You Can Design Your Clothes, but Can You “Design” a Baby? Ethical Objections to Genetic Modification of Embryos and the Prevention of Diseases in the Unborn

Zanna Tennant, MJLST Staffer

The term “designer babies” has been thrown around quite a bit by those who find the genetic modification of babies to be morally repugnant. However, these fears are often blown out of proportion considering the benefits that such genetic testing and modification can give to babies in utero. The age-old debate of science versus religion is evident here, as scientists argue that genetic alteration can save lives while many with religious or spiritual backgrounds fear the ethical implications. How the world and the law should react to this newer science is still very much a controversial topic. Many countries have banned genetic modification of embryos altogether, while some are still unsure how to proceed. Despite these fears, genetic alteration should not be completely abandoned. It has the potential to prevent genes for diseases from passing from parent to child and save lives. It should not, however, be completely unregulated. While it is difficult to say precisely how to regulate and who should be in charge of such regulations, this is something that governments and the world as a whole must decide. This is exactly the challenge genetic testing faces today, especially from those who oppose it on religious or ethical grounds.

Women or others who may be having trouble conceiving or are concerned about possible hereditary diseases are among those likely to pursue in-vitro fertilization, a process by which a sperm and an egg are combined in a lab. This process results in an embryo. “Designer babies” are babies that come from embryos created by in-vitro fertilization (IVF) and are specifically selected because of the presence of “good” genes like intelligence, or the absence of “bad” genes, such as BRCA 1.  The genes of the embryos are then altered through the process of heritable genome altering, whereby scientists alter the DNA of the egg, sperm or any other cells involved in the process in order to achieve a desired result.For example, suppose an embryo has the gene for sickle cell anemia. Diseases often show up in DNA in the form of a genetic alteration, such as the presence of an extra chromosome or the absence of one. The embryo in this example would be taken to a lab where a scientist could alter it to get rid of the gene for sickle cell anemia. Heritable genome altering could prevent life-altering disabilities and diseases in children who otherwise may not survive.

Despite the enormous lifesaving potential, there is a large movement against genetic alteration of embryos. One of the biggest challenges genetic alteration faces is whether it is ethical to alter the genes of an unborn child. Many fear that this genetic alteration would be used to change what they consider to be superficial genes, such as hair or eye color. They think this is man’s way of “playing God” and is unnatural. Factors such as religion and spirituality heavily influence what people think about gene altering of babies. Some see the altering of embryos as going against God’s wishes.  Along with this issue, people who believe that life begins at conception are concerned with the rights of the embryos. Similar to the controversial topics of reproductive rights and abortion, there are those who think that altering the genes of an embryo violates the human rights of what they perceive to be a living child. They see the embryo as already being alive and having the same rights as any post-birth child. On the other side, there are those, including many scientists, who do not conflate the embryo with a human child and find their beliefs in line with those who support the right to choose. People are also concerned about the unknown effects of gene alteration since it is a more recent development and scientists believe that the genetic alerting of DNA might affect future generations in unknown ways. There is also concern about increasing socio-economic inequality due to the high price tag that comes with genetic alteration. In vitro fertilization on its own is expensive, but genetic alteration is upwards of $500,000. Should this technology become available to the public, only the very wealthy would be able to afford it, thereby increasing the divide between the rich and the poor.  Because of the controversy surrounding heritable genome altering, legal systems in different countries are often unsure what to do.

Some forty countries, such as China and Japan , have completely banned heritable genetic altering. In 2019, a biophysicist in China was criminally charged with illegal medical practice and sentenced to three years in prison after he edited genes of two embryos which later became baby girls. He used a new tool, CRISPR, which allows scientists to more easily edit genes and DNA. He was universally condemned, save for the scientific community. There are other countries, however, that have not banned heritable genome altering. Rather, they have placed strict regulations on how it is to be used. In the United Kingdom, they have banned all forms of genetic alteration except for the modifications of nuclear mitochondrial DNA, which are heavily regulated. Mitochondrial DNA testing focuses on diseases in the mitochondria of a cell that can be passed down from mother to child. This testing allows potential families to determine if the mitochondria in the embryo has a disease and allows them to replace the defective part of the mitochondria with a healthy part. Clinical trials for mitochondrial replacement therapy are allowed in the UK, but they are only allowed for medical purposes. Similarly, mitochondrial replacement therapy is offered on a case by case basis only to those who meet the necessary medical criteria. Even in the few countries which have not outright banned genetic alteration, there is still strict regulation and strong public criticism.

As in the rest of the world, genome editing is controversial in the United States. Although it is not technically illegal, it is regulated under the FDA and the National Health Institute. Any genetic testing must be approved by the FDA, which is no easy task. Generally, the editing of somatic cells is allowed, while the editing of germline cells is still very much up for debate. Somatic cells are those cells which have already been differentiated as blood cells or liver cells, while germline cells are those in the egg, sperm, or embryo. Alerting somatic cells is akin to altering the function of cells. Germline editing, on the other hand, is the controversial case of actually altering the genes that determine who a person is. There are clinical trials that have been approved for the use of CRISPR in somatic cell editing.  Recently, the FDA stated that the use of federal money cannot be used to research germline editing, but it can go towards funding for somatic cell editing. While the US has yet to actually ban germline editing, there is essentially a moratorium on its use as it is disfavored by many government officials. However, the US does permit the use of preimplantation genetic screening (or diagnosis), which is either heavily regulated or banned in other countries. Preimplantation genetic screening is a process used to test embryos for genetic abnormalities that could indicate a disease and help parents to find a healthy embryo to use. It is used in the course of IVF and can help parents to increase the likelihood that their child will make it to term and be healthy. PGS raises similar ethical concerns to genetic alteration due to its focus on finding the best embryo and using science to change DNA, which is why it is banned in some countries.

Despite the numerous, and admittedly (mostly) valid concerns, it would be contrary to human progress to completely rule out heritable genome testing. This process can save the lives of thousands of children yet to be born and could even erase a disease from a family’s hereditary line. Although there are certain inherent risks, the only way for the world to move forward with this achievement is to allow, within reason, clinical trials to take place so that scientists can better understand how best to alter genes. The federal government should, with regulations enacted, encourage the use of gene altering. Although states have admittedly said very little about gene editing, they, too, should support its use. Only through controlled, regulated tests can the best practices and the unknown consequences of gene editing be discovered. The focus of gene editing should be on how it can progress the medical field. People’s fear that gene editing will be used for superficial purposes is unfounded, scientists claim, as there is not a one for one ratio between a gene and, say, the trait for blue eyes. Scientists can better predict hair or eye color, but they cannot determine these traits with one hundred percent certainty, nor can they easily find and gene and determine that it is the gene for intelligence.The government could also easily limit gene editing for health reasons and medical research, thereby making this fear irrelevant. The US government, unlike other countries, has yet to really take a stand one way or the other when it comes to gene editing. It is time that the federal government get behind this scientific wave that could potentially erase diseases altogether from the human population.