Karen-Sue Taussig's research has taken her into an uneasy realm of scientific smoke and mirrors. It is only when cultural influences on science are exposed, she says—when the great and powerful Oz is revealed to be, in the end, a man behind a curtain—that we can begin to understand the American love affair with genetic research.
Photo by Leo Kim
Taussig, a medical anthropologist, finds cultural values and power relationships at every turn in her examination of the human genome project, the multi-million dollar research project that has yielded revolutionary new insights into the genetic code of human beings.
Taussig recalls the project's earliest stages, when Nobel prize-winning molecular biologist Walter Gilbert was traveling around the country trying to generate support from the public. “He would pull out a CD-ROM and announce, ‘This is you'—suggesting that a human genome could be encoded onto a single electronic device. Gilbert's dramatic demonstration appealed to certain cultural assumptions he shared with his audiences, including the assumption that life is reducible to molecular biological terms.
Genetic research projects like the human genome project thrive, Taussig says, in an individualist culture that values self-discovery, self-actualization, and immortality. By reducing everything from eye color to intellectual aptitude to the level of alterable genes, genetic researchers appear to promise to make controllable that which once seemed out of our reach. “The idea that we are free to choose our biology feels empowering," Taussig notes.
These values and expectations are so ubiquitous, she says, that it's easy to miss how profoundly they affect our thinking about what counts as science and what kinds of projects we choose to fund.
They also leave us vulnerable.
“People are sold a bill of goods," Taussig says. “Scientists claim that there will be these dramatic interventions into human health." But reality doesn't always match up. “Every single gene therapy trial has failed utterly," she notes.
Taussig doesn't oppose the genome project and the genetic research it has spawned. “Intellectually, it is incredibly interesting science," rife with the potential to advance human health, she says.
But she can't help but point out that support for such flashy science sometimes means forgoing less glamorous, but more reliable, scientific strategies for improving the lives of those who need it most.
“If we really wanted to improve the health of Americans, we'd have more early childhood health interventions, universal healthcare, nutritional programs, those kinds of things," she says. “And if we wanted to improve the health of the world, we'd have universal vaccination, mosquito netting for malaria prevention, simple things that are inexpensive but take political will."
Just as Schurman hopes her work will help move scientists toward greater self-reflection, Taussig wants to encourage citizens to reflect more about the forces that shape our perspective about what science is, and can do—and what it isn't, and can't do.
We have such a faith in science in the United States," she says. “I want people to realize that there is a politics to science."