The dilemmas of pre-natal testing

[Guest guest]

Margaret

Somerville | Friday, 28 November 2008

The dilemmas of pre-natal testing

Are we using pre-natal testing as part of a search-and-destroy mission for

the disabled?

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 screening.

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 decision-making.

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 level?

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.

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 eugenics)?

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 themselves.

This is a breach of both

ethics and law.

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 child.

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

http://www.mercatornet.com/articles/view/the_dilemmas_of_pre_natal_testing