Guanine, Thymine, Adenine, and Cytosine; no matter what order they appear in, these are the elements of change in the human body that make every one of us unique, yet similar in so many ways. As humans, we have always been interested in genetics. Merriam-Webster defines genetics as the scientific study of how genes control the characteristics of plants and animals. That is precisely what we have been trying to do for the last hundred years or so.
Having control of our genes was thought to be a way to make our society prevail against any unwanted characteristics. Around 1920, this idea became popularized in the form of eugenics. The eugenics movement resulted in the deaths and sterilizations of thousands of people. Today, the scientific community has started to experiment with genetics again through gene therapy. The eugenics movement has positively influenced gene therapy. The mistakes made during the movement have taught scientists to be more careful when dealing with something so delicate as genetics.
Francis Galton was the first person to call his idea eugenics. His idea of eugenics did not start as severely as it ended. It was originally supposed to improve humanity through childbirth. Of the two types of genetics, positive and negative, Galtonian eugenics was labeled positive. Unlike negative eugenics, whose goal is to eliminate people with unwanted =characteristics, positive simply encouraged healthier people to reproduce as much as they could.
Positive eugenics was meant to increase the population of healthy people (those with likable characteristics). Encouraging healthy people to have more children was not an issue. The issue was what constituted healthy vs. unhealthy(unhealthy was usually called degenerate). Those considered degenerate were sometimes what we would nowadays consider normal. Simple things such as masturbation, sexual promiscuity, mental illness, epilepsy, crime, and “idiocy” would instantly label a person degenerate.
How would society handle these degenerate people so that the majority of the population would be ‘normal’? The answer was either to kill them or take away their ability to have more degenerate babies. The Model Law, created by Harry Laughlin, was published in 1914 and allowed eugenical sterilization. Ten years later, approximately three thousand people were sterilized, legally, and without their consent, due to the Model Law. Those who could be sterilized included anyone in a public institution and those who were deaf, deformed, blind, dependent on others, orphans, homeless, tramps, and the feebleminded. It was thought that these unwanted traits were passed on genetically. So, if someone was deaf or deformed, it was thought that his or her children would be as well.
Carrie Buck took her case up to the United States Supreme Court. The case of Buck v. Bell took place in 1927. Carrie was the first person chosen for sterilization. She was a seventeen-year-old girl whose mother was an asylum resident (for feeblemindedness and epilepsy). Carrie was raped and impregnated by one of her foster parents’ family members. Carrie’s daughter was labeled ‘abnormal’ and ‘below average,’ despite being on the honor roll in her elementary school.
No matter how hard the case was fought, Carrie lost and was ultimately sterilized. This was just one example of the harsh methods used during the eugenics movement. People had virtually no say in what happened to them or their bodies. Thousands were both forced into mental asylums and sterilized against their will; some were even euthanized. Although lethal gas chambers were suggested, the euthanizations would usually take place in individual mental institutions done by doctors, with no consequences.
The severe methods used during eugenics started before the Holocaust and continued during the start of it. A few American companies like TheRockefeller Foundation gave funds to the German eugenics program and even the program Josef Mengele was apart of before Auschwitz. American money helped fund the devastation that was the Holocaust. Similar to the German ideal for what was ‘superior’, American eugenicists sought out people with blond hair, blue eyes, and pale skin. Sterilizing anyone who was not of this aesthetic would eventually cause the population to only be filled with those who had likable characteristics, or at least that was the goal. Purposefully or not, American ideals for ethnic cleansing had a role in paving the way, at least partially, for the Holocaust.
In 1942, eugenics was still being practiced, allowing thirteen states to create laws that permitted the sterilization of any criminal. Involuntary sterilizations continued in the 1970s by thirty-three states. At the end of the eugenics movement, more than sixty thousand Americans were forcibly but legally sterilized.
Gene therapy, or what some would call ‘modern-day eugenics,’ is quite different from eugenics. There are two huge differences between eugenics and gene therapy: consent and goal. Eugenics was a hostile attempt at ‘purifying’ society through severe and forced methods. Nobody was given a choice for what was done to their body. Gene therapy is used to try and cure diseases, disabilities, and disorders that are legitimately harming people, and gene therapy is never used forcibly. All the trials for gene therapy studies are on a volunteer basis.
There are only two known ways to carry out gene therapy. The first is through insertion. Normal genes are put in place of somatic and/or germ cells. Somatic cells (46 chromosomes) are body cells, which make up the bones, organs, connective tissue, and blood of the human body. Germ cells (23 chromosomes) are in charge of producing gametes, otherwise known as reproductive cells (sperm and eggs). Normal cells that occur naturally in the body are duplicated, then inserted into the patient’s cells.
The normal cells used can come from either an animal, human donor, or are created artificially. The second type of gene therapy is gene surgery. Gene surgery is more complex, and not as much information has been collected in comparison to inserting gene therapy. In gene surgery, certain genes can be deactivated, or genes can be inserted into the gametes to prevent certain disorders. Gene surgery is the more productive way to prevent disease, while gene therapy focuses its attention on treating diseases already present.
Pre-implantation genetic diagnosis (PGD), which is a form of gene surgery, is something that is becoming more popular with new parents. It can only be done if the parents are doing an in vitro fertilization, which is when an egg and sperm are combined in a lab, then placed into the uterus. When PGD is done, the embryos are examined before uterine transfer to determine which embryos have genetic abnormalities and which are healthy.
Parents have the right to choose to input the healthiest embryo into the mother’s uterus. For parents having a natural birth, there is an option called amniocentesis. It is when a sample of the embryonic fluid is taken for testing. Doctors use the embryonic fluid to determine if the baby has a genetic disorder or some other disease. This is only done in the first trimester though because if the baby has a disease, it would still be early enough to perform an abortion if the parents choose to do so.
In 1999, Jesse Gelsinger, an eighteen-year-old at the University of Pennsylvania, volunteered for a trial there that was researching a metabolic disorder, called ornithine transcarbamoylase deficiency (OTC). OTC impedes ammonia elimination, which usually causes brain damage, comas and death, soon after birth. Most people with OTC hardly live to see the age of five, but since Gelsinger only had a partial OTC deficiency, he managed to keep it on track with medication.
When he first became apart of the trial, he was given an injection that ended up killing him. The injection was supposed to be a corrective OTC gene. It was encased in a cold virus, which was used as a vector, and injected into his hepatic artery. Four days later, he died from an immune reaction to the virus, which caused multiple organ failure. The issue with his death is that he was not told valuable information about the injection. Other patients, who were humans, had severe side effects from it.
Three monkeys who had been given the injection had died from it; it caused liver inflammation and a severe blood clot issue. Although, out of all four thousand of the trial patients who were given this injection, Gelsinger was the only one who died specifically because of it. Had he been given this information, he may have chosen to withdraw from the trial. This is why his case was brought up in law. Ultimately it resulted in more regulation.
The US Food and Drug Administration (FDA) suspended the trial, stopped all other human gene trials at the University, and investigated almost seventy other gene therapy trials going on around the country. With the help of the National Institutes of Health (NIH), the FDA launched two programs aimed at keeping patients of gene therapy trials both safe and completely informed.
There was a more successful gene therapy trial that happened in 1990. Ashanti DeSilva was a four year old with Severe Combined Immune Deficiency Syndrome (SCIDS) who became the first person who was successfully treated through gene therapy. Doctors in her clinical trial replaced her somatic cells with proper genes that were unaffected by the disorder. She has stayed in good health, even years after her treatment. Although hers was a happy, healthy ending, not all patients who volunteer for these gene therapy trials end up healthy.
Ethical, social, and scientific issues were abundant regarding eugenics. Regarding ethics, the main issue is consent. As stated earlier, some laws allowed anyone labeled a degenerate to be sterilized. Sterilization is not a bad concept if a person chooses to have it done. When a person is not given a choice, they are damaged psychologically and physically. Taking away a person’s ability to bear children, is not only devastating psychologically, but physically.
Not having that ability could ostracize a woman from other ‘normal’ women who have children. Whether or not someone had decided to have children yet or not, everyone deserves that choice. Without children to carry on somebody’s genome, the gene pool was limited. In that sense, eugenics was working; unwanted characteristics were getting weeded out of the gene pool. Physically, these procedures were not easy. In women, sterilization consists of tubal litigation, which means that a doctor fills your abdomen with gas, and then cut into the reproductive organs and either seal, remove sections of or put clips in to block the fallopian tubes.
In males, sterilization, also known as a vasectomy, is less complex. The tube that transports sperm from testes to the semen (vas deferens) is blocked and no more sperm can pass through. While less painful in males, the same psychological issues arise. On the subject of these procedures, not all of them were successful. If something went wrong in the operating room, a lot of times the patient was euthanized. None of the doctors or officials involved with these practices were ever charged. There were private hospitals that supported euthanasia, which was illegal, but nothing ever happened to them. The government did not look for what they knew was there.
Socially eugenics is also corrupt. These forced procedures and labeling of people were seen as normal and even good. Society was taught that if someone is different than ‘normal’ people, they should not be allowed to have children who might not be ‘normal’. Being told that because you were raped and impregnated at age seventeen means you are sexually promiscuous and your child is below average because of it can only be damaging.
Society back during the early twentieth century was extremely conservative and had the power to get rid of people they did not like. Our society today shows that people who are sexually promiscuous, criminals, epileptic, deaf, blind, etc. can have fulfilling lives with above-average children. Another huge societal issue is our role in influencing other countries’ eugenics programs. American eugenicists published papers that strongly influenced how Germans idealized eugenics.
The Rockefeller Foundation, an American company, not only helped establish the German eugenics program, but also funded a program, Josef Mengele, right before he went to Auschwitz. The flaw with the funding is that the companies’ executives did not even know about Josef Mengele. They had stopped all eugenic studies involving Nazi Europe once the war started. While it cannot be said that American eugenicists technically did anything to cause the Holocaust and war that went on, it can be said that they held an influential role.
As for the scientific side of eugenics, the sterilization procedures were most likely done correctly, but there is one flaw in their main idea: most of the defective characteristics that they hated so much, were not genetic, therefore could not be stopped simply by sterilization. Deafness, blindness, epilepsy, and mental illness are often genetic, but all the others: sexual promiscuity, masturbation, criminality, homelessness, being an orphan, inebriation, etc. are purely environmental.
Gene therapy is thought to be much more advanced and has fewer issues than eugenics. This is true, but there are still issues that need to be addressed. As humans, we have never been able to choose to have a healthy baby versus an unhealthy one.
We have never had a way to tell if a baby would be sick until it was born. Gene therapy gave us this ability, but with it comes an ethical concern. Is it morally acceptable to choose one embryo over the other? There is not and probably will never be a proper answer to this. Some people feel that this type of choice is ‘playing God’. John Harris asks the question, “Is it morally wrong to wish and hope for a fine baby boy or girl? Is it wrong to wish and hope that one’s child will not be born disabled?” The obvious answer would be no, it is not morally wrong to wish for a healthy baby, but now that we can choose the healthiest baby, should we? Society would improve if more babies were born healthier, but that does not necessarily make it right or wrong.
Depending on the disability though, some parents might still choose to have an unhealthy baby, if it is a manageable disability. Whether a mother is having a baby in vitro or naturally, the argument may not be the same. For in vitro fertilization, a pre-implantation genetic diagnosis can be used to choose an embryo humanely before it starts to develop. Granted the ones not chosen do get thrown away a lot of the time, they have not yet developed even into a fetus; therefore it would seem to be morally acceptable. When it comes to natural births, it is a bit more complicated. A woman is already impregnated and the embryo has already developed into a fetus by the time it is tested for a disorder.
Once tested the mother can choose to abort it or keep it. The age-old argument of abortion is not one that needs to be argued in this paper, however it is a significant point for amniocentesis. By the end of the first trimester, a fetus usually develops recognizable features like limbs and ahead and is roughly three inches from top to bottom. Yes, three inches is small, but is it small enough to count as a person? That is an opinion that everyone is bound to have disagreements on. Morally, it may be less acceptable to abort the fetus, due to amniocentesis since it has already started development. But that choice, again, is up to the individual.
In general, it can be said that preferring a healthier baby is morally okay. Choosing to act on that preference is morally okay as well. It is nobody’s choice but the woman carrying the child and if she sees it fit to choose one embryo over the other, or abort a fetus she knows will have difficulties in life, she is free to do so. That is the essential difference between gene therapy and eugenics right there. Having the right to your own body.
It is probably a good thing that these advancements were not made during the eugenic movement because women definitely would not have had any control over their bodies or baby. For in vitro fertilization, the healthier baby would have had to be chosen over the less healthy ones. For normal pregnancies, the fetus would be terminated no matter what kind of disease or disorder it was found to have.
Gene therapy is all about helping cure and treats those who want to be cured and treated. Nobody forces them to participate in a gene therapy trial, and in most cases, all of the risks and information is given to those considering participation. Granted there are always exceptions of rule-breakers, who do not disclose all of the information like with Jesse Gelsinger. This may have been how eugenicists wanted to start their movement, but it is surely not where it ended up.
Perhaps they believed that what they were doing was morally right and necessary, even though it was not. Perhaps to them, eugenics was just as productive and respectful as gene therapy. Looking back at history we know that it was certainly not. How do we keep from repeating the past though? What is to keep gene therapy from becoming another eugenics movement? A few things actually; society has to know when to draw the line, patients must always be given choices and give consent, all information needs to be given to the patient before he or she can participate in any study and regulations must stay in place.
In regards to knowing where to draw the line, which simply means that gene therapy is kept to help individuals overcome legitimate diseases and disabilities. Eugenics crossed the line by trying to overcome ‘unpleasant’ qualities. If it does not interfere with the quality of a person’s life or the life of others around them, it should not count as a disability and therefore does not need to be apart of gene therapy. Those things can be apart of other trials, perhaps, but do not need to be apart of gene therapies.
When a person volunteers for a human gene trial, they go in with the hope that they can be treated, or at least their illness will help treat others. If they only know the surface information, they will not have any doubts and will proceed with the trial. However, if they are given all of the information and risks that go along with it, there is always a chance that they might say no. Even though this is a risk, it is their right as a patient to have all the information.
Perhaps the one thing that would throw our society back one hundred years is the consent issue. Without it, gene therapy trials would be just like the eugenics movement except actually dealing with diseases. Realizing how thin that line is, makes it even more important that it is not crossed. Thousands of lives were devastated and thousands more were not allowed to exist because these sterilizations done did not consider consent to be important.
As soon as a trial breaks any of these rules or any other violation of any kind, the FDA starts an investigation and suspends the trial. If this is kept up, it will not be difficult to keep gene therapy a ‘pure’ science. Doctors and scientists who individually violate these rules are held accountable, unlike during the eugenics days, which is another factor that keeps these trials going on the right track. Nobody took responsibility during the eugenics movement, even though thousands of people were affected. Doctors claimed they were doing what was best, even if it was illegal. Whether it was legal or illegal did not matter though, because charges were never brought up. Nowadays, everyone is held accountable for his or her actions, no matter how small.
What happened during the eugenics movement was a catastrophe, but we have learned many things from it. As a scientific community, we have learned so much more about genetics and what traits a person can pass down from generation to generation. Scientists now know how to not only delete genes from a person’s DNA but also replace them with healthy gene cells. As a society, we have learned what lines not to cross and which are okay to cross.
We have learned that no action can be held unaccountable. We have learned that everyone has a choice and that if they choose not to participate in something or to do another thing, such as choose an embryo to give life to, that person’s decision must be respected. A lot of the history on eugenics is hidden, from embarrassment and shame most likely, but history is there to teach society how to learn from their mistakes, and how to advance together.