Who Are We Now? Genetics, Genomics, and the Question of the Human

“We used to think our fate was in the stars,” quipped James Watson in a Time magazine piece announcing the Human Genome Project (HGP). “Now we know, in large measure, our fate is in our genes.” Scientific insights and technological developments have been propelled by humans’ insatiable curiosity about ourselves and our world, and the HGP—with the goal of mapping the human genome—grew out of that curiosity. A complete sequence of human DNA would ideally contribute information leading to significant advances in medical research and treatment as well as new insight into human history, both collective and individual. But that information, as many critics warned, was not risk-free. The risks and possibilities captured the public imagination, as scholars, journalists, and artists all grappled with what discoveries might emerge from the research and how they might challenge what it means to be human.  

Scientific research and technological innovation take place within social and geopolitical contexts, and such contexts are never free of biases, values, and assumptions, both explicit and implicit. Watson’s statement hardly reassured those concerned about the potential misuses of the genetic information emerging from the HGP. His words exacerbated concerns about genetic determinism—the misuse of genetic information arising from the belief that genes completely determine or control human characteristics and behaviors—which would reinforce and create new cultural biases. The 1997 film Gattaca expressed these possible outcomes in its depiction of a world in which an overreliance on genetic information creates a new underclass. Similarly, prompted by research in the early 1990s around alleged “gay genes,” the 1993 play The Twilight of the Golds explored whether such a discovery would be more likely to diminish or increase homophobia through its portrayal of a gay man whose pregnant sister and brother-in-law contemplate aborting a fetus with such a gene.

History is rife with examples of how scientific information has contributed to cultural biases. Although genetic information promises many benefits, it also requires consideration of its potential misuses. For example, information about the genetic contributions to human disease has significantly advanced medical research and treatment. However, such information can lead to profound invasions of privacy. It has the potential to be used for questionable forensic purposes (as in racial profiling), for example, or to discriminate against individuals with a predisposition to disease (as in the withholding of insurance coverage). The interpretation of genetic information can help potential parents make decisions about a pregnancy prior to or following conception. Those decisions also have serious implications, however, as disability studies scholars have argued (and The Twilight of the Golds dramatizes), for how human lives are valued. A health care system that reflects social inequities, such as in the United States, moreover, raises questions about who has access to the benefits emerging from genomic research. Many of the developments emerging from that information are inaccessible to the most disadvantaged groups within the population. It is therefore imperative to ask how genetic information is collected, who has access to it, and who has a say in how it is ultimately used. 

Genetic information has also contributed to the history of humanity by offering new insights into human migration patterns and, in the process, has revolutionized ancestry research. But here, too, that information has emerged within particular cultural contexts and is subject to interpretation. It is crucial to remember that—and how—genomic information circulates in a racist society. Many indigenous communities, for example, have objected to how information collected for medical purposes has been used without tribal consent for other purposes by scientists who have failed to understand cultural differences in conceptions of property and privacy. Scientists have used the information to challenge accounts of tribal history and to justify the desecration of ancestral burial grounds. Genetic information cannot emerge in a vacuum, without consideration of who gets to tell the larger story of human history, and what values and hierarchies are reinforced as a result. What consequences follow when the results of a genetic test are interpreted to mean that someone’s racial or ethnic profile does not conform to the identities in which they are invested?

The essays in this collection consider these questions as they draw on methods in the humanities, such as literary criticism, to explore the variety of ways in which genetic and genomic research has contributed to new ways of understanding the human and humanity. The first set of essays explores epigenetics, the study of how non-biological factors, such as environmental inputs, modify the expression of genes, without changing the DNA sequence. Often seen as a corrective for genetic determinism, because its central premise is that varied outcomes can arise from the same genetic starting point, epigenetics, as these essays show, risks other forms of determinism. They demonstrate that science cannot fully or effectively challenge cultural biases, assumptions, and values. The second set of essays focuses on how genetic information about the human engages—sometimes to challenge but more often to reinforce—those biases, assumptions, and values, and the third explores how a more rigorous consideration of questions of justice might change research practices.