Sharon Bernardi has had seven children. All but one died just a few hours after birth, while the survivor lived with extreme defects until his passing at age 21. At first the doctors could not figure out what was causing the seemingly healthy babies to suddenly pass away, but after her fourth baby, they found that it was from a deadly disease called Leigh’s syndrome, an abnormality in the mitochondria that the mother passes on to her children. Leigh’s syndrome causes severe psychomotor regression, which is a progressive loss of mental and movement abilities that cause the body to fail, and leads to death.
Sharon was heartbroken to see every one of her children only live a few hours and for those few hours to be filled with severe pain. After the diagnosis, she received news that the only way she could have healthy children is through the genetic modification of their DNA, a fairly controversial procedure (Banerji, Farahany). Genetic modification is defined as the artificial alteration of genes to produce a desired characteristic. Many use genetic engineering to prevent diseases such as Leigh’s syndrome. Others fear that the genetically engineering babies will cause a trend of designer babies.
With genetic modification, parents can pick and choose what genes they want their children to have, even if it involves a gene they don’t carry. This raises a controversial question. Should the action of genetically engineering babies be prohibited? No, genetic engineering should not be banned and should instead be more researched into. Though there are risks with genetic engineering, there is no greater risk than letting fear control the possible discoveries that science is currently striving to make.
Currently, there is a project called The Human Genome Project, which is a research project that focuses on identifying and mapping the human genome system from a physical and functional standpoint. Doing this will help explain biological and molecular function to help diagnose and treat diseases. The Human Genome Project creates new knowledge in genes that will provide more in depth information on the complexities of the genome system. While the inner workings of genes are still vastly unknown, new discoveries are being made.
Prohibition of genetic engineering will inhibit science from taking major steps forward in being able to prevent diseases and abnormalities (United States Genome, United States Proteome). With every scientific discovery that has been made, there have been risks. How many rockets failed before one finally made it into space? How many people have risked their lives through the discovery of what lies in the ocean? Many surgeries that were once considered risky are now common surgeries, such as organ transplants. With every new finding there is going to be a risk involved, but it gets less riskier with every step.
The US alone has made many major discoveries that have taken science a big step forward, such as HIV causing AIDS, the invention of electricity, and the atomic bomb. Prohibition of genetic engineering would set the US back from other countries, causing a gap in advancements and letting other countries gain a monopoly over the US. Farahany spoke about how the United Kingdom, who is very conservative about reproductive technologies, made genetic engineering legal (Farahany). The advancements made in genetic engineering wouldn’t just benefit the people in need of it.
The technology used in that could later on be applied to other sciences. Putting a ban on this would prevent many discoveries from being made, even ones not directly related to genetic engineering. People who support prohibition of genetic modification often fear that a trend of designer babies will be made. They fear a world where mothers genetically engineer their babies just because it is the norm. What if there are some qualities that are preferable in this generation but scorned in the next? What if only the rich can afford it?
That would create a higher society where the wealthier are more intelligent, better looking, and immune to all diseases and genetic risks. Robert Winston, a Professor of Science at Imperial College London, states “[Genetic engineering] will have a social power that can be used by those who have wealth and resources to make others believe that to be prenatally genetically modified makes you better” (Winston). Though that is a valid fear, many scientists do not know if the genes involving intelligence and beauty are capable of being controlled because of how complex the genome system is (Winston).
However, genetic modification with purpose of enhancing individual qualities is not the type of genetic engineering that should be allowed. Genes that provide individual characteristics involve many DNA cells making it more difficult to be able to be manipulated. Height, for example, has hundreds of genes that contribute to it. Controlling a trait like that would be virtually impossible. Traits that contribute to personality, talent, and outer “beauty” should not be controlled. Nita Farahany, a Professor of Science at Duke University, states that “Technology itself is not evil. Only the misuse and misapplication of it is” (Farahany).
Genetic engineering should be used with the purpose of preventing abnormalities and disease alone. With careful regulations by the government, that can be done (Krimsky, Farahany). In many ways, genetic modification has already been done; from prenatal screening to vitamin-rich supplements that mothers take to encourage healthy development in the embryo. While genetic modification can be considered more extreme than that, it’s really just another way to ensure health to a child. By manipulating the mitochondrial DNA it prevents diseases such as Leigh’s Syndrome, mitochondrial myopathy, and ataxia.
All of these cause severe deficits and even death. Even though genetic engineering is a newer science, it is safe. Though the safety of it can be questioned, there is no real reason to fear it. With all the resources and advancements happening today, there is relatively no danger in it. Every procedure that is done, is done under extreme supervision and only with scientists who have done countless hours of study and research. Many people with genetic diseases who wish to start a family also understand the importance of genetic engineering.
Emilee Pehrson, a person who suffers from a genetic condition known as cystic fibrosis, was asked about her trials of starting a family. She delivered her first, a baby girl, six weeks early due to complications with her health. After her birth, her daughter was tested for the disease and they found that she was a carrier with the Delta F508 mutation, but she did not have cystic fibrosis. Though her first child was born without cystic fibrosis, six years later when she wanted a second child she found that her health was too unstable to support a healthy pregnancy. She turned to the option of a surrogate pregnancy.
Her physician strongly suggested that her husband, Ben, be tested for the carrier gene so see the likelihood of their next baby inheriting the disease. If he tested positive the chances of the baby inheriting cystic fibrosis would increase significantly. To their luck, Ben tested negative to be a carrier and they were able to carry out a successful surrogate pregnancy and had a beautiful baby boy. However, had Ben been a carrier, Emilee admitted that she would’ve genetically modified her embryos to prevent her child from suffering from the same disease she suffers from (Pehrson).
Emilee, like many others with genetic diseases, understands the importance that genetic engineering is to those struggling to get families. Some might argue that manipulation of the DNA is against “Mother Nature”. They claim that the body should be left as is and let natural selection take place. However, “Mother Nature” does not care about the health of a mother or her baby. All things “natural” are not automatically good. Epidemics, natural disasters, and diseases happen due to “Mother Nature” and none of those are wanted.
Inheritance is a game of chance and no one should play that game when it comes to the health of their future generations (Silver). Other critics argue that prenatal embryo diagnosis can be done to find if the embryo has any abnormalities or diseases. If the embryo does have a disorder, it could then be substituted with a healthy embryo. They find that alternative safer than messing with the genome. Professor Winston states, “To screen embryos which have a clear disease, by the techniques which are now being developed, is certainly possible and much safer than meddling with the genome” (Winston).
Every embryo is different, therefore the likelihood that the next embryo would not have the same abnormalities is higher (Krimsky, Winston). Although substituting out the embryo with an abnormality is an option, many disorders are genetic and will most likely be passed down to the child. The mother could have child after child and each one could end up with the same disease. The only way for this mother with a genetic disease to have a healthy biological child is through genetic engineering. Prenatal embryo diagnosis can only help with disorders that don’t have a high rate of being passed down through the generations.
Genetic engineering for purpose of preventing abnormalities and diseases should not be prohibited. With careful government regulations it can be done safely and successfully. There are always risks that go with it, but the Human Genome Project providers further advancements with every study made, making it a less complex science and more available. There are 12 million people in the US who have a genetic abnormality. All those people could possibly have the option to prevent their future generations from inheriting that disease, such as people like Sharon Bernardi.
Sharon was heartbroken after experiencing the death of all seven of her children and posted a plea about genetic engineering in an interview about her life with Leigh’s syndrome. “It’s not about being selfish. It’s not about wanting designer babies. It’s not about doing injustice to people with disabilities. It’s about trying to create a healthy baby. It’s about trying to give a child a future,” Sharon claims (qtd. in Banjeri). Genetic engineering is simply another way to ensure a healthy child and prohibiting it will only hold back science and human improvement.
