In her piece below, our new Editor, Nikki Alexander, brings together findings from fellow intern Brian Earle's showcase project on The New Eugenics by Judith Daar, with discussions the Advocate Genetics internship had during a watch party of the 1997 film Gattaca and the role genetic counseling has in shaping dialogue and conceptualization about the uses of genetic testing. What seemed to be sci-fi then is a real possibility for a dystopian future if we're not careful. . . (Psssst. . . this one is absolutely still worth a watch even 25 years later!)
Imagine a world where reproductive technologies are not only sophisticated and widely available, but are also considered the norm. In fact, it is rare and risky to have a child conceived naturally, and these children face social and employment barriers in their adult lives.
This is the world of Gattaca, a 1997 film investigating the implications of genetic engineering. While a society like this was considered science fiction at the time of the film’s release, recent advances in reproductive technologies make a future like this more plausible. The doctors and scientists in the film described their procedures as simply giving the child the best traits from their parents, but what began with good intent transformed into something much more harmful. As the naturally born main character Vincent describes it, the society of the film “now [had] discrimination down to a science.”
With the rapid advancement of reproductive technologies and genetic engineering capabilities, it is important for us now more than ever to recognize the possible implications of these technologies. To avoid a future like the one that Gattaca predicted, we must be willing to have serious and open conversations about genetic discrimination, eugenics, and how genetic counseling can prevent these dangerous practices.
A Perspective on Eugenics from Judith Daar
Twenty years after the premiere of Gattaca, legal and medical expert Judith Daar released her book The New Eugenics: Selective Breeding in an Era of Reproductive Technologies. In it, she describes eugenics as “the effort to improve the human species by inhibiting reproduction of ‘inferior’ genetic strains” or promoting the reproduction of individuals with desired traits. Although eugenics is viewed negatively today, many renowned scientists, including the co-creator of human in-vitro fertilization (IVF) Robert Edwards, were proponents of the practice. Edwards is quoted as saying, “We are entering a world where we have to consider the quality of our children.”
This view is eerily similar to the views of Gattaca’s society, although while Gattaca predicts eugenic practices will arise from wide accessibility of advanced assisted reproductive technology (ART), Daar claims that a modern age of eugenics is more likely to rise from unequal access. The high price of ART, which averages around $12,000 per IVF cycle not including other associated costs, makes the technology inaccessible to low-income families that are more likely to be minorities due to systemic, historical issues with the distribution of wealth in America. This inaccessibility means that by the nature of the system, higher-income families that are majority white are able to afford ART that allows them to reproduce, while more diverse low-income families are forced into childlessness.
Minorities experience a “greater incidence of infertility, a lower rate of treatment-seeking, and overall worse health outcomes” due to factors including systemic racism and historic mistreatment. Issues of access that stem from cost and social infertility also affect groups like single parents and members of the LGBTQ+ community, who are often excluded from state mandates on insurance coverage for ART. The traditional view of family that is expressed by insurance coverage may also harmfully extend to ART providers and further prevent certain groups from family-building. Darr highlights that while 59% ART providers agree that “everyone has a right to have a child,” 70% agree that “it is acceptable for me to consider a parent’s fitness before helping them have a child.” This introduces the influence of a third party in reproductive decision-making, which is a hallmark of eugenics.
Finally, eugenics and the fight for disability rights and inclusion are often at odds with each other due to the “disability critique,” which argues that selecting against disability stands in the way of a society where those disabilities are fully accepted. Daar argues that selection against disability is not yet eugenic in our world because it is not inherently coercive, meaning that it is still the personal choice of the parents. However, Gattaca shows a world where it has become coercive in that parents are pressured by society and medical professionals to select against disability. How can we ensure that the eugenic practices of Gattaca remain a tale of science fiction rather than a prophecy of our future?
Responsible Genetic Counseling
Ultimately, in order to avoid eugenic practices, it is essential that a parent’s decision to have children or utilize other reproductive technologies like prenatal genetic testing (PGT) is their own, not their provider’s or their society’s decision. This is where the value of genetic counseling lies. Genetic counselors should explore their patient’s background and wishes and help empower them with the scientific information they need to make decisions that are best for them. Genetic counselors can help patients decide whether the use of reproductive technologies is right for them without judgment, persuasion, or pressure.
This is in contrast to the geneticist in the world of Gattaca, who tells Vincent’s parents that he “[took] liberty of eradicating any potentially prejudicial conditions'' in the DNA of Vincent’s future genetically engineered brother, despite the parent’s expressed wishes to “leave a few things to chance.” In this society, the use of reproductive technologies has become coercive and obligatory, and what started as a tool became a weapon of discrimination. While some of the pioneering scientists behind advances in the field of genetics adopted eugenic standpoints, it is the responsibility of genetic counselors to stop this cycle and champion the personal choices of their patients, as well as advocate for equitable reproductive healthcare access in underserved communities.