In the early twentieth century, racism, ableism, and social Darwinism found an abhorrent intersection in the practice of eugenics. Eugenics was a scientific movement to “improve” the human genome through horrific methods such as euthanasia and forced sterilization [1]. In Nazi Germany, these practices were used as a tool of the Holocaust. In the United States, they were used against marginalized groups such as those with disabilities or people of color [1]. These practices were based not only on the terrible devaluation of human lives, but also the incorrect belief that all human characteristics were easily attributed to genetics [1]. This “science” was claimed to be the justification for eugenics. The quantification of this was often through IQ tests, which eugenicists used to claim “feeblemindedness” if the scores were low enough [2]. Thus, using genetics to select against lower IQ scores was one of the facilitators of an incredible injustice – one that is, unfortunately, newly pervasive in the ever-growing field of genetic engineering.
Today’s era of biotechnology poses an eerily familiar ethical dilemma. It has been almost twenty years since we first sequenced the entire human genome [3]. We know countless associations between genes and disease. And, to some extent, we can predict the chances of outcomes for embryos based on these associations [4]. The subjects of these genomic predictions range from health to intelligence, although the predictive power is far from one hundred percent [4]. Nevertheless, some companies have already begun to use these predictions for in vitro fertilization (IVF) through embryo selection based on polygenic scores, or ESPS [4]. But assigning value to certain traits over others – such as intelligence – and then proceeding to artificially select for them begins to sound analogous to a very dark part of our nation’s history.
ESPS is a new, underdeveloped technology, and has had several concerns surrounding both its biological and ethical consequences. These concerns were brought up in a study recently published in the New England Journal of Medicine. The study, “Problems with Using Polygenic Scores to Select Embryos,” claims that selecting against one gene could have inadvertent, deleterious repercussions on many other traits [4]. Conversely, in selecting for one trait, scientists might also unwittingly select for unfavorable ones [5]. This study also points out that much of the research for ESPS has been done on the genetics of adults with European ancestry, meaning that the predictive power will be far lower for anyone who doesn’t fit that description [4].
ESPS does have some beneficial purposes, as do many ethically-charged biotechnologies. For instance, it can help screen against Tay-Sachs Disease [4], which is an incurable disorder that leads to fatality around age five [6]. Yet, the aforementioned article published by the New England Journal of Medicine says that even “ethically appropriate” selection (against traits associated with mortality, for example) brings into question issues of unequal access. The article claims that even this “would probably exacerbate existing disparities in health owing to factors such as economic inequality [and] racism,” [4]. However, it is a different matter in instances of terminal illness that have been empirically proven to be linked with a specific genetic mutation, such as Tay-Sachs Disease. This is certainly a fine line on which to ethically balance. But, in avoiding the use of this technology, would we really condemn a child to death on the basis of the previous argument?
Nonetheless, ESPS has developed outside of being used as a determinant for fatal genetic disorders. In particular, Steve Hsu, founder of the company Genomic Prediction, is a proponent of selecting against intellectual disability, which is associated with low IQ scores [7]. He argues that of the embryos created during IVF, the majority will be selected against anyway, based on something as simple as the embryo’s shape – so why leave this selection partially up to chance [7]? Why should parents not want to lower the likelihood of disease for their child? This is arguably ethical for cases of serious illness. However, selective reproduction based on something like IQ scores is essentially comparable to eugenics. Furthermore, it is well established today that IQ tests are poor markers of intelligence anyway because of their inherently complex, biased nature [2]. Yet the most important concept to consider is that intelligence, regardless of how measurable, is hardly a determinant of one’s quality of life [7]. Selecting against intellectual disability reinforces an idea that disability rights activists have been fighting for decades: that traits which lead to disabilities are somehow “less valuable” than others – that the life of someone with a disability will be less valuable than others [8].
Eugenics constitutes a dark time in the history of biomedicine. As our society moves away from this period into one of biomedical beneficence, we are obligated to pay special attention to anything that is reminiscent of this past. And while Genomic Prediction seems to have yet to provide this kind of intelligence reporting as a service on their website, we must be extra cautious in navigating this technology which intersects so dangerously with the tragic history of eugenics.
References
1. National Human Genome Research Institute. (2021, December 1). Eugenics and scientific racism. Retrieved March 4, 2022, from https://www.genome.gov/about-genomics/fact-sheets/Eugenics-and-Scientific-Racism
2. Martschenko, D. (2017, October 11). IQ tests have a dark, controversial history - but they're finally being used for good. Business Insider. Retrieved March 4, 2022, from https://www.businessinsider.com/iq-tests-dark-history-finally-being-used-for-good-2017- 10
3. National Human Genome Research Institute. (2020, December 22). The Human Genome Project. Retrieved March 4, 2022, from https://www.genome.gov/human-genome-project
4. Turley, P., Meyer, M.N., Wang, N., Cesarini, D., Hammonds, E., Martin, A.R., Neale, B.M., Rehm, H.L., Wilkins-Haug, L., Benjamin, D.J., Hyman, S., Laibson, D., Visscher, P.M. (2021, July 1). Problems with using polygenic scores to select embryos. New England Journal of Medicine; 385 (1), 78. Retrieved March 4, 2022 from DOI: 10.1056/NEJMsr2105065
5. University of Southern California. (2021, June 30). Report sounds alarm on efficacy, safety, ethics of embryo selection with polygenic scores: A multinational team of researchers describes the limitations and risks of the new service. ScienceDaily. Retrieved March 4, 2022 from www.sciencedaily.com/releases/2021/06/210630173622.htm
6. National Organization for Rare Disorders, Inc. (2021). Tay sachs disease. Retrieved March 4, 2022 from https://rarediseases.org/rare-diseases/tay-sachs-disease/
7. Adler, S., Cusick, R., & Walters, P. (2019, July 25). G: Unnatural Selection | Radiolab. WNYC Studios. Retrieved March 4, 2022 from https://www.wnycstudios.org/podcasts/radiolab/articles/g-unnatural-selection
8. Ouellette, A. (2011). The Struggle: Disability Rights versus Bioethics. In Bioethics and Disability: Toward a Disability-Conscious Bioethics (Cambridge Disability Law and Policy Series, pp. 12-46). Cambridge: Cambridge University Press. Retrieved March 4, 2022 from doi:10.1017/CBO9780511978463.003