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Designer Babies: where do we draw the line?
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Designer Babies: where do we draw the line?

Prenatal testing, when it was initially introduced, sparked enormous controversy but now that we’ve been doing it for donkey’s years, it’s common practice and not even remotely shocking.
Prenatal screening, in a nutshell, involves testing for diseases or conditions in the baby, or foetus I should say, before it’s born. We usually screen for birth defects, chromosome abnormalities such as Down Syndrome and genetic conditions.
Testing usually consists of simple blood tests and non-invasive ultrasounds but if there are any abnormalities or any concerns, more invasive tests are offered. Amniocentesis involves the insertion of a needle into the uterus to aspirate fluid. Amniotic fluid contains foetal cells which can be tested for genetic abnormalities.
A positive test result carries serious implications as it can prompt the termination of the pregnancy. There was uproar when foetal screening first became available. Society (medical people and clergymen alike) was worried that it would herald the trend of designer babies, that we would be aborting pregnancies on the basis that the baby was of the undesired gender or other relatively trivial considerations, that parents would select specific traits to be passed on to their child. Of course, this hasn’t happened: the world isn’t mad enough. Prenatal screening has led to termination of pregnancies mostly when the foetus has been diagnosed with a severe medical condition.
On the other had, it has allowed for better care of difficult pregnancies and deliveries. If the pregnancy does come to term, delivery is planned and carried out by an expert obstetrician in a large hospital with a neonatal intensive care unit to provide appropriate care to the baby. Prenatal screening also allows for better psychological preparation of the expectant parents. A medical condition or a disability places a significant psychological burden on new parents and can be incredibly traumatic if they are unprepared.
For the aforementioned reasons prenatal screening is now part and parcel of every pregnancy unless the parents opt out of it. We longer question it and it’s no longer the subject of controversy . Until now.
I would let sleeping dogs lie except that technology, being what it is, has now revived the screening issue. Researchers have recently introduced the new era of foetal testing: with a simple maternal blood test, the whole genetic makeup of the baby can be mapped out. It is possible to determine all the baby’s hereditary information as early as the first trimester.
This is a new and exciting era in prenatal testing and the next best thing in medical research but it raises a host of complex ethical issues.
A blood test to obtain the entire genetic profile of a baby is a very different kettle of fish to our current practice of ultrasound and amniocentesis. Amniocentesis and ultrasounds are performed by physicians and they only look for very specific diseases. Amniocentesis also carries a risk of losing the baby and it’s a decision that’s made very carefully after much discussion with the treating doctors. Parents don’t rush into advanced testing because it’s risky and have often thought a great deal about the matter before electing to proceed with test.
Genetic profiling with a single blood test is not invasive, and expectant parents are more likely to agree to it without the careful consideration it requires. A blood test, however loaded, is so easily done, so why not? Furthermore, genetic profiling looks at the entire genetic makeup of the baby, every single gene, every single trait, every minor aberrancy, every potential flaw. It can pick up on genes that may be silent for a long time then could potentially appear later in life. So parents will be able to predict if a child will go on and develop adultonset diseases such as Type 2 diabetes or if they will be bald by the time they are 30.
The problem with such a sophisticated and detailed test is that it gives us information we may not know how to interpret. Who knows what slight abnormality in a gene might mean? We all carry mutated genes but it doesn’t mean we go on and develop devastating diseases. A genetic anomaly does not necessarily translate to a significant medical condition. So here’s the dilemma: If you were told that your unborn child carried a defective gene that may or may not give her a disease later in life, what would you do?
There is something very disturbing about the whole affair of screening for genetic flaws in utero, something that is disturbingly reminiscent of Huxley’s Brave New World, where he describes the artificial production of babies in a fertilizing room with all of the newborn’s attributes controlled. I think also, to put it bluntly, that it’s a confronting statement about the value we, as a society, put on mentally and physically disabled people.
That being said, there are significant medical advantages to wide screening. Some genetic disorders do not manifest until relatively late in childhood. Some intellectual disabilities only become apparent when the child starts school. If the child is diagnosed early before they start exhibiting symptoms, their outcome could be significantly better. For instance, an intellectually disabled child who is placed in a specialized school from early on achieves much better development than one whose diagnosis is delayed and is left to flounder in a regular school.
Genetic testing can also spare that child (and the public health care system) the cost and burden of a battery of tests, brain scans and psychology sessions to try and work out what the problem is when the child fails to thrive. Similarly, many of the genetic ‘flaws’ that will be unveiled will be about complex diseases that are predisposed by the gene but only come about in certain environments. For example, carrying a gene that predisposes to cancer doesn’t mean that the individual will necessary develop a tumour but can prompt the concerned party to get cancer screening from an earlier age and be religiously regular with tests. Finding a genetic predisposition for adult-onset diabetes in the fetus can encourage early lifestyle choices to try and prevent that outcome.
In medicine, as in everything else,knowledge is power.
Advocates of genetic testing also argue that parental autonomy should be respected. Expected parents should be allowed to have the full genetic test if they wish to, provided they get genetic counseling so that they know how to interpret the results. What they do with the information is their choice. It may culminate in a pregnancy termination that others may frown upon but fundamentally, it’s basic reproductive choice.
You could argue this issue until the cows come home and I suspect that over the years to come, many of us will get into heated debate. The Council of Bioethics, the ultimate authority on such delicate matters, suggested that screening should be offered only for specific diseases and conditions that would directly affect the child, and if parents wanted anything extra, it was their prerogative and they could request it.
Matters like this one are almost impossible to resolve; there is no right or wrong, science, morals, ethics and the law are messily intermingled in the least harmonious way possible and everyone has an ‘expert’ opinion.
In my humble opinion, screening should only be done if it will benefit the child. The whole purpose of prenatal screening is to prevent harm and suffering to the unborn baby and wherever possible get a medically better outcome for the baby. It was never designed to look for needles in a haystack and extrapolate conclusions. And it was never meant to look for potential flaws that may or may not be relevant.
However, we cannot righteously withhold information. The concern that information will be misunderstood is valid but that’s an impetus to educate health care workers and train genetic counselors, not simply withhold knowledge. We are not a medieval society that keeps it’s people in the dark because they can’t handle the truth; surely we can do better than that.
There is also a fear that with such a detailed test, the rates of pregnancy termination might sky-rocket but concerns over a potential increase in the rates of abortion cannot be used to justify withholding information over a potential future illness. Genetic testing doesn’t mean we are treating children as commodities either. The same argument was raised about in-vitro fertlisation when it first became available. We were so wrong then, so misguided.
To be perfectly honest, I think that many parents will choose not to have the full testing. And for those who do, it will be with the well-being of their child in mind. The tests may be different, the technology may be more advanced, but at the crux of the matter lie parents who want what’s best for their child not randowm strangers playing fast and loose with the lives of babies. It may not be a clear-cut decision but knowledge is power. Information is power. Withholding knowledge in this day an age is not a demonstration of humility but modern-day tyranny.
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