1589011384.Georgetown.University.Press.Biotechnology.and.the.Human.Good.May.2007

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dreamt since childhood, despite his genetically flawed condition. Gat-
taca is a bleak film. The only resistance Vincent can come up with is
faking it. He has no language of protest and no ethical distance available
to him. This is just the world as he and others know it and presumably
will always know it. Uma Thurman s intimacy with an Invalid is as close
to resistance as she can get. There are no alternative points of reference
or resistance.18
Of course, we are not in the Gattaca nightmare yet. But are we
drawing uncomfortably close? There are those who believe so, includ-
ing the mother of a Down syndrome child who wrote the author of a
column about genetic engineering in The New Republic.19 That piece
reflects on what our quest for bodily perfection might mean over the
long run for the developmentally different. This mother, whose child
died of a critical illness in his third year, wrote that she and her husband
were enormously grateful to have had the joyous privilege of parent-
ing a child with Down Syndrome. She explains:
Tommy s [not his real name] birth truly transformed our lives in ways
that we will cherish forever. . . . But how could we have known in ad-
vance that we indeed possessed the fortitude to parent a child with special
needs? And who would have told us of the rich rewards? . . . The function
of prenatal tests, despite protestations to the contrary, is to provide par-
ents the information necessary to assure that all pregnancies brought to
term are normal. I worry not only about the encouragement given to
eliminating a whole category of persons (the point you make), but
also about the prospects for respect and treatment of children who come
to be brain-damaged either through unexpected birth traumas or later
accidents. And what about the pressures to which parents like myself will
be subject? How could you choose to burden society in this way?20
Expanding Choice and Diminishing Humanity
In the name of expanding choice, then, we are narrowing our definition
of humanity and, along the way, a felt responsibility to create welcom-
ing environments for all children, for we can simply declare that they
chose to have an abnormal child and now they must pay the conse-
quences. This declaration, if it is generalized, takes us, as individuals
Biotechnology and the Quest for Control 95
and a society, off the hook for the purpose of social care and concern
for all persons, including those with bodies and minds that are not
normal. This trend stitches together a cluster of views under the ru-
bric of expanding choice, enhancing control, and extending freedom.
The end result is diminution of the sphere of the unchosen and
expansion of the reign of control-over. Rather than viewing children
who are not normal in their development as a type of child who
occurs from time to time among us and who, in common with all chil-
dren, makes a claim on our tenderest affections and most fundamental
obligations, we see such children as beset by a fixable condition:
There must be a cure. The cure, for the most part, is to gain sufficient
knowledge (or at least to claim to have such knowledge) that one can
predict the outcome of a pregnancy and move immediately to prevent
a wrongful birth in the first place. The fact that curing Down syn-
drome means one eliminates entirely one type of human being is no
barrier to this effort. People living with Down syndrome must simply
cope with the knowledge that our culture s dominant view is that it
would be better were no more of their kind to appear among us.
In The Future of the Disabled in Liberal Society: An Ethical Analy-
sis,21 the philosopher Hans S. Reinders, a professor of ethics at the Vrije
University in Amsterdam, argues that, despite public policy efforts to
ensure equal opportunity and access for all, liberal society (including
our own) cannot sustain equal regard for persons with disabilities. This
is especially true if the disabilities in question are mental. The liberal
presupposition that privileges choice as the primary category in pub-
lic life and the apogee of human aspiration, paired with modern tech-
nologies of reproductive and genetic engineering, dictates that it would
be far better if human persons who are incapable of choosing on this
model were not to appear among us.
So strong is the prejudice in this direction that we simply assume
that hypothetical unborn children with cognitive disabilities would, if
they could, choose not to be born. Reinders argues that the regnant
view among liberal philosophers is that human beings with mental re- [ Pobierz całość w formacie PDF ]

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