A British crowd at an event/

Ableism and Modern Eugenics: A Result of CRISPR and Gene Editing

Gattaca, a film that debuted in 1997, explores genetic manipulation in a dystopian society. The movie was years ahead of its time. Technologies that enable gene editing, such as Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR), now exist. If parents are aware of any congenital diseases their unborn child has, then they have the option of using CRISPR to edit the fetal genome. Especially if the fetus has a fatal inborn disorder, CRISPR guarantees a life with fewer complications. But, what are the limits to the application of these technologies? CRISPR can bring about a modern age of eugenics if not used sparingly. 

Historical Instances of Eugenics for Gene Editing

The literal translation of the term “eugenics” is “good creation.” Merriam-Webster regards “eugenics” as a practice of selective breeding for more favorable characteristics or to improve the population’s gene pool.  

The most notorious instance of eugenics probably has to do with Hitler’s dictatorship between 1933 and 1945. His enforcement of eugenics ultimately led to the genocide of around 11 million Jews during the Holocaust. The Nazis based their eugenics policies on aesthetics and racism. Because the Nazi Party believed in some superiority of the Aryan race, they wanted to eliminate those beneath the Aryans in their concept of racial hierarchy. In addition, the Nazis targeted institutionalized individuals with disabilities. It was these ideologies that the United States fought against during World War II. Yet, instances of eugenics took root in America. 

This image shows the number of murders during the holocaust. The highest number of murders occurred between June and December of 1942. Yet, the actual holocaust kill rate was falsified by many publications.
The graph shows the number of murders per month over three years during the Holocaust. These murders of those considered racially inferior and disabled were a method of gene editing since they aimed to change the gene pool of the population. Image Source: advances.sciencemag.org

Marriage Laws

Unlike Nazi eugenics, American legislatures solely based eugenic policies off of ableism. Connecticut was the first state that adopted a law that promoted the practice. In 1896, Connecticut adopted legislation that barred the marriage of those with epilepsy, imbeciles, and feeble-minded. Unfortunately, similar legislation made its way to Kansas, New Jersey, Ohio, Michigan, and Indiana. Not only did this law prevent individuals from getting married, but it also killed the American Dream. More contemporarily, preventing someone from an ailment from pursuing a social norm is baseless. Marriage laws aimed to prevent these individuals from reproducing children with the same disabilities and illnesses. Connecticut, among other states, later adopted sterilization laws. 

Sterilization Laws

Sterilization laws were a step further in limiting the rights of Americans. In North Carolina, for example, the North Carolina Eugenics Board often met to determine the fate of patients. If the board concluded that a patient was feeble-minded, aggressive, promiscuous, or even unfit for parenting, they would force sterilization. Over 60,000 individuals were subject to sterilization in America based on eugenic ideologies. 

This is a pamphlet that describes eugenics in America. The pamphlet mentions that "mental defectives" should not have children, and that selective sterilization "protects" children.
The pamphlet above was utilized by the North Carolina Eugenics Board. The pamphlet supports the fact that children do not deserve “subnormal parents” who may have a disorder either mentally or physically. This subliminally supports the practice of eugenics, without directly stating it. Image source: www.ncpedia.org

Sterilization laws typically target minority groups in America. Historically, minorities were not in the same socioeconomic classes as well-off white individuals and families. Therefore, this gives eugenic advocates a reason to oppose minorities reproducing. If a minority has children, the child lives in the same socioeconomic status as the parent. In a sense, eugenics aimed to limit the lower class population in America. Also, eugenics advocates wrongfully predicted no social mobility, giving board members and some doctors a reason to deny an individual’s sterility. 

Structural Barriers

Minorities are also more unlikely to seek healthcare for various reasons. These reasons include structural barriers in the healthcare system, such as limited physicians. They may also live far from a hospital or have cultural values opposing primary care. As a result, they often have more visible health issues since they have gone untreated. Ideas of heredity swayed eugenics advocates. They believed illnesses prevail through generations without understanding genetic inheritance. Ableist idealists condemn ill or disabled children instead of working for improvements within the healthcare system. 

How Were White Women Affected by Eugenic Laws?

Eugenists considered white upper and middle-class women as more fit for family life. If anything, eugenicists encouraged white women to have children. Consequently, physicians did not administer contraceptives to them. After the child was born, they were still subject to eugenics. Towns held Better Baby Contests throughout America. In these contests, infant children were subject to measurement and judgment based on Eurocentric features.

This image is a flyer for a better baby contest, which was a eugenic practice. The image reads: Better Baby Contest Indiana State Fair August 31st to September 7th.
The flyer pictured above is for a Better Baby Contest. These contests promoted eugenics in America by comparing children to a standard usually exhibited by white babies born into a good socioeconomic status. Image source: dp.la

Effects of Involuntary Sterilization

Those forced into permanent sterilization are still sterile today. In fact, by 1976, doctors had surgically sterilized 30% of all women in the United States between the ages of 15 and 44. Scientists found a correlation between coerced and forced sterilization and how women felt after sterilization in multiple locations. Though the study primarily took place in Namibia, scientists examined psychological symptoms, such as anxiety and depression manifesting in affected women. In addition, women in Namibia experienced some discrimination and gender-based violence. Though this is not the case in America, women were subject to patriarchal ideals concerning reproduction and abstinence. 

This image shows people of different racial backgrounds in solidarity to protest involuntary sterilization.
The image above is taken at a protest against forced sterilization. Women caught on to the agenda, and therefore took action. Image source: www.shondaland.com

The US has come a long way in giving women autonomy over their bodies and still has a long way to go. Women have more access to contraceptives than they have ever had. The Affordable Care Act, for example, requires that all private health insurance companies cover FDA-approved contraceptives, and Medicaid allows low-income women to obtain contraceptives. Outside of contraceptives, women can also access medically accurate sexuality education. Additionally, medical science and public health studies may publish evaluations concerning contraceptive use. 

Modern Eugenics for Gene Editing

One of the most pivotal developments in female autonomy was the Roe v. Wade decision in 1973. Roe v. Wade protected women’s rights in choosing abortion. Also, the landmark decision aimed to prevent governmental restrictions on abortion. Roe v. Wade seems like the light at the end of the dark tunnel of eugenics. Yet, fourteen years later, scientists discovered CRISPR. 

This image shows protesters in support of the Roe v. Wade decision with a sign that says "keep abortion legal."
This image was taken years after the Roe v. Wade decision, showing women have still been struggling with having autonomy over their own bodies, because of state government regulations. Image source: www.nbcnews.com

How does CRISPR Work?

Scientists first discovered Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) in E. coli. E. coli, among other species of bacteria, is used CRISPR as a defense mechanism against viruses. RNA produced from CRISPR targets viral DNA, and the Cas9 enzyme splices the viral DNA. As a result, the virus is disabled, and the E. coli genome remembers the virus for better immune response during succeeding infections. 

When using CRISPR to modify DNA, scientists first find a piece of short RNA or micro RNA (around 20 bases) that can bind to a target area of DNA. The RNA will bind to one strand of the DNA at a specific complementary region. The Cas9 enzyme associated with the RNA cuts the DNA at the target location. After DNA Cas9 severs the DNA, repair mechanisms will either add, delete or replace DNA with customized DNA. Scientists induce a mutation in the DNA with hopes of expressing a target gene. 

This is a schematic showing how CRISPR works. A gRNA combines with a template strand and Cas9 to cleave the template strand.
The image above shows how Cas9 operates on a template strand of DNA. Image Source: www.addgene.org

Cases of CRISPR Use

Small, circular plasmids contain almost all bacterial DNA. All the DNA in the plasmids codes for a protein or gene, with little excess DNA, unlike eukaryotic cells. To understand CRISPR, scientists first examined it in simple bacteria. After gaining more knowledge, they expanded the gene-editing technology to eukaryotes. 

CRISPR Used at Danisco

In 2005, Danisco workers were interested in a method of protecting yogurt bacteria from viruses. The dairy production company ended up employing CRISPR technology. Scientists observed the DNA of Streptococcus thermophilus, which was sometimes resistant to viral attacks. Ultimately, they found that the bacteria have some segments of DNA that match viral DNA. They concluded that Streptococcus thermophilus has an adaptive immune system, thanks to CRISPR. 

Scientists saw the correlation between spacer content from CRISPR and bacterial immunity and decided to put it to the test. After exposing one generation of bacteria to a virus, they found that the second generation had resistance. However, the subsequent generations only had immunity to viruses exposed to the parent strains. In addition, the efficacy of the Cas gene also determines the immunity of bacteria. 

This image shows purple streptococcus thermophilus scattered on a slide.
The slide above shows the Streptococcus thermophilus bacteria in purple. Image source: www.sciencedirect.com

The research group used all of the data collected to manipulate the Streptococcus genome. When the group inserted spacer content into the bacterial genome, the bacterial strain gained virus resistance. On the contrary, the deletion of spacer content led to a loss of resistance. 

CRISPR Used in Treating Chronic Infections

One clinical trial explores the use of CRISPR in the treatment of Urinary tract infections (UTI). UTIs occur when bacteria invade organs of the urinary tract, including the bladder and kidneys. Doctors treat this infection with a course of antibiotics, but antibiotic resistance threatens the success of this treatment. 

The strategy of treatment is to destroy the genome of bacteria that causes infection. To achieve this, scientists combined bacteriophages (viruses that attack bacteria) and CRISPR-Cas 3. Cas 3 shreds E. coli DNA, while the bacteriophages inject their DNA into the E. coli. The result is the production of more bacteriophages copied within the bacteria. 

The image shows the difference between how CRISPR Cas3 and Cas9 act on DNA.
The image above shows how Cas9 acts on DNA versus how Cas3 acts on DNA. Cas9 “snips” the DNA neatly, while Cas3 shreds portions of the DNA. Image source: www.fairmanstudios.com

The results of this clinical trial are promising. The first phase of testing concluded this year. Patients experienced no adverse effects, nor was their safety threatened by the treatment. 

CRISPR Used in Treating Blood Disorders

CRISPR has been used to treat sickle cell disease (SCD) by directly altering the human genome. In SCD, a mutation in genes encoding hemoglobin creates crescent-shaped red blood cells. These cells not only transfer less oxygen than normal red blood cells, but they are also susceptible to decreasing blood flow and even blocking some blood vessels.  

The treatment strategy for SCD does not aim to alter genes encoding for normal adult hemoglobin. Instead, CRISPR technology targets the gene encoding fetal hemoglobin. Fetal hemoglobin is not encoded in adults otherwise. The treatment aims for fetal hemoglobin replacing adult hemoglobin affected by SCD. 

This graph shows that as the volume of fetal hemoglobin is highest before birth and declines after birth, the volume of adult hemoglobin is lowest before birth and increases after birth.
The image above shows the volume of fetal hemoglobin versus the amount of adult hemoglobin after birth, and before the onset of SCD symptoms. CRISPR aims to increase fetal hemoglobin volume to reduce symptoms of SCD. Image Source: innovativegenomics.org

Clinical trials of this treatment have shown promising results. One patient reported normal hemoglobin levels. From bone marrow samples, patients have cells with the genetic edit allowing for the production of fetal hemoglobin. 

Ethical Concerns about Using CRISPR

CRISPR, along with other methods of DNA manipulation, faces ethical concerns. Many are against any DNA alteration. At the same time, others are wary of the technology since it could lead to other mutations. Scientists refer to unintended mutations as ‘off-target’ modifications. Off-target modifications may or may not cause severe harm to the patient in the long run. 

Scientists may use CRISPR to edit the genome of an unborn child with a severe germline mutation of congenital disorder. But, CRISPR’s abilities bring up the ethical concern of informed consent. Parents consent to the changes in embryo DNA, but what if they allow modifications that lead to off-target mutations? Like the bacteria tested at Danisco, subsequent generations will also present the same edit made to one embryo. Do parents have the consent to affect the DNA of not only their child but also future generations?

The costs of CRISPR technologies are out of reach for many families. Therefore, another ethical concern deals with equity and price. The Affordable Care Act makes contracts accessible to all women for the sake of their health. Should CRISPR be accessible for all parents to ensure their child is born without any severe health conditions? If CRISPR is only available for those who can pay, gene-editing technology is only available for the rich. In this case, designing the genome of an embryo is an eugenic practice. Editing out disorders shows that individuals without them are more favorable, further contributing to ableism in society. 

The graph shows how the cost of CRISPR for gene knock in or knock off, gene silencing and upregulating or downregulating gene expression varies from $20,000 to $50,000.
The graph above shows the costs of different procedures that involve CRISPR. CRISPR is still cheaper than TALENS, yet the price may still be out of reach for many individuals. Image source: seekingalpha.com

Ableism in Society Today

Ableism is discrimination in favor of healthy or ‘normal’ individuals. In society, ableist ideals are almost ubiquitous. For example, architecture may not include ramps that give wheelchair users access to a particular building. Lack of accommodation, such as Braille for the blind, is an example of ableism. Ableism puts those without disabilities or disorders higher in an imaginative social hierarchy. The availability of gene-editing technology does not eliminate ableism but rather is an eugenic practice that assumes that life without a disability is most appealing. 

This image shows a curb that would not accomodate someone in a wheelchair.
The street above has a curb that looks damaged. Curbs resembling this one are not exactly accessible to many people with disabilities. Those operating a walker, crutches, or wheelchair may find it difficult if they need to cross the street. Disabled people unable to use this curb are not limited to those who need assistance with walking. Image source: gothamist.com

Ableism, as a Result of Gene Editing and CRISPR

Author and physician Siddhartha Mukherjee penned The Gene: An Intimate HistoryKen Burns later adapted the book into a documentary. The documentary follows research and the experience of the disabled. One woman featured in the documentary was Audrey Winkelsas. She is a scientist who studies Spinal Muscular Atrophy (SMA), a disease that she has. Her condition has inflicted her with mobility issues but has not gotten in the way of her research. The field producer of the film, Lily Garrison, saw her passion in her work. But, she also realized that Winkelsas did not allow them to follow her story to gain recognition for her research. Instead, Winkelsas saw the documentary as an opportunity for the world to learn more about Spinal Muscular Atrophy.

Woman with a child who has SMA, and might be in need of CRISPR treatment
The child in the wheelchair has SMA, like Audrey Winkelsas. The disease destroys motor neurons, limiting the functions of the individual. Image source: www.everydayhealth.com

Winkelsas used her passion for research that would benefit those with Spinal Muscular Atrophy, but not necessarily herself. She has admitted that SMA fuels her ardor in her studies. Another segment of the documentary focuses on a family with dwarfism. The mother is aware of the risks of her children also having dwarfism. But, she claims that she would not alter her child’s DNA if she were able to.

Both Winkelsas and the young mother want to raise awareness about their health situations. The young mother especially feels that raising awareness cannot happen if scientists use CRISPR to eradicate a particular disorder. This erasure further contributes to ableism in society and supports the idea of modern eugenics. CRISPR use supports the notion that society favors ‘normal’ individuals.

Culture in Relation to Anthropology

The idea of norms is fundamental in the study of anthropology. Around 15% of the world’s population experiences some degree of disability. Therefore, not being disabled is the norm and a standard that 15% of the population does not meet. Eradicating their conditions does not raise awareness about the challenges that the disabled may face. In addition, some individuals may consider a disorder as part of their identity. How would you feel if you knew that people like you no longer existed?

All of these issues conform to eugenics. Adjusting the population gene pool to fit the norms of the majority violates many ethical concerns. Scientists must be wary of using CRISPR and how it may affect society. Yet, some individuals may want their conditions cured, especially if they are life-threatening disorders. The two sides to the argument surrounding CRISPR have strong points. Regardless, understanding that norms vary through different cultures and individuals can help either side understand each other. Empathy may be the key to creating laws for the use of CRISPR. That way, history does not repeat itself, nor does our reality become Gattaca. 

This image is taken from the movie, gattaca. In the scene, a man in a wheelchair watches another man lay on the floor with metal braces attached to his legs.
The image above is taken from the movie, Gattaca. This movie explores eugenics and many of the stereotypes associated with disabilities. Image source: medium.com

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