The Genomics, the Arts and Popular Culture conference held at Duke last weekend focused on the depiction of genomic sciences by the mass media and popular culture and what the consequences of those portrayals mean to society. The collaboration of professors in English, health policy, medical ethics and genetics from Duke and Vanderbilt University was funded by a grant from the National Institutes of Health for a project called “Genetics in Literature, Film and Popular Culture.”
“The point of the grant was to bring together people who are doing work in the cultural analysis of genomics,” said Priscilla Wald, associate professor of English and women’s studies and co-organizer of the conference. “What we’re trying to understand is how mass media and popular culture are depicting science and what the consequences of those depictions are.”
The scholars at the conference expressed a desire for people to better understand the science so that future ethical debates are about the science rather than misconceptions of the science. “That is crucial before people can have not only the ethical conversations, but also the policy conversations,” Wald said.
Wald noted that one of the main misconceptions and fears that is often unfairly portrayed by popular culture is genetic determinism—that everything about us can be explained by our genes. “If people focus too exclusively on genomics and lose the social and environmental factors, we’ll be doing a great disservice to the public both upon issues of health and ethics,” Wald said.
From the Institute for Genome Sciences and Policy Dr. Hasan Shanawani reported on the issue of race in genomic studies, emphasizing that race has been often misconstrued by both researchers and the public.
“Sometimes science is shaped by biases, and our perception effects how we investigate,” said Shanawani, who has been studying how scientists are considering race in their research. Shanawani, a Fellow of IGSP’s Center for Genome Ethics, Law and Policy, has reviewed hundreds of publications in a major scientific database and has found that many studies often left out explanations for the genetic associations, as well as their methodologies. Shanawani explained this issue partly arises from researchers adding genetic components to their older research.
At the conference, scholars presented issues relating to research and society by analyzing books, reviews of films and studies on cultural narratives, focusing on the language, images and stories that circulate in society. “One of the things that we’re looking at is what are the stories out there that are teasing on biotechnology and are distorting the science,” Wald said. “For that, we have to read newspapers, movies, books and use the literary tools of analysis to show how science is being distorted.”
One of the scientific renderings with which Wald is specifically concerned is how genetic information affects privacy. “Will women be compelled to terminate pregnancies if they find out their child has cystic fibrosis?” Wald asked. “What will be the consequences of this information?
“It would be terrible if we were not asking these questions while we are doing this research,” she said.
The Center for Genome Ethics, Law and Policy shares the focus in the federally funded collaboration that sponsored this conference. “The role of this center is that we connect the science to the law school, the business school, the arts and sciences, and the divinity school,” Director Robert Cook-Deegan said. “We also connect the research to policy decisions by engaging with the policy making. It means participating in national discussions as speakers or panel members concerning the policy matter.”
Shanawani said Duke is well equipped to handle this collaborative, interdisciplinary work. “This gives you a chance to look down at everything all at once,” he said.
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