Imagine living in a world where parents no longer rely on chance for a healthy, intelligent child-but instead design one. Through the rise of new medical advancements, technologies such as CRISPR allowed for this once fictional concept to become a reality for many. Designer babies create the pathway to an advanced society, promoting traits that will enhance our way of life. This new innovation offers the potential to enhance human traits and eliminate long lasting generational diseases that have impacted society for centuries such as Huntingtons and Sickle Cell Anemia. In America, in the CHOP and UPenn hospital facilities, doctors had come together to collaborate and create a new treatment through the usage of CRISPR technologies. This breakthrough led to promising results in genetic blood disorders like beta thalassemia, marking a major step in personalized and impactful medicine. While these innovations present groundbreaking possibilities in disease prevention and human enhancement, they also raise critical, ethical, social and regulatory concerns.
Designer babies present potential benefits and significant consequences depending on individual ethical perspectives and the ways they were used. Designer babies have been an upcoming issue as technology is expanding with its power growing in strength. In 2018, a Chinese scientist produced two designer babies through the process of gene editing. This event alone, had created both an uproar of criticism and support from people all over the world. However, this is not a new practice. Eugenics were often used in nazi concentration camps and even in the USA way before designer babies emerged. People questioned whether designer babies were a harm to society and if it was truly humane to conduct such procedures that allow mere men and women to edit genes. Since then there have been many debates and discussions from all over the world trying to decide whether this is a harm or benefit to our society. Various instances display designer babies improving human life and getting rid of life threatening diseases. However, countless parents and scientists have been questioned with conducting these procedures in an inhumane way, seeking their own benefits and creating big changes in gene sequences. While some view gene editing as a promising tool for medical progress others worry for its long term impacts on societal development and ethical consequences. This meta-analysis paper on the ethics of designer babies research paper will cover the benefits and the consequences of using designer babies and a current event of using genetic modification on children.
Ethical Justifications for Designer Babies
Designer babies are one of the greatest medical advancements society has created. They possess various features that make them desirable, but one of the greatest features is disease prevention. Many people are born with hereditary diseases, which are not easily curable and require money to cure. According to the World Health Organization (WHO), genome editing in humans has the potential to address significant health challenges that are impacting different ethnic groups such as HIV and sickle cell anemia. The WHO has also stated that it has the ability to enhance cancer treatment options, making them more effective. For instance, in 2019, an American woman named Victoria Gray was the first patient to be treated by CRISPR. Victoria Gray was diagnosed with sickle cell anemia from a young age and had countless treatments. In this specific treatment, researchers and doctors edited her cells to produce healthy blood cells. These advancements can potentially get rid of inheritable diseases before a child is born, which also reduces the financial burden on families. Moreover, many clinical trials led by companies, such as Vertex Pharmaceuticals, have successfully treated inherited blood disorders. Research has shown that these trials have demonstrated a higher success rate for patients in their fight against these diseases compared to the traditional methods used in the past. Study shows that 90% of the patients with sickle cell and thalassemia no longer require the traditional treatment methods such as transfusions, which can often be costly and difficult to access in low income areas.
Beyond disease prevention, genome editing gives parents greater reproductive autonomy and ability to improve their child's quality of life. A breakthrough in technologies like the Preimplantation Genetic Diagnosis (PGD) enable parents to make informed decisions and changes about their child's genetic traits before birth. Through PGD, parents now have the opportunity to choose traits for their child. Expecting parents can use Preimplantation Genetic Diagnosis to help them pick desirable traits and edit their child's DNA sequence — giving them full autonomy over their choices and child. These advancements allow parents to decide what traits they want to pass on and what they want to change. Further allowing parents to prevent diseases and other disorders as mentioned before. Through these innovations, parents can reduce the risk of various disorders that may affect their children by preventing it from passing on, including those linked to mental health conditions like ADHD. This will also lower the likelihood of depression developing in patients. Additionally, genome editing can help prevent the transmission of autosomal diseases that are a result of genetic conditions. In addition to designer babies preventing diseases, parents are also given the option to pick different traits and features ranging from their child's hair color to their different characteristics. Reducing the risk of genetic disorders may help prevent various different mental health problems that may result. This also reduces the cost of different therapy sessions for their mental health and treatments for their disease. In these ways, gene editing technologies like the PGD redefine reproductive freedom and expand possibilities for future generations.
In addition to disease prevention and reproductive autonomy, designer babies provide improved outcomes in reproductive treatments such as IVF. For example, in the United States of America, approximately 95,860 births occurred via in vitro fertilization (IVF). IVF success rates for women 35 or under have a success rate around 55% whereas women in their 40s can only expect a 7% success rate. These statistics highlight the challenges and uncertainties surrounding IVF, showing that even though IVF may be a combat against infertility, positive outcomes are never guaranteed. Furthermore, these treatments are costly and require multiple rounds of treatment to find success, where in some cases they often yield uncertain results. However, using Preimplantation Genetic Testing (PGT) along with IVF, allows us to evaluate healthy embryos. This allows parents to select healthy embryos during IVF treatment that guarantees success rates. Not only does this improve success rates, but this technology reduces the cost and the emotional strain on the family. Moreover, PGT reduces chromosomal abnormalities by identifying aneuploid chromosomes that can cause miscarriage and other conditions. Aneuploidies include Trisomy 21 associated with Down syndrome and Monosomy X which is associated with Turner's syndrome. Identifying these abnormalities earlier reduces any risks in the pregnancies and ensures a safe and healthy baby. As discussed earlier, successful IVF outcomes promote less strain mentally and financially on different families who are trying to conceive but are having difficulties. It reduces the need to go on multiple different rounds of IVF which can be costly, especially for families who struggle financially. Technologies like the PGT, give families of different socioeconomic backgrounds better opportunities to conceive a child if they are struggling. Ultimately, combining PGT with IVF not only improves clinical success but also expands access to reproductive health, paving the way for a future where starting a family is more achievable- regardless of medical or financial barriers.
Ethical Objections to Designer babies
While designer baby technologies offer various different medical and reproductive benefits, they also raise significant ethical concerns, particularly regarding genetic and societal diversity. Critics fear that giving parents the power to choose traits may be a modern form of eugenics. Many researchers have argued that these technologies are a threat to human diversity and evolution through the unnecessary power these innovations grant. Giving parents full autonomy over their child's traits comes with a price. Allowing parents to select traits often leads to bias in those considered ‘desirable’ in society, such as intelligence and appearance. Bioethicist Sonia Suter warns, “If certain traits—e.g., short stature, gender, certain body types, etc.—can be selected against and are widely disfavored, individual choices, in the aggregate, may lead to fewer people with those traits. The resulting lack of diversity may be problematic in several ways.”(Suter) This highlights the risk of losing certain traits when parents begin to pick traits that are widely accepted by society, eliminating disfavored traits. It is a prevalent aspiration among parents for their children to achieve success and align with societal standards. In their pursuit of this objective, many parents engage in intentional design choices regarding their children, aiming to cultivate successful outcomes. This approach, however, may contribute to a reduction in diversity within the population, as favored attributes are prioritized over those considered "undesirable." Furthermore, a reduction in diversity may foster increased prejudice against individuals with disabilities or unique characteristics. This phenomenon arises when a majority of the population comprises highly advanced individuals, which can render those with disabilities perceived as an inconvenience. The Berkeley Law Journal further reinforces this thought stating “It may contribute to a lack of tolerance for diversity and enhance prejudices against individuals with the particular trait. As fewer individuals possess particular traits, we may increasingly think about those individuals in terms of their traits or disabilities, rather than for who they are.” As we become less exposed to different people and traits, our drive and desire to develop and find new treatments may decline, leading to a stagnation in medicine.
In addition to reducing genetic diversity and creating prejudice, designer baby technologies threaten to widen the gap between different socioeconomic groups. As these innovations become more available, they will be more readily accessible for the wealthy populations who can afford the treatments, creating a divide between those who can afford genetic enhancements and those who cannot. In society wealthier populations have greater access to medical advancements which can be utilized for genetic enhancements. This will further impact the associations with certain traits and inequities fragmenting an already vulnerable society. For example, in a study published by Nuffield Council on bioethics, it focused on warning that genome editing may become a “Luxury” where they may be only available to the wealthy. This results in increased inequality among generations. This new found social inequality may result in genetic discrimination and bias. If they are edited and have qualities that are desired they will receive more opportunities than those who are “naturally” born without any discriminations, further reinforcing the class distinctions. People with access to different technologies can edit their child to meet societal needs and beyond, creating more than capable people. As time goes on, a genetic upper class may evolve from the enhanced health education and job opportunities leaving more people behind who do not have the money to afford it. Additionally, Third world countries will continue to lag behind the top countries such as America, who have a profound amount of access to various different advancements especially in healthcare. They will continue to struggle to grow in power and reach full potential. Their populations will also struggle in finding new jobs as there are more advanced populations reducing the need of immigrants. This unequal access can create a society where success, health and intelligence are predetermined by wealth, further entrenching privilege and making upward mobility more difficult for marginalized groups.
Beyond ethical and social concerns, designer baby technologies also carry the risk of unpredictable outcomes, both in terms of individual health and long-term genetic consequences. Various technologies may have unknown risks that come alongside with its use. Germline editing may have dangerous consequences if it’s not carried out properly, meaning it was not conducted under scientific standards or screened properly through each step. One small mistake during the gene editing process may create uncommon consequences such as various disorders like diabetes. A harmful mutation arising from an unintended event has the potential to generate dangerous diseases that may be transmitted across future generations, for which a viable cure may not be attainable. Gene editing technologies approximately have a 70.4% success rate, highlighting how these technologies are not 100% accurate. There remains a significant chance of unintended and potentially life-threatening risks. Embryos edited during clinical trials either show abnormal development or a short life, indicating high risks involved in manipulating early-stage life. An example of the dangers of gene therapy can be found in the case of He Jiankui, who edited the genomes of twin embryos without properly screening for unintended mutations that could have occurred during the therapy. He therefore violated scientific and ethical standards. Moreover, studies suggest that CRISPR-based editing can create genetic stress, further elevating the risk of cancer. These unpredictable outcomes highlight the need for caution, regulation, and continued research before editing an embryo for safe and widespread use.
Current Event
Recently, in a groundbreaking collaboration between the University of Pennsylvania (UPenn) and the Children’s Hospital of Philadelphia (CHOP), a significant medical advancement has occurred with the remarkable case of KJ. KJ is an infant born to parents, Nicole and Kyly Muldoon, who suffered from a rare metabolic disease known as severe carbamoyl phosphate 1 (CSP1) deficiency. KJ had spent his first few months in the hospital searching for treatment. Ahrens-Nicklas and Kiran Musunuru were the lead researchers who were able to target Kj’s variant of CPS1 in his first few days of life and develop a base editing therapy. Before this Ahrens-Nicklas and Musunuru were collaborating to study the practicality of using customized gene therapy methods for various genetic disorders. In this particular case, researchers developed a base editing therapy specifically designed for KJ, using lipid nanoparticles to deliver it to the liver and correct KJ’s incorrect sequences. Unlike earlier CRISPR methods of treatment that cut DNA strands, base editing allows for the precise change of an incorrect letter in the sequence to the correct one, reducing the risk of dangerous genetic changes. According to CNN, this approach not only enhances genetic modification but also provides a safer alternative for vulnerable patients such as KJ. This treatment has allowed KJ to thrive and continue to grow stronger without any major treatments that would require months to treat. Personalized gene therapy represents a significant advancement in modern medicine. It embodies a transformative phase in healthcare, particularly within the domain of genetic therapies.
Possible Solutions
In order to combat these problems that come along with designer babies, the creation of an ethical oversight body is highly recommended. The establishment of an ethical oversight committee will permit evaluations of procedures regarding gene editing and monitor different procedures conducted. This committee will ensure the safeguard of the patient is kept in consideration and their safety is prevalent. Informed consent is a major issue in gene therapies. However, If an effective committee is established then each patient can guarantee their privacy and researchers can ensure informed consent. The ethics committee will be composed of bioethicists, medical professionals and legal experts along with a patient representative. The committee will confirm all genetic engineering procedures meet ethical and scientific standards through rigorous review. Establishment of a committee has been proven to show success in creating ethical and scientific review. One notable example is the World Health Organization (WHO) establishment of a global, multi-disciplinary Expert Advisory Committee to examine the scientific, ethical, social, and legal challenges associated with human genome editing. Each committee under this was in charged with advising appropriate governance mechanisms at institutional, national, and global levels. Another prominent example is the Food and Drug Administration (FDA), a US government agency that is responsible for protecting public health. The regulation and oversight of gene therapies in the United States ensures that the Food and Drug Administration (FDA) possesses authority over germline interventions while prioritizing the long-term safety of both patients and the technologies involved. As emphasized before, these committees have protected the efficacy and the security of human and animal research.
Another solution to address the common concerns about designer babies is to promote ethical equality. One of the major concerns regarding designer babies is whether gene-editing technologies will be accessible to all socioeconomic classes. A significant concern is the wealthy class’s increased accessibility to these technologies, which provides them with greater genetic enhancements. Meanwhile, the low-income populations will have limited access to these innovations, reducing potential social mobility. Eventually, the bias will result in a new divide amongst different social classes based on the availability of gene therapy technologies such as CRISPR. In order to address these problems, it is important to make these procedures available to those who need them, regardless of their socioeconomic status. This will prevent any further genetic inequality and enhancements and widening of social classes. Healthcare systems should include approved gene editing procedures in public hospitals rather than private clinics. This further allows different groups to access these technologies at a cheaper cost. Public funding should be provided to families who show a need for medical interventions through gene therapy to seek help for various diseases. One prominent example of this is in the United Kingdom (UK). The United Kingdom's government has a "Point of Care Manufacturing” policy. These policies ensure that patients, no matter what socioeconomic background they come from, have access to these technologies by introducing these gene therapies in only hospitals. This allows gene therapies to become more accessible to various groups. Additionally, International organizations such as the WHO can make sure there is an equal distribution of technologies in various countries and provide funding support to those who especially need these technologies. For example, Sub-Saharan African countries often suffer from sickle cell anemia, a prevalent genetic blood disorder, especially with Malaria present. Sickle Cell Anemia is used as a protection against Malaria in these countries, both of which present significant health risks. If there is a distribution of technology in more impoverished countries in Africa, it will prevent many diseases and provide healthier populations.
Beyond an ethical committee and ensuring equal distribution, it is vital to ensure the public is well-educated about designer babies. Education is essential for a population to make the right decisions. Education provides the general public with the knowledge to make informed decisions that they will not regret later on. Parents must be educated about the risks and consequences of gene therapies and their benefits. This will reduce unnecessary gene editing on embryos and promote responsible use, reducing the misuse of designer babies. Additionally, discussions and public engagements are also important to combat issues with designer babies. Open discussions amongst the public and different scientists ensure everyone is heard and their questions are answered. They can publicly express their concerns and thoughts on gene therapies, and an educated scientist may answer their questions adequately. This also allows many communities, including the marginalized, to be better informed and make the right choices. According to ChristinaCares, “One video in the series includes a roundtable discussion with five young research scientists and a medical student who share a frank discussion about race, gender and their journey…They suggest that more inclusive environments in science and medicine can help build trust and eventually lead to the elimination of health disparities.” (ChristianaCare’s Gene Editing Institute and DETV Produce Video Series to Engage High School Students in the Latest in Biomedical Technologies). Open discussions can allow students and the general public to become more aware of the truths of gene therapies. The population would become more educated about the risks and benefits, promoting better decisions. Furthermore, it fosters an inclusive government. Education, as previously stated, is a solution for making better decisions and choices, especially amongst expectant parents before hasty decisions are made.
Opposing views
Although these solutions may seem effective they also have many counter arguments that people have presented. One major counterargument people have made is that people should have the right and the freedom to conduct designer babies if they please. Countries such as the United States of America (USA) and the United Kingdom (UK) have given parents full autonomy over their children. This is largely due to the country's positions in democracy and freedom for each individual. In the USA in particular, the constitution has given each individual their rights of freedom, including reproductive rights. The Constitutional protections according to Suter include "the right to the care, custody, and companionship of [the] child as well as the right to make decisions affecting the welfare of the child free from government interference, except in compelling circumstances”(Suter). This further secures the idea that parents have the right to make decisions free of interference from their children. Alongside that, there are no proven risks of gene editing on babies that could make this practice dangerous, rather parents can use this to a great extent to prevent any underlying genetic diseases. If parents are restricted from using designer babies with no basis in science, then it is questioning their autonomy. Some argue that restricting a parent from choosing whether or not to use gene editing procedures, is restricting their freedom of choice and limiting reproductive rights. Furthermore, when some countries begin to ban these devices it will create an unequal distribution of these materials and more advanced populations in the countries that include technologies such as these. Overall, banning or restricting parents from choosing what they want to do with their children, whether it's gene editing or another procedure, is questioning their autonomy over their child and their rights to make decisions for their children.
Another opposition towards the solutions present is the risk of bias and inefficiency especially when establishing a committee. A major issue with establishing these committees is recruiting efficient and talented experts. Authors Edwards and Omar state, “However, the literature reveals that REC members in low- and middle-income countries (LMICs) are lacking in expertise and have limited review competencies to conduct an ethical review of biomedical research or clinical trials”(Ethics Review of Research: In Pursuit of Proportionality). According to these authors, the members who have been recruited show a lack of expertise and knowledge in these fields. Members must have a proper understanding of designer babies and gene editing to make informed suggestions and judgments. Another concern with the establishment of
committees is the inefficiency and the lack of communication between multiple committees. According to Rulli who stated, “The ethics committees in Malaysia are scattered all across the nation. They do not communicate with each other. The same protocol may be approved by one of the committees but rejected by another.” It is important to note how existing committees have shown a lack of communication and unity among themselves. It is important to have committees that can work together and agree on a common cause to evaluate the extent to which ethical standards are applied to different treatments. If they disagree on the protocols, it may result in inadequate information and inefficiency on the part of the evaluation of these different procedures. Moreover, multiple different committees can result in delays in interventions and efficient oversight. Furthermore, bias is also fairly common in different committees. Scientists and ethicists who make up the committees may change or agree to a rule that would benefit themselves or someone they support. This will foster a greater selfishness and the desire for self-sufficiency. If committee members are not properly educated or trained, it may lead to inefficiency in evaluations, which can be critical if not conducted correctly.
Furthermore, there is a great concern about the oversimplification of the complex science of gene editing. Oversimplification is a result of the numerous attempts to translate the difficult science of gene therapies for the public. As we try to educate the public, we often oversimplify
and overlook important details to make it more public-friendly so they can comprehend it better. However, doing this causes many misconceptions and problems in the interpretation of the topic of designer babies. These misconceptions can lead to skewed perceptions of gene editing, regardless of whether the views are positive or negative. It can also result in fear and misguidance in the public depending on who and how they have presented the information. Many people without the proper knowledge can make hasty and dangerous decisions that they may regret later. The World Health Organization (WHO) in 2021 states, “A study published in EMBO Reports in 2016 analyzed media coverage of CRISPR-Cas9 and found that it was often portrayed as a simple and revolutionary technology, leading to inflated public expectations and misunderstandings about its capabilities and limitations.” The simple and positive way of presenting gene editing technology as seen in this paragraph led to misunderstandings in its limitations. In 2003, Nature Reviews Genetics published an article that discussed how gene therapy was frequently presented in the media as a near-term solution to various diseases, without adequately addressing the challenges and ethical concerns. Not educating the public about potential consequences may lead to misguided individuals making decisions that could be fatal. Moreover, we see many different educational types of communities like the marginalized failing to be taught the usage of such technologies as CRISPR. This creates a barrier to the accessibility of these technologies in different populations as they are not effectively taught how and what they are used for.
Conclusion
Ultimately, the science of designer babies represents the transformative and groundbreaking medical advancements of this era, offering hope for reducing genetic disorders and improving the life quality of people through new and improved treatments. However, the prevalence of more medical advancements that allow us to develop further, raises many concerns. These practices of gene editing on embryos develop ethical concerns such as creating social inequality and disparity that may result from the lack of accessibility. The increased use of gene editing technologies may also result in a reduction in genetic diversity and variation as parents begin to select desirable traits for their children, reducing “negative” traits. As emphasized before, when technology further develops, it is important to promote ethical oversight of different procedures to ensure responsible regulation, equitable access, and education of the public. Now we should ask ourselves, are we designing better humans, or simply designing away our humanity?
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