what-when-how
In Depth Tutorials and Information
draw from a pregnant woman.
57-59
Prenatal screen-
ing and testing can result in the treatment and cure
of some disorders and avoid tremendous suffering.
However, there are many disorders like OI that can be
detected prenatally but not cured. In pursuit of good
health, there is sometimes selection against fetuses that
carry disease genes - usually motivated by compassion
toward the fetus or the family who is unable to assume
the care of such an infant. Yet, in pursuing this goal,
there may be unintended ramifications. For example,
the elimination of fetuses with genetic diseases can
lead to a judgment of human worth that denigrates
those living with chronic disorders. It can lead to a less
diverse society with increased marginalization of dis-
abled people, and to decreased effort to support a full
life for them (through decreased educational support
and scientific research, for instance, on behalf of the
disabled). The ethical argument that addresses this con-
cern is the disability rights critique.
concerned and emphasize the joys that persons living
with disabilities and their families can experience.
SUMMARY
This chapter does not intend to provide an algorithm
for problem solving or a formula for right conduct
when facing ethical dilemmas that arise in the care of
persons with OI. That would be impossible and is not
the philosophical role of bioethics. The practice of bio-
ethical reasoning encourages iterative reflection, listen-
ing to the values of the other, defining shared goals,
reframing issues of caring and suffering, and processing
information critically, intellectually and emotionally.
46
In the process of ethical deliberation, thoughtful and
knowledgeable clinicians may reach different ethical
conclusions in cases like those discussed above; there is
usually more than one ethically justifiable response. The
goal of bioethics in health care is to enable more pro-
ductive communication that leads to shared decision-
making and increases well-being for patients and health
care professions.
Disability Rights Critique
The central claim of the disability rights critique is
that prenatal screening, testing and diagnosis of genetic
markers associated with a disability, and subsequent
selective termination of a pregnancy, send a disparag-
ing message to people living with those disorders.
60
In
such cases, the presence of a single mutation is sufi-
cient reason to abort an otherwise wanted fetus, allow-
ing the gene to represent the whole person. Even when
prenatal testing and subsequent abortion is done to
implement the would-be parents' goals for their fam-
ily and not intended to disparage persons existing with
disabilities, the message is interpreted as such by advo-
cates for the rights of the disabled.
Many bioethicists, disability rights advocates and
persons with disabilities who are not opposed to abor-
tion
per se
embrace the disability rights perspective
because they claim that selective abortion of disabled
fetuses indicates that the lives of the disabled are in
some sense deemed “less worth living than the lives
of the nondisabled…Because they have less happiness
or good and more suffering and limited opportunities,
their lives are less valuable…”
61
The disability critique
acknowledges that a disorder can entail physical, eco-
nomic, social and emotional hardship for a child and a
family but those do not detract from the worth of the
individual. This perspective cites evidence that a life
lived with a disability is on balance no worse than a life
lived without apparent disabilities. Rather, a life lived
with a disability is neutral when compared with rais-
ing any other child.
62
The goals of the disability rights
critique challenge the notion that life with a disabled
child is a life of unending pain and suffering for all
References
[10]
[11]
[12]
[13]
