Personalized babies created through genetic selection: what’s at the heart of the bioethics debate?

The creation of personalized babies has been made possible by preimplantation genetic diagnosis (PGD) technology. While this offers hope for saving families, it also raises questions about the instrumentalization of life and bioethics. There are concerns that parental greed could eventually lead to human extinction.

 

On October 29, 2000, a test-tube baby named Adam Nash was born in Colorado, USA. The embryo implanted in Mrs. Nash’s womb was found to be free of the genetic defect that causes Fanconi anemia through preimplantation genetic diagnosis and had a constitution consistent with his older sister. Molly would have an 85-90% chance of recovery if she received a blood transfusion from Adam’s umbilical cord, doubling her chances of survival, as she was only expected to live to be 8 years old. Adam’s birth seemed like a way to kill two birds with one stone: save his sister’s life and have a healthy child, but his birth sparked a bioethics debate. Adam was a baby who was genetically selected and “designed” by his parents.
The phrase “designer baby” came out of science fiction movies and weblogs and entered the Oxford English Dictionary in 2004. It is defined as “a baby created by genetic engineering and in vitro fertilization by selecting or creating a normal embryo with a particular genetic trait.” In our language, we would call them “custom babies,” literally, babies whose genetic information is artificially selected to match the parents’ wishes. Adam was the world’s first custom baby, and his success has led to the creation of many more.
The creation of custom babies has been made possible by advances in preimplantation genetic diagnosis (PGD). PGD is a technology used in conjunction with in vitro fertilization (IVF) to diagnose the presence of genetic or chromosomal disorders in early embryos created through in vitro fertilization before implantation. For the first time, this technology opens up the possibility of selecting or discarding embryos before they become pregnant based on the presence of genetic defects. Today, preimplantation diagnostics can be used to select embryos, or embryos that do not carry the gene that causes a genetic disease, and even gender if the parents are carriers of a gender-specific disease. In addition, for babies intended to be donors for a family member (usually a sibling) with a life-threatening illness, preimplantation genetic testing is used to select embryos that are a good blood or bone marrow match. After this process, a healthy fertilized egg is implanted in the uterus to create the genetic match the parents want.
According to a survey conducted by the Center for Genetics and Public Policy in the United States, 61% of 4,055 respondents supported the use of PGD technology to help a sick sibling. In the United Kingdom, Edward Lee, a Conservative MP, proposed a ban on the practice, but it was defeated by an overwhelming margin of 342 votes to 163, making it legal. Eventually, in 2008, the Human Fertilization and Embryology Authority (HFEA), the UK’s medical ethics regulator, allowed the birth of a “custom baby” to treat a terminally ill sibling. These examples show that there are many people who see the creation of a custom baby as desirable and are in favor of allowing this technology.
However, this is not necessarily a positive thing. In the sense that they are created to save families, they are the result of the instrumentalization of life. Dr. Vivienne Nathanson, head of the British Medical Association’s bioethics policy team, commented on the birth of Adam Nash: “Of course we can sympathize with the family, but we should be concerned with the second child (the baby born to save a sibling). I’m concerned that this child will be viewed as a commodity, not a person.” In short, the child is not the fruit of the parents’ love, but a tool created to heal other family members, not unlike a slave who contributes his or her body.
Born to save the lives of their families, these children live with the burden of sacrificing for their families from the moment they are born. From birth, these children are forced to contribute their bodies to their families’ expectations without choice. As donors, these babies will be labeled selfish by everyone if they refuse their family’s request. If she tries to keep her body, she will lose her family, and if she tries to keep her family, she will lose her right to her own health and body. It is very cruel to ask a child to make such a difficult decision. Also, will they feel the true meaning of their existence if they know that they were born to save the lives of others? From the moment he is born, this baby may think that the only reason he exists is to save his family. And if the family member hadn’t been terminally ill, he or she might not have existed at all. This can put a child under tremendous stress and prevent them from living a normal life. While many of us tend to focus on the patient, we can fall into the trap of ignoring the thoughts of the donor baby. But we must also respect the child’s future.
There are also some problems with the PGD technique. In order to select one or two embryos suitable for implantation, multiple ovulation is usually induced artificially, and the resulting multiple fertilized eggs are genetically diagnosed. The genetically undesirable and unselected fertilized eggs are then discarded, which can lead to a culture of disrespect for life when embryos that could become new life are discarded. In addition, PGD technology is not yet mature, so there is a potential for error when growing fertilized eggs. In this case, viable embryos would also be discarded. According to statistics published by the Reproductive Genetics Institute (Chicago), only 35 personalized babies were born from a total of 1130 embryos, which is a production efficiency of only 1.15%. This figure shows that PGD technology causes a lot of loss of life.
Another argument is that while the current use of PGD is limited to medical cases, there are concerns about the misuse and abuse of this technology in the future. In 2009, a clinic called Fertility Institutes Clinic in the United States offered prospective parents the opportunity to choose their child’s eyes, hair, and skin color under the guise of “aesthetic medicine,” but the clinic was shut down after public outcry. However, there may be some organizations that are relaunching this service in the face of widespread criticism in order to reap huge financial rewards. If personalized baby technology is commercialized, it will usher in an era where people will feel uneasy about intangible social pressures and genetically manipulate their children. Due to the low cost of applying this technology, only the wealthy will benefit from this commercialized service. While the wealthy can afford to genetically enhance their offspring through genetic engineering, low-income people with tight budgets will have no choice but to submit to the will of nature. The genetically enhanced children of the wealthy will have superior genes from the moment they are born, and as adults, they will be one step ahead of their low-income counterparts who have not received social reinforcement. This will make it harder for the poor to overtake the rich in terms of social status, and the gap between the rich and the poor will widen.
Genetic manipulation will also reduce human genetic diversity. If parents can genetically manipulate their children, they will naturally choose favorable genes for their children, and over time, we can expect existing people to have similar genes. While different parents may have different ideas of the ideal “perfect child,” there will inevitably be some genes that will be lost in the process of genetic manipulation. This narrows the gene pool, making it harder to adapt and survive in an ever-changing environment. Evolutionary theory dictates that genetic diversity must be preserved for a species to survive in the long term, and if it is lost, the species will become extinct. Creating customized babies to satisfy parental greed has the potential to eventually lead to the extinction of humans.
While genetic modification has the potential to give people the chance to have a healthy child or save a terminally ill family member, it also has the potential to violate bioethical laws and human rights. We can’t ignore the two issues of disrespect for the child and the fact that a customized baby is not a person, but a tool to save a family’s life. And, as we’ve seen, genetic manipulation can also widen the gap between rich and poor, which is a social problem. Scientific advances can bring many benefits to humans, but they can also cause serious problems if abused, so we should think carefully before allowing them, especially when it comes to babies, such as personalized medicine.