The Dilemmas of Pre-Natal Testing

Margaret Somerville
November 28, 2008
Reproduced with Permission

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:

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.