How IVF began a new wave of discourse and perspectives on reproductive healthcare
Since the birth of the first “test-tube baby” in 1978, in vitro fertilization (IVF) has transformed the landscape of reproductive medicine. For the first time, people who could not conceive naturally were no longer constrained by their biological limitations. IVF introduced a new paradigm in which reproduction could occur outside the body, forcing society, medicine, and ethics to reconsider what “natural” reproduction meant. The technology also reshaped how individuals plan families, allowing them not only to overcome infertility but to anticipate future health challenges and make proactive reproductive choices. IVF marked the start of a new era in which reproductive freedom expanded beyond biology and into biotechnology.
Preimplantation Genetic Testing
The widespread adoption of IVF created the foundation for preimplantation genetic testing (PGT), which allows embryos to be screened before implantation. With PGT, individuals and couples gained unprecedented control, not only over when to conceive, but also over the genetic characteristics of future children. After the completion of the Human Genome Project in 2003, PGT became far more powerful and precise, enabling clinicians to test embryos for thousands of genetic conditions. As the technology matured, clear classifications emerged:
- PGT-M for monogenic disorders (e.g., cystic fibrosis, Tay-Sachs),
- PGT-A for aneuploidy screening, and
- PGT-P for polygenic traits such as predicted disease risk or complex traits.
Notably, PGT-P is only legal in the United States, making the country a major destination for reproductive tourism and raising global ethical questions about trait selection (Harper et al, 2012).
Benefits of Reproductive Health Advancements: Tay-Sachs as a Case Study
Tay-Sachs disease is a fatal neurodegenerative disorder caused by mutations in the HEXA gene, most common in Ashkenazi Jewish, French-Canadian, and Cajun populations (Lubinsky, 2023). Before the advent of IVF and genetic screening, Tay-Sachs carried devastating consequences and occurred at significantly higher rates in these communities. The introduction of carrier screening in the 1970s, followed by IVF combined with PGT-M, dramatically reduced the number of children born with the disease. Today, Tay-Sachs is one of the most powerful examples of how reproductive technologies can prevent severe genetic disorders and reduce suffering. It demonstrates the potential for genetic tools to serve clear medical goals when applied responsibly.
The Flip Side of Freedom of Choice
However, the same technologies that helped curb Tay-Sachs also revived difficult questions about eugenics. Historically, Tay-Sachs was misused as evidence in discriminatory ideologies targeting Jewish populations. With IVF and PGT, individuals and clinicians now face decisions that blur the line between disease prevention and trait selection. While eliminating severe genetic disorders can reduce harm, using similar tools to select traits risks reinforcing biased definitions of what counts as “normal,” “healthy,” or “desirable.” The challenge lies in determining where medical benefit ends and social preference begins.
Preimplantation Gene Editing and the Future
Gene editing pushes reproductive technology even further by enabling direct modification of an embryo’s DNA. Tools like CRISPR-Cas9 make it technically possible to correct pathogenic mutations, enhance certain traits, or even introduce new genetic changes. The most well-known example is the controversial case of the CRISPR-edited babies born in China in 2018, which sparked international backlash and calls for strict regulation (Westcott and Zhuang, 2016). Today, gene-editing embryos remains illegal in most countries, but research continues in areas such as preventing monogenic diseases or improving embryo viability. Policymakers, ethicists, and scientists are actively debating what kinds of edits should be allowed, who should access them, and how to prevent misuse as the technology rapidly advances.
Ongoing Ethical Discourse on Gene Editing
As we fast approach the approval of gene editing services for mainstream use by the general public, discourse has begun by biologists, healthcare professionals, tech leaders and ethicists about the potential harms and benefits of such technologies along with guiding policies surrounding the safe and proper use of the technology. The purpose of this website is to simply extend an analytical approach to this wider field of discussion so before continuing on with our analysis, we recommend reading this section on where the field currently stands and the ethical considerations to keep in the forefront of your mind as you interact with our project.
After the shocking news that the tool was deployed in human embryos to create HIV-resistant children in China even though the kids themselves didn’t have the disease in order to avoid the strong stigma around the disease in China, it became clear that use-cases and appropriate terms of the tool would need to be defined. This led industry leaders to even call for a moratorium on germline editing until the ethical intricacies are resolved. So where are we on the moratorium?
Proponents for the moratorium and skeptics of gene editing services are concerned about the potential harm of using the tool for enhancement of human abilities beyond medical needs. The nontherapeutic use of gene editing services to enable parents to have children with increased intelligence, physical ability or specific physical features has raised moral concerns about what is considered “desirable” in a child. Along similar lines of thinking, others are concerned that such choices would negatively impact such “designer babies” by setting unrealistic expectations about the power genes hold in being able to control and govern such traits. Another popular argument put forth is the idea of exacerbating existing social inequities by creating a pseudo race of enhanced humans who are those who can afford such technologies and services while others fall behind in their ability. Many consider this to be a slippery slope into eugenics (Rubeis and Steger, 2018).
Proponents of gene editing services argue that technologies that can help in the human mission of continual improvement and that the use of gene editing is in the natural course of human responsibility to employ new technologies for our benefit. Furthermore, proponents believe that the ethics of such technologies ultimately boils down to the autonomy of parents to determine the fate of their children. They argue that genetics, just like decisions such as extra-curriculars, schools and nutrition, are components of a child’s being that are best decided by parents since they are most likely to think in the best interest of the child (Anomaly, 2025).
Our project builds on this work by creating tools to interrogate and provide examples and counter-examples to the claims put forward by proponents and opponents of gene editing services, specifically the claims that gene editing services are motivated by social ideas of desirability and not medically desirable traits and that genes have the power to alter traits of an entire population.
Our Project
USA is one of the only countries in the world offering Preimplantation Genetic Diagnosis for Polygenic traits (PGD-P) and is on the path for rolling out preimplantation gene editing. Such services make the country a hotspot for reproductive tourism. As we head straight into a new era of reproductive technology, it is imperative to consider the long-term implications of such tools. Historically, the ability to modify genes along with the field of statistical genetics has been shrouded in eugenicist ideology. Similarly, the technology behind gene modification has been implicated in driving the transhumanist movement ahead, where gene editing could open the doors for human “enhancement” to create a new generation of “super” humans with heightened physical, mental and intelligent abilities. Such ideologies are often challenging to decouple from the medical benefits the technology could bring to a population. In this project, we aim to educate potential consumers about the medical benefits of PGD, as well as the potential harm and discriminatory social ideologies that surround it, using a two-pronged approach. Firstly, we built a machine-learning model that can identify for consumers whether marketing material for these gene-editing and PGD-P services is treating diseases and disabilities as a medical need or a social need (eugenics/transhumanist territory). Secondly, we aim to empower potential consumers and beneficiaries of the tools with an understanding of the future population genetics implications of PGD using a statistical-based simulation of genetic selection. We hope that the presentation of the two approaches through an accessible platform will allow the public to make informed and well-rounded decisions about their reproductive journeys.