"Beggars in Spain" is a three-part novel about a woman who was genetically engineered to not require sleep. The science fiction book addresses the topics of society's resentment against genetically improved humans. However, the book may be more science than fiction.
I recently read an article about parents who were "genetically engineering" their children so as to avoid passing on genetic diseases. Their methods varied. One Jewish community, which already practices arranged marriages, took into consideration risk for certain genetic diseases when pairing couples. Other couples who are using artificial insemination pre-test embryos for susceptibility to genetic diseases before implantation. The final method is to abort fetuses who test strong or positive for these dieases.
Oddly enough, the article seemed to praise these efforts and applaud the parents who made these decisions as heroes of the human race. However, when I look over that last paragraph, I see ethical dilemma after ethical dilemma - eugenics, bioengieering, abortion. Are any of these topics easy?
One's view on the ethics of genetic selection may be based on when you believe life forms. For instance, some may find aborting fetuses a much higher ethical problem than discarding embryos. I would like to leave my opinion out of that argument for a moment to say that, whether one considers embryos to be human beings or not, the idea of testing, selecting, and altering embryos sounds eerily like genetic engineering. It brings to mind words like 1984 and clones.
The plus sides of genetic selection are obvious - people will be healthy. Diseases will not be passed on to future generations. But the drawbacks are numerous!
1. As people select their children to not have genetic diseases, research for cures for these diseases will go by the wayside. This will effectively leave out those who choose not to use genetic testing either for ethical or financial reasons.
2. The definition of a genetic disease may broaden. Already most parents who find out they are carrying a Down Syndrome child choose to abort. How many other diseases and birth defects will we decide are too burdensome either on the parent or child to warrant carrying the baby full term? For instance, what if the child is missing a limb? A thumb? Will we be able to test the potential IQ of children before they are born and abort children who are only average? And what about eugenics? The idea that we can create the perfect human being, and idea that was popular in the 1930's and inspired Adolf Hitler?
3. Right now genetic testing is only being performed on embryos from parents who are trying to have children. However, as this science expands, it could become more popular and less carefully used. If genetic selection is performed on too many children, the gene pool could be decreased, which may actually cause MORE sickness in the general population.
4. The ability to use genetic testing to select children is an emerging technology, and it will therefore be used only in dire cases or for wealthy individuals. This will serve to further the class gap. Poor families who cannot affort genetic testing will have to struggle to pay the medical costs of raising sick children, while the wealthy will choose only to have healthy (and perhaps intelligent, athletic, etc., when the technology improves) children.
5. Those who are now living with genetic diseases may be hurt by the process. I was interested in the response to the Super Bowl commercial from Focus on the Family. Here a woman stood up and said how blessed she was to have her son, and her son stood up and said how happy he was to be alive, and people actually became outraged. What kind of person does it take to look a mom and her son in the eyes and say, "No, this man should not be alive?" And he was healthy. People who are not in perfect health can still contribute to society, love, feel, and enjoy life. And more than that, their parents love this child. Sure, times are tough, but parents were meant to love their children, and ultimately, they are a joy to them.
6. Some of these genetic diseases do not kill for many years. One man featured in the article had Huntington's Disease. I am not an expert on this disease, but the article itself said that first symptoms often do not appear until someone is in their 40's, and even then, the disease works slowly. To be sure, a slow death is not appealing to anyone. However, this is all the more reason to find cures for the disease itself. The man was so proud he was going to eradicate the disease in his family, and yet he had his 40 healthy years to live. Who are we to say that a potential child, whether embryo or fetus, would rather never be born than to live a good life of 40 years? What if that child had found the cure for Huntington Disease, forging on through life-saving necessity?
7. Most importantly, this practice furthers our culture's downward spiral into a culture that has no love. By genetically testing potential children, parents are giving a clear signal - only healthy children will be acceptable. However, there are still many diseases that cannot be diagnosed in the womb, and non health related traits such as intelligence are all but impossible. Further, sometimes pre-birth diagnoses are inaccurate. How many times does a doctor get the gender of a baby wrong? I have seen it happen. Are you willing to trust your child's life on a similar diagnosis? Or risk a healthy baby's life to actually perform the test in the first place?
Further, when parents close the door on unhealthy children, they are closing the door to the possibility of unconditional love. A year, four years, or even 12 years, after their healthy child is born it is possible he could get in a car wreck and enter a wheelchair for the rest of his life, or perhaps suffer severe brain damag. How will parents who custom ordered a healthy child deal with the unpredictable?
How will children in the family feel about the practice - will they feel the love of their parents looking out for their health? Or will they feel pressure to measure up to the pre-set standards? Will they wonder if they would have been a twin or triplet, if only that other embryo had not shown predisposition to a genetic disease?
This is so important. No matter what your opinion on birth control, abortion, or even genetic testing is, if you set out to do something "for the children," you must consider all the consequences of that choice. Ultimately, what are the motives of genetic testing? Is it really to have healthy, happy children who will lead fulfilled lives? Or is it so we can have wealthy or middle-class parents who don't have to struggle along for finances and free time as they help their child, God's precious gift, through life. Are these heroes of humanity after all?
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