The Ethics of CRISPR Gene Editing

Justice and CRISPR: Diving Deeper into Issues and Inequalities Perpetuated by CRISPR

By Sofia Keri

CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, edits genes in living organisms with the potential to cure diseases. However, is the use of CRISPR modifications on somatic cells ethical through the lens of justice, especially with respect to sickle cell disease?  Similar to most clinical trials, 80% of CRISPR trial participants are white; does this lead to racial inequalities due to a lack of less accurate information of impacts on minorities? According to the National Library of Medicine, in most trials, 30% of the population are minorities, and 70% are white (Fisher and Kalbaugh). These statistics show that CRISPR trials actually have fewer minority participants than the average trial. Additionally, minorities are needed for sickle cell disease (SCD) testing so scientists can get the bigger picture of the efficacy of all races of people. Currently, there are no published statistics of the racial makeup of SCD trials, but it seems like there are fewer minorities in the trials due to a new rule put in place: In order to improve diversity, there are some SCD trials that are only accepting African American candidates. (Clinical Trials/Studies). Without minorities in trials, it might not be safe for an African American person to use CRISPR if there was not as much testing on their race. Furthermore, even if CRISPR is safe and successful for all people, it is expensive, costing up to 5 billion dollars to cure diseases such as muscular dystrophy according to the Innovative Genomics Institute. Though this astronomical number is the cost to cure only one disease, this still shows that CRISPR costs can range and be extremely expensive. (Irvine) The main focus of my paper is curing sickle cell disease in somatic cells using CRISPR and the necessary involvement of minorities in clinical trials. My main ethical question is: Is it ethical to use CRISPR to fix biological disparities on somatic cells knowing the social inequalities it can cause? To analyze the ethical implications of CRISPR testing on sickle cell, I consider the principle of justice, the value of safety, the theory of consequentialism, and two additional values, autonomy and fairness.

Table of Contents

• Introduction
• History and Background of CRISPR
• Uses of CRISPR with Sickle Cell Disease
• Other CRISPR Uses and Clinical Trials in Detail
• CRISPR Clinical Trials Efficacy and Outcomes
• Racial Disparities
• Wealth Disparities
• Ethical Analysis
• Conclusion

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This paper focuses on CRISPR’s ethical implications concerning genetic modifications, mainly edits to sickle cell disease in somatic cells. While exploring everything through the lens of justice, I consider the values of safety, fairness, the principle of justice, the theory of consequentialism, and the racial and wealth disparities that can be perpetuated by CRISPR, to explain how I believe CRISPR usage and testing on somatic cells is ethical. The question I conducted research on is: Is it ethical to use CRISPR to fix biological disparities on somatic cells knowing the social inequalities it can cause? I am mainly focusing my research on CRISPR, how it works, its history, curing diseases, and more specifically focusing on curing sickle cell disease (SCD) using CRISPR. SCD is a disease that primarily affects the minority community, so it is critical to focus SCD testing on the minority population. SCD can be cured by editing embryos, germline, and or somatic cells, each bringing up different ethical issues from each other. Through the lens of justice, and including all aspects, including the possible racial and wealth disparities perpetuated using CRISPR primarily with sickle cell disease, I believe that it is ethical to perform any genetic modification on somatic cells once CRISPR is out of clinical trials.

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In 1992, Francis Mojica, a molecular biologist from Spain, discovered the mechanism of CRISPR and gave it its name. Jennifer Doudna, Emmanuelle Charpentier, and Feng Zhang, Doudna and Zhang are biochemists and Charpentier is a researcher, invented CRISPR. As a team, they worked together to build CRISPR and make discoveries using the tool. In 2012, Doudna and Charpentier wrote the pioneering paper, “A Programmable Dual-RNA–Guided DNA Endonuclease in Adaptive Bacterial Immunity”. According to Zheng, Doudna, and Charpentier, CRISPR is intended to snip out DNA and change individuals’ genetic makeup to avoid disease. They discovered that CRISPR could edit embryos, white blood cells, eggs, sperm, and bacterias, making CRISPR possibilities almost endless with much more research. This device can change the entire human genome by snipping one microscopic strand of DNA. (Broad Institute, Rodríguez Fernández, Jinek, Chylinski, Fonfara, Hauer, Doudna, Charpentier)

DNA and How it works

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CRISPR comes from a naturally-occuring genome editing bacteria. It can change and alter Deoxyribonucleic Acid (DNA) pairs. DNA is stored in the nucleus of each cell in the human body, and there is also some in the mitochondria of the cell. DNA has a double helix structure filled with the person’s genes and makeup. Generations can pass down these detailed instructions only with small mutations and adaptations. There are four bases, which are the codes that store all of the genetic information. They pair up to create the structure of DNA. It is always Adenine (A), Thymine (T), Cytosine (C), and Guanine (G). When a base pair, a sugar, and a phosphate are together, they form a nucleotide, which makes up the double helix structure. If one strand of DNA is identified, it is simple to figure out the other strand pattern because base pairs match up. When proteins have to be created, one strand of DNA unravels, and it can serve as a template. The DNA strand is then turned into mRNA, which is the crucial molecule that gives the instructions to the cell’s protein-making part.

DNA is unique because when a cell divides, DNA can copy itself, and the next cell will be identical because the DNA is the same. CRISPR can take a strand of DNA and edit it. It can remove a pair or edit the pattern of the pairs. Changing the pairs changes the ability of that strand of DNA. Removing one pair of A-T or C-G bases can be the key to preventing the disease in that individual, but editing sperm or an egg cell is highly risky as it can result in altering the entire human genome. (Biggers)

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Sickle cell disease is a mutation of hemoglobin in the blood. When the baby is in utero, they have different hemoglobin, which is not the issue. As soon as the child takes their first breath after birth, the cells switch to adult hemoglobin, quickly becoming an issue. Patients have described the feeling of sickle as pain and burning everywhere blood flows. To survive, they need bone marrow transplants, and even then, this may not work. Scientists use CRISPR to edit their somatic cells to not switch from baby hemoglobin to adult hemoglobin. Scientists are also altering embryos to alter their hemoglobin before they are born. Sickle cell disease is a common disease found in African American people. 1 in every 365 African American babies are born with SCD, and 1 in every 13 African American babies are born with the SCD trait. Researchers believe that SCD has grown to be more common in African Americans because Malaria is common in Africa and SCD can protect against the disease. (US National Library of Medicine) These statistics show that this is not actually a rare disease. There are justice issues involved in SCD because of the commonality of SCD in African Americans, the disparity of minorities in clinical trials, and the need to cure this disease immediately. Other than bone marrow treatments which are always a risk, there is no cure, revealing the urgency of CRISPR becoming a treatment. (Mayo Clinic)

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Sickle Cell Somatic Edits Clinical Trial

CRISPR can be used to edit the somatic cells of a human to alter their hemoglobin. Here is an actual case study of a woman who was part of a SCD trial: 34-year-old Victoria Gray was the first person in a SCD trial. She was successfully cured and now can live without the pain. In an interview, it was stated that a SCD clinical trial was opened, and no one joined it yet. Victoria knew that they had never tested this cure on humans, and it was not entirely determined if it would work, but Victoria signed up without hesitation. This shows that she was willing to risk her life to get rid of this disease and how important it is to have minorities and all people in clinical trials. Even though CRISPR was successful for Victoria Gray, it is still a new technology that will require even more minority participants than it already has for it to leave the clinical trial stage. (Stein)

I believe that scientists should put the majority of CRISPR focus on SCD clinical trials because of the success it has had recently and that it primarily affects minorities, so scientists have to encourage and promote clinical trials to gain more minority participants. In fact, in March of 2021, UC San Francisco, UC Berkeley, and UCLA launched a new SCD trial using CRISPR. This shows that this cure is an actual possibility and scientists are attempting to eliminate SCD. (University of California San Francisco)

Sickle Cell Embryo Edits

CRISPR also can cure SCD while it is still an embryo, but it is not nearly as successful as curing SCD in somatic cells. CRISPR can locate the hemoglobin chains in each cell with RNA when it edits embryos. Scientists have recently discovered that the BCL11A gene determined HbF levels which controlled the type of hemoglobin switch from baby to adult. If the scientists could knock out the gene in the bone marrow while the baby is still an embryo, and BCL11A would not be produced, it would allow HbF to stay switched on, altering the hemoglobin’s ability to switch after birth. After clinical trials, this is going to be a standard procedure done in infertility clinics. However, this does bring up some ethical concerns; Jeanne O’Brien, a fertility specialist in Maryland, brought up an important point of how using gene editing on people of color can bring up the value of fairness. O’Brien said, “People with sickle-cell disease in the US “have been left behind because they are often Black and poor,” she says, but now they are sought after to participate in gene-therapy experiments. “It’s ironic this group is currently the one in demand for biotech innovation,” she says.” (Collins) It is essential to point out that scientists need information on minorities due to the commonality of SCD in their DNA. As I mentioned earlier, it is challenging to get minority participants in clinical trials, even if it is more crucial than ever to participate. (Regalado, Collins, Holmlund, Innovative Genomics Institute) 

“People with sickle-cell disease in the US “have been left behind because they are often Black and poor,” she says, but now they are sought after to participate in gene-therapy experiments. “It’s ironic this group is currently the one in demand for biotech innovation,” she says.” (Collins)

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Though I focused most of my research on CRISPR in the context of sickle cell disease trials, I still find it relevant to explain how other trials work and to show that CRISPR works similarly  in different parts of the body.

Curing diseases

CRISPR can be used in numerous ways. One way is to cure cancers, eye diseases, and prevent diseases in the future. CRISPR can cure cancers like leukemia or other blood cancers by editing white blood cells. White blood cells, also referred to as T cells, have the job of protecting the body from harmful bacterias or cells. The cell recognizes a safe cell if the cell has a PD-L1 receptor on it. This communicates to the T cells that it is a healthy cell that is welcome in the body. Cancerous cells have a way of concealing their receptors, causing the T cells to ignore their presence, allowing the cancerous cells to take control and harm the healthy cells. Using the CRISPR, scientists can edit the PD-1 gene in the T cells to not block out the cancerous cells. This process is known as the checkpoint exhibitor, and when combined with CAR-T engineering, it gives the T cells a greater chance to block off the cancerous cells. (Center for Disease Control and Prevention)

Leukemia (blood cancer)

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More specifically, to cure leukemia, a blood cancer, CRISPR allows scientists to locate and cut out the defective genes in a cell. Leukemia is when the blood-forming organs from abnormal leukocytes stop or slow down normal red blood cell production. When a patient has leukemia, they grow leukemia stem cells. In the stem cells, there is a gene called Staufen 2, responsible for the treatments’ resistance and increases the amounts of leukemia stem cells. CRISPR is being used to remove some leukemia stem cells from the body, and scientists can edit and remove the Staufen 2 gene entirely from the stem cells. The newly edited stem cells are then harvested. After the patients undergo chemo treatments to eliminate as many defective stem cells as possible, the new harvested stem cells are regularly transfused into the patient. Like all clinical trials, there is no guarantee that this will work, but it is a treatment that can cure cancers in the future with more research. (Newsroom, NCI Staff)

Eye disease

Another way CRISPR can be used to cure eye disease. CRISPR inserts a new edited gene into the person’s cells that have the incorrect gene code in them. Leber congenital amaurosis is an eye disease caused by mutations in a gene whose purpose is to code for a protein. The protein RPE65 is a part of the chemical reaction process to detect light. When the protein is mutated, it cannot see the light, causing a person to be blind. CRISPR can edit all of the genes in the eye that have the mutated genetic code. Another version of Leber congenital amaurosis is detected in children as early as one year old; this is Leber congenital amaurosis Type 10. The children rapidly lose their vision because of a change in their DNA, affecting the ability of the CEP290 gene. Losing the CEP290 gene affects the survival and functionality of photoreceptors, which are cells that sense light. 

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In clinical trials, scientists test people in the late stages of the illness and are fully blind. The scientists put the patients under anesthesia, and they use a needle, syringe, and scope to inject CRISPR enzymes and nucleic acids into the part of the eye near the photoreceptors. The scientists only inject one of the patients’ eyes to compare the eye before and after CRISPR accurately. This use of CRISPR is relatively easy compared to other purposes because the eye is the closest visible part of the body to the brain. Scientists and doctors can easily access the brain’s eye connections because it is most visible to them. Though it is improbable, cancer can occur if CRISPR enzymes attack the wrong part of the eye or the genes mutate after edits. This is a safety issue, yet the risk may be the best option for them in many cases. (Khanna)

Thalassemia

Beta Thalassemia is a blood disease that primarily affects black people. Though there are not many African Americans who participate in clinical trials, it is important for scientists to get African American participants for this specific trial. Beta Thalassemia is very similar to sickle cell disease. They have similar symptoms, and both diseases affect blood. Sickle cell disease which I already went into detail about, is caused by defective adult hemoglobin. Beta Thalassemia is caused by defective beta-globin genes, which is a piece of the hemoglobin gene. Some people carry the thalassemia gene like myself and experience no symptoms, yet my blood is still defective. However, when a person has both genes for beta-thalassemia, they experience shortness of breath, jaundice, fast heart, fatigue, facial deformities, and many other symptoms.

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When a person has this disease, it is necessary to get blood transfusions as often as weekly. There have been clinical trials with African Americans that are dealing with beta-thalassemia. These people are participating because their quality of life is not ideal, and they need a solution. Beta-thalassemia CRISPR clinical trials work similarly to the sickle cell disease clinical trial I explained earlier. One of the Beta thalassemia trials is editing the defective hemoglobin outside of the body and harvesting a significant amount of the new blood. They want to raise the blood’s hemoglobin levels so the rest of the patient’s blood will get the new hemoglobin signal, and the person will not need any more blood transfusions. It is impressive how a human body can adapt and learn from other cells to heal and get healthier. (University of Illinois at Chicago)

Embryo Edits

CRISPR can alter the way the child will look. Just by removing one pair of codons, this can make the baby’s hair blonde instead of brown. CRISPR also can edit the DNA in an embryo to prevent diseases. Because CRISPR can cut, alter, and replace strands of DNA, CRISPR can target the mutated strand in the embryo before it is developed into a human. One clinical trial that was occuring in 2017 was removing a type of heart disease from the embryo. Scientists tested CRISPR on 50 embryos that the eggs came from healthy women, and the sperm came from a man that carried the heart disease. The scientist used CRISPR when the embryo was only one cell. When CRISPR cut out the mutated DNA strand, the embryo could heal itself using healthy DNA from the egg. 72% of the embryos successfully and healthily got rid of the heart disease, which was a surprisingly successful experiment. In this experiment, they discarded the embryos after three days to never fully develop into a human. Currently, IVF treatments are used to avoid disease, but they can take many treatments for it to work, and it can still lead to side effects and issues. When CRISPR is entirely safe, this will be an alternative way to avoid disease altogether. (Eunjung Cha)

Lulu and Nana Trial

Another well-known embryo editing trial is the Lulu and Nana trial. Lulu and Nana, their pseudonyms, are two girls who were edited by He Jiankui while still embryos. Because of the possibilities of cancers, diseases, and life-threatening mutations, it is currently and was at the time illegal to edit embryos and allow the children to be born. Jiankui wanted to edit two embryos to disable the CCR5 gene that helps HIV enter healthy cells. Because Lulu and Nana’s biological father had HIV, Jiankui thought it would be a good idea to alter the gene and allow the embryos to develop into humans. Doing this is illegal because the procedure is inconsistent and dangerous. Jiankui did not disable the gene correctly, and the twins developed mosaicism. Mosaicism occurs when the edits to the gene are not uniform in all of the cells, meaning that some cells have the edit and some do not, resulting in different edits than what was intended! Jiankui also accidentally only edited half of Lulu’s CCR5 genes, and the other half are entirely normal. Due to the cells’ inconsistency, the girls have the same percentage of chance of getting HIV as everyone.

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Even though their father had HIV, they had no chance of getting it passed down. Currently, Lulu and Nana are healthy two-year-olds, but they have a significantly higher chance of getting cancer or heart disease than if they had not been edited. In the future, they may even pass down the mutations, which can cause severe mutations. Though it may be possible to edit the human genome through an embryo, it is not currently safe and can cause severe damage if it does not go as planned. I spoke about embryo edits to show that CRISPR can do many things, but I am focusing my ethical analysis on somatic edits. (Georgiou)

Crispr and Covid-19

Another way CRISPR can be used is to detect coronaviruses. COVID-19 has been affecting the world for over a year now. Scientists are making and distributing vaccines every day. Millions of people are getting tested for COVID-19 daily, but depending on location, it can be tough to get a test, and the most accurate tests take days to get results. CRISPR is a tool that was used to try to detect COVID-19 in the human body. Seeing COVID-19 in the body using CRISPR is a possibility of effectively taking over a PCR or saliva test. 

PCR tests take time to come back due to converting the virus’s RNA to DNA before detecting the disease. PCR tests require lab equipment and time because the person’s DNA also has to be amplified and copied multiple times to get more accurate results. CRISPR can skip the RNA to DNA step and search directly for the virus’s RNA instead of DNA. Protein Cas13 and a molecule, when it is cut, creates a glow. When there is a greater presence of the virus’ genome, more cutting occurs, making the virus glow brighter. This glow can be picked up by a smartphone camera when used in the dark. Depending on how severe the virus is for the patient, the smartphone can pick up the glow faster and detect it in as little as 5-30 minutes. This invention is still in the process of making, but it will be a game-changer once it works. It will also be able to detect diseases such as other coronaviruses and HIV. This is a relatively safe trial as it does not involve directly harming a person. It is detecting a disease quickly, which is not dangerous. Having an at-home COVID-19 detecting test in the future will benefit our world and slow the spread because more people will know if they have COVID-19 or not. (Gladstone Institutes)

As written above, CRISPR has many uses such as curing cancers, more specifically leukemia, curing diseases like eye disease and beta-thalassemia, eliminating diseases in embryos before the baby is born, and detecting Covid at home using CRISPR. But, how effective are these cures, and are there any side effects?

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CRISPR is a tool that can cure diseases and change DNA, but it is not consistent. Depending on the illness that CRISPR is editing, the cells can either stay edited and the procedure is a success, or something can go wrong. The success of embryo edits completely working according to plan is as little as 1%. Additionally, in recent studies investigating the immune regulatory effect in myeloid cells,  scientists made a surprising discovery when trying to bind the calcium protein to the gene S100A8 protein. The scientists intended on using CRISPR to knock out the calcium protein from binding with the gene because that is the cause of an immunology defect. When they tested this on mice, they were alarmed that it was successful on only two of the mice they tested. On the other mice, the calcium was duplicated instead of removed. This was concerning because scientists were confident that this would be a successful trial, yet it was not. (Houser, Jiu, Yang, Anholts, Kolbe, Stegehuis-Kamp, Claas, Eikmans)Scientists have recently discovered that the P53 gene does not properly cooperate with edits. The gene either does not take the edit, or it self-destructs, and all the cells die. The only reason why this is a problem is because the mutated P53 causes cancer. It is not just a couple of cases, though; it causes almost half of ovarian cancers, 43% of colorectal cancers, 38% of lung cancers, nearly one-third of pancreatic, liver, and stomach cancers, and one-fourth of breast cancers. Currently, chemo is the only treatment that is possibly working to remove the cancer, but even that does not work well. Completely killing off the P53 gene would cause even more severe issues than cancer; it would be fatal. This relates to the theory of consequentialism which I address in more detail further in the paper. Scientists were not sure of the consequences which made this trial seem even more dangerous and more of a risk to participate in. (Begley)

CRISPR can edit people’s embryos, but  it can cause edits to the human genome. When CRISPR edits DNA, the hope is that the disease will never come back, and it will not be present in future generations. But if all goes wrong and the DNA mutates, this can lead to permanent damage that will be passed down. Risks with the edits are the most prominent issue with CRISPR. This is a drawback because each procedure’s success rate is currently unknown, so it may not be worth the price and impact.

On a more positive note, sickle cell disease cures are more successful than other CRISPR trials. The scientists attempted to disable the part of their hemoglobin cells that make their hemoglobin switch from fetal to adult hemoglobin. Six patients were tested on, one patient was seven years old, and now none of them have excruciating pain, and five out of the six do not need any transfusions. Their hemoglobin is almost comparable to an average person’s hemoglobin. This is a situation where CRISPR was successful, but it is still tough to determine a statistic for CRISPR success because CRISPR edits to cells will always be inconsistent, and the success will vary from each case and each disease. (Renault, Yirka)

CRISPR is a tool that can cure diseases and change lives. It can be dangerous, but people have the right to autonomy to join the trials. Though it may not always be successful, it sometimes is worth the risks. CRISPR’s effectiveness is not close to ideal at this moment. Embryo edits are the least effective, and all other edits are not too effective either. Also, all of these edits are extremely costly and can perpetuate racial disparities which I will address in the next section. 

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Ending racial disparities in science can be challenging. The Tuskegee syphilis study caused many African American people to lose their trust in doctors. During the Tuskegee Syphilis Study, 600 black men participated, and 201 did not even have syphilis. The men did not give informed consent, and it did not benefit them at all. The study was intended to be six months, but it went on for 40 years. When the study finally came to light, it outraged many people, especially in the African American community. Additionally, there have been even more recent studies that have misused African Americans. In the 1990s, a U.S. university convinced parents of African American boys to enroll them in a study that withdrawn them from all medications such as asthma medicine, gave them a low protein diet, did not allow them to drink water, hourly blood draws, they gave the boys a drug that increases serotonin levels and is usually associated with aggressive behavior. Scientists completely misused these boys and this event affected the entire African American community. It is understandable that minorities now may have reservations to join trials. In CRISPR clinical trials, less than 20% of the participants are people of color. Scientists gain a significant amount of more information on white people than on people of color during the CRISPR trials. Without this information on people of color, scientists are not sure how their bodies react to enzymes cutting their DNA and how their bodies can mutate. 

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Thalassemia and sickle cell disease are predominantly found in African American descent, so it is even more crucial for them to participate in trials. Because of the lack of minority participants, scientists need to be more effective in their outreach to communities of color to educate people about clinical trials and reduce trials’ stigma. When considering the value of equality, educating minorities will promote trials to give them an equal opportunity of using CRISPR once it leaves clinical trials because the safety concerns would be eliminated with the increase in experimentation. It would also be beneficial to grow diversity in the medical fields to gain minorities’ trust. According to the University of Michigan, when doctors are of the same race as the patient, it creates a sense of trust. Because of the lack of trust and the lack of minorities in trials, this perpetuates the split of races. This is a justice issue because white people may have access to a beneficial technology that people of color will not. In addition, minorities may not have access to CRISPR because of economic concerns. According to the federal safety net, the majority of people in poverty are black people, which leads to the wealth disparities that can be perpetuated by CRISPR.  (Hopkins, Tanne, Huerto, Federal Safety Net, Scharff, Mathews, Jackson, Hoffsuemmer, Martin, Edwards)

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CRISPR is extremely expensive. One percent of the world’s population has over 40% of all the world’s money. A full discussion of the equity issues with global economics is beyond the scope of this paper. Still, there are times when having more money can save a life, in this case paying for CRISPR. CRISPR can save a life, it successfully cures Beta-thalassemia and other diseases, and it can cure some types of cancers. CRISPR is expensive, though, so only wealthy people can use the tool. In the future, the costs will decrease, but it will still always limit people’s access to the device because of costs. It seems unjust that only a select group of people can use CRISPR, so I believe that it will be necessary for scientists, engineers,  and doctors to find ways to cut down CRISPR costs. (Alison Irvine) This technology can separate the poor from the rich, making a large gap between socioeconomic classes. This may not seem like an obvious ethical issue, but this gap poses a serious moral hazard. Justice involves an equitable distribution of medical care, tools, and medicines. It would therefore not be morally right if only wealthy people could use CRISPR. This situation is unjust because research has shown that income inequalities can heighten health and social problems and lower happiness throughout the population. When people have a lower income and cannot afford CRISPR usage, this can lower their life expectancy and cause more health issues. Additionally, the simplest way to access a CRISPR trial is through a doctor, limiting participants once again if the person can not afford to have a doctor. (Irvine) Since these consequences result from an unjust inequity, these consequences are morally inferior.

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Justice

The principle of justice morally obligates us to structure society fairly. Justice closely ties with fairness, equality, and equity. These concepts are critical to consider when making public health decisions. As we have seen, the usage of CRISPR may unintentionally exclude races because of the lack of diversity in clinical trials. For example, in a recent study of the makeup of races in trials across the world, there were 150,000 patients in 29 countries tested, and 86 percent of the patients were white. I believe racial disparities such as these are not just because they contradict the work people have done to promote equality and end all forms of segregation.  (Scientific American)

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With that said, I believe that it is ethical for CRISPR to be used because it is beneficial to society if the tool can help anyone. Justice means giving each person what they deserve. The principle of justice determines what is fair for all, so even though there are accessibility barriers for some minorities and people of lower socioeconomic status, this should not prohibit all people from not using CRISPR. Additionally, if people have reservations about joining the trial or using CRISPR  because of safety concerns, this is valid. I think it will be essential for minorities to be educated on trials in order to educate all people to better understand the intentions and purposes of trials. In the current state of CRISPR and its trials, I still think it is ethical to use CRISPR even when considering the implications.

Safety

CRISPR was initially invented in 1987 but was not in trials until 2008. Much testing is needed for CRISPR to be safe. Safety is a significant ethical issue because CRISPR usage depends on its consistency and if it will help or harm the person. Safety is protecting people, property, and the environment. The technology is exceptionally new and can be inconsistent. It can be challenging for scientists to predict if the genes connect properly. After the scientist removes part of the DNA in cancer clinical trials, the two strands should connect. This can either be successful or disastrous. Their hope is when the two strands connect, they do not mutate and healthily connect. If they mutate, it can either be just as bad as before or mutate into an even worse disease putting the patient’s life in jeopardy. Though the technology has been around for over three decades, it is still such a new tool. CRISPR will not be able to leave clinical trials until the effectiveness is consistent and a high percentage of the time, it is accurate. People do not want to put themselves in harm’s way unless it is necessary.

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But, in many cases like the sickle cell disease CRISPR trial, The clinical trial participant(s) have a terminal or an excruciatingly painful disease. It may be critical to use to save their lives. Though CRISPR may be highly dangerous, it can extend life expectancies in some cases. Safety ties in with fairness; it may not be entirely safe for a patient to participate in a CRISPR clinical trial because of safety concerns, but it would not be fair if they did not participate and have a life-threatening disease. It is difficult to determine whether or not CRISPR is worth the risk and if it is ethical. Also, people have their right to autonomy. No one is being forced into participating in a trial. It is important to remember that each person in the trials has chosen to be here. I believe that CRISPR use is ethical because, in the future, it can safely save many people’s lives and be a solution to fatal diseases that have taken many people too early.

Consequentialism

The theory of consequentialism claims that an action is right or wrong based on its consequences. Participating in any clinical trial is risky and may be dangerous, but participating in a trial that alters DNA seems unsafe. It is understandable why people may not want to participate, knowing the consequences. CRISPR can do damage, but it also can help. Because CRISPR is new and inconsistent, it is difficult to determine if there are more beneficial consequences or harmful consequences. However, it seems unethical for scientists to experiment on people knowing that the chance of something going wrong is significantly higher than successfully working. Most trials are known to possibly have negative effects, so it is important that the participants are aware of the effects and there are many uncertain details in the trial.

With that said, people are consenting to being tested on knowing the consequences. Doctors and scientists must make sure all patients consent to what will be done to them and what can happen. Often, the consequences are not nearly as dire as their current state, and it may end up working in their favor. Regardless, I believe CRISPR is ethical if the consequences are known to possibly be good or harmful, as long as the patient gives informed consent.

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CRISPR is a technology that seemed impossible at first, but it is now becoming a reality. All CRISPR edits are currently in clinical trials, and they will be for a long time. It is currently illegal to edit an embryo and allow it to live for more than three days, but it is legal to edit a living person in the context of a clinical trial. CRISPR is not safe, yet it is a person’s autonomy to be part of the trials. Scientists must inform the patient of the details in the clinical trial, so even if the trial is not successful, the patients gave informed consent. 

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Regarding racial and wealth disparities, it is difficult to end these issues. SCD primarily affects people of color, so it is necessary to encourage minorities to participate in clinical trials. I believe that education is essential to reduce the stigma around clinical trials. Also, as I mentioned before, according to a study done by the University of Michigan, when a doctor is of the same race as the patient, it creates a stronger sense of trust. Hopefully, when more minorities join clinical trials, the disparities will lessen because of the increase in information that the scientists now have.

Because CRISPR is a fairly new technology, it is currently quite expensive. Eventually, the price will decrease, but it may not drop enough to make it accessible to most people who need it, so it will be necessary to innovate to make CRISPR more accessible and affordable. Though it will take time, increasing CRISPR efficiency will decrease costs and lead toward bridging the gap of wealth disparities.

Though it is unethical that disparities happen, overall, I believe CRISPR usage on somatic cells is ethical. I believe that CRISPR should remain legal and it is ethical because it has the chance of curing fatal diseases and saving lives. As long as CRISPR becomes accurate and effective, it will benefit many people, leaving me to conclude that CRISPR usage on somatic cells is ethical.