Abstract:
As technology continues to develop, scientists are able to use these advancements to find new ways to improve life. With the developments in CRISPR/Cas9, people have started to think about using this technology to edit the genes of humans to prevent different disabilities and diseases from spreading to future generations. This has led to the idea of having designer babies, where the children’s genes are hand-picked. Though this may seem appealing, the social, ethical, and socioeconomic issues should be considered before the technology continues to develop. As this is still in the developmental process, the Hollywood film Gattaca creates a society where designer babies are a reality. The film exemplifies the possible issues. Additionally, it is important to consider past scientific issues in the medical fields such as the novel Immortal Life of Henrietta Lacks which illustrates different issues that should be considered during the progress of designer babies. As the future for designer babies will happen, society should attempt to sort the possible situations before furthering the development.
Main questions addressed in paper:
What is CRISPR/Cas9 and how can this technology be used for designer babies?
How do the ethical and socioeconomic issues in Immortal Life of Henrietta Lacks relate to possible issues that can arise with designer babies?
What are the possible issues that need to be addressed before further development of this technology?
As this technology is still in its developmental stages, how has the fictional film Gattaca addressed the issues people should consider before further development of the technology?
Keywords: CRISPR/Cas9; designer babies; ethical implications; socioeconomic issues; social issues; technology development; Gattaca; Immortal Life of Henrietta Lacks
Introduction:
As a society, we strive to improve the quality of human life constantly. With the advancements in technology, especially with CRISPR/Cas9, people have realized that a society with designer babies is no longer a fantasy. However, people are too focused on the ideal of such a society, ignoring the possible future issues. Thus, as a society continues to fund for the development of this technology, people must consider the social, ethical, and socioeconomic issues that may arise when designer babies are a reality.
Technology:
As technology continues to improve, these improvements open up more possibilities. CRISPR/Cas9 is the new cutting edge technology that can potentially be used for designer babies. Francisco Mojica discovered CRISPR, which “is an adaptive immune system” (Broad). CRISPR-Cas systems naturally allows for bacteria to fight against viruses. “CRISPR sequences bookend short stretches of DNA that bacteria have copied from invading phages, preserving a memory of the viruses that have attacked them in the past” (Broad). In 2010, “Moineau and colleagues determined that CRISPR-Cas9 creates double-stranded breaks in target DNA at precise positions, 3 nucleotides upstream of the PAM (Garneau et al., 2010) (Broad). They also confirmed that Cas9 is the only protein required for cleavage in the CRISPR-Cas9 system”. Additionally, in 2011, Feng Zhang used the single RNA guided protein instead and focused on trying to develop CRISPR/Cas9 to be used in human cell editing. In 2013, it was determined that the “first successful demonstration of Cas9-based genome editing in human cells in what has become the most-cited CRISPR paper” (Broad). Thus, “Cas9 could be targeted to a specific location in the human genome and cut the DNA there. The cut DNA was then repaired by inserting a new stretch of DNA, supplied by the researchers, essentially achieving ‘find and replace’ functionality in the human genome” (Makarova). This process exhibits how the scientists are making progress with the technology.
Visual depiction of the process.
According to Makarova, CRISPR/Cas9 is divided into three different stages. The first stage is “adaptation stage, short pieces of DNA homologous to virus or plasmid sequences are integrated into the CRISPR loci”. The second stage “in CRISPR–Cas-mediated immunity is expression, during which the long primary transcript of a CRISPR locus (pre-crRNA) is generated and processed into short crRNAs”. The third step “is interference, during which the foreign DNA or RNA is targeted and cleaved within the proto-spacer sequence”. The development of this CRISPR/Cas9 is critical because of the implications it may have for designer babies.
In 2015, China was the first to modify an embryo using this CRISPR/Cas9. In the experiment that was conducted, researches “injected 86 embryos with the Cas9 protein and left them for two days to allow the gene-editing to take place” (Knaption). In this experiment, “of the 71 embryos that survived, 54 were genetically tested. This revealed that just 28 were successfully spliced, and only a fraction of those contained the replacement genetic material…found a number of unexpected mutations in genes which should not have been affected by the technique” (Knapton). Thus, these tests show that this technology is not yet developed but is on track for future developments to prevent such happening. Because of these results, British biologist Edward Lanphier, told Nature “we need to pause this research and make sure we have a broad based discussion about which direction we are going here” (Knapton). With this progress, the scientific society is hopeful that the technology will soon develop. However, it shows that this technology is dangerous because it can directly change the genetic makeup for all future generations. Mainly, this technology is developing for gene edits that would be able to remove different life threatening illnesses. However, people can realize that this technology does not need be limited to editing genes for a purpose; rather it can be used to create the perfect human, one with no flaws. Overall, we need to take a step back and weigh the ethical, social, and economic issues that will arise with the future development for designer babies.
The Immortal Life of Henrietta Lacks
As the technology for designer babies is improving, society has to remember the importance of evaluating the past medical advancements as reference for the future. In Rebecca Skloot’s The Immortal Life of Henrietta Lacks, Skloot traces the ethical, social, and socioeconomic issues that happened as a result of Henrietta Lacks’s cells being taken without her consent. Though this is not directly related to gene editing, this novel can be used as a historical lens as it highlights the issues that society needs to consider before further technological developments for designer babies.
In the past, people of color were viewed to be less worthy, especially women of color. Thus, it was common for their body/body parts to be used in experiments. Henrietta, an uneducated African American woman, fit this category and was taken advantage of during a vulnerable situation when she was seeking cervical cancer treatment. Her doctors, who were white, deemed her illiterate and thought that she was not capable of making informed decisions about her health. Rather than attempting to explain how and why her cells could possibly be beneficial for the scientific community, they felt that they had the power to make this decision for her. This is a possible issue that can arise for designer babies, especially during the experimental testing stages. As this technology needs to be perfected before it can be accessible to the public, many experiments must be conducted. The people who consent to participating during these experiments need to be willing to place not only themselves but also their embryos at risk. Though the trends in society have changed to be less prejudiced, the racial stigma is still present and people of color may be more likely to be targeted as what happened in this novel. Thus, the developers must be mindful, especially during the testing stages, to not segregate society.
Furthermore, Henrietta and her family have never been compensated for her “donation”. Though thousands of lives have been saved with the help of Henrietta’s cells, her family continues to live in poverty, unable to afford health care and benefit from their own descendants. Surprisingly, direct descendants of Henrietta are living without health care. When Henrietta’s grandson, Lawrence, went to the hospital, his doctor was thrilled that a descendent of the very cells that revolutionized the medical industry was in his office. However, after the visit, he was charged with a huge bill that he could not afford. It is ironic that he could not afford to use Henrietta’s cells considering they are his grandmother’s cells and he is connected to her and those cells genetically. Like Lawrence was unable to benefit from his grandmother’s cells, it is possible that the people who contributed to the progressions with designer babies are also unable to afford and benefit from it. If someone were to contribute to a significant scientific experiment, some form of compensation should be provided. However this was not the case, especially during that time period. Recently though, people who are looking for a simple way to make money agree to be part of experiments. However, these people are usually from lower socioeconomic standing, which brings to question whether the individual actually wants to contribute to the scientific community or it is out of necessity that they are agreeing to allow experiments conducted on them. Either way, the participant must completely trust the researcher has prepared a safe and meaningful experiment that will cause them no harm. This power dynamic can be viewed as a struggle between the rich and poor, and also links to racism, as was seen in this novel. While the Lacks family continued to live in poverty, other families, mainly white families, were benefiting from Henrietta’s contribution. This is a possible situation with designer babies. The families that help contribute to the future development of the technology may not be compensated while the doctors and researchers continue to profit. This also brings up a situation in which the families who contributed to the research development may not be able to afford to use the technology to edit future generations’ genes. Though Henrietta’s cancerous cells were extraordinary, her family did not sense them as an accomplishment as these cells did not bring any additional benefits to their lives; rather they brought more hardships, a possibility with designer babies.
Additionally, there was a lack of education regarding how these cells work, especially amongst the communities with fewer resources. Thus, the people with high educations and understandings of what Henrietta’s cells were able to use their knowledge to further their use of her cells for development while people like Henrietta’s family had no understanding of what was happening. For a period of time her family thought that she was still alive in the labs at different places, when in reality it was her cells that were continuing to grow despite her death. This shows a lack of communication about the technology to people, which is also a possibility with designer babies. When the technology is developed it is possible that people will not be well informed about why and how this technology will be used, which can be problematic.
Ethical, Social, Economic Issues:
With the issues related to Henrietta Lacks in mind, it is important for society to consider different situations for what a future with designer babies’ entails. If the technology were to become readily available today, it is clear that are many issues that will create great chaos in society. As more and more families are open to idea of selecting their children’s traits, the scientists and researchers are most reserved to introduce this new technology to the world. People who are working towards developing the technology are the ones worried for the future, while the general population is craving for a society in which they have the ability to play god and decide their children’s future. As the scientists are interacting first hand with this technology, they have an insight and a better understanding of what can come from this technology. With their expertise not only in the technological aspect but also their understandings of possible societal settings, their suggestions to be cautious need to be considered. This confirms how there are many problems for a future with designer babies and these issues must be considered during the continual technological advancements.
As the technology is still not well developed, it is hard to predict exactly how it will affect mothers and the babies. Thus, the damages inflicted upon embryos throughout this process is the first ethical dilemma that faces the use of this technology. It is possible during these tests that there will be a “destruction of embryos [which] implies in some of these techniques revives the well-known controversy on the principle of respect for human life and the related issue of the status of zygotes, embryos, and fetuses” (Report of the IBC). It is important for us to determine how society views embryos, as there is a possibility that embryos can be destroyed. Therefore, “the ethical issue surrounding the use of human embryos for scientific research, and associated concerns around creating designer babies…[and] the fact that this editing went so wrong in so many embryos” (Report of the IBC). It is also possible that the technology can cause the key components that make people unique or even connect the baby to its parents genetically to be removed. Though the technology is meant to remove and replace the base pairings, it is possible that different sections can also be edited or the genes will continually be edited. With this much uncertainty, it is hard to determine what will actually happen, but it is important for society to decide on “Protection of whom [reference to the embryos]? If seen as mere property, the embryo would have no “health” to protect. If seen as a potential life, then the embryo would have an interest to be balanced against that of the parents, though that interest would not be as strong as that of a full person” (Ossareh). Therefore, it is complicated to proceed with genetic testing experiments without determining this fundamental concept yet.
Who has the right to decide what characteristics are better than others? Though this technology is originally developed to remove traits for diseases like tay-sacs or cystic fibrosis, people will want to change every possible flaw which leads to designer babies. Thus, it is hard for society to determine which traits are meant to be removed. It is possible that the qualities society deems unfit make someone unique. By having these qualities edited out, there will be no individuality as parents who want their children to be the best now have the means to make to achieve this. Additionally, people state it should be the parents’ decision to select whether they would like to edit their children’s genes. However, parents may not always be thinking about their children’s future when making these decisions, complicating this issue.
With the ability to use technology to select the babies’ genes, the socioeconomic gap will increase. The wealthy will have more opportunities to use this expensive technology, while people who are unable to afford editing genes will have to go through the natural process and have a greater chance for their children to have disabilities. Even if costs are subsidized, it cannot be free especially for the initial years. Also, companies, especially medical and insurance companies, can use this new technology as a venue to increase prices which will it harder for people in lower income brackets to use this technology. Thus, the rich are more likely able to pass their desired genes to their children whereas those with less money will not be able to edit their children. This creates a vicious cycle where the rich will continue to have more and more opportunities and their children as well, furthering the economic divide. This is dangerous because it will be nearly impossible to decrease the societal economic gap.
This also raises a global issue. It is more likely that western civilizations will have the means to advance this technology, making it easier for that country to provide gene editing opportunities and have the chance to become superior, while people in third world areas will continue to have children in the natural ways, furthering the societal divide globally. This global divide will cause a repeat of history where the third world countries continue to live in poverty and are used by the first world countries. Moreover, if one country allows for gene editing and another does not it is likely that everyone from the country that does not allow editing will travel to the area that allows it thus giving the country that allows editing more funding. Thus, in the US it is stated that “those allowing direct genetic modification of embryos have been subject to minimal treatment by legislative and regulatory bodies in the United States. This lack of regulation and oversight is problematic, for it could leave access to these technologies vulnerable to future state regulations that could either ban or curtail their use”. Additionally, this brings up a cultural issue. If certain cultures have more accessibility to this new technology, it will create a further cultural divide in society and increase the cultural debates. Thus, to prevent an increase in cultural tensions it is important to consider how different cultures consider the idea of playing god and using the advancements in technology for genetic benefits.
Additionally, the standards in society will change if the ability to edit genes becomes a reality. As people have the opportunity to advance themselves, the norms of society will increase. However, it is very likely that people who do not have their cells edited will not be able to compete with those who did because of the standard changes. Thus, having genes edited, will completely shift society. “Not only would genetic enhancement take away from human dignity and even humanity itself, but many philosophers and sociologists also claim that it will become a ‘vain pursuit of perfection,’ causing a greater gap in society between the ‘haves’ and ‘have-nots,’ or rather the ‘ideal’ and ‘non-ideal’ humans”. Thus, before the technology becomes fully developed and on the market, it is best for us as a society to determine the best way to keep the norms of society equal so people who do not have their genes edited can still have the same opportunities as those individuals who did. Is there a chance to have the norms of society be standardized, as it is not even possible in this day and age? Or will this technology continue to further divide the rich and poor even more that in society there will be a clear distinction? With these complex questions, it is hard to realize what exactly should be done.
Gattaca
Even though Gattaca, directed by Andrew Niccol, is a fictional movie that was released over 20 years ago, the ethical and social implications it presented are relevant to this day as technology continues to improve. The movie follows Vincent, a man whose unedited genes deem him as an invalid in society, on his successful journey against the world that labels him worthless and Jerome, a man whose genes were edited but the pressures of society were too much for him to handle. Through the relationship between Vincent and his family and Vincent and Jerome, Gattaca is able to portray a discriminatory society that should be prevented when the technology becomes a reality for our society.
In this society, there is a clear distinction amongst the people who had their genes edited and those who did not, even within the Freeman family. Freeman’s decided that they wanted their first born child without any modifications but were soon disappointed when Vincent was born with subpar genes and a heart condition that would limit his level of success in society. For their next child, they decided it was not worth the risk. This created a clear division in the family as the parents succumbed to societal views and chose to focus more on Anton, their younger son, as they realized they had created Anton to meet the standards of society and he had a shot for a bright future. They continually told Vincent that he was not good enough, discouraging him and never making him feel part of the family. Though it is often stated that parent do not pick their favorite child, in this family it is clear that the parents preferred Anton. Likewise, there was a clear distinction between the brothers as if each one knew his place. The brothers had a swimming competition called “Chicken” where each other would swim as far as he could in the ocean and back. This competition was clearly designed for Anton to win as Vincent had physical limitations. As the movie develops, we see Anton repeatedly winning until there is a change. In this scene, Vincent saved his brother from drowning and won the competition. This made him realize that he is not limited to societal standards and has the possibility to be successful.
Additionally, this film raises the question whether parents should be required to use the technology or not. As stated earlier, the Freeman family decided to take a risk and leave the genetic make of their first child up to faith but after their disappointment with their first child, they decided it was not worth it. Thus, this raises the question if the technology is available and you are able to afford it, are required to use it? If the parents decided to have Vincent’s genes edited, his life would have been a lot simpler as he would have had more opportunities. However, this was not the case as his parents took a leap of faith and made a decision that ultimately changed his life. It is possible that Vincent disliked his parents as they had the opportunity to provide him a lifestyle in which he would not have been viewed as insignificant by them and even struggle this much in society. He would have had the opportunity to explore the world filled with possibilities rather than being told he was not capable of achieving anything. Thus, this shows how many factors parents need to consider, financial aspect, risk if it is worth the risk the child’s future in such a discriminatory society, and how their relationship with their child will be affected based off of their decision.
Furthermore, this societal division is carried into the workforce. Vincent has a dream of becoming an astronaut but because of his heart condition he does not meet the minimum genetic requirement. In this society if you do not have your genes edited, you would not be able to meet the requirements to hold high end position. People with lower genes are left with the occupations other people do not want, as Vincent was only able to attain a job as a janitor. There is a clear distinction in this society and with the constant and random drug tests to determine the identity of the individual, the discrimination is even more prevalent. Thus, this causes a further division in society as those who had their genes edited are more likely to attain higher end job and can afford and provide for their children, while those who do not have their cells edited will be left behind. Even if society attempts to make things equal as people’s genes will be edited for the better, the standards in society will increase thus causing people with below average genes to be at great disadvantages as they will have less opportunities, as Vincent was.
Unlike Vincent, Jerome was a designer baby created to be the best swimmer. This distinct edited quality was, in his mind, the sole purpose for his life. When he came in second place for a swimming competition, he was unable to tolerate the failure. He thought that if he was created to be the best swimmer, he should be the best. His inability to cope with this loss causes him to jump in front of a bus and is paralyzed from the waist down. This exhibits that even if you have your genes edited, it does not characterize who you are. Jerome had a false impression that he could do nothing more than achieve his parent’s creation of being the best swimmer, when in reality he should have the choice to live his life how he wants to. However, he did not understand this concept and felt like he no longer had a purpose in life. This just illustrates that people who are designed to be a certain way will have a hard time preserving after they are no longer able to do that.
As Jerome lost his purpose for life, Vincent was striving to achieve his dream. Vincent decided to purchase Jerome’s identity to pass the genetic tests to become an astronaut. Though both men were physically different, Vincent went through different changes to match the structure of Jerome. Additionally, he would have blood and urine samples to pass the genetic tests. Though it is illegal to take someone’s identity, Vincent had no other option in this society that was so heavily focused on the genetic makeup of the people. In the end, before Vincent heads off to the space shuttle, there was one last DNA test he did not prepare for. The doctor passed Vincent even though he knew Vincent did not meet the criteria as he stated “all that they promised but then who know what he can do”, which implies that his son is also considered an invalid. This indicates that he acknowledges the fact that society discriminates based off of genetic makeup against those who are subpar but these people with lower qualities have the potential to achieve greatness as well. The doctor gives him the validation he needs that he has the possibility to be successful despite his genetic make-up, something he has never had even from his parents.
Even though designer babies will create a new form of discrimination amongst people, individuals do not need to be limited to societal views and have the possibilities to create their own future. Vincent was constantly told that he could be nothing in this society that cared only about genes but was able to overcome the obstacles he faced and wrote his own destiny. Jerome, on the other hand, was told that he had to be the best swimmer and was held to a different set of standards that he could not meet. Neither man was content with how they were viewed to be in society. Because this is a Hollywood film, Vincent had the assistance of Jerome and the doctor during his journey. However, in reality many people do not have this opportunity and will have to continue their lives as invalids, taking the jobs no one else wants while admiring those succeeding from a distance. Thus, through this movie it is very evident with the advancements in designer babies, there will be a clear division in society. In the end, the movie is able to balance two cases in which society made a path for the people, but in reality each individual should be able to make his/her own choice on what they can achieve. This issue is very complex because people need to consider different hypothetical situations before the development but no one knows for sure what the future holds.
Conclusion:
It is hard to say for certain what exactly the future holds. However, with current trend and motivations in society, it is very likely that CRISPR/Cas9 will continue to develop, giving people hope for a future in which parents have the ability to play the role of god and choose their children’s traits. However, this idealistic mindset can be detrimental to society as there are many issues related to designer babies before the need to be dealt with. Through the issues of The Immortal Life of Henrietta Lacks and the film Gattaca, society should prepare so that history doesn’t repeat itself and there is a society heavily based on discrimination. Instead of focusing on achieving perfection, people should strive to develop a technology that will benefit all people, not create future issues. There is no right answer to whether there should be a world with designer babies or not. Instead, it is up to society to decide as a community what is the best way to address the issues that will impact the future.
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