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Rendering the Public Speechless

“Good Genes—Bad Genes?” was the title of a national congress for civic education held in Bremen (Germany) in early September 2003. The organizers, the Federal Agency for Civic Education4 and its Bremen branch saw the dawning of an era of genetic technology and considered it their duty to prepare the general public. The congressional announcement asserts that “the biosciences and biotechnologies are currently learning to understand, control, even improve fundamental life processes at a tremendous speed” (BpB, 2003, my translation). Thus the sponsors of the congress hoped to enable citizens “to be an active influence on the decision-making process” (BpB, 2003, my translation). To this end, they invited to Bremen three dozen high-ranking experts from around the world who discussed, among other issues, the ethical defensibility of stem-cell research, the church- and state- implemented eugenics program in Cyprus, and the responsibility of parents for their children’s genetic makeup.

For their part, the experts were clear about the cause of the lack of democratic participation: their diagnosis is that people are hopelessly backward where genetics is concerned. When it comes to DNA, heredity, and genetic testing, most people are ignorant and disempowered. They have opinions, but for the organizers and the experts, the vox populi is too unqualified. “Perceptions,” complained the director of the Bremen agency, but not “knowledge” currently shape the attitudes of citizens toward gene technology. And the director of Bremen’s Center for Human Genetics attributed reservations about his field to “misinformation”: unrealistic hopes, he declared succinctly, lead to unrealistic fears. Therefore he prescribed counseling and education for his fellow citizens to enable them to deal rationally with genetics.

Also, industry insisted on the need for an educated citizen able to participate in “democratic biopolitics.” What they hope to gain from this was made very clear by the pharmaceutical representative from Roche toward the end of his presentation: society, not industry, bears the “responsibility” for gene technology, he explained. “Society must decide what it wants to do with gene technology,” he demanded. In his presentation, it quickly became clear, however, that industry does not intend to simply subject itself to the will of the people. So far, he complained, people have lacked the “knowledge” and the “assessment opportunities.” Society, he made clear, must first be prepared for this new challenge. He literally said, “We must help society understand . . . We must explain to society how it should understand and how it must decide.”

The congress did not achieve the goal set by the Federal Agency for Civic Education. On the contrary, for the most part, a public debate failed to materialize. No discussion took place among the citizens attending the congress. Only a few members of the audience spoke after the presentations. Apparently, most listeners were rendered speechless. Although the presentations from experts were intended to stimulate discussion, they were not delivered in a manner that would be broadly comprehensible to laypeople but instead were peppered with specialized professional jargon. The speakers talked about “zygotes” before and after “nuclear fusion,” “chromosome aberrations,” and “genes for” various unknown diseases, as well as “disease probabilities,” “genetic dispositions,” and “risk carriers.” It was assumed that the starting point of a democratic discussion is not common sense but the scientific terms used in the discourse of experts. The conference discussed not Bremen citizens’ experiences, fears, and desires but scientific laboratory constructs and bioethical problems. Many presentations only touched on people and their experiences when the geneticists resorted to commiserating tales of woe to plead for research money and deregulation.

The Bremen congress is an impressive example of the attempt to educate citizens so they can attain greater self-determination in genetics-relevant issues. However, instead of dismantling barriers to democratic participation, the congress set up new ones. The organizers convened experts who explained that their professional knowledge is an essential precondition for a democratic discussion and that the entire population is consequently in need of counseling. Only those who are instructed by geneticists and bioethicists should have a voice about gene technology—in regard not to scientific but to social issues. The proposed topic of the congress was not the scientific perspective on gene function and DNA structure; rather, it was supposed to be the effects of a new technology on society. Precisely here is where the speakers denied their fellow citizens their capability and judgment. And in doing so, they undermined the basis for democratic discussion.

 
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