Gene-editing for HIV and AIDS
Gene-editing for HIV and AIDS
The Genetic Playground: The Ethical and Religious Implications of Gene-Editing for HIV and AIDS
By Elizabeth Wyshner
The question of what are the ethical and religious implications of using gene-editing technologies to eliminate diseases such as HIV/AIDS is highly debated in bioethics, with strong arguments both for and against. However, main sources fail to look at the topic through all the possible lenses. One will address the ethical concerns, another the scientific facts, but I intend to bring together the scientific, ethical and theological arguments involved with gene-editing technologies. Specifically, there are portions of my paper where I present the scientific facts and look at the make-up of the HIV virus and how the cells would be edited with CRISPR/Cas9. I will be using He Jiankui’s experiment with CRISPR/Cas9 where he created HIV resistant twins as a guide for the scientific processes involved and the ethical values that should have been considered in He’s experiment. Next, I will be looking for different ethical values and principles to examine the many possible answers to the question. The overall theme of my paper is religion, and I will be looking at different religions and using their sacred texts and traditions to decide whether they would accept or reject the use of gene-editing technologies for HIV and AIDS. Based on my research regarding the possible negative effects of gene-editing, I have come to the conclusion that, in my opinion, it is not ethically permissible to use gene-editing technologies to eliminate genetic diseases or to edit the genome to prevent contracting diseases. I believe that the human genome is sacred and that we should avoid falling further down a slippery slope leading to genetic enhancement, overpopulation and irreversible, unnatural effects to the entire human gene pool. Through this paper, I will propose my ideas for the strict regulations on gene-editing that I feel are necessary to protect the rights of embryos and to prevent the many negative effects. My plan is to set a guide for how gene-editing should be used and regulated and how to prevent an embryo’s genome from becoming a scientist’s playground as we venture into the uncharted land of our Brave New World.
Table of Contents
- Factual Background on HIV, AIDS and CRISPR/Cas9 Gene-Editing
- Equality & Access: The Fight for Genetic Safety
- Responsibility and Quality of Life: A Parent’s Job to Protect their Child
- Good Intent and Bad Endings: Virtue Ethics and a Slippery Slope
- When Do No Harm, Free-Choice and Informed Consent are Mutually Exclusive
- Intersection of Ethics and Theology: The Religious Perspective on Gene-Editing
It is 2020, you live in the United States and you are considering having a child. But, you have AIDS and you are afraid of passing HIV on to your child. AIDS stands for Acquired Immune Deficiency Syndrome and HIV stands for Human Immunodeficiency Virus. The long-term effect of HIV is AIDS. I will discuss the science behind HIV and AIDS in-depth in a later section. You do know that there are ways to have a biological child even if you are HIV positive, such as with a gestational surrogate and HIV treatments (HIV.gov), but you are leaning towards using in-vitro fertilization (IVF) because you feel as though it is safest for your child. However, you are still very worried about passing down your disease to your child because you do not want to give your child a disadvantage. Because you chose to use IVF for your child, your doctor informs you about gene-editing with CRISPR/Cas9 to eliminate the CCR5 gene. This process would induce the delta32 mutation in your child’s genome and likely result in HIV resistance. You are torn between two options: using gene-editing to prevent your child from getting HIV in an attempt to give your child the best quality of life or not using gene-editing because you do not know how gene-editing interacts with the human body. There are more than just two options and parents can decide whether or not to use gene-editing for a multitude of reasons. However, I will just be focusing on these two options and reasoning for now. The last thing you want to do is cause harm. But, you also do want to protect your child from a possibly deadly virus. So, would you genetically-modify your child’s embryo to give them HIV resistance?
The question of what are the ethical and religious implications of using gene-editing technologies to eliminate diseases such as HIV/AIDS, is highly debated in bioethics, with strong arguments both for and against. However, main sources fail to look at the topic through all the possible lenses. One will address the ethical concerns, another the scientific facts, but I intend to bring together the scientific, ethical and theological arguments involved with gene-editing technologies. Specifically, there are portions of my paper where I present the scientific facts and look at the make-up of the HIV virus and how the cells would be edited with CRISPR/Cas9. I will be using He Jiankui’s experiment with CRISPR/Cas9 where he created HIV resistant twins as a guide for the scientific processes involved and the ethical values that should have been considered in He’s experiment. I will conduct an ethical analysis and address the values and principles of equality, responsibility, autonomy and nonmaleficence by looking at what different religions–Christanity, Judaism, Islam, Buddhism and Confucianism–say about gene-editing based on their scared texts, beliefs and rituals. My ultimate goal is to propose my idea for what regulations on gene-editing should look like. Based on my research regarding the possible negative effects of gene-editing, I have come to the conclusion that, in my opinion, it is not ethically permissible to use gene-editing technologies to eliminate genetic diseases or to edit the genome to prevent contracting diseases. I believe that the human genome is sacred and that we should avoid falling further down a slippery slope leading to genetic enhancement, overpopulation and irreversible, unnatural effects to the entire human gene pool. Through this paper, I will propose my ideas for the strict regulations on gene-editing that I feel are necessary to protect the rights of embryos and to prevent the many negative effects. My plan is to set a guide for how gene-editing should be used and regulated and how to prevent an embryo’s genome from becoming a scientist’s playground as we venture into the uncharted land of our Brave New World.
Factual Background on HIV, AIDS and CRISPR/Cas9 Gene-Editing
History of HIV
HIV is on the rise and the AIDS epidemic is growing every day; 1.7 million people were newly diagnosed with HIV in 2018 (HIV.gov). HIV has been active in our world for longer than we think. HIV was first thought to spread to humans after one human came in contact with the virus through chimpanzee blood just before 1980. Throughout the 1980s, HIV was silently spreading and doctors did not understand the virus; they orginially thought that HIV was a side effect from drug usage or from being a gay man. Starting in 1982 after many gay men in California were found to be HIV positive, the disease took the name of GRID, gay related immune deficency. During this time, HIV was still spreading through the world and affecting people in Europe and Africa. In 1984, the National Cancer Institute was able to disprove the claims of GRID after many men who supposedly had GRID transferred the disease over to their female partners.
The National Cancer Institute found that the HIV virus caused a disease known as AIDS, which resulted in immune deficiencies. Through the rest of the 20th century, AIDS continued to spread and some countries, the United States included, banned HIV positive people from immigrating to their country. People with AIDS faced discrimnation for simply having the disease, but things began to change once the Global Fund approved $600 million for AIDS research and the development of rapid HIV tests. (“History of AIDS”; “History of HIV and AIDS). Despite growing efforts to combat AIDS, such as a $15 billion grant by President Bush in 2003 to provide treatment, 37.9 million people had HIV or AIDS in 2018 (HIV.gov) and that number is expected to continue to grow (HIV.gov). And although the discrimination against those with HIV and AIDS has decreased, it is still present today.
HIV & AIDS Definitions
Human Immunodeficiency Virus, HIV, is a virus that targets CD4 cells in the immune system and will eventually kill or weaken all of the CD4 cells (HIV.gov). This weakens the immune system, leaving HIV positive people susceptible to opportunistic infections (OIs), which are infections like pneumonia and tuberculosis that are more frequent and severe due to the patient’s weakened immune system (HIV.gov). The difference between HIV and AIDS (Acquired Immune Deficiency Syndrome) is that AIDS evolves over time after the virus, HIV, has killed enough CD4 cells such that there are fewer than 200 cells per milliliter of blood. (“HIV/AIDS”, MayoClinic). To put that into perspective, the ideal CD4 cell count is 500 to 1000 cells per milliliter of blood (“CD4 Count”, HIV.gov).
HIV Infection Process
Above is a diagram of the HIV infection process (AIDS Info). The process begins when the RNA buds on the outside of the HIV cells bond to the beta chemokine extracellular receptors on the CD4 cell. This is how HIV will infect the immune system. HIV then starts to diffuse through the cell membrane. However, HIV is too large to diffuse through the membrane completely. So, HIV dumps its contents, which are mostly ribonucleic acid (RNA), into the cytoplasm of the CD4 cell. The next step is reverse transcription using the enzyme reverse transcriptase. In this step, the RNA that was dumped into the cytoplasm of the CD4 cell is reverse transcribed into DNA. Transcription is normally the process of converting DNA to RNA, so the reverse would be making RNA into DNA. The now DNA travels to the nucleus of the CD4 cell, which leads into the next step of integration. In this step, the new HIV DNA starts to take over the cell to weaken it by taking over the CD4 cell’s function. The final step is that natural DNA in the CD4 cell replicates, which also replicates the HIV DNA. That DNA is then assembled back into RNA and put back into HIV. This step allows the CD4 cells to be continuously affected by HIV because it will produce HIV DNA every time it replicates its DNA. It also provides the RNA that can go back into HIV. The final step is HIV breaking off from the CD4 cell and going on to infect other cells in the immune system. As HIV continues to infect cells, the immune system will get weaker and lead to immune cell death (“AIDS Info.”, NIH.gov).
HIV is contained within one’s blood and can only be transferred between people through contact of bodily fluids. This typically occurs during unprotected sexual intercourse or sharing needles during drug use (MayoClinic). The way that HIV is transmitted from person to person is a large contributor to the stigma behind HIV (“Facts about HIV Stigma”, CDC). One of the many tricky things with HIV is that there are no symptoms of HIV transmission. This means that many people do not know they need to get tested or that they have the virus. In 2018, 14% of the 1.1 million in the United States who are HIV positive were unaware of their condition (HIV.gov). This brings up the question of should those in the HIV positive community have a responsibility to share that they are HIV positive to protect the greater good, or do they have a right to keep their medical information private?
HIV & AIDS Stigma
HIV and AIDS have a large stigma, in part because people still believe outdated ideas about the disease. Some still believe that only members of the gay community, those who use drugs or live in an underprivledged community can get HIV. This is because of the long and complex history of HIV and AIDS. And, those who are HIV positive are frequently discriminated against and told that they have “dirty blood.” Those living with HIV have also been denied jobs in the medical industry because others fear that they would pass on the virus to patients (“Facts about HIV Stigma”, CDC). It will be interesting to see if using gene-editing technology for HIV resistance would increase or decrease the amount of discrimination those in the HIV positive community face.
Gene-editing for HIV resistance may increase prejudice against those with HIV and those who are the first to use gene-editing. It likely would increase prejudice against those who are HIV positive because gene-editing for HIV resistance would show that rather than trying to help those who are currently suffering from HIV, scientists are just trying to protect the future. I think that those who use genetic modification early on will also be discriminated against because they are modifying our world and making their decisions without thinking of the greater good.
It is interesting that there is still such a large stigma behind HIV given what many religions think about the value of a human life. In Christanity, for example, God hand-creates every human in his image. However, if God is good and hand-creates every child, why do some children get HIV?
This connects back to how HIV is transmitted because Christanity goes on to say that if a person contracts HIV it is because they were sinning. Although there are exceptions to this, Christanity sees HIV as a result of sin.
He Jiankui’s Experiment
One of the biggest scandals with gene-editing was He Jiankui’s experiment that led to the creation of twins, Lulu and Nana, the first two CRISPR babies. He modified their embryos with CRISPR/Cas9 to give them the delta32 mutation by eliminating the CCR5 gene. He hoped this would make them HIV resistant. He’s experiments, however, were denounced by others.
“They’ve crossed the bottom line of ethics in scientific research and medical ethics”(Xinhua News Agency in China).
He ignored all ethical ideas and used CRISPR/Cas9 to create two humans. The experiments violated the ethical guidance, such as nonmaleficence and informed consent, by failing to inform experimental participants of possible risks. He also failed to conduct an ethical review prior to beginning his experiments and falsified ethical review certificates. These experiments were also illegal and He was convicted of illegal medical practices. He is now spending three years in prison to pay for his actions (“He Jiankui is going to Jail”). This not only forces us to think about how our world is already changing because we are living among CRISPR babies, but it also makes us question the ethical and legal regulations on gene-editing in China and around the world. Are we prepared for gene-editing in our Brave New World?
Gene-Editing & CRISPR/Cas9
Now, I will switch to talking about the science behind a possible solution to the AIDS epidemic: gene-editing, which is how scientists can cut and paste in the playground. Gene-editing technologies were first discovered in 2015 and they allowed humans to modify an organism’s genome through the deletion or insertion of certain genes or pieces of DNA (“Modified CRISPR Cuts and Splices Whole Genome”). Currently, there are three types of gene-editing technology available: Zinc Finger Nucleases (ZFNs), Transcription Activator-like Effector Based Nucleases (TALENs) and Clustered Regularly Interspaced Palindromic Repeats (CRISPR). They all work in a similar way by using an enzyme that acts like molecular scissors to navigate and cut the genome (“CRISPR Explained”, Wired). While there are multiple different types of CRISPR depending on which protein is used to cut the DNA, I will be focusing on CRISPR/Cas9. Cas9 is CRISPR associated Cascade protein 9 and it is the enzyme that modifies the DNA.
Connecting back to the title of my project (The Genetic Playground), is that scientists are acting like children on a playground. We can see that in He Jiankui who abused the power of CRISPR/Cas9. Many other scientists will likely fall into the same trap because the endless possibilities of gene-editing technology are hard to resist. This means that many scientists are acting like children on a playground–not exactly knowing what they are doing, but having a lot of fun doing it.
The scientific process that He used in his experiments, although unethical and illegal, is the most promising method for using gene-editing to induce HIV resistance. The CCR5 gene is on chromosome 3 in position 21 and it is the gene responsible for producing the protein beta chemokine, which is what makes up the extracellular receptors on the CD4 cell. HIV will bond to these receptors and will affect the cell. Scientists think that if we are able to eliminate that gene, HIV will not be able to infect the cells because it has no receptor to bond to (Xu, Lei, et al.). This means that HIV cannot damage the immune system even if it has entered the bloodstream. To do that, scientists could use CRISPR/Cas9 to induce the delta32 mutation. The delta32 mutation is a deletion of the 32 bases that make up the CCR5 gene (MIT). This seems like it has a lot of potential to stop the spread of HIV and AIDS because currently there are only palliative treatments for the condition (NIH.gov).
CRISPR/Cas9 Editing Process
Above is a diagram that details the CRISPR/Cas9 gene-editing process. First, an embryo needs to be created through in-vitro fertilization. All parents who want to use gene-editing for their child must create the embryo through IVF because CRISPR/Cas9 must be done in-vitro.
Scientists are working on ways for CRISPR/Cas9 to work In-Vivo, which would allow embryos to be edited while remaining in their mother’s womb.
One of the benefits of using CRISPR on embryos is that there are fewer cells, so CRISPR/Cas9 has to do less work to edit all the cells. Also, embryos will undergo cell division more rapidly in order to grow quickly, so any new cells made will have the edited version of the genome. The CRISPR/Cas9 editing process begins with a retrieval of the DNA sequence that scientists want to eliminate.
In the case of gene-editing for HIV resistance, that sequence is that of the CCR5 gene.
Next, a strand of Guide RNA is created with the complementary base pairs of the target gene, which is how the Cas9 enzyme will find the correct place to cut the sequence. The Guide RNA is introduced into the Cas9 enzyme and incorporated into the embryo. Inside the embryo, Cas9 will be pulled into the nucleus of the cells, which is where the DNA is located in eukaryotic cells. In the nucleus, Cas9 splits the DNA double helix and scans the DNA to find a sequence that complements the Guide RNA. Cas9 stops once it finds the correct DNA sequence to bond with the Guide RNA. To cut the DNA, Cas9 conforms itself around the DNA sequence that it is going to remove and pulls it away from the rest of the genome, effectively cutting the DNA. This will leave the rest of the DNA sequence with a break in the middle, but DNA repair proteins in the nucleus will bring the two DNA splices back together to make one continuous sequence again. Once the Cas9 has edited the DNA in one cell, it leaves that cell and goes on to edit others. This process happens repeatedly, hence the CRISPR name (MayoClinic).
The scientific process that I explained above is just one of the many ways that scientists are using gene-editing as a possible solution to the AIDS epidemic. One of the risks with the delta32 mutation gene-editing process is that some may see it as a passive solution to the AIDS epidemic. Rather than solving the current day problem, we would be creating a new HIV resistant generation. This would prevent the epidemic from continuing to grow, but it would not improve the quality of life of those who are currently HIV positive.
In this section, I discussed what HIV and AIDS are, their history, the current stigma around HIV and AIDS and talked about He Jiankui’s experiments. HIV works to destroy CD4 cells to weaken the immune system; this will ultimately cause AIDS. HIV has a large stigma because of the way that the disease is transmitted and its history in relation to the gay population. Next, I explained the CRISPR/Cas9 editing process for HIV resistance, which was based on the experiment of He Jiankui. Although I have discussed the scientific background of gene-editing and it is clear that it can save many lives, it is still important to examine the different ethical values and principles, such as equality and who has access to the technology.
Equality & Access: The Fight for Genetic Safety
Technology is expensive, there is no way around that. As of right now, it would cost about $4,500 to use gene-editing technology for one gene on one embryo in the United States (Stanford Medicine). Although that is less expensive than many would think, gene-editing is still at a price where not everybody can have access to it because of the cost. That $4,500 also does not include the price of creating the embryo using in-vitro fertilization, which can cost up to $12,000 for one round of IVF (New York Times).
All embryos for CRISPR-Cas9 need to be created through IVF because CRISPR does not yet know how to edit genes in-vivo and doing the gene-editing process in-vitro is supposedly safer for the embryo.
Currently gene-editing technology for HIV resistance is not approved for clinical use–and that approval is likely going to be delayed because of He’s experiment–but I anticipate that it will still be approved in the near future (Tufts). Because of the cost of the procedure and the fact that it would be so new and controversial, insurance would likely not be required to cover it. This could lead to a medical gap between the rich and everyone else because the rich would be able to afford gene-editing. However, even since the development of CRISPR, the cost of gene-editing technologies has dropped 99%. Scientists can use CRISPR in a lab with a kit that costs just $65 (Stanford Medicine).
The issue of who has access to medical care in general is an important topic in bioethics. The United States is a capitalist country where some people have advantages in life that create a divide between those who have access and those who don’t. But are we really willing to let technology that could allow us to give children–but only the wealthy children at first–better lives free of disease go to waste because some people cannot afford it?
However, there is a possibility for there to be assistance payment plans to allow more people to have access to the technology. But, these plans would still likely come about much later than civilian access to gene-editing and commercial use would.
We have the power to manipulate the human genome to provide people with a better life and if we do not use it, are we ignoring our responsibility to prevent the spread of disease? Again, our country is based on capitalism and classes, so do we need to be avoiding something that is already happening naturally: a growing socio-economic divide? How much harm would it really do to allow “rich” kids to be safe from HIV and AIDS? And, as the rich use the technology more, the price goes down, which allows more people to gain access to the technology.
But how do we define harm? I think that harm would be defined as having a disease that limits some aspects of life when that disease could have been prevented. Currently, the people who are being harmed the most are those living in places where HIV is prominent and every day there is a risk that they could get infected. And, these are the people who could likely be helped the most by using gene-editing. But, on the other hand, it might be doing harm to the larger community by denying the wealthy and those who want to use gene-editing now access; these people are willing to be some of the first people to use the technology, so should we let them be the test subjects?
Another interesting aspect about HIV is its geographical location around the world (IHME). The largest HIV positive communities are–and where HIV/AIDS is in our world-is southern Africa, particularly in the countries of South Africa, Botswana, Lesotho and Swaziland (Our World in Data). There is also a large percentage in Russia. However, the locations where HIV is most prevalent do not align with the countries that have access to gene-editing technology, which creates a geographic divide. The countries that have the most developed gene-editing technologies are the United States, Brazil, the United Kingdom, Japan and Germany with China being the world leader.
Although China is still the world leader, ever since Jiankui was sentenced to three years in jail, Japan has passed legislation that allows for accelerated approval of experiments that use gene therapy and stem cell treatments. This means that scientists in Japan can now conduct these experiments with the background of the safety effects of the technology. This is part of Japan’s quest to outpace China’s biotechnology industry (Genetic Literacy Program).
Furthermore, few people are looking to use gene-editing technologies in communities with large HIV positive communities. The geographic divide between where gene-editing is and the communities where it could be the most helpful is a clear example of how gene-editing technologies would limit access to health and promote inequality. This also raises the question of: do the people who have access to gene-editing technology have a responsibility to help those without it? This question is a repeating question throughout history, where a new scientific breakthrough comes and the major question is who can use it?
Interestingly, Canada has a large gene-editing technology arsenal, but they have a legislative ban on the technology (Our World in Data).
Any regulations that the United States put in place will likely allow the use of CRISPR/Cas9 for medical purposes because the United States has historically been a leader in scientific innovation and the U.S. would not want to be charged with limiting a scientist’s or a person’s autonomy.
Back in World War II, the United States decided to mass produce penicillin and use it as a secret weapon for the Allies in the war. That decision to mass produce penicillin was a major factor in why the Allies won the war and it revolutionized the United States opinion toward scientific innovation.
Currently, the United States is classified as having ambiguous rules on gene-editing because leaders say that it should be banned, but in 2019 the FDA approved a trial where scientists would use gene-editing to eliminate blindness (Thulin). However, if a communist country were to put in regulations regarding CRISPR/Cas9, they might outlaw all use for the common people because they do not want anyone to gain an advantage that would disrupt equality.
Another general fear would be the use of gene-editing to create stronger soldiers for war. The United States has even considered using gene-editing to protect their soldiers from biological and chemical attacks (Washington Examiner). Steven Walker, the director of the Defense Advanced Research Projects Agency (DARPA), part of the United States Department of Defense, said: “Why is DARPA doing this? [To] protect a soldier on the battlefield from chemical weapons and biological weapons by controlling their genome — having the genome produce proteins that would automatically protect the soldier from the inside out,” (Walker).
One of the religions that I have researched is Confuciansism and their stance on gene-editing is based upon the importance that they place on equality and unity. Confucianism tends to argue that gene-editing is unethical because it promotes inequality. Confucianism also says that gene-editing would interfere with community unity, which would lead to a disruption in equality within the religious communities (Lammers and Verhey).
In this section, I discussed the price of CRISPR/Cas9 and how gene-editing is a major factor in our Brave New World when it comes to maintaining equality and access to quality healthcare. These ideas come up again when discussing the value of responsibility because parents have a responsibility to their child to provide them with medical care. But will the growing popularity of gene-editing for disease prevention change what it means to provide a child with quality medical care?
Responsibility and Quality of Life: A Parent’s Job to Protect their Child
Under the law, all parents have a set of rules that they are required to follow in order to be a proper parent. Those rules include providing their child with food, clothing, shelter, education, financial support and safe living conditions (US Legal). The most important parental responsibility for the purposes of my discussion is a parent’s responsibility to provide their child with medical care. Although parents have the right to choose what type of medical care their child receives, new medical technologies available in a Brave New World, such as gene-editing, will impact the parent’s decision.
If gene-editing becomes more widely available, parents might feel obligated to use it for their children because they want to give their child the best life possible, which comes with getting the best medical care available.
Parents might also choose gene-editing because they do not want to deny their child medical care that others have access to. In my opinion, one of the hardest things for a parent is to make medical decisions for their child, which will only get more complicated with the increased availability of gene-editing in a Brave New World.
Relating back to Confucianism, the religion is worried about the growing prevalence of gene-editing because they see it as a non-essential practice. In Confucianism, concepts are divided into either essential or non-essential based on whether that concept is necessary for survival. Gene-editing is put in the non-essential group because one can live without it. Humans have been living without gene-editing technology for hundreds of years, which is why Confucianists believe that we should not jump into using technology that is not necessary for survival. And while gene-editing technology could allow for people with diseases to survive, the teachings of Confucianism preach Naturalism. This means that if a person was naturally meant to die from a disease based on their DNA, then that is the plan for their life. If the natural plan is altered by the parents through them using gene-editing on their child, it would leave their child detached from its pure state (Zhang Xinqing). The family would also be detached from their Confucianist community and risk being rejected from the religion.
For many parents, their aim is to provide their child with the best life and opportunities so that their child can succeed on their own. Is a parent ignoring that goal and responsibility that they have to their child if there’s a technology available that can eliminate a debilitating disease from their child’s genome that could give them a “normal” life but they choose not to use it? Although there are many different reasons that parents could decide whether or not to use gene-editing, one of the reasons that I find most interesting is that the parents do not want to give their child an advantage that they were not destined to have–even if CRISPR/Cas9 would just prevent them from getting HIV. However, are parents who choose to not use gene-editing technology to protect their child against a disease valuing the lives of others more than that of their own child? This counters some parents’ belief that it is their responsibility to make their child feel special and that they are valued more than others, in the parents’ eyes.
However, it’s still not clear what the long term effects of CRISPR/Cas9 are. The only way to know the effects on humans is to use the technology on humans, but not many are willing to use the technology if the effects are unknown. We do know that using CRISPR/Cas9 to edit an embryo’s genome irreversibly changes the entire human gene pool as soon as the baby is born by altering the germline of the edited child. Even though it just starts with one baby, the effect will trickle down and impact everyone, whether they know it or not. Based on that idea, it does not seem right that a parent should use gene-editing as a way to protect their child because it would infringe upon others. There is no way to avoid the genetic effects to all humans after a single human has been genetically modified because all of our genes are woven together in the human gene pool.
Connecting back to a religion, Islam has a unique stance on the gene-editing issue in regards to the parents’ obligation to their embryo. Muslims value the embryo as a potential life, rather than a life, and believe that it does not yet have the right to life. And because the embryo does not yet have the right to life, it does not have rights. Muslims use this as the justification for why gene-editing is ethical on embryos. However, Muslims believe that any artificial intervention on a living human, which means that it had to have been born rather than just conceived, is unethical because the subject is already alive (Ghaly). I think that it is very interesting that they believe that gene-editing is unethical on something living but ethical on something that they believe is not. Many other religions, like Christanity, strongly disagree with this because Christians believe that an embryo is alive as soon as it has been conceived.
The last big question that all parents will face when deciding whether or not to use gene-editing on their child’s embryo is will my genetically modified child be normal–although normal is a subjective term because everyone lives differently which creates a different idea of what normal is. As of right now, the answer to that question is no. However, I foresee that in a Brave New World where gene-editing becomes omnipresent, that the answer to this question may become yes. This is just one example of how gene-editing is redefining what it means to be human in a Brave New World.
Most parents try to do what they believe, in their opinion, is best for their child. But, as gene-editing technology advances, it can become difficult to draw the line between helping your child by providing them with a life free of disease and giving your child an advantage (even if the technology was being used for medical purposes rather than to change cosmetic or intellectual traits). Gene-editing technologies only make a parent’s job harder because there are so many unanswered questions and each answer brings up new concerns.
The major question behind the purpose of using gene-editing technologies to eliminate diseases is: would it improve someone’s quality of life? The difficult part of that statement is that everyone defines quality of life differently. It is hard for HIV in particular because HIV has a broad range of severity. Someone who is newly infected might not even know because they have no symptoms while someone else could be close to death from AIDS after living with the condition their whole life. Regardless, HIV is a chronic disease.
But because there is such a broad spectrum of HIV severity, everyone may have a different opinion on whether gene-editing for HIV resistance will even improve quality of life (Basavaraj et. al.).
There is a chance that the child could be saved if HIV does enter their bloodstream but they are not infected because they are resistant, but there is also a good chance that the child would never even come in contact with the virus. In that case, gene-editing could be seen as worthless.
“This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit”(Julian Savulescu, Philosopher and Bioethics at the University of Oxford).
But, others would see it as a positive action that resulted in protection, even if that protection is not used. Even if it can be proven that gene-editing technologies can successfully prevent someone from living with a chronic disease, there will never be an overall consensus about whether that improved their quality of life or just made it too easy; perhaps both are true.
A factor that can influence someone’s quality of life is the opinion of those who have a disease towards others using gene-editing to prevent their child from having that disease. It is possible that people who have HIV will be offended by others going to such great lengths to ensure that their children can never get HIV by eliminating the gene. HIV is different from other conditions because nobody has ever desired to have HIV. Some conditions, such as deafness, have been argued to be desirable because of the strong deaf community. However, with HIV, the long term and potentially life threatening consequences of having the disease make it undesirable to most. Interestingly, some have argued that HIV prevention is not desirable because transmission of the virus involves two people who are conscious of what they are doing. Some believe that those putting themselves in situations where they could possibly contract HIV should have to be responsible if they get HIV; those arguing against any form of human HIV resistance argue that it limits accountability in the medical community (Fabre-Magnan). Yet, the population that is HIV positive is already discriminated against by some people who believe they have “dirty blood”; and gene-editing to prevent others from being infected with HIV will likely create a united group against gene-editing because they feel that it is discriminating against those with genetic diseases (“Facts about HIV Stigma”, CDC).
On the other hand, there are many genetic diseases that are 100% fatal within a few years of birth. If the child does not get gene-editing, they will have a short life that is not to the extent of a “normal” life. Tay-Sachs disease is an example of this: children rarely live past 4 years old. Therefore, it would seem obvious that if the child’s only chance at surviving is to use gene-editing technology, then it should be used (Christensen and Francis).
But by what ethical principles is that ethical? Is it ethical simply because you are saving a life, even though you are ignoring the possible negative long-term effects to others, and in a way, prioritizing one life over the human gene pool and others?
On the other side, utilitarianism, which is to do the action that would have the most benefit–which can also be seen as the greatest good for the greatest number of people–would argue against using gene-editing technologies on a potentially terminally ill child because it would only be doing good for a small number of people (the child and their loved ones). However, we do not know what that child could be and whether if they were given life, how they could impact our world.
One of the ideas that I have been thinking about is how I would define quality of life. I think that there is a difference between having an ideal quality of life and having the minimum quality of life. I believe that the minimum is simply life. I think that all life has some value just by being alive, even if you are not able to have the ideal quality of life. Having life gives you something that others may never get. Life is a privilege and existing has value. So I believe that by just having life, a life has quality. Quality of life is a spectrum and at the top of that spectrum–rather than in the middle–is the ideal quality of life. This ideal quality of life is free choice, the ability to act as you choose and a connection between the mind and body. However, I feel as though this ideal quality of life is never actually obtainable. While we sometimes might get close, nobody can ever actually reach the top. I believe that we are all much closer to the lower end of the spectrum than we might think.
In this section, I discussed how there is no universal definition of quality of life and then shared what I believe the quality of life spectrum looks like. This also makes it more difficult for parents to decide if gene-editing will help their child. The role of a parent in making medical decisions on behalf of their child is changing as we continue to venture into a brave new world.
Good Intent and Bad Endings: Virtue Ethics and a Slippery Slope
Virtue ethics would help strengthen the argument that gene-editing is ethical because it had a good intent. This counters the argument that the negative effects and the likelihood of the slippery slope and bad consequences from gene-editing make it unethical.
Virtue ethics is the idea that wise and intelligent actions are good because it was created for a good intent. It is also the idea that by living an honest, brave and a fair life, an individual will become honorable and have good morals, which will lead them to making the “right”–because which decision is right it subjective– and ethical decision in complex dilemmas (Ethics Unwrapped). Gene-editing technologies were made with a good intent and a potential to bring about positive change: to save lives and prevent disease. However, once gene-editing becomes more common, it can be used for other, possibly unintended, purposes, such as using CRISPR/Cas9 for genetic enhancements to make a child more intelligent, athletic or changing their appearance to make them prettier. The overall goal is to prevent or alleviate suffering, but as gene-editing technologies continue to grow as we venture into our Brave New World, one could argue that being prettier could provide a better life with less suffering (Fabre-Magan). And while the good intent and the desire to save lives might have been present at the beginning, it starts to blur as we look at the long-term consequences of using gene-editing technology and all the effects that might come with gene-editing.
“Because those who come after us may not be like us, or because those like us may not come after us, or because after a time there may be none to come after us, mankind must now set to work to insure that those who come after us will be more unlike us. In this there is at work the modern intellect’s penchant for species suicide”.(Paul Ramsey, a Christain ethicist)
By this, Ramsey was implying that through genetic modifications the next generations will get progressively further away from what we consider a human to be. In his eyes, this could lead to the human race driving themselves into extinction. This shows how even in 1970, people were already considering the negative consequences of that we are now falling down.
Although these effects might not happen or would only happen to a certain extent, I believe that we are already feeling the impact of the negative consequences from gene-editing. There are four key effects that could arise from gene-editing: designer babies, a new eugenics movement, overpopulation and the effects of gene-editing to the germline and the human gene pool. And while these effects may not seem to be short term issues, one can argue that we have already started to feel the effects.
This can be seen particularly with designer babies–babies that are genetically modified to have certain cosmetic traits or abilities (“Designer Babies”, New Hope Fertility); these babies were created to have an advantage or be more perfect, rather than to prevent against a medical disease.
Although current designer babies are not being created with gene-editing–but there will be in the future–, there are ways that parents can select an embryo with certain traits. But, because there are already CRISPR babies (Lulu and Nana) living in our world, we have also already been subject to the impacts of gene-editing on the human gene pool, even if we do not know it yet. It is possible that if we keep continuing down this path, we will keep falling further down the slope and quickly hit the bottom. He’s experiments proved that a slippery slope is likely because humans do not know when to stop. It is hard for scientists to stop innovation even if it is ethically wrong. This just makes all the negative consequences of gene-editing more likely.
The first key issue on the slippery slope is the emergence of designer babies. Designer babies are babies who are genetically modified as embryos to have desired traits. These traits could be eliminating the gene for a fatal genetic disease or giving the child a gene for athleticism or intelligence (“Babies by Design”). The designer baby movement has already started to happen through the emergence of IVF, PGT (preimplantation genetic testing), and gender selection that allow us to select the ideal human. The main ethical issues that are embedded with designer babies are how they can impact society. All of the negative consequences on the slippery slope will have negative effects for society that we are likely to reach if we ignore or refrain from regulating gene-editing technology. Designer babies will also grow the gap between those who have access to gene-editing and those who do not, which will spread inequality. However, designer babies are inevitable simply given the fact we have created gene-editing technology (Ly). Parents also have the right to autonomy for their embryos and if they want to create a designer baby, shouldn’t they be allowed to?
New Eugenics Movement
The next big risk that awaits on the slippery slope is a new eugenics movement. This will likely be caused by the omnipresence of designer babies. Eugenics is the scientific modification of humans that leads toward a selective breeding movement (Merriam Webster). This closely relates to gene-editing because gene-editing is a scientific way to improve humans and other organisms by controlling the traits that an offspring inherits. Gene-editing has given us the power to manipulate the human genome as we wish.
Although there have been eugenics movements in the past such as during World War II with Nazism, there has never been the possibility that we could actually modify the human genome to make something perfect (Friedman).
And while everyone has a different definition of a perfect child, through gene-editing, parents have the power to create the perfect child in their eyes. And even if gene-editing is only for medical purposes and never for genetic-enhancement, it could still lead to a new eugenics movement.
Although it is hard to speculate about what the gene-editing eugenics movement will actually look like, it will likely be much worse than the World War II eugenics movement. We can manipulate the human genome as we wish to create the ideal human. And the genetic-manipulation of the genome may become so common that the definition of what it means to be a normal human will change.
The third key issue that awaits on the slippery slope is overpopulation. As we start to eliminate disease, more people will live. And while it is hard to argue against people being given life, we do have to look at the negative consequences that more people can have on our world. In 2018, 77,000 people died from AIDS (HIV.gov). If all those people would have lived because we created a new HIV resistant generation, our world would be very different. We would have increased competition for resources, such as fossil fuels, land, food and water that the Earth might not be able to sustain long term. We would also increase pollution because more people living requires more energy and burning of fossil fuels. This could contribute to climate change and create an even more unstable climate in our world. Lastly, gene-editing itself impacts the environment because any waste created from the gene-editing process is disposed of as biohazard. And while there is not as much waste that comes from gene-editing as other scientific procedures, anything that is involved in the process is burned, releasing pollutants into the atmosphere.
However, any medical or scientific intervention that was created to save lives contributes to overpopulation. One could argue that overpopulation is just a natural effect that is bound to happen as the human race continues to expand by preserving life. But, that inevitable overpopulation point will likely come faster if we use gene-editing technology regularly.
Effects to the Germline and the Human Gene Pool
The fourth effect that lies on the slippery slope of gene-editing technologies is the effects to the germline and the human gene pool. All gene-editing is currently being done on somatic cells–which are all cells in the body other than reproductive cells–but we do know that as soon as a somatic cell is edited, all the cells in the body know and feel the effects (“What You Need to Know about CRISPR”, Jorgenson). This means that even if the germ cells of an embryo were not edited but gene-editing technology was used on other cells in their body, that embryo could pass down genetically-modified traits to their potential offspring. The offspring’s cells will also be able to sense that their parent’s genes were edited, which is something that could continue to pass down through the entire family’s germline. We also know that because normally an offspring is a mix of both their parents, if one of the parent’s genes were modified, their offspring is a mosaic baby. A mosaic baby is a child that is a mix of edited and unedited DNA. Unedited DNA is able to find the markers of an artificial gene on an edited genome and may refuse to mix with edited DNA, preventing the creation of a zygote. If they can manage to create a zygote, it may have genetic mutations and chromosomal abnormalities (“Genetic Engineering Will Change Everything Forever”). This is just one example of how gene-editing does not just affect the target of the editing. It affects everyone.
The second example of how gene-editing affects everyone is how one person’s genes being modified will permanently alter the entire human gene-pool. All our genes are linked in the gene pool because we are all based on the same template DNA (“Gene Pool”) and the only thing that makes us different from each other are the genetic mutations that we have and the traits we inherit from our parents. Once one person is modified, the gene pool will go from being purely natural DNA to being a mix of edited and unedited. This will trickle down to affect everyone, whether they know it or not. Another negative about the effects of gene-editing to the entire human gene pool is that everyone will eventually feel the effects even if they believe that gene-editing is unethical. So one family exercising their autonomy and using gene-editing for their child will impact everyone’s genes, even if others would not have wanted to consent.
He Jiankui’s Experiment and the Slippery Slope
Connecting back to the experiment of He Jiankui, I found a particularly intriguing quote that he said in 2017.
“Gene-editing for human germline is going to happen in the near future, so I want to remind everyone we should do this slow and with caution, because a single case of failure may kill the entire field”(He Jiankui, Chinese scientist who created two HIV resistant twins in 2018).
I think that it is very interesting that the man who ignored all ethical ideas and used gene-editing to create two humans is even warning us that gene-editing is a slippery slope.
Other scientists are also concerned about a slippery slope. On the same day that He announced that he had genetically modified two humans for HIV resistance, November 26, 2018, a group of 122 scientists put out a Scientists Joint Statement expressing their opposition to Jiankui and how he started us down the slippery slope.
“The Pandora’s Box has been opened, and we may have a first chance to close it before it is irrecoverable. For any attempt to do genetic editing of heritable human embryos without strict ethical and safety review at this stage, as biomedical researchers, we firmly oppose it! Strongly condemned!”(Joint Scientists Statement, 11/26/18).
In this section, I discussed two ideas that counter each other: virtue ethics and the slippery slope. There are four key effects that lie on the slippery slope: designer babies, a new eugenics movement, overpopulation and negative changes to the germline and human gene pool. However, virtue ethics is an attempt to counter those ideas because gene-editing did intend to help improve quality of life. But are we really willing to overlook all the negative consequences because of the potential good the technology can do? Also, it is hard to definitely say that gene-editing technology improves quality of life because there is no universal definition; I will further explore this idea in my next section.NEW SECTION TEXT HERE
When Do No Harm, Free-Choice and Informed Consent are Mutually Exclusive
Three key ideas in bioethics are nonmaleficence, autonomy and informed consent.
Nonmaleficence, meaning do no harm, is crucial to keep in mind when deciding whether or not to use gene-editing technologies because the last thing anybody wants to do is more harm. The long term effects of CRISPR/Cas9, and gene-editing in general, are still mostly unknown. Although there are scientists who are currently trying to study the effects, it is very difficult to conduct those experiments (Krimsky). And because He is in jail, the two twins he created are not allowed to be observed anymore, even though they are the first two CRISPR-babies (“He Jiankui Defends ‘World’s First Gene-Edited Babies’”).
However, it can be seen that by not observing the twins, they are being harmed. It is likely that there will be side effects of the gene-editing, and if the twins are not observed to see if they have any problems, this could cause harm to them.
The other key issue under nonmaleficence, which also connects to the value of safety, is inaccurate gene cutting. The human genome is over a billion base pairs long and sequences repeat themselves in the genome. In order to use CRISPR/Cas9, a strand of guide RNA needs to be created with the complementary base pairs; this is how the Cas9 enzyme is supposed to be able to find the correct gene. However, when the guide RNA is fairly short, about 20 to 30 base pairs, that sequence will likely repeat itself multiple times in the genome. Once Cas9 is incorporated into the embryo and begins to scan the DNA, it is looking for a sequence that complements the guide RNA. Once it finds a complementary sequence, Cas9 will pull it away from the rest of the genome. However, that sequence may be part of a larger gene and not actually the CCR5 gene; Cas9 will cut out the sequence regardless of its location in the genome. This can lead to loss-of-function mutations in necessary genes, which would likely cause the embryo to die. This would definitely do harm because instead of being HIV resistant, the gene-editing process would have killed the embryo (Fabre-Magnan). This shows how gene-editing technologies are not perfect and that there is still a great amount of risk in using it. But, then again, gene-editing technologies are one of the most promising methods of treating disease ever created and they could be leading technologies in our Brave New World, so we should not overlook their potential to do good.
The second key idea is autonomy, which is an individual’s right to make decisions for themselves. If the gene-editing is being used on an embryo, the parents get to make the decision with the potential child getting no say. There is no way that an embryo could have a say in their treatment when they do not yet have a conscience. However, it becomes difficult when the embryo is going to have to live with the effects of gene-editing for their entire life, even if all the effects are positive. There will likely be cases where a child that was genetically modified for HIV resistance as an embryo regrets the decision that their parents made for them because they do not think gene-editing is ethical. But, because all people have a right to autonomy, the parents could not be punished for deciding to use gene-editing technologies to prevent their child from having a disease, even if that was not the same decision that the child would have wanted their parents to make for them. However, are there rights that we should be considering for embryos that would protect them from unethical treatment during gene-editing experiments? And should we value the embryos as a life or as a potential life?
Maybe these rights for the embryo would be that scientists are not allowed to test embryos with gene-editing technology if that specific gene-editing process has never been tested before on another animal. Maybe scientists would not be allowed to dispose of embryos. This is an important question that I will continue to think about as I develop my argument more.
From a religious perspective, Islam would argue that the embryo is a potential life. Islam would also say that because the embryo is a potential life and does not yet have the right to life, gene-editing is ethical becuase the embryo is not yet alive. However, Islam does believe that most medical interventions like gene-editing are unethical on a living human. Christianity believes that an embryo is alive as soon as it is conceived. This is just one of the many reasons that Christianity believes that gene-editing is unethical (Pfeinderer).
How does this impact potential regulations on gene-editing technologies? One of the risks with having strict regulations on gene-editing is that it limits personal autonomy. And, by definition, all regulations are a form of paternalism–a system where an authoritative body, like a government, uses their power to control the actions and decisions of others, thus like a father controlling a child that they do not trust. Any potential laws on gene-editing would limit parents’ free choice to genetically modify their child’s embryo for any conditions. And if the government chose to put in regulations, it would be seen as the government endorsing paternalism because they are using their authority to limit autonomy. How much do we value having personal autonomy in medical decisions over having regulations to prevent the many possible effects of gene-editing, even though all potential regulations are a form of paternalism? Currently there are some regulations on gene-editing; Canada has a ban on the technology. However, these rules, at least in some countries, are not the “be all, end all”: China has a restrictive ban but He was still able to create two CRISPR babies (Perrin and Gaetan).
The final, perhaps the most interesting, one of the three important bioethical ideas is informed consent. Informed consent is legally required for any decision about medical treatment, which makes sense because how can you say yes or no if you do not understand what you are saying yes or no to? However, this becomes tricky with gene-editing technologies because we do not know everything yet. We are still in the process of learning the long-term effects and how much good it could do in our Brave New World. The only way to learn that is to have parents agree to let their embryos be test subjects for gene-editing, which is an irreversible decision. Even though we can edit genes, we can not go back and “un-edit” them; that would just be editing the genes for a second time in the mind of our cells.
Once the Cas9 enzyme makes the first cut, our world is changed forever. But, the first test subjects would not be making informed consent, which leads to the Bioethics paradox: how do we make informed consent when we don’t know all of the answers?
With ever changing opinions on how to follow nonmaleficence, autonomy and informed consent rules, it seems as though the three are mutually exclusive, meaning that they can never happen at the same time. For example, if a family is making informed decisions to use gene-editing technologies, knowing that there is a possibility that their child will suffer negative effects of being a mosaic baby (having a mix of edited and unedited cells), they might end up doing harm to their child indirectly. Parents will be faced with the difficult decision of deciding what they value more and using that to inform their decision.
It is worth further exploring religion, one of the most important factors that influences decision-making. This was the main reason that I decided it is not ethically permissible to use gene-editing technologies. For many people, religion is one of the most important factors in deciding whether or not to use gene-editing technologies and whether it is ethical overall. Given the strong opinions that many different religions have either for or against gene-editing, it has never been more important to use religion as a guide towards making an informed decision.
Intersection of Ethics and Theology
Religion is a major factor in decision-making. And even though there is supposed to be a separation between church and state, there is definitely not a separation between church and ethics. And because religion can be such an important factor in decision-making, a religion’s decision, either for or against gene-editing technology to eliminate diseases, would either stop or encourage many people to use the technology. Although an individual’s decision is often influenced by their religion, the religion’s views themselves are not often considered relevant to the ethical discussion. Also, even if people in the same religion have similar opinions on gene-editing, we do want to respect their beliefs, but that does not have an impact on laws and ethics. This is why it is important to look at the religions as a whole, because they have power and influence on society.
In this section of my paper, I will be looking at four different religions in depth regarding their opinion on gene-editing and those with HIV and AIDS: Christianity, Judaism, Islam and Buddhism. I have already briefly explored the ideas of Islam, Buddhism and Confuciansism elsewhere in my paper. But first, I will look at the seven common themes between the religions and the overall questions that the different religions have to face in a Brave New World.
The Seven Themes of Religion
There are seven main themes that most religions have in common (Divon). The first is discouraging adherents from “Playing God”, which is the biggest in regards to gene-editing. Once we begin to change the genes of a child, we are changing the way that God created that child. Therefore, we are trying to act as God.
“Men ought not to play God before they learn to be men, and after they have learned to be men they will not play God”(Paul Ramsey 138, Fabricated Man: The Ethics of Genetic Control).
This idea can be a big deterrent for many religions because they want to try to prevent human intervention over God’s will. Next, is naturalness, which argues that we should not be using gene-editing technologies because they make somebody less natural by using artificial tools (gene-editing technology) to modify what has been created naturally. Third is genetic determinism and reductionism which says that the genetic makeup of an embryo is predetermined, which some religions take to mean that the human genome is not our playground for gene-editing technology usage. Fourth is interactions between humans, animals and the nonliving world, which is important to keep in mind as gene-editing technologies could be used in the future to create chimeras, which could be considered an unjust interaction. Gene-editing could also lead to overpopulation that would cause the Earth to suffer due to lack of resources. Fifth is commodification which is a fear that in our Brave New World, we will treat human embryos as a toy or tool towards innovation, rather than a life or potential life (depending on the religion’s belief).
Another issue under commodification is that if we are easily able to modify the human genome, we might start to devalue it and see it as a commodity rather than sacred ground.
Sixth is the idea of solidarity, which, in the context of gene-editing technologies, means reaching unity and agreement on how we decide to use and regulate the technologies in order to prevent the slippery slope effects. This idea directly relates to the idea of community unity in Confucianism. Finally, the seventh theme is medical therapies and social justice. This theme relates back to the ideas of equality and access because some religions believe that if there will not at least be an attempt to provide all people with equal access to gene-editing technologies, then they are unjust because they would promote inequality. I will continue to reference these seven major themes in greater detail for the religions that I will be discussing, as they are part of their rationale for either accepting or rejecting gene-editing technologies to eliminate diseases.
The first religion that I will be talking about is Christianity, a religion with many sects, most of which strongly reject gene-editing for any purpose (Tham, Durante and Garcia Gomez). Based on the Catholic Bible, religion teaches that humans have come directly from God from dust and will live their life and then return to dust.
“By the sweat of your face you shall eat bread, till you return to the ground, for out of it you were taken; for you are dust, and to dust you shall return”(Genesis 3:19)
Because of this, Christanity believes that there should be no artificial intervention–gene-editing, IVF, PGT, artificial insemination, mitochondrial replacement therapy–with God’s will for that child because it would interfere with their process of returning to dust. In Christanity’s eyes, the human genome is sacred because the embryo’s genes were hand-created by God. In a situation where a child was genetically manipulated as an embryo, the church would condemn the parents by saying that the parents did not respect God and the life of their child by changing the child’s genes. The Church would view it as disrespectful to God and as a sin because the family disobeyed the rules of the Church (Tham, Durant and Garcia Gomez). While Christanity does not have formal rules against gene-editing, for most sects, their stance on the matter is known.
“Some branches of research use human embryos, inevitably causing their destruction. But we know that no ends, even noble in themselves–such as a predicted utility for science, for other human beings, or for society–can justify the destruction of human embryos.”(Pope Francis, head of the Catholic church)
This upholds the Catholic belief that life begins at conception and that any scientific experimentation done on embryos, including gene-editing, is unethical because they can lead to the commodification of embryos; this could lead to the commodification of human life.
Christianity bases their opinion on the Bible, the ten commandments, the four Cardinal virtues (prudence, temperance, fortitude, and justice), the three theological virtues (faith, hope, and charity) and other prayers. Christianity is also known to be a fairly conservative religion, although this does vary depending on the sect because they stick closely to what is directly stated in the rules (Stammers). It will be interesting to observe Christianity’s view on gene-editing as we continue to progress further into our Brave New World. It is possible that the many different sects of Christianity (Catholicism, Lutheranism, Anglicanism, Episcopalian, Methodist, etc.) will develop to have different views on gene-editing technology, which will likely create additional conflicts by itself.
The second religion that I will be talking about is Judaism, a religion that has mixed views when it comes to the use of gene-editing technologies. This coincides with how Judaism has many different branches, from orthodox to reform/liberal. Reform Judaism would like to allow gene-editing technologies because they believe in a modern version of Judaism where it is easier for Jews to stay involved with current practices and technologies (Lerner). They believe that it is ethical because gene-editing preserves life, which they believe all humans have an obligation to do. Reform Judaism also embraces the use of technology because it is a simple way to improve life. While other forms of Judaism, Orthodox Judaism, believe in strictly following the rules of the Torah, Reform and Reconstructionists believe in taking the scripture as guiding principles and adapting them to fit modern life (Ostrer).
On the other side of the spectrum is Orthodox Judaism, which is the classic form of Judaism based on the sacred scriptures and religious rituals. The teachings of Orthodox Judaism would advise people that it is not ethically permissible to use gene-editing technologies because the opinion of the religion is not directly stated in their teachings. When the scriptures and rituals of Orthodox Judaism were created, there was no way to see the creation of gene-editing technology in the future, so it was not addressed in the religious rules.
It is important to note that many of the religions opinions are based on extrapolations from their sacred texts. Nobody could have known that gene-editing would be created at the time that all the religions were created. Therefore, these extrapolations, and my interpretations, have a potentially subjective nature.
They also reject gene-editing because they value human co-creatorship with God where He uses the genome to create diversity and imperfections. This leads Orthodox and Hasidic Judaism to reject gene-editing technology to eliminate disease because they feel it is not their place to interfere (Ghaly). On the other hand, human co-creatorship could also be seen as human intervention through artificial means. By this idea, gene-editing could be thought of as another way to have human co-creatorship. This could lead to the use of gene-editing technologies being encouraged because they are a way to protect a child from disease while also following the rules of co-creatorship (Hardt).
The third religion that I will be discussing is Islam, which, like Judaism, is divided; they cannot decide if technological advances like gene-editing are good or bad. One of the things that I find most interesting about Islamic views on gene-editing is how they value an embryo as a potential life, but do not believe that the embryo has a right to life. This means that they would permit doing testing on an embryo because it is not yet alive and should not be granted life. This relates to the Islamic idea of life being a sacred privilege that only God can control (Ghaly). And if you continue to explore that one idea, it seems as though Islam would reject the idea of gene-editing technology because it would be interfering with God’s control by eliminating a fatal disease to give the child life.
However, Islamic law is based on the five Maqasid which are five elements that they believe are required to sustain life: protection of faith/religion, protection of life, protection of lineage, protection of intellect, and protection of property (Ghaly).
The use of gene-editing technology does not contradict all five Maqasid, but it does make the idea of protection of lineage fuzzy.
According to the fourth Maqasid, Muslims must value inheriting traits from their parents that they can pass down to their offspring, even if that trait is being a carrier for a genetic disease. Therefore, it would be difficult to justify using gene-editing technology to eliminate the gene for a genetic disease because that was an inherited family trait, even if it has negative effects on life.
But, Islamic views on gene-editing technology still differ because the Sharia teaches that gene-editing is allowed, as long as it is being used for medical purposes as an attempt to improve the quality of life (Ghaly). By the Sharia, Islam says that using gene-editing to prevent disease is ethically permissable because it is not an attempt to play God, which is one of the seven major religious themes and is a repeated idea in the discussion of the ethics of gene-editing technologies.
The next religion that I will be discussing to further explore the intersection of theology, ethics and decision-making is Buddhism. The teachings of Buddhism are based on the Five Precepts, the first of which is to avoid killing people and animals at all costs (Pfeinderer). And based on this precept, Buddhism would support the use of gene-editing technologies to eliminate diseases because it would prevent the child from living with a chronic or fatal disease. However, if Buddhists were to make the decision to use gene-editing technology to prevent their child from living with a disease solely based on the teachings in the first of the Five Precepts, they might be overlooking the impacts of gene-editing technologies. The other four Precepts are abstention from theft, abstention from sexual misconduct, abstention from falsehood and abstention from intoxication (The Buddhist Society). The last two also could influence a Buddhist’s decision on gene-editing technologies because the idea of falsehood could apply to the edited genome of a child. Their new genome could be seen as false and unnatural because it has been altered from its pure state. The idea of abstention from intoxication is also interesting because gene-editing could be seen as a form of intoxication because gene-editing is artificial, and therefore unnatural. If Buddhists value having an abstention from intoxication, they would likely choose not to use gene-editing because it would lead to permanent intoxication for their child because their child was created through the help of artificial means. This is another form of removing the genome from its pure state, which is frowned upon in Buddhism (Ghaly). Overall, Buddhism would still allow their followers to use the technology because it is a way to avoid killing.
One of the biggest questions that Buddhism still has to answer in regards to the use of gene-editing technology is how it impacts the uniqueness of humans.
Buddhists strongly believe that every human is unique, so one of the things that they fear with gene-editing technology is a new eugenics movement (“Practices in Buddhism”, BBC). And while they understand that eugenics will likely stem from genetic enhancement, they are worried that starting to use gene-editing technologies for medical purposes will start us down the slope; once we start, there is no way to stop until we reach the bottom (Warmflash). However, Buddhism strongly believes that it is their duty to prevent killing, so they would support using gene-editing technologies for medical purposes only.
Gene-editing Versus Genetic Manipulation, the Religious Perspective
One of the most interesting differences between how religions view gene-editing technologies is the wording they choose to use, either gene-editing or genetic manipulation. Religions like Christanity and Confucianism, who reject the use of gene-editing technology to eliminate disease, refer to it as “genetic manipulation” because scientists are bending and altering the genome as they wish, with no regulations or guidance from God. Other religions, such as Buddhism and Judaism, who accept gene-editing for medical purposes, use the phrase “gene-editing” because they believe that it is just for scientists to change small parts of an embryo’s genome to give them a better quality of life.
The last thing I would like to talk about in this section is the precautionary principle, which states that the introduction of a new process, such as gene-editing technology, that has unknown effects should be restricted (“Precautionary Principle”). This can be used as a rationale for some religions in why they reject gene-editing, as well as reasoning by those who do not follow a religion or believe in God, such as Atheists. Although there are many different versions of the principle, such as the positive, negative, strong and weak, I will be using this definition for my paper.
“The precautionary principle aims to influence decision‐making in contexts where some human activity poses uncertain but potentially grave threats”.(Koplin et al., research fellows with Biomedical Ethics Research Group, University of Melbourne).
This principle would argue similar ideas as nonmaleficence and informed consent because we do not know the long-term effects, other than that many of the effects will likely be bad.
Gene-editing is a complicated issues; a deep dive into the doctrines of Christanity, Judaism, Islam and Buddhism showed the many diffferent angles to look at it. By examining sacred texts, themes and rituals, I was able to look at the commonalities between the different religions to see where they split in their opinions on gene-editing. Lastly, I explored the difference in wording that religions use, either gene-editing or genetic manipulation. I will share how religion impacted my personal opinion and my thoughts on gene-editing in the next section.
I do not believe that it is ethically permissible to use gene-editing technologies to eliminate diseases, including editing cells to make them HIV resistant. I believe that the human genome is sacred, which aligns with a view of Christanity, and that it is not our place to manipulate a human’s genome, even if it will improve their quality of life. Although I understand that using gene-editing technology could create a new generation resistant to the AIDS epidemic, I do not believe that it is the best way to solve the problem; but I will acknowledge that it is a way to solve the problem. If we use gene-editing technology to help the new children being born, we would be neglecting the crisis that is happening now; it could be interpreted as a passive solution. Although there is a possibility that an increased use of gene-editing technology for HIV resistance would lead to an exploration of new treatments for those who are currently HIV positive, I do not believe that any new treatments would be able to be effective enough to solve the current epidemic.
I also think that eliminating genetic diseases or diseases like HIV would create large equality issues because there is no feasible way to allow everyone access to this technology that prevents us from falling down the slippery slope towards a new eugenics movement. I take the consequentialist approach to the issue because I do not want the effects of overpopulation and the future where all humans are genetically manipulated. However, I also think that we cannot let this technology go to waste; we need to create strict universal regulations (preferably led by the United Nations) that clearly say what is and is not allowed with gene-editing technologies. By definition, regulation can limit autonomy because all regulations are a form of paternalism, so how do we have strict regulations without limiting personal autonomy?
My proposal for potential United Nations regulations are: the use of gene-editing technologies is permitted for medical purposes only.
While I personally do not believe that it is ethical to use gene-editing technologies, I believe that our Brave New World will conclude that it is ethical. This will prevent the technology from going to waste and will help provide people with a better quality of life.
The proposal would outline every condition that is allowed to be treated with gene-editing technology. This would make gene-editing be based on medicine, rather than an argument about possibly improving quality of life because quality of life is subjective.
It is hard to determine what a good quality of life is, however, many people can agree that a life that leads to premature death is not a good life. However, there are still some cases of medical gene editing that would be eliminating genes to create resistance, rather than to allow for that child to live. An example of this would be gene-editing for HIV resistance because even if one of the parents has HIV, there is a high probability that with proper medication, the child will not contract HIV.
For example, one could argue that having more intelligence could improve quality of life, but there is not a medical need for gene-editing to be used in that case; these regulations would protect against wrongful use. The procedure to edit the genome of an embryo would only be permitted in a facility approved by the United Nations to ensure safety for the embryo. Medical insurance companies would not be required to cover the gene-editing procedure, but they may cover it if they choose. All gene-editing requests and procedure reports would have to be submitted to the United Nations and reviewed by a board and court system created just to manage gene-editing technologies. This board would be an authoritative body of the United Nations whose only job is to control gene-editing technology. The board would also keep a record of the people in our world living with genome edits.
While all the ideas that are vital to making an informed decision on whether or not to use gene-editing technologies seem only to be relevant in our Brave New World, they have actually been present since the dawn of modern medicine. We have already been selecting children based on their medical conditions with the use of abortions and pre-natal testing. But gene-editing is different because it is more exact and can create a perfect child, rather than just scan for the best.
An example of this is Down Syndrome: 92% of the time that a fetus tests positive for Down Syndrome through chorionic villus sampling the pregnancy is terminated, likely because the parents did not want to bring a child with Down Syndrome into the world. While the parents might have aborted the pregnancy because they were concerned about the quality of life of their child, we still cannot overlook the fact that we are already discriminating against those with a medical condition that we think of as “abnormal”(“CRISPR Explained”, Wired).
Regardless of personal opinions and thoughts on the ethics of gene-editing technologies for disease prevention, we have to acknowledge that we have this innovative new technology at our fingertips. This brings up the question of just because we can, should we? Opinions on gene-editing will always fall on a spectrum and we will all never agree. But we should not just let this technology go to waste. In our Brave New World, we have the power to manipulate human DNA, a molecule formerly thought to be the most powerful in the world. As our understanding of the technology and our ability to use it improves, it could be possible that we could do whatever we want, even beyond curing disease. It seems as though our Brave New World is also quite terrifying.
The very creation of gene-editing was such a breakthrough for biological engineering. In my opinion, it’s similar to the creation of penicillin and its rationing during World War II: the creation of penicillin was criticized and only soldiers had access to it in the beginning, but as time went on, more civilians gained access and the inventors of penicillin won the Nobel Prize for their life saving invention.
As I mentioned above, I believe that we need to have strict, universal regulations to prevent us falling down the slippery slope. In 2015, there was an International Summit on Human Genome Editing in Washington D.C. where scientists met to share their thoughts on what we can do with gene-editing technology, but how to go about it in an ethical manner (Holdren). One of the ideas raised at the summit was how we will not know if we start to fall down the slippery slope until we hit the bottom. In 2015, the Obama administration announced that they are in support of gene-editing, but that they still have reservations about how to ensure the technology is used ethically.
“The White House is infully support of a robust review of the ethical issues associated with using gene-editing technology to alter the human germline. The Administration believes that altering the human germline for clinical purposes is a line that should not be crossed at this time”(John P. Holdren, Director of the Office of Science and Technology Policy, White House)
In 2018, there was a second International Summit on Human Genome Editing in Hong Kong China, from November 27-29 in 2018. He Jiankui announced just one day before, November 26, 2018, that he had successfully used gene-editing to create two HIV resistant twins (Marchione). He was scheduled to speak at the summit, which was where he shared his scientific process, the successfully edited genome of the two girls and hinted that “‘another potential pregnancy’ of a gene-edited embryo was in its early stages” (He Jiankui via BBC). This is another place where He faced backlash from other scientists and ethicists.
“‘If true, this experiment is monstrous. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer’”(Juilian Savulescu, an ethicist from the University of Oxford).
We all need to remember that we are all just children on a playground; sliding down the CRISPR slides and swinging on the Cas9 swings. Regardless of which of the religions we side with, we all need to remember that once we take that first jump onto that slide, there is no going back or stopping until we hit the bottom. And if we don’t know what our future holds in this Brave New World, we definitely do not know what the “the bottom” is. It might just be too horrible to imagine.