The dilemmas of pre-natal testing

Ethical issues arise when not all
values can be respected. The values in conflict must then be
prioritized and the essence of "doing ethics" is to justify
breaching the values that are not respected. So what values are in
play in pre-natal genetic screening?

First, we need to look at the values
implicated at different levels -- individual, institutional, societal
and global -- by pre-natal screening.

Values priorities at different levels
can conflict. Routine pre-natal screening implicates values of
respect for both individual human life and human life in general;
respect for "disabled" (differently-abled) people, as both
individuals and a group; and respect for the rights to autonomy and
self-determination of pregnant women.

So, some people see pre-natal screening
as enhancing an individual pregnant woman's decision-making autonomy
and ethical at the individual level for that reason.

But, as I explain below, widespread,
publicly endorsed and societally paid for screening can also be
viewed as endorsing unethical values and setting unethical precedents
at the institutional and societal levels. That means we must consider
the ethics of society's support for and complicity in prenatal

Moreover, we must take into account the
impact of screening decisions as a collective reality, that is, as a
cumulative whole, not just at the level of individual

As harsh as the language is, we must
ask ourselves: "Are we on a search-and-destroy mission to wipe
out certain groups of people?" Widespread pre-natal screening
will eliminate entire groups of people, for instance, those with Down
syndrome, genetically linked mental illness such as bipolar disease,
the profoundly deaf, and so on. The vast majority of people oppose
screening for sex as unethical, except some would allow it for
sex-linked diseases. And some gay people are concerned there could be
screening for genes linked with homosexuality.

If we don't want genetically "disabled"
children to be born, what are our reasons and justifications? Are
those reasons and justifications ethically acceptable? What
principles and values do they establish and affirm at a societal

And when there are no legal
restrictions on abortion, we must also consider routinized pre-natal
screening in that light. Is it ethically acceptable to abort, for
instance, a Down syndrome child at eight months of gestation?

Most genetic conditions regarded as
undesirable, that can be tested for, are untreatable. The only
possible or intended recourse is to eliminate the fetus with them.
That converts an unborn child to a fungible product. Instead of being
seen as a unique human, who never existed before and never will again
(cloning aside), the child becomes replaceable: "We will get rid
of this one and try again."

So, are we implementing a new eugenics
and, if so, what are its dangers? To respond we need to take heed of

History teaches us that the use of
science in the search for human perfection has been at the root of
some of our greatest atrocities in terms of respect for human life,
individual human beings and human rights. That warning is of
particular importance today, because of our unprecedented new
technoscience powers. We must take great care only to use them
ethically and wisely.

Proposals to offer genetic screening
for Down syndrome to all pregnant women, communicates a message that
a woman is conditionally pregnant, until she is told there is
"nothing wrong" with the baby. The affirmation of the
pregnancy is suspended until the fetus is certified as "normal,"
which is a major change from needing an ethical justification to end
the pregnancy, as has been the traditional approach.

We need to ask questions such as: How
does this approach affect our concept that parental love is
unconditional -- that we love our children just because they are our
children? And if parental love is conditional -- we will only love
them if they don't have certain traits (negative eugenics) -- should
the same apply to traits we want in them? That is, we should be
allowed to genetically design or enhance our children (positive

Prenatal screening also raises many
"everyday ethics" issues. New research shows it is
presented to women as "routine" obstetrics practice --
their informed consent to it is not obtained -- and the impact of
"abnormal" results is only faced when they present

This is a breach of both ethics and

Physicians tend to assume there are
only benefits to pregnant women of this testing. However, new
evidence is emerging that this is not true, especially with respect
to psychological harm.

Women's informed consent to testing is
required, but many physicians don't have the knowledge required to
obtain it -- the same reason they are not competent to carry out
follow-up genetic counselling.

And some other questions:

* What range of tests will be offered
and how rapidly will this increase?

* What about physicians who have
conscientious objections to offering these tests?

* How will women who refuse screening
be regarded? Research shows they worry that physicians disapprove of
their decision as unreasonable and that will adversely affect the
physician-patient relationship. Because the physician-patient
relationship is one of unequal power, it's difficult even for highly
educated, confident patients, let alone the average person, to go
against their physician's recommendations. Those conditions create a
climate of coercion not to refuse the screening.

* What will be the impact on families
who "choose" not to abort when "abnormalities"
are discovered, that is, they "choose" to have a disabled
child? Many of these people believe that they will be seen as
socially irresponsible. That belief creates a climate of coercion not
to proceed with the pregnancy.

* What will be the impact on people
with disabilities of the same or similar nature to those screened for
and the elimination of unborn children who have them?

Whether or not we like it, the message
we will be delivering at the societal level is: "We don't want
you in our society unless you measure up to a certain genetic
standard. You are only a potential member, until you've passed the
admission test that we are willing to pay for with our tax dollars
and implement."

The unavoidable collective impact of
these decisions is the implementation of negative eugenics with
respect to disabled people and it's disingenuous to deny that.

And what about the ethical issues
raised by the tests themselves: false positive results; difficulties
in interpretation of results; and the crude nature of our predictive
abilities as to what certain identified "abnormalities"
mean in terms of the person's functioning.

For many reasons, including "defensive
medicine" (fear of legal liability), physicians tend to err on
the very pessimistic side in predicting the impact on the child of
the abnormalities detected and, usually, see no possible benefits
from having such a child -- they can be astonished to learn of the
joy, bonding and love a "disabled" child can bring to a
family, unless they themselves have, for instance, a Down syndrome

Deciding about prenatal screening is a
momentous and, ethically and practically, very complex decision for
both individuals and society, with far-reaching and immensely serious
implications. We all need moral courage and wise ethical restraint in
taking that decision.

Margaret Somerville is director of
the Centre for Medicine, Ethics and Law at McGill University, and
author of The Ethical Imagination: Journeys of the Human Spirit.


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