By: Paco Abiad, B.A. Global Public Health student at University of Virginia
I could feel it again – my mother’s gaze examining me as we sat at the coffee table. I had just updated her on my current medical status: my ongoing battle against the deadly duo of severe allergies and ever present eczema. I often joke of my unfortunate circumstances, but the one person who will never take my health lightly is my mom. She finally broke the awkward silence between us: “You know I’m so hard on you about your health because I feel guilty, right? I see you suffering and I feel responsible because I gave you bad genes.”
I wondered what my mom meant by bad genes. With roughly 20,000 genes in the human genome, some could potentially be considered good or bad. I recalled grumbling to myself once about how I would never want my own kids to inherit my health problems, wondering if there was some way to block those unfortunate complications from being passed on to my children. Thinking about it in this context, I started to wonder if all of my problems, from my allergies, to my eczema, and even my extreme tendency to get injured all the time boiled down to one thing: bad genes.
The ongoing conversation surrounding good and bad genes is better known as eugenics, one of the biggest and most controversial topics in bioethics. Quite literally, the term eugenics, according to the man who first used it, Sir Francis Galton, meant “well-born,” based on the idea that good genes could help advance mankind (White). Back in the late 1800’s though, the most advanced type of genetic technology available to society was the Gregor Mendel pea plant inheritance experiment; genetic technology had a long way to go before it could be applied towards benefitting civilization.
British author Aldous Huxley uniquely painted a picture of a dystopian society where genetic technology had been perfected in his novel Brave New World. The genetic technology described is complex and disturbingly efficient. In this world, there are startling “advancements” in the process of reproducing humans. Instead of baby fetuses developing in the womb of the mother, humans are artificially made in baby hatcheries. Here, everything from social caste to physical characteristics and even morals are predetermined and conditioned into the next batch of babies. Within these hatcheries, eggs are fertilized, and then undergo different treatment based on their classification – Alpha, Beta, Delta, Gamma, or Epsilon. Specifically, Deltas, Gammas, and Epsilons go through one of most groundbreaking technological processes of this world: the Bokanovsky Process, where eggs are shocked into proliferating into multiple copies. Normally, one fertilized egg becomes one embryo and thus one adult, but “[a] bokanovskified egg will bud, will proliferate, will divide… Making ninety-six human beings grow where only one grew before. Progress” (Huxley, p. 2). Alphas and Betas are never forced through the Bokanovsky Process to protect the more important embryos from being harmed, but for the lower three classes, this is more than a worthwhile risk to take to benefit society as a whole. While it is true that using the Bokanovsky Process created a uniform workforce, the cost of such success was the removal of strong emotions, desires, and relationships. These are just a few of the primary components of the humanity that seems to have been lost in this dystopian world.
Whether he knew it or not, Huxley was correct to be wary of eugenics, even if in fictional writing. The evidence lies in the history of eugenics in America, particularly in the state of Virginia. During the early 1900’s, American society became obsessed with eugenics, so much so that at local state fairs, there would be contests to decide so-called Fitter Families between healthy white families with “good genes” (White). These families were encouraged to reproduce rapidly for the benefit of society. However, eugenics was not just about spreading “good genes” across the population but also ceasing the spread of “bad genes” through sterilization. In 1924, Virginia passed the Eugenical Sterilization Act, the first state law in the United States to legalize compulsory sterilization of those deemed “unfit” for reproduction (White). It is important to note that the Racial Integrity Act was passed during this year, which prohibited interracial marriages, another effort to control the population’s gene pool.
To test the legality of this new sterilization law, the state chose Carrie Buck, a patient of the Virginia State Colony for Epileptics and Feeble-Minded. Officials of the Virginia State Colony claimed that Carrie had inherited the traits of feeblemindedness and sexual promiscuity from her mother, Emma Buck, who was also institutionalized at the Colony. If tests showed that Carrie’s daughter, Vivian, was also of lesser intelligence, it would allegedly prove that this feeblemindedness was indeed a heritable trait, and Carrie Buck would qualify for compulsory sterilization. These events led to Buck v. Bell, a Supreme Court case that challenged the Eugenical Sterilization Act (Oyez). The Supreme Court upheld the Virginia’s sterilization law in a vote of 8 to 1, with Chief Justice Oliver Wendell Holmes, Jr. likening Carrie Buck’s compulsory sterilization to an older case, Jacobson v. Massachusetts, which required schoolchildren to be vaccinated against smallpox, both for the benefit of society (White). In an infamous statement, Chief Justice Holmes wrote, “Three generations of imbeciles are enough.” In 1927, Carrie Buck became the first woman in Virginia to be sterilized under the new law.
Several key facts were either overlooked or avoided in the crucial Buck v. Bell case. It is now known that Carrie Buck’s foster parents committed her to the institution briefly after she gave birth to an illegitimate child, a horrifying scandal back in those times. This event was even more embarrassing because Carrie’s pregnancy was the result of being raped by a relative of her foster parents (Lombardo). The main reason why Carrie was in the Virginia Colony in the first place was not for an inherited trait for feeblemindedness but because she was alienated for social deviance that she was not even responsible for. Further research shows that her daughter, Vivian Buck, was also not an imbecile, as shown in Stephen Jay Gould’s essay, Carrie Buck’s Daughter. Within his essay, Gould points out the truths that should have made a difference in the Supreme Court ruling but never did: “In those days before grade inflation, when C meant ‘good, 81-87’ (as defined on her report card) rather than barely scraping by, Vivian received A’s and B’s for deportment and C’s for all academic subjects but mathematics” (Gould, p. 338). This concrete evidence clearly contradicts the argument that Vivian was feebleminded, a label that she received when she was but seven months old, during Carrie Buck’s original trial. Gould was also quick to point out that the Buck women had nothing wrong with their genes – they simply were poor and lacked proper consistent education. None of these issues were ever brought up in court. Instead, the ruling of Buck v. Bell paved the way for other states to adopt their own sterilization policies; this 1924 Supreme Court decision would the reinforcement for an enormous spike in compulsory sterilizations across the country (White).
California and North Carolina were two other states with the most active sterilization laws in place. Despite the eugenics movement’s loss of popularity as a result of the Holocaust, in which the Nazis took ethnic and genetic cleansing to the extreme, these state policies were not repealed until the 1970’s. Over the course of six decades, more than 60,000 sterilizations were officially recorded, with California conducting one third of them (Stern). While many of these sterilizations targeted the “feebleminded” and “insane,” many of North Carolina’s sterilizations involved racism. Data from the State Library of North Carolina estimates that 7,600 people were sterilized under the order of the North Carolina Eugenics Board, a program that became increasingly more racist during the 1950’s (State Library). The Board targeted poor African American women, many of whom had merely had children out of wedlock, but who were labeled “promiscuous” for their seemingly immoral behavior. These conditions were enough justification for the Board to deem these women unfit for reproduction.
Even so, modern eugenics still exists today, with the help of novel genetic technology. As the human genome continues to be investigated and genetic mutations linked to various diseases are identified, it is becoming increasingly possible to stop the transmission of heritable diseases such as Down Syndrome, cystic fibrosis, and hemophilia (Rivard). As recently as August 2017, a study reported that scientists had successfully edited genes in human embryos to repair a common mutation that causes a common heart condition (Belluck). The novelty of this study was technique used to edit the genome of the embryo: when the gene-editing components were introduced with sperm to the egg before fertilization, more embryos had repaired mutations in every cell. This is a crucial innovation because if these repaired embryos developed into babies, they would not only be disease-free but they would also not transmit the disease to any descendants. Additionally, this study produced embryos that were all mutation-free, not just some, without unintentionally making additional mutations. If future experiments can further prove the safety of this method, this approach could potentially be applied to preventing many inheritable diseases.
. . . . .
The new age of eugenics is focused on selecting better genes rather than ceasing the production of the falsely accused bad genes. The focus has shifted towards potentially preventing conditions such as Huntington’s disease, cases of breast and ovarian cancer caused by mutations in the BRCA genes, and cystic fibrosis (Stein). A world with better babies suddenly seems much more plausible than ever before. So, the question remains, would I do this for my own child?
Initially lost for my own answer, I turned to my most valuable personal resource – my parents. First, some context about my parents: they were both born in the Philippines and immigrated to America together to raise a family with a better education and brighter future. While similar in many ways, their parenting styles contrast yet complement the other. I sat with my dad one afternoon as we discussed an NPR article about genome editing. He seemed genuinely excited about the possibilities that such technology could bring. When I asked my dad about whether he would agree to use genetic technology to improve my genes before birth, he replied, without hesitation: “If it were perfect, absolutely! If I knew that I could help you before you were even born, then I would be all in. That is part of my responsibility as a parent.” His eagerness stemmed from his primary duty as a father to help his children. For him, the answer seemed simple, but perhaps only because he assumed that the hypothetical genetic “fix” was simple and without risk, which is never the case in medicine. I hadn’t mentioned the potential side effects of unintentionally changing other genes and creating unforeseen effects. These are the assumed dangers of tampering with the human genome.
As for my mother, she was all too cognizant of such dangers. Her response to my question on eugenics was concise and, for lack of better words, motherly: “I wouldn’t touch you at all, nor would I change you. There’s no way of knowing what this process could do, the effects it could potentially have.” These words reflect a conservative approach – and also my mom’s personality in general. She is the protector of our family, the fiercest defender of her children. At times, her protectiveness results in ultra-conservative measures: she doesn’t let us answer the phone if we don’t know who it is, tracks our locations when we’re away, and is afraid of all things social media. She is the kind of person known for taking every single precaution for every single activity. But then again, that’s what mothers are for.
My parents have no background in bioethics, yet they both embody two different principles of biomedical ethics, championed by my old professor, James Childress. My father, with his acceptance and enthusiasm for genetic screening and interventional methods, represents beneficence. This principle justifies actions that are done to benefit others, by preventing or removing harm (Beauchamp). The recent successful experiment in which the genome of an embryo was edited to prevent a harmful mutation is a classic example of beneficent intervention.
In contrast, my mother, with her overarching precaution and protection, represents nonmaleficence. Simply put, nonmaleficence means to “do no harm,” which translates into the refraining of any malignant action that can cause harm to the patient (Beauchamp & Childress). In relation to the genome editing of an embryo, nonmaleficence would mean not interfering with the in vitro embryos. This is a complicated principle in clinical practice, since most medical prescriptions, techniques, and procedures come with various side effects. There is no such thing as perfect medicine, thus risks are always a factor.
The best remedy to find the middle road between the potential benefits and risks of any medical decision, especially one as critical as genetic intervention, is patient autonomy. The medical practitioner’s obligation is to lay everything on the table by providing all information to their patient, allowing the patient to make a fully informed decision on their own. Knowing the stakes at hand strengthens the patient’s ability to make the right autonomous decision for them.
I took it upon myself to follow this approach in searching for my own answer. I reflected on how my own genome, and more specifically, my poor health, has affected my life so far. Being struck with severe allergies and eczema from my days as an infant, I learned to take my health seriously at a young age, aware that I couldn’t always do what all the other kids could. As a child, I couldn’t eat most desserts; I vividly remember going to the local Ben & Jerry’s and while everyone got their own scoops of ice cream, I would ask the server, “just an ice cream cone, please.” On a more serious note, I have always struggled immensely with self-image issues due to consistent skin flare-ups, often opting to wear hoodies and pants to cover up my skin as much as possible in elementary school (turtle-neck sweaters were still acceptable in the third grade). No matter what medications I was on, I never seemed to be in control of my eczema. As a teenager, I became obsessed with something that I could control – working out. Over the years, I slowly came to gain confidence in my own body. The most important effect of my health problems, though, was my dream to become a doctor. I desired to take care of both myself and others. I wanted nothing more than the knowledge to do good and to help individuals through their own problems, which, looking retrospectively, was an early hint of beneficence. If we couldn’t change our genes, we could work together to make the best out of what we did have.
Looking back on my experiences, I came to the conclusion that my genes absolutely played a pivotal role in my upbringing. But so too did the fact that I was born into a supportive family, attended a rigorous school district, and had unique friendships with my peers, all of which contributed to the person I am today. The genes with which I was born had no effect on these very impactful parts of my life. It is important to remember that genes are not fortunes – like our genes, the environment that we grow up in can play a similarly important role in our lives. Therefore, I see no reason to interfere with the natural genome of an embryo with our currently available genetic technology.
Such progress, however, must remain in check. One of the guiding principles of biomedicine is that just because you can does not mean that you should. The ability to simply perform a task does not qualify as the sole reason to execute it; this sentiment is reflected in the words of George Daley, Dean of the Harvard Medical School, regarding the recent genome editing technology. He notes, “The question that remains is: ‘Should we?’. We need a deeper public discourse around the ethical implications of this technology” (Stein). Daley is certainly correct in voicing the need for discussion on these advancements and to allow bioethics to take center stage. Bioethics is not some supplemental topic that only applies to medical professionals or scientists, but society – it exists to analyze the complex clashes between science and humanity. It does not exist to simply tell right from wrong, good or bad. Bioethics serves as a platform for conversation about the intricate principles and morals that should guide our actions. As such, bioethics must play a crucial role as scientists continue to develop genetic technology that can change the course of humanity.
I grew up with a naïve perception of how genes affected people’s lives, especially my own. At one point, I became convinced that somewhere in my DNA were cursed genes that were to blame for my health woes. I wanted nothing more than to be rid of them forever, no matter the cost. However, genes are much more than simple on-off switches. As such, a person’s worth, including their ability to reproduce, should not be determined by just their heritable traits. The history of eugenics is riddled with elements of racism and judgement, but it is also a path with incredible potential. And while plenty of mistakes have been made in the past, there is a viable future for a healthy and moral application to genetic technology that will hopefully one day cure serious heritable health conditions.
Paco Abiad is a third year undergraduate student at the University of Virginia. He is a per-medicine student studying global public health and bioethics. Alongside Awaken, Paco is a published author for Grounds – The Virginia Journal of Bioethics. Outside of academics, Paco serves on UVA’s Class Council and also as a Sports Medicine Undergraduate Assistant.
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