Ethics of Gene Editing for Gender Dysphoria
Ethics of Gene Editing for Gender Dysphoria
Playing God with Genetics: The Ethics of Gene Editing for Gender Dysphoria
By Helen (Ruo Han) Wu
Imagine a world where diseases could simply be cured by editing the underlying genetic mutations. Why should we stop the development of technology that can one day save your life? Along with new medical capabilities, a race toward applying the system of gene editing for humans has begun. However, once we have the capability to control our biology, how will all aspects of life change alongside it? Though gene-editing therapies have advanced to a stage where more than 20 have been approved by the FDA in the United States, all target physical illnesses, such as spinal muscular atrophy using Spinraza and CAR (T) cell therapy for acute lymphoblastic leukemia (Boston Children’s Hospital). Are the same ethical implications presented in the case of gene editing for mental conditions? In this paper, I will examine the ethical implications of genetic engineering and gene therapies as a potential method of gender-affirming or medical treatment for gender dysphoric individuals with the purpose of alleviating suffering.
Table of Contents
- Introduction to Gender
- Exploration of Gender Dysphoria
- Genetic Engineering
- The Potential Intersection
- Ethical Analysis
Genetic engineering has been a disputed topic for over 50 years; however, CRISPR/ Cas9 and other biotechnologies have made it a reality. Through its ability to modify, delete, or correct precise regions of DNA, the tool has been used to accelerate research into genetic diseases, while carrying the potential to change human genomes and create “designer babies” or enhanced humans. The ethical controversy that lies within this technology is the benefit of increasing the quality of lives of millions of people versus the unknown and potentially irreparable societal, medical, and individual consequences. Though gene therapies for physical illnesses have already been initiated, there are still potential risks associated with changing a person’s biology. For example, it may increase social inequality and discrimination, be used for medically unnecessary purposes, and change our society and our perception of personhood as a whole. Gender-affirming care on the other hand presents an ethical case that weighs the benefits of increased mental health for those who experience gender dysphoria versus the potential health risks posed by medically aligning one’s outward appearance with their gender identity. In the United States alone, 14,726 gender dysphoric minors started hormone treatment between 2017 and 2021 (Respaut, Terhune 2022), and currently, approximately 9000 surgeries were performed annually (Mani, etc. 2021). What if genetic engineering could enable the modification of a person’s DNA in ways that would reduce or eliminate feelings of gender dysphoria? Recent discoveries on the impact of genetic variants, epigenetics, hormones, and overall biological influences on gender dysphoria suggest the possibility that genetic engineering could permit new medical and technological advancements to change the lives of transgender and gender-diverse people permanently. Though such possibilities raise several ethical concerns, this paper will explore the potential intersection between mental conditions and genetic engineering and the consequences of “playing God” by engaging in such pursuits.
Introduction to Gender
Gender, though it is often associated with sex, is more complex and is described as a sense of self or state of being. It is a cultural and social concept that is used to categorize individuals based on their perceived sex and identity. Gender is shaped by a wide range of factors, such as culture, history, genetics, and society. Particularly in Western society, the gender binary is enforced through media, education, and socialization, as opposed to some cultures that perceive gender as a spectrum, see gender as fluid, or believe there is a third gender that incorporates both the masculine and the feminine. A feminist philosopher Judith Butler takes a perspective of gender performativity, and writes that gender is “a constructed identity, a performative accomplishment which the mundane social audience, including the actors themselves, come to believe and perform the mode of belief” (“Performative” 270), in her essay “Performative Acts and Gender Constitution.” The theory of gender performativity essentially states that gender is not innate to the subject, but rather, it is constructed through culture, historical circumstances, and the repeated performance of one’s gendered embodiment, such as day-to-day actions that go unnoticed and are perpetuated due to gender roles (“Performative” 520). This theory ties into social constructionism and feminist theory, however, the theory of biological essentialism or determinism challenges the idea that gender identity is not a predetermined state of self. Recent discoveries of the impact of hormones, genes, and sexual differentiation of the brain on gender identity suggest that “many genes contribute to making gender identity an inherited, complex, multifactorial polygenic trait” (Garg, etc. 2022). Essentially, there are two arguments about where gender comes from: gender essentialism versus social constructivism. The former argues that gender is decided at birth because of innate biological characteristics, while the latter argues that gender is socially constructed (Mooneyhan). These arguments are essential to understanding the role gender plays in our society, and they open up new perspectives on gender issues, such as gender dysphoria. As a result, the legitimacy and cause of gender dysphoria shift depending on the lens we use.
“It’s my view that gender is culturally formed, but it’s also a domain of agency or freedom and that it is most important to resist the violence that is imposed by ideal gender norms, especially against those who are gender different, who are nonconforming in their gender presentation.”– Judith Butler
Transgender (American Psychological Association) is a broad term that describes a person whose sex assigned at birth, usually based on the external genitalia, does not align with their gender identity; a psychological sense of their gender. In the United States, ~1.4 million individuals (0.6%) identify as transgender (Behavioral Risk Factor Surveillance System, the Youth Risk Behavior Surveillance System). However, this number may be underrepresented due to social stigma.
Gender dysphoria is a recently developed diagnostic category that marks significant distress or impairment related to incongruence between one’s experienced/ expressed gender and assigned gender (American Psychiatric Association) lasting at least 6 months, pertaining to at least two of the following (as analyzed by The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision.)
- A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics (or in young adolescents, the anticipated secondary sex characteristics)
- A strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or in young adolescents, a desire to prevent the development of the anticipated secondary sex characteristics)
- A strong desire for the primary and/or secondary sex characteristics of the other gender
- A strong desire to be of the other gender (or some alternative gender different from one’s assigned gender)
- A strong desire to be treated as the other gender (or some alternative gender different from one’s assigned gender)
- A strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s assigned gender)
The onset and intensity of the discomfort and frequency caused by gender dysphoria widely vary between individuals. It is important to note that not all transgender patients experience gender dysphoria and not all patients with gender dysphoria identify as transgender. In addition, gender dysphoria along with its primary focus and triggers may shift or manifest in different ways throughout transitioning.
Mental Disorder, Condition, or Disability?
In the past, as well as in our current society, there have been debates about the legitimacy of gender dysphoria as a mental health condition and whether it should be considered or treated as an illness. In 2013, gender dysphoria was added to The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), replacing “gender identity disorder.” The American Psychiatric Association claims this change will transition the focus of the diagnosis to the gender identity-related distress that transgender individuals experience, rather than on transgender individuals or identities themselves. “Gender identity disorder” assumes that one’s gender identity is disordered; however, having any gender identity, or having a transgender identity, is not a disorder that needs to be corrected. Though DSM-5 explicitly states that “gender nonconformity is not in itself a mental disorder,” there is still confusion regarding its position on whether gender dysphoria is a mental disorder or a condition. This distinction will impact the way in which we treat it, both in medical settings and in our society. Is gender dysphoria simply a state of discomfort experienced by some individuals, or is it a clinically significant mental health illness that needs to be taken seriously and a disorder that requires medical intervention?
In addition, the World Health Organization (WHO) removed “gender identity disorder” from the International Classification of Diseases (ICD-11) – its global manual of diagnoses in 2019 – and replaced it with “gender incongruence” featured under sexual health, rather than the mental disorders chapter. Currently, the organization recognizes gender dysphoria as a legitimate condition that requires medical intervention.
The U.S. Court of Appeals for the Fourth Circuit ruled that gender dysphoria is a disability under the Americans with Disabilities Act and the Rehabilitation Act on August 16, 2022, with its landmark decision, Williams v. Kincaid. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in public spaces. In this case, Kesha Williams, a transgender woman, sued a Virginia correctional facility after she was housed in a men’s facility and denied all care for her gender dysphoria, including the hormone treatment she had been taking 15 years prior to incarceration (United States Court of Appeals for the Fourth Circuit). In addition, Plaintiff stated she was “misgendered by prison staff, forced to wear men’s clothing, and harassed by fellow inmates” (Blackburn 2022). When Williams sued earlier in 2020, a judge dismissed her case, concluding that gender dysphoria is not a disability by the 1990 civil rights law that specifically excludes “gender identity disorders not resulting from physical impairments” (Raymond 2022). However, a U.S. Circuit Judge, James Wynn stated that “gender dysphoria” was not the same as “gender identity disorders” and focused on the distress experienced rather than on a person’s gender identity. In the end, the federal ruling stated that gender dysphoria is a disability. This may eventually be used to challenge conservative legislation that restricts access to medical care and accommodations for transgender and gender-diverse people. It may also improve transgender people’s rights through legal protections, but will the status and perception of gender dysphoria in society also change?
Would Williams still have won the case if gender dysphoria was considered a disorder? U.S. Circuit Judge Motz determined that the APA’s removal of the “gender identity disorder” diagnosis from the DSM was good enough to stretch the Americans with Disabilities Act beyond the limits of what Congress determined it ought to originally bear. She determined that the removal of “gender identity disorder” reflected a significant shift in medical understanding, and affirmed that a transgender person’s medical needs are just as deserving of treatment and protection as anyone else’s. Ultimately, it was concluded that gender dysphoria is a disability under the ADA. Now that we have considered gender dysphoria through a medical as well as legal lens, and have seen several inconsistencies in each perspective, what are the ethical controversies surrounding gender dysphoria and the ways it has been medicalized?
Medicalization of Transness and Gender Dysphoria
A prevalent topic within the LGBT+ community is whether or not transgender identities or gender dysphoria should be medicalized. Since the mid-twentieth century, medical professionals began developing diagnostic categories for “transsexualism,” now widely known as transgender. The inclusion of gender dysphoria in the DSM-5 has been criticized by some who believe gender dysphoria and transness should be depathologized. One argument is that removing gender dysphoria from the DSM-5 would help reduce stigma and discrimination toward transgender and gender-diverse individuals and promote their access to healthcare and gender-affirming medical interventions by removing the requirements of diagnosis of a mental disorder. Another contention is gender dysphoria is simply not a medical condition, and being placed in the DSM-5 is simply inaccurate. On the other hand, gender dysphoria is believed to be a legitimate medical condition that requires medical diagnosis and treatment. Normalizing the suffering that gender dysphoria causes would undermine and invalidate the experiences of transgender people, and may lead to a reduction in healthcare coverage for gender-affirming treatments.
Medical interventions, such as hormone therapy or gender-affirming surgery have also been criticized as a form of medicalization that reinforces the binary gender norms. With gender dysphoria rising in youth, such populations are being pushed into medical intervention, especially in the United States, as reported by the BMJ. A Guide to Transgender Health states from a transmedicalist perspective that “any reconciliation [between one’s gender and sex] can only be achieved by changing one’s body rather than one’s mind since brain-sex is more deeply rooted than are the bodily manifestations of sex” (Wynne, Heath 2019). However, as NHS England states, there is “scarce and inconclusive evidence to support clinical decision-making” for minors with gender dysphoria, and several European countries have reported issuing guidance to limit medical intervention and rather prioritize psychological care. The current political discourse in the U.S. brings forward two opposing perspectives. One perspective argues that banning medical transitioning is a violation of human rights. The other argues that progressives push “gender ideology” and “child abuse” and promotes the banning of medicalization for transgender and gender dysphoric individuals. In recent decades, the arguments surrounding gender dysphoria and other gender-related issues have transformed from medical ones into political debates. Moving forward, medical treatment for gender dysphoria may heavily be dictated by political power.
Transgender individuals have also been medicalized through research that prioritizes medical interventions and outcomes, and the cause of gender-related concerns, rather than the experiences of transgender individuals themselves. In the past, when being transgender was considered a disorder similar to homosexuality, research had been conducted regarding its etiology. As we continue to treat gender dysphoria as a medical condition and increase research on its biological influences, will we be pushing forward a perspective that considers gender and gender-related issues to be rooted in genetics?
Exploration of Gender Dysphoria
Causes/ influences of gender dysphoria
Currently, the etiology of gender dysphoria remains unclear with no explicit cause related to the condition. Experts believe there are a variety of biological and societal factors that a mental health condition may influence.
Biological/ genetic influences:
Hormones are chemicals in the body that regulate various bodily functions. Studies have found that exposure to certain hormones during critical periods of fetal development may play a role in the development of gender identity and dysphoria. Exposure in-utero to higher levels of androgens may be associated with an increased risk of developing gender dysphoria. In one study published by the Journal of Clinical Endocrinology and Metabolism, a “significant association” was identified between GD and “several variants in sex hormone – signaling genes responsible for under masculinization and/ or feminization” (Foreman, etc. 2018).
New research in the neurobiology of gender dysphoria shows differences in brain structure and function between gender dysphoric individuals compared to cisgender individuals. Studies have indicated that transgender individuals have brain activity patterns that are more similar to the gender they identify with rather than the gender assigned at birth (Boucher, Chinnah 2020). General brain anatomy and neuronal signaling pathways demonstrate a likely relation to gender-to-sex alignment.
DNA and genetic factors have been found to play a role in the development of gender dysphoria. For example, one study found that genetic variants in the androgen receptor gene, which is involved in the development of male sex characteristics, were associated with an increased likelihood of gender dysphoria in transgender women (Foreman, etc. 2018). Another study found that genetic variants in the estrogen receptor alpha gene were associated with an increased likelihood of gender dysphoria in transgender men (Fernández, etc. 2020). It may be likely that intersex conditions, such as androgen insensitivity syndrome or congenital adrenal hyperplasia may have atypical gonadal development that affects their genetic and phenotypic sex, which may attribute to their experienced gender dysphoria.
Epigenetics is the study of how cells control gene activity without changing the DNA sequence due to one’s behaviors, environment, social/ developmental, and hereditary genes (Centers for Disease Control and Prevention). While genetic changes alter the DNA sequence, epigenetic changes affect how one’s body reads a DNA sequence (gene expression) and are reversible. In recent years, evidence has shown that epigenetics may play a role in the etiology of psychiatric disorders such as major depressive disorder, psychosis, and addiction, as well as in the development of cells and tissues and the progression of various diseases. Cancer, neurodevelopmental disorders, and metabolic disorders have all been linked to epigenetic changes. In a study published by Frontiers in 2021, a global DNA methylation analysis was carried out with gender incongruence before gender-affirming hormone treatment in comparison to a cisgender population. The study concluded that the two populations have differences in global CpG methylation profiles and these genes are involved in functions of gene expression, central nervous system, brain development, ribonucleotide binding, RNA binding, and others (Ramirez, etc. 2021). As a result, the study suggested the implications of epigenetics in the etiology of gender incongruence. To conclude, studies reflect an epigenetic intersection between genes and one’s environment (nature vs. nurture). In the future, could research that grounds biological influences as the cause of gender dysphoria be utilized or manipulated in social and political arguments?
Societal pressures and cultural stigmatization may be another cause of gender dysphoria. In societies where the gender binary is enforced, individuals who do not fit within narrow definitions of gender may undergo discomfort with their gender identity, leading to gender dysphoria. Stigma, discrimination, and violence directed toward gender-diverse individuals may contribute to such development.
Mental illnesses may also exacerbate gender dysphoric feelings, making it more difficult for gender dysphoric individuals to cope with and understand their gender identity. Some mental health conditions may cause individuals to experience a distorted sense of self or body image which can future complicate their experience with gender dysphoria, leaving individuals feeling unbearable in their bodies.
Social media is a complex issue and a tool that can help people who experience gender dysphoria connect or find support. On the other hand, social media can perpetuate harmful stereotypes and stigmas surrounding gender. It can also create unrealistic expectations or pressures to conform to certain gender norms or appearances, as well as be used to target gender-diverse individuals. This may result in increased anxiety, depression, and other mental health concerns, especially in young adults and vulnerable populations.
Childhood experiences and abuse have also been associated with the development of gender dysphoria. Individuals who had undergone transitioning have stated sexual abuse or assault has made them want to leave the gender associated with that trauma. A study published by Frontiers suggested a relationship between attachment patterns, complex trauma, and the severity of gender dysphoria symptoms (Giovanardi, etc. 2018). Previous studies done by other researchers suggest a history of childhood abuse or neglect plays a significant role in increasing the likelihood of experiencing gender dysphoria than those that have not.
Risks of untreated gender dysphoria
If gender dysphoria is left untreated, either through psychological means or gender-affirming medical care, gender dysphoric individuals are more likely to suffer from mental health disparities, such as suicidal ideation, depression, and anxiety. As a result of the increasing stigma against transgender people, the disparity is further exasperated, and such individuals are less likely to seek and obtain professional medical care. One study surveying transgender people found that one-third of >500 transgender youth had attempted suicide (Clements-Noelle, etc.). Another study found that 26% out of a population of 55 transgender youth had attempted suicide with ~45% having seriously thought about ending their lives (Grossman). A third study revealed that approximately two-thirds (61.3%) of transgender and non-conforming (TGNC) youth reported suicidal ideation, which is >3 times the rate of their cisgender counterparts (Eisenberg, etc.). In addition, substance use disorders are commonly found in individuals with gender dysphoria with 28% having reported problems in studies (Garg, etc. 2022). The Substance Abuse and Mental Health Services Administration (SAMHSA) has also indicated that gender dysphoric teens are three times more likely to use inhalants than others their age as a coping mechanism due to experiencing discrimination, bullying, and family rejection. Gender dysphoria and substance abuse are associated two and a half times greater than other disorders, as youth are more likely to turn to drugs, alcohol, or other stimulants as coping mechanisms. Overall, transgender and nonconforming youth are at an elevated risk for harm, especially violence, sexually transmitted infections, mental illnesses, and poor psychological functioning, especially for those who are unable to access gender-affirming services.
Risks in current methods of care
Current methods of gender-affirming care include medical intervention through puberty suppression, hormone treatment, and gender-affirming surgery, as well as social transitioning. The medicalization of gender dysphoria raises some concerns about gender-affirming care and the potential safety risks that medical intervention may pose. Hormone treatment, which involves taking testosterone or estrogen to achieve secondary sex characteristics is associated with a risk of blood clots, high blood pressure, stroke, and breast cancer. Gender-affirming surgeries, such as chest or genital reconstruction may lead to infection, nerve damage, or other complications during the procedure. Some transgender and non-conforming youth experiencing gender dysphoria may resort to self-treatment by illicitly purchasing hormones such as estrogens and androgens through the internet, and/ or over the counter. Self-administration may conflict with existing health conditions, hormones may be poor-quality or toxic, doses may be incorrectly administered, and individuals may develop hepatitis C or IV through needle sharing. It is widely reported that self-treatment is a common practice within the TGNC community, and overall lack of medical monitoring through treatment provides several ethical concerns regarding safety. Psychological impacts of gender-affirming surgeries should also be taken into account, for individuals may experience anxiety, depression, or regret after transitioning. Some individuals may feel “boxed in” to their affirmed gender identities and may stop appearing at the clinic to complete their medical transitioning as a whole out of shame or guilt. A study published in May 2022 by the Journal of Clinical Endocrinology & Metabolism in the U.S. found that 25.6% of patients who started gender-affirming hormones before the age of 18 stopped getting refills for their medication within four years (Respaut 2022). In recent years, many detransitioners have come to light, and their stories counter a widely accepted belief that transitioning would help relieve them of their mental health issues. Dr. MacKinnon, a transgender man and assisted professor at York University has stated that he couldn’t “think of any other examples where you’re not allowed to speak about your own healthcare experiences if you didn’t have a good outcome.” Dr. Laura Edweards-Leeper, a clinical psychologist in Oregon who co-wrote WPATH’s new Standards of Care for adolescents and children has stated that “people are terrified to do this research,” and other researchers in transgender health care have begun to take a firmer stand for reliable evidence relating to detransitioners, and for “evidence-based medicine instead of expert opinion or just opinion at all,” as quoted from Dr. Marianne van der Loos (Amsterdam University Medical Center’s Center for Expertise on Gender Dysphoria). One worry is that research may be weaponized or potentially manipulated against transgender people trying to access healthcare. However, stronger data on the outcomes of gender-affirming care is extremely necessary for better standards of care, especially when the current standard is actively changing young people’s bodies without fully understanding the irreversible mental and physical challenges that may arise as a result. More conclusive research will also give more autonomous decision-making capacity to gender dysphoric individuals regarding their treatment. Though seemingly outlandish, could genetic engineering be a potential answer to alleviate the risks associated with gender dysphoria?
“The Endocrine Society acknowledges in its recommendations on early puberty suppresion that it is placing ‘high value on avoiding an unsatisfactory physical outcome when secondary sex characteristics have become manifest and irreversible, a higher value on psychological well-being, and a lower value on avoiding potential harm.'”– Jennifer Block
Genetic engineering or modification is a process that uses biotechnologies to alter the DNA makeup of an organism. In recent decades, CRISPR-Cas9 (clustered regularly interspaced short palindromic repeats) technology has improved the precision and efficiency of targeting DNA. In 2012, an international research team discovered how to engineer a bacterial enzyme, which allowed them to cut and modify DNA in an exact way. CRISPR essentially acts as a scalpel for genetic surgery and has then been used to study how cells work. With this technology, scientists create a genetic sequence called ‘guide RNA’ that pairs with a piece of DNA they want to change. That sequence binds to Cas9 in the cell and works to target the DNA sequence by cutting it which shuts the targeted gene off. After, the enzymes in the cell repair the altered gene. Compared to other genome editing techniques, it does not require to be paired with separate cleaving enzymes, as the CRISPR-Cas9 system is self-sufficient in cutting DNA strands (Broad Institute). Overall, CRISPR-Cas9 has revolutionized the genetic engineering field through its customization and accuracy.
The two different types of genetic engineering are somatic and germline. Somatic changes will alter the genes of a person in a way that will not impact their reproductive cells while germline edits change the genes of someone’s offspring. Though somatic editing for gender dysphoria is more probable, the potential of germline editing for any mental or physical condition presents a deeply controversial ethical case due to the adverse consequences it may cause and its influence on society and the human species.
Since CRISPR-Cas9 has been discovered and developed as a tool for gene editing, it has been used regularly to alter genes, plants, and animals. In 2018, the first genetically modified babies were born. Who can predict what comes next?
Gene therapy is a technique that is used in an effort to treat or prevent disease (Federal Drug Administration). It has the ability to restore the normal functions of a protein after a gene mutation causes it to be missing or faulty (Boston Children’s Hospital). This may be done through methods of introducing a new or modified copy of a gene, turning on or off genes to avoid disease, or replacing the disease-causing sequence of a gene with a healthy copy of that sequence. Currently, gene therapies have been approved for blood transfusion illnesses, leukemia and lymphoma, retinal disorders, and more. Though the medical treatment costs range in millions, results show high effectiveness in curing diseases and improving one’s current state of being and quality of life.
“Right now people are interested in genetic engineering to help the human race. That’s a noble cause, and that’s where we should be heading. But once we get past that – once we understand what genetic diseases we can deal with – when we start thinking about the future, there’s an opportunity to create some new life-forms.”– Jack Horner
The Potential Intersection
Very small genetic changes have the potential to dramatically affect and produce life-changing medical conditions. Complications may arise when conditions or diseases arise from several genetic factors and environmental influences. In healthcare, gene editing has the potential to correct genetic defects or cure genetic diseases (eg. cancer, cystic fibrosis, heart disease, diabetes, AIDS, Parkinson’s disease, etc.), to produce numerous medications, and make a considerable change for the next generation of medical care. In other cases, gene editing has been used for agricultural benefits (increased crop yields, reduced costs for food production, greater food quality, and food security), as well as on animals and the environment.
For gender dysphoria in particular, gene editing has the potential to target certain biological influences, such as the previously discussed hormones, genetic, and epigenetic factors. Especially due to the reversible nature of epigenetic changes, there lies a chance for gene editing to target a potential cause of gender dysphoria. Along with modern gene editing technologies such as CRISPR-Cas9, promising results in treating genetic disorders show how the field of technology could one day be applied to psychiatric genetic disorders.
Gender is a particularly challenging medical target because of the political and ethical controversies surrounding the subject. The big unknowns of where gender comes from deeply affect transgender issues and gender dysphoria, and many debates that the push towards technology is creating more problems than solving them. However, if there is a potential for a greater standard of care for gender dysphoria, and an established genetic and biological basis is found for gender dysphoria, how is this different from the current ways we use technology to modify ourselves in our society? Though one of the most imminent dangers is the ability of gene editing to enhance human capability beyond what is normal, we can never predict the future and the complex ways technology will completely alter our ways of life.
How can such technology be manipulated by those in power? Suppose a specific gene could be targeted to reduce distress and suffering caused by gender dysphoria, similar to how CRISPR has been utilized in studies to reduce anxiety and alcoholism. In that case, it may potentially lead to a greater medicalization of transness and transgender people. Or specific DNA modification may be done in hormone treatment therapies to make individuals’ physical transition process easier. Or gene editing may be performed to make people more comfortable being with their gender assigned at birth. Or if the gene causing GD is identified at birth, gene editing could eliminate it as a whole. Though deeply controversial, gene editing is still a new field and we do not know how gene editing could be controlled and exploited. How will deeper issues within society and the medical field be exasperated by new technology that can seemingly create solutions to all our problems?
Principle of beneficence
Reducing suffering and improving quality of life by using gene editing to address gender dysphoria would be beneficent. The current increasing rate of success for CRISPR-Cas9 and other biotechnologies to prevent suffering and cure disease presents a case that the effectiveness of gene therapies may be greater than the current standard of care for gender dysphoria. A genetic approach may provide a greater benefit to society than the lack of treatment by mitigating the risks that gender dysphoria poses, especially to the young, vulnerable population. Gene editing may also reduce or turn “off” gene mutations passed onto future generations, and improve the well-being of all potential individuals affected by genetic conditions.
On the other hand, is it reasonable to assume that research and development of gene therapies for gender dysphoria will create the greatest amount of good for the greatest number of people? In a profit-driven healthcare system that prioritizes research that is likely to generate more marketable treatments, “rarer” conditions generally receive fewer funds. In this case, transgender, gender-diverse, and gender dysphoric individuals are a small minority of the population, so is it reasonable to pursue such research under expensive costs that can be used to invest in other resources studies aimed at more “dire” illnesses with the final treatment costing millions of dollars? For example, spinal muscular atrophy is a genetic disorder that affects approximately 1 out of every 10,000 people. From 2016 to 2021, more than 10,000 people have been treated with the gene therapy Spinraza. With the treatment costing more than $750,000 in the first year and $375,000 annually afterward, it can allow children to live longer and to have more active lives with increased motor ability. Some children are even treated shortly after birth after a genetic diagnosis through newborn screening, which may prevent the onset of the disease for years, and potentially forever. In comparison, gender dysphoria roughly affects 1 in 10,000 people assigned male at birth (0.005% to 0.014%) and 2 to 3 in 100,000 people assigned female at birth (0.002% to 0.003%), as estimated by the DSM-5. Do physical and mental illnesses present the same case for the ethicality of gene editing and therapies, and should one be prioritized over the other?
Is there a difference between biological modifications (eg. hormone therapy, and gender alignment surgery that impacts physical and emotional/ mental aspects) versus genetic ones for gender dysphoria? If gene editing becomes a technology that can safely be used to increase the quality of life for gender dysphoric individuals, why should it not be pursued? Though hormone treatments and gene therapies can be considered an act of changing the biology of an individual, gene editing is often viewed as significantly more dangerous and unnatural. In reality, gene editing can be considered a similar treatment to gene transplants or organ transplants through the act of changing the biology of an individual to increase one’s quality of life.
Overall, there is a risk versus reward argument to be made. One on side, standards of care can be improved upon for marginalized groups, and future generations may benefit from the elimination of gender dysphoria as a whole. However, we must also weigh the low population rate for gender dysphoric individuals and the number of people who will benefit from expensive medical care. Is it truly beneficient to allocate time and resources to a condition that some, even in today’s society, still consider an illegitimate condition? Along with the fact that gender dysphoria is involved in many complex medical and legal discussions, an ethical case for gene editing may further spark controversy among political debates.
Through the lens of consequentialism, gene editing is a risk to society as a whole and creates a slippery slope between providing care and playing God. One of the unpreventable consequences is the lack of fairness that will result from inequitable access to such medical care. This leads to more dire questions: how will gene editing for gender dysphoria further exacerbate the trend of inequity of healthcare access and resources across the medical-industrial system? If gene editing starts to be used for medically unnecessary purposes, this will emphasize divisions in society between those who can afford to the most desirable traits versus the underprivileged.
“What will happen to political rights once we are able to, in effect, breed some people with saddles on their backs, and others with boots and spurs?”– Francis Fukuyama
Further, science may be used as a tool to legitimize discrimination against transgender individuals. Gender dysphoria and other conditions may be seen as medical conditions needing to be fixed, leading to transphobia and ableism. If such diseases could simply be cured by erasing genes deemed “faulty and abnormal”, it will heighten the differences among people, and gene editing could potentially reduce human diversity. Ridding society of such genetic differences would be unethical as it considers the lives of such individuals not worth living as they are, essentially losing inherent worth in life.
Gene editing for gender dysphoria may also lead to a slippery slope and to eugenics. Just because biotechnologies have the capability to erase genes, should they be allowed? Are we erasing the inherent worth in life and playing God by choosing which characteristics we desire? Though having such capabilities has the potential to do good, the consequences are just as great, or even greater. These scientific advancements raise questions that push the boundaries of our regulations. Although gene editing could stem from the intention of medical care that could allow tens of thousands of people to have a chance at life, an issue arises when considering how and if we could stop the slippery slope towards medically unnecessary procedures (eg. for cosmetic purposes) that could increase consumerism in the medical field. An inevitable consequence may result in the commodification of human life; similar to the ways society already metaphorically deems certain traits as more desired, if unnecessary medical procedures were allowed, a real price tag could be placed on these traits.
Gene editing will also impact personhood for it questions the fundamental meaning of our being. If we can genetically change ourselves, what will it mean to be human? It leads to the question of whether humanity will lose meaning in itself if we can pick and choose aspects to build ourselves with. And if such traits we choose could possibly lead us towards a more meaningful life, does it deem the act worthy or it serves as the elimination of our unique human experiences? One doctor asks “Can we evaluate physical limitations and possibilities and hope that genome editing will help us shape our bodies accordingly?” (Fox, etc. 2021).
Overall, through the lens of consequentialism, there is a slippery slope between providing care and playing God. There may be serious consequences in using science to treat a condition influenced by societal means and the medicalization of gender dysphoria. Gene editing may ultimately lead to the commodification of life and irreparable impacts on personhood.
Through the framework of deontology, the ethics of gene editing for gender dysphoria conflicts with different stakeholders. From the doctors’ and scientists’ perspectives, they have a duty to do no harm, as dictated by the Hippocratic Oath. This may mean working towards the greatest quality of life for patients, and/ or preventing and alleviating suffering for future generations and society. The most ethical solution for them may be to discourage and ban research into gene editing for gender dysphoria as a whole. On the opposite side, others may view “doing no harm” as finding improved methods of care for people suffering from mental conditions and illnesses. Another stakeholder is law and policymakers who have a duty to make sure gene editing tools are used according to strict, controlled ethical guidelines that will help ensure a safe future. Would this lead to the banning of all gene editing, both somatic and germline, and for physical and mental conditions? Further, should there be one universal bioethical guideline for all countries to follow in terms of restrictions for research? As a result, this may impact the current gene therapies that have already been approved by the FDA. Although banning gene editing may prevent the unforeseeable long-term consequences, we may simply be delaying the evolution of medical care. Instead, dedicating resources to finding effective solutions to ongoing issues using new technologies may be a better alternative.
In addition, the future generation is another stakeholder we have to consider. We carry the duty to follow the created ethical guidelines regarding gene editing research and to be responsible in our scientific pursuits. Delving into such a contentious and dangerous field leads us to wonder if we are playing God and engaging as hyper-agency through gene editing for gender issues when there are unknown societal, medical, and individual consequences.
What can we do if genetic modification and technology are inevitably the future of healthcare? The future of medicine and its relation to fast-approaching biotechnology require ethical guidelines in government and law, though many wonder what standards should be set. As presented through the ethical analysis (through the principle of beneficence, consequentialism, and deontology,) it is difficult to strictly conclude with a simple yes or no. The complications with gender dysphoria and the field of gender, along with the unprecedented type of care of gene therapies and editing make their intersection a difficult one to envision, though there is great potential in the foreseeable future. Along with its potential, however, there are many ethical implications to consider. To understand the ethics of using gene editing to alleviate suffering for gender dysphoric individuals, we need to take into consideration the potential benefits to society versus the potential harms, the duties of each stakeholder, both currently and in the future, and the consequences of engaging in irresponsible science.
In my personal opinion, I believe that people should not interfere with the laws of nature and alter genetics for medically unnecessary purposes. Further research into gender dysphoria and gene editing is crucial for an ultimate conclusion of whether an intersection should ever be considered realistically in medical practice. The dangers of altering personhood, changing our understanding of what is “natural,” and increasing inequality and discrimination towards marginalized groups lead me to consider whether dangerous science should ever be pursued and if technology would create more problems than they solve. Throughout this paper, I sought to analyze gene editing for gender dysphoria through a futuristic lens that would consider what it means to pursue beneficence as well as the slippery slope of playing with God with genetics. This leads to the ultimate question: just because we can, should we?