Keith Wailoo, professor of history and public affairs, on pain, genes and policy
Keith Wailoo describes his new book on pain as part of the Robert Wood Johnson Foundation's What's Next Health Series.
Keith Wailoo, the Townsend Martin Professor of History and Public Affairs and newly-appointed Vice Dean of the Woodrow Wilson School, is astonished by the power of genes—not only to shape life but also to challenge our understanding of it. In medicine, the study of genetics has created new possibilities in the treatment and prevention of diseases like Tay-Sachs, Cystic Fibrosis, and Sickle Cell. At the same time, DNA testing has yielded insight into genealogy and inheritable disorders. But as the science pushes forward, the findings are not always easily reconciled within our social milieu, as recent Supreme Court decisions—on the constitutionality of states gathering DNA evidence from arrestees, for example—bears out.
For Wailoo, retrieving and applying genetic information raises nettlesome questions not only for the individual, but also, and especially, for their community at large. As he explores in his recent book, “The Troubled Dream of Genetic Medicine,” various communities understand and deal with genetic disease differently according to their racial, ethnic, and cultural heritages. The implications, he argues, are not only for how we understand these groups—or, in some cases, how we stereotype them—but also for how we treat their members clinically. “How is it that the same methods being used on one disease could be a dream,” he asks, “and on another, a nightmare?”
As one example of success and controversy in genetic testing, Wailoo examines the history of Tay-Sachs disease in the Jewish community. As early as the 19th century, Tay-Sachs was identified to be highly prevalent among Ashkenazi Jews, earning it the label, “Jewish amaurotic idiocy.” By the 1970s no treatment had been identified, but diagnosis via prenatal genetic testing was available, enabling Jewish sects that permit abortion to mostly eradicate the disease. But for the Orthodox Jewish community that condemns the practice, alternative prevention was necessary. They started testing adolescent children as a means of identifying carriers—a practice which developed into a rite of passage known as Dor Yeshorim.
Since Tay-Sachs only affects a child if both parents are carriers, those with the Tay-Sachs genes would have to be restricted from marrying each other in order to prevent the disease from being inherited. This would be almost impossible to enforce in most communities, but in the Orthodox Jewish community it was rather straightforward. The Rabbi arranging the marriages would simply take the genetic information into account when making a match. The system worked until the 1990s, when Dor Yeshorim sought to expand testing to other diseases prevalent among Jews, such as Cystic Fibrosis, and still others with far less severe manifestations, such as Gaucher’s Disease. Controversy ensued, raising ire even among geneticists like current NIH director Francis Collins. Ultimately, the story of the Dor Yeshorim serves as a case study of the blurred lines between success and failure in how society applies genetics in the name of better health.
Wailoo draws on this example, as he writes in the book, because it is “a narrative of clashing values and perspectives in which ideals of genetic self-determination intertwined with deeply held religious values and notions of ethnicity and suffering.” He explains that Tay-Sachs among Orthodox Jews “also reveals how the very meaning of genetic disease varies by community, place, and time, and how the notion of genetic disease is integrated into broader and historically bound senses of self, identity, and group.”
Wailoo identifies as a historian, but he has come to his views on genetics and society through diverse training in multiple disciplines. As an undergraduate he studied chemical engineering. Interested not only in the basics of chemistry but also in the way science affects and is understood by society at large, he then earned a doctorate in the history and sociology of science. Seeking increasingly applied outlets for his intellectual passions, Wailoo took a job teaching at a medical school, and then at an institute for health policy. “You might say my disciplinary identity has always been in some ways firm and yet also blurred,” he says. If so, melding fields may have been necessary to “connect the historical picture to whatever contemporary discussions are going on.”
“Genetics has become so multi-dimensional,” Wailoo says. “Years ago, debate revolved around a small set of issues—recombinant DNA or cloning, for example.” In recent years, the issues have expanded dramatically. Now, in one of his courses, he covers intellectual property, at-home genetic testing, genetic testing and ancestry, gene ownership, the uses of gene information in criminal justice—the list goes on. “This question of where genetics fits in society has become increasingly complicated, involving the study of the criminal justice system, law, medicine, patenting, and regulation. Every year, we seem to be in a very different place and we need a widely array of approaches to understand policy trends.”
Such intricacies have helped shape the course, “Modern Genetics and Public Policy,” that Wailoo taught with Princeton President Shirley Tilghman. This critical perspective on science and public policy also sits at the core of other courses. Former students in “Race, Drugs, and Drug Policy” have attested to the value of his multidisciplinary approach in law school, medical school, and other endeavors. After taking a task force on New Jersey policy on anti-psychotic drugs in foster care children, a student went on to work in the field, emailing Wailoo to attribute her success to the course. “It was a really nice thank you,” he said. “It’s what you ultimately try to do: to prepare students for entering the world aware of the complex way in which science and medicine are translated into health policy.”
A world, to be sure, continually changed by genetics and other kinds of medical innovation. “I think genetic innovations and applications will keep us busy for most of the rest of our lives,” Wailoo says. “Until—and this is what the historian in me says—until their supplanted by another set of scientific developments and infatuations.”