During this project, I will be exploring the potential risks and benefits of continuing to implement germ-line editing into society. I will then provide some insight into how we could regulate genetic editing in the U.S. so that the practice of this technology is considered ethical to our population.
In an age where technological advancements are happening rapidly, and we are being able to do things medically that we could have never dreamed of years ago, there lies fear and hope in the possibilities of these new forms of technology. One of the most groundbreaking technologies in the medical world today is the ability to edit and manipulate genes to eliminate or enhance certain DNA. Currently, the technology could help cure several forms of cancer and blood disorders by eliminating mutations in the DNA. The leader of this technology is CRISPR, a technology that uses molecular scissors to target a section of DNA that needs “fixing” and either repair a gene, disable it, or insert something new. The controversy about this topic lies in the ability for this technology to edit genetics in a way that is not related to medical needs and could be used for eugenics. We are still trying to weigh the potential tremendous benefits and devastating risks against each other to come up with a solution to the ethical dilemma. The ethical question I posed for this topic was “Should genetic editing and manipulation be allowed? If so, to what extent?” The second part of this question is essential to the first because ethically, we could decide that genetic editing is actually beneficial to humans, however we might set limits to what is legal to do with it. For example, we could only allow genetic editing to help medical cases and things that will save people from harm, or medically benefit their quality of life in some way. Therefore, we could ban genetic editing related to eugenics and non health related causes.
This is an extremely important topic in the world because the development of genetic technology is accelerating faster than we could imagine, and a lot of its potential uses have already been made possible. We need to be discussing, debating, and researching the implementation of genetic editing into human life, or this technology could get ahead of us and the consequences could lead to global disaster.
Human genome editing: somatic vs. germline
The difference between these two types of gene editing is important to answer the ethical question posed at the beginning. The key difference between the two is that somatic gene editing targets an individual’s genetic mutations and the results are not passed down to offspring, whereas with germ-line. I will be focusing on germ-line editing specifically, as somatic is already fairly common in society.
Benefits Of Germ-line Editing
With germ-line gene therapy, we could get rid of specific diseases that result from genetics issues. According to the World Health Organization (WHO), there are over 10,000 monogenic diseases, meaning that these are diseases created from a mutation in a single gene. There are even more polygenic diseases, but these are harder to fix with the current technology we have which is best for targeting monogenic disease. Obviously there is a huge need to fix these diseases through genetic editing as that is currently the best way to do so. In terms of genetic editing related to babies, it could help families who have an extensive history of genetic diseases that will keep getting passed down generation to generation. Gene editing would lead to fixing other diseases that are much larger on a global scale, such as: obesity, diabetes, cancer, mental illness, and Alzheimers. The benefits that would come from this are incalculable. Because editing the genome of a future baby to eliminate a disease, the chances of their child having that disease are significantly decreased, which could ultimately lead to the complete elimination of a disease from a population.
This is a ted talk about the potential that gene editing has to eradicate diseases. It talks about the injection of mRNA as a “vaccine” in order to accomplish this https://www.ted.com/talks/tal_zaks_the_disease_eradicating_potential_of_gene_editing
Risks Of Germ-line Editing
The economic gap between the rich and the poor will inevitably increase as a result of genetic editing because of the extremely high cost of accessing this sort of technology. To use the CRISPR-Cas9 to just fix a single point mutation can cost anywhere from $15,000-$20,000. For vitro fertilization with gender selection for a future baby the cost can be anywhere from $15,000-$25,000 . Most people can’t afford these procedures, and insurance doesn’t usually cover it, so the economically disadvantaged are left to eventually become further and further disadvantaged, and the wealthy to keep accelerating ahead in society. The children of the wealthy will start to have biological advantages over the poor. This would eventually lead those advantaged children to ultimately be more successful in life and make more money, thus furthering the economic gap (more entrepreneurial, smarter, charismatic, heightened physical characteristics, and socially adept)
Probably the most dangerous risks would be the extremely high potential for eugenics if the technology gets into the wrong hands; people that want to eliminate certain characteristics they believe are inferior out of entire populations and races. We saw this earlier in history with the Nazis and then with social darwinism; people who want to apply artificial natural selection to populations, often races. Although it would start out on a small scale, this gene editing technology could ultimately result in full on, larger scale eugenics. Societal expectations of what the “perfect person” is supposed to look or act like will result in the pressure to create these “designer babies.” Overtime populations would begin to look like people who were the most privileged because of their access to the editing technology. Unregulated genetic editing combined with cultural values has the potential to move our society towards an “perfect” race.
Additionally, there are so many unknowns about germ-line editing and so many potential risks that we probably haven’t even thought about. In the CRISPR technology, the nano scissors could cut genes unpredictably. This could change the function of a gene responsible for keeping a cell from becoming cancerous or even cause other dangerous diseases. These mistakes in the cutting technology could affect further generations, leading to permanent changes in the genome. The effects would increase exponentially as people with these changes reproduce.
Relation to Principles of Bioethics
I think all of the principles of bioethics are relevant in this topic. First, I think a not so obvious underlying principle would be the principle of autonomy. If germ-line editing was to be allowed, this means generations would be effected by the editing decision one person made. I believe this would be a violation of the future generations’ autonomy because someone is making decisions about their body that maybe if given the choice they wouldn’t have wanted. The decisions one person makes has permanent repercussions on many future people without them really getting any right to ‘autonomy.’
The most obvious principles that come to play here are the conflict between beneficence and non-maleficence. In the short run, germ-line editing could prove beneficial to the health and quality of life to thousands of people by curing deadly diseases, and editing away mutations for disorders. However, on the other side we don’t 100% know the potential health consequences that could come from ‘messing with the system’ in the long term. There are some studies that suggest that there are some genes we consider harmful that actually are linked to other benefits like cognitive enhancement, for example. Also, after research we now know that our genetic makeup has a correlation to our environment, and since our environment is always change and could be vastly different in 150 years, we might end up needing genes we edited out in the future. In this case, non-maleficence would be relevant because we could be causing harm to ourselves in the future.
Lastly, the principle of justice could become a huge factor if germ-line editing becomes a common thing in society. Most likely, it would be a very expensive treatment to get done, thus limiting access to the economically advantaged and further widening the already large gap between the rich and the poor. As I discussed earlier, the risk of germ-line technology being used for individual enhancements would result in the wealthier children to be at more of an advantage in life, leading them to be more successful, make more money, and as a result digging an even deeper hole for the economically disadvantaged
How Should Germ-line Editing Be Regulated?
If we were to slowly implement germ-line editing into society, we should approach it with the purpose of satisfying each of the Governance Principles. The expectation would be for these principles to guide the regulatory process and allow for consistency across nations. Through a collaborative report between The National Academy of Sciences (NAS) and the National Academy of Medicine (NAM), they came to the conclusion that “human gene editing should be approached carefully and only to treat and prevent disease and disability.” The report also concluded that gene editing for any human enhancement purposes besides the one’s listed above, should not be regulated; at least not for now. They felt that we still have a lot more research to do before we can really know how this technology is going to affect the human race, and what the real potential harms are from a scientific standpoint.
After the consideration of the 7 principles, rules and regulations would need to be put in place on the safety and efficacy of this technology. However, with that we’d reach the issue of imposing on people’s ethical limits. The issue that we face with coming up with these regulations is that we don’t currently have ones for other medical practices that we’d be able to properly use as a step to go off of.
I have learned so much from this project, and I really enjoyed doing it along the way. With all of the information I have gathered, my opinion is that we should not implement germ-line editing into society, or not yet at least. Even though we know that there can be tremendous health benefits to this technology, we also know that there are huge risks, and there are still some risks that we don’t know much about or can’t predict yet. If there was someway to be able to regulate germ-line editing for the soul purpose of preventing disease and disability, I would support this. However, I think if this is something we come to as a society, it would be something that happens in the future, after more debate, research, and public census is done. Our main goal moving forward with this technology is to continue to improve the targeting of CRISPR while maximizing it’s efficiency. That should be the main focus of today’s world, not rushing to implement it into society.