In "The History of Eugenics" (Issues, Spring 2016), Daniel J. Kevles rightly reminds us that many biotechnologies initially viewed as Frankensteinian, such as in vitro fertilization, eventually become commonplace. Whether or not CRISPR/ Cas9 will follow an analogous path of routinization remains to be seen, and will depend on complex issues of cost, feasibility, safety, accessibility, and social acceptability. To date, the ethical brakes on human germline modification have slowed but not stopped the process. Much like the Human Genome Project in the 1990s, CRISPR/Cas9 has sparked a strong current of optimism about the promise of genomics to ameliorate and possibly eliminate certain diseases. But what are the potential ugly undersides of such advances?
The eugenic past can be a useful compass when considering present and future uses of genetic technologies. The lessons are clear-cut when it comes to the overreach of governments, including the implementation of policies that compelled individuals to relinquish their reproductive autonomy. Compulsory sterilization laws, which were passed in 32 states from 1907 to 1937, and resulted in more than 60,000 reproductive surgeries, overwhelmingly performed on poor, undereducated, and minority women and men, epitomize this egregious facet of eugenics.
Human germline modification seems quite distant from the coercive practices that enacted discrimination against socially vulnerable groups based on ostensible genetic inferiority. But tethering definitions of eugenics too closely to the state can obfuscate the extent to which presumptions of fitness and unfitness can insinuate themselves into broader social value systems.
Responding to Kevles's interest in the increasing commercialization of biomedicine, we might ask how lessons from government-driven eugenics can be applied to the ethical quandaries associated with twenty-first century genetic and reproductive technologies, many of which arise as for-profit biomedical ventures. On one hand, when most couples incorporate genetic selection into their reproductive journey--via in vitro fertilization or preimplantation genetic diagnosis--these choices can be filed under the categories of personal privacy and reproductive rights. However, when genetic selection is approached from the perspective of disability rights and awareness, the slope becomes much slipperier and continuities between the past and present more visible.
The past few years have witnessed the dramatic growth of non-invasive prenatal screening, which allows fetal cells in the maternal blood, extracted through a simple blood draw, to be screened for chromosomal anomalies such as trisomy 21 or 13. Unlike the development of amniocentesis in the 1970s, which was built on partnerships between federal health agencies and academic medical centers, non-invasive prenatal screening entered the clinical domain as a commercial product, marketed by a small number of rivaling biotech companies. Disability studies scholars have criticized how glossy advertisements for Sequenom's MaterniT21 PLUS include only fair-skinned, picture-perfect babies, reinforcing the presumption that unfit babies, those with physical or intellectual disabilities, are undesirable humans. A 2015 scientific study estimates that from 1974 to 2007, pregnancy terminations based on trisomy 21 diagnosis (made using amniocentesis or chorionic villus sampling) reduced the population of individuals living with Down syndrome in the United States by approximately 30%.
If we want to ensure that history does not repeat itself, then we need to recognize how people with disabilities experienced discrimination based on eugenic ideas of human worth and contemplate how such prejudices might manifest themselves in contemporary public policy and medical marketing.
Alexandra Minna Stern
Professor of American Culture, Women's Studies, History, and Obstetrics and Gynecology
University of Michigan