now holds out the possibility, at least as
comprehensible fantasy, of creating particular human beings who have
been designed, one by one, according to a detailed blueprint, or of
changing existing human beings, either as fetuses or later, to create
people with chosen genetic properties.
Even the fantasy of this, when the technology was first described, was
greeted with shock and indignation, and that shock crystallized when
scientists in Scotland cloned an adult sheep, and other scientists and
episodes people reached for the expression playing God, in one case to
accuse the scientists who had dramatically increased our powers over
nature by cracking what had been thought fundamental in Gods design,
and in the other to criticize dying patients for taking upon themselves a
decision that the past limits of medicine had made it easy to treat as
God's alone.
My hypothesis is that genetic science has suddenly made us aware of the
possibility of a similar though far greater pending moral dislocation. We
dread the prospect of people designing other people because that
possibility in itself shiftsmuch more dramatically than in these other
examplesthe chance/choice boundary that structures our values as a
whole, and such a shift threatens, not to offend any of our present values,
derivative or detached, but, on the contrary, to make a great part of these
suddenly obsolete. Our physical beingthe brain and body that furnishes
each persons material substratehas long been the absolute paradigm of
what is both devastating^' important to us and, in its initial condition,
beyond our power to alter and therefore beyond the scope of our
responsibility, either individual or collective. The popularity of the term
genetic lottery itself shows the centrality of our conviction that what we
most basically are is a matter of chance not choice. 1 do not mean that
genetic continuity provides the key to the technical philosophical problem
of personal identity, though some philosophers have indeed thought this. I
mean to make a psychological point: people think that the very essence of
the distinction between what God or nature provides, and what they are
responsible for making of or with that provision, is to be defined
physically, in terms of what is in the genes or, in a metaphor reflecting
an older science, the blood.
If we were to take seriously the possibility we are now exploringthat
scientists really have gained the capacity to create a human being having
any phenotype that they or their prospective parents choosethen we
could chart the destruction of settled moral and ethical attitudes starting
at almost any point. We use the chance/choice distinction not simply in
our assignments of responsibility for situations or events, for example, but
in our assessments of pride, including pride in what nature has given us. It
is a striking phenomenon, now, that people take pride in physical
attributes or skills they did not choose or create, like physical appearance
or strength, but not when these can be seen to lx* the results of the
efforts of others in which they played no part. A woman who puts herself
in the hands of a cosmetic surgeon may rejoice in the result but can take
no pride in it; certainly not the pride she would have taken if she had been
born into the same beauty. What would happen to pride in our physical
attributes, or even what we made of them, if these were the inexorable
results not of a nature in whose pride we are allowed, as it were, to share,
but of the decision of our parents and their hired geneticists?
But the most dramatic use of the fundamental chance/choice distinction is
in the assignment of personal and collective responsibility, and it is here
that the danger of moral insecurity seems greatest. We now accept the
are nevertheless already popular fiction, and the publics hostile reaction,
which is presented as based on moral and ethical conviction, may stand in
the way of independent and genuine scientific advance. Even if it is never
possible to clone entire human beings, research into the processes of
cloning may yet produce enormous medical benefitsin the generation of
immune-reaction-proof organs for transplant into a patient whose somatic
cell produced the organ, for example. The hostile popular reaction has
been indiscriminate, however, and threatens to generate across-the-board
bans on all such research, so it might be helpful to debate whether the
moral and ethical objections would provide sound reasons for halting
research even if, as popular imagination fears, the most dramatic
consequences were in fact realized. Moreover, the questions raised by the
specter of cloning and dramatic genetic engineering are morally
instructive even if these techniques are not genuine possibilities. Once the
techniques are in the air, they provide fresh and valuable tests for the
coherence and adequacy of established and conventional assumptions.
Many of us regard reproductive freedom as a fundamental human right,
for example. Can we continue in that conviction once we acknowledge
even the bare possibility that such a right, once granted, would extend to
the freedom to clone oneself or to design a child according to some
supposed standard of perfection?
Whether such questions seem important may well depend on ones views
about the character of morality. Some people take a pragmatic attitude
toward moral conviction: morality, they think, is a device for coordinating
our behavior in useful and peaceful ways in the face of potential conflicts.
Such people will not see the point in worrying about the adjustments in
our coordinated behavior that might conceivably be required, but not for
many years if ever. Others think that morality has a more independent
status and authority: they would be reluctant to base any argument, even
one of immediate practical consequence, on the claim that a principle like
the principle of reproductive autonomy had overriding authority if they
had to concede that they would not endorse that principle in imagined
even if unlikely circumstances. 1 believe that most people take the latter
philosophers call it a realistattitude toward their moral principles
and convictions rather than the former, more instrumental attitude, and
the explanation I offered of the ground of the deep-seated hostility' toward
the more dramatic genetic technology presupposes that latter attitude.
I suggested that even the bare possibility of achieving dramatic control
over our childrens genetic structure undermines our most basic assumptions about the boundary between what we are responsible for choosing
and what, for better or worse, lies beyond our control because it is fixed
by chance or nature or the gods. Our genetic identitywho we and our
children arehas been a paradigm of natures responsibility and not ours,
and any substantial reallocation of that decision to the sphere of our own
responsibility would destabilize much of our conventional morality. Once
we understand that it is up to us, at least collectively, whether we allow
genetic testing and the treatment that follows might well be founded, on
religious conviction. This fiat principle of bodily integrity may, however, be
one of those artifacts of conventional morality that seemed well justified
before the possibilities suggested by modern genetic medicine were
plausibly imagined, but not after. If we are to accept a more fundamental
principle of concern for the lives of everyone, that principle of bodily
integrity may one day have to be qualified.
How would our attitudes about a fair insurance market have to be revised
if genetic testing became sufficiently widespread to affect the economics
of that market? Should life insurers be permitted to require genetic tests
that they deem good predictors of life expectancy? Or to charge higher
premiums to those who refuse such tests? If not, should they be allowed
to ask whether applicants for insurance have had such tests, and to
demand the results if they have? The Association of British Insurers has
decided not to demand tests, or even to ask whether an applicant has had
tests, for life policies of less than 100,000 when the policy is taken out in
connection with a mortgage. But that is only a temporary and voluntary
restriction. Should it be made mandatory and permanent? Should it apply
to all policies?
That is a derivative issue, because it asks about the appropriate resolution
of a conflict of interests between the genetically lucky, who would pay less
for insurance if premiums reflected genetic propensity to disease, and the
genetically unlucky, who would pay more. There are several candidates
for a principle to resolve that conflict. One, which might be called a
principle of actuarial accuracy, objects to the use of genetic testing in
insurance decisions on the ground that insurance companies would rely on
crude classifications for genetic prediction because refining those
categories to establish a more finely graded premium structure would be
too expensive in administration costs. Many people would then be
charged at higher rates than their actual predisposition to disease would
justify. That is unfair, however, only if fairness requires that people pay in
proportion to the risk that they impose on the risk pool, no matter how
expensive it would be to discover that risk. That seems an irrational
definition of fairness, because a fair system, on that account, would be an
economically wasteful one. If fairness really means that each applicant
should pay in proportion to the antecedent cost to the pool of insuring
him, then that cost must include administrative and other secondary
costs, so that it would not, after all, be unfair to lump people together who
actually fall into different categories of genetically signaled risk. If that
practice does seem unfair to you, then you may actually reject the idea
that fairness demands that people who pose higher risks, through no fault
of their own, should pay a higher share of the overall insurance premium.
The default system of ethical individualism, which demands equal concern
for the situation of everyone, recommends a different account of fairness.
It insists that a fair distribution of risks and benefits is one that is sensitive
to different peoples choices but insensitive to their brute bad luck,
including their luck in what is still, at the present stage of technology, a