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TechnoratiThe 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 Spirit.
Since the majority of pregnancies are normal I suggest the best thing to do is to assume the baby will be fine, but be prepared to love the baby whether he or she is “healthy” or not.
I got through my second pregnancy without needing an ultrasound scan much as I would have loved to be “reassured” everything was ok. During my first pregnancy I had had a falsely reassuring early scan because my baby’s back couldn’t be seen - she wouldn’t (maybe couldn’t) turn around in the womb during the scan.
I do think ultrasound scans have a place if they are done to aid a safe delivery, e.g. there are concerns about the baby’s position or growth etc, or the mother’s ill health impacting on the baby. I doubt there are any sound reasons for amniocentesis tests because of the risk of injuring or killing the baby probably outweighs any potential benefits of knowing early.
Dear Stella, I am so sorry that your baby girl did not survive. There is no pain comparable, I think. And to have to recover from a c-sec on top of that seems unbearable. Thank you for telling a little bit about her.
I think one aspect of your baby’s story shows us just precisely the existential fact of all our lives - things don’t always go as we plan and hope. Not even the most innovative science/medicine can circumvent it. To believe that it could would be yet another kind of moral disorder . . . so much we have to watch for to stay on track, isn’t there? That is why we will always need God.
Another fine and provocative article from Margaret!
In this, I’m fully with Monica’s opinion: There’s potential in pre-natal testing to cure. More than that, the grand majority of pregnancies is going to be normal, and in the health centered culture of today (not to mention the natural motherhood concern), while it might distress the parents who receive “bad” notices, the majority will likely be relieved to know there is nothing wrong with their children. Less distress, happier pregnancies. Pre-natal tests are like second-hand opinions to the physician, so it wouldn’t be unreasonable if they start to rely on them more, even if unaware of all the consequences. And because we are in the infancy of the subject, it will take time until it mature. We probably shouldn’t worry too much in reading eugenic intentions in the pre-natal test proposals: The present societal and financing climate pressures the research centers to present applications for the research they do, and health industries are always trying to augment their market share. The majority of proposals we see are likely shots in the dark to see what will stick. Instead of discussing if we should kill the messenger or not, why not try to determine instead what would constitute the ethical pre-natal testing and create a protocol (or several) to it?
Likely elements of that discussion would be:
- What diseases would be worth (or ethical) to inspect.
- How the results would be presented (instead of classifying by conditions, they could be presented as therapeutic recommendations).
- Statistical confidence levels acceptable for the tests (since for equal probability failures, the number of false positives are going to be much greater than the negative ones, this can be particularly tragic here for implicit reasons).
- The legal protection for the tests (preempting total screening against legal action by the test suppliers, like software industry does).
- The society’s groups with access to the tests (Should we allow insurance companies to use them, for example?).
- etc…
This protocol would probably be welcome by a good part of the research community and industry if allow them to work and pacifies their relations with good chunks of the society. Morever, part of the private health community are religious oriented, and could came them to the open, financing or doing the research themselves. They would be creating the standard, instead of leaving that for others.
I think “the good that can come from prenatal testing” has to also be weighed against the trauma to the mother. I underwent an emergency caesarian because my baby with spina bifida and hydrocephaly was a footling breech, and while that and resuscitation did save her life initially, she did die a week later. At the time I thought “being prepared” may have helped with the birth, but since things didn’t go according to plan (I went into labour early) I now doubt knowing way beforehand made much difference to the outcome.
Some of the “therapies supplied in utero” involve removing the baby from the womb, operating and returning the baby to the womb - which I presume for the mother in effect entails two caesarian operations months, maybe only weeks, apart. We tend to hear about the successful operations, but what happens if the baby’s condition is more complicated than anticipated? I doubt surgeons put the baby back again! I think it preferable to wait till the baby is born, if necessary delivered a little early, before operating rather than risk the mother’s life through two serious operations close together.
Well, the gross misuse of prenatal testing is certainly a sign of our own moral disorders.
In a world where there was no abortion, I like to imagine the good that could come of prenatal testing; fewer newborns suffering strokes and even death because their heart defects were detected and treated early, birth plans for babies with spina bifida, tracheal occlusion, diaphragmatic hernias, and so much more. Therapies supplied in utero to undermine the devastating effects of some syndromes on the brain and other organs . . . all of these are good applications of prenatal diagnosis that could be used as an expression of our reverence for life and desire to protect, preserve, and heal . . .
How do we get there? - that’s the six million dollar question.
“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?”
This is precisely the issue. Our society no longer believes in unconditional love. Yet unconditional love is necessary for the child’s psychological and spiritual well-being. The alternative to unconditional love is not just conditional love, but conditional hate. Hate, like love, is not just an emotion, it’s a choice, a commitment. When a woman chooses not to love the child in her womb, she already objectifies that child. In her eyes, her child is not a person. Indeed, “it” is not her child. At best, “it” is in the process of becoming a child. When the “child” shows signs of abnormality, the woman then feels justified in “aborting the process,” just as a product quality expert feels justified in aborting a manufacturing process that yields defective products.
Margaret Somerville is such a fine thinker and writer that she takes my breath away.
I wonder whether she knows that when JPII was in Australia, I think on his first visit but memory may be failing me, he warned against loving science inordinately: a form of idolatry. This warning needs to be repeated and repeated and repeated, despite the gratitude we rightly feel when scientists make discoveries that clearly benefit humankind.
I agree that psychologically it is very difficult to have a baby diagnosed with a disability pre-natally. My first baby was diagnosed with hydrocephaly and spina bifida late in pregnancy (from 28 weeks). I spent the last weeks of my pregnancy going through the various stages of grief and I “withdrew” emotionally from my pre-born baby for a time in case she died. I fortunately was at the acceptance stage when my daughter was born a month before her due date, but many close to me were still in denial.
I was also fortunate that no one suggested I have an abortion, but neither was I referred to a paediatrician who would have had more experience of children with my baby’s condition. Mothers are choosing abortion when they are psychologically depressed, possibly in shock and denial and fearful of the future, without the chance of meeting and bonding with the baby at birth. After birth most mothers choose to bring up their own babies despite a disability because “love drives out fear”, or at least over comes it.
I know of several women who have refused genetic screening or have decided not to go ahead with an abortion. The remainder of the pregnancy has instead of being a joyful time of expectancy has been reduced to one of harrassment, fear and pressure with monthly checkups being times of many tears as pressure is increased or they are treated with disdain for having refused the testing. Abortion supporters talk a lot about freedom to choose for the mothers but it seems that only means if they choose to have an abortion. What is the point of the screening if the mother will not have an abortion? This pressure should be stopped. Many Down’s and other handicapped children bring great joy to their parents though I acknowledge that some are a great burden.
Margaret Somerville asks:
“Are we using pre-natal testing as part of a search-and-destroy mission for the disabled?”
Of course we do, just like we use abortion as a birth control procedure, and individual rights as a means to destroy democracy. Welcome to the brave new world!
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