Information at the Intersection of the Public and Technical Spheres: A Reply to Majdik

The interface between biomedical experts and lay publics has been a focus for the rhetoric of science. Although scientific controversies create the space for renegotiating the relationship between sciences and their publics, all too often scientific and technical experts reassert control and reinforce the divide between science and non-science.¹ In a recent article, Zoltan P. Majdik argues that the rhetorical dynamics of direct-to-consumer (DTC) genetic testing disrupt that pattern: the micro-level interactions between a DTC genetic testing company and its consumers circumvents medical and scientific experts and allows laypeople “to render judgment about what meaning they want to assign to their complex genetic information, and about what action they want to take in response to it.”²

Empowering individuals to make choices about their medical treatment is desirable, and any practice that increases the opportunities for lay people to make choices should be lauded. Unfortunately, for-profit DTC genetic testing does not contribute to that goal. Although accessing genetic information without the imprimatur of medical professionals eliminates a potential constraint on lay publics’ deliberation on medical issues, the removal of that potential constraint does not improve lay people’s chances for deliberation and agency. Majdik reached the opposite conclusion because he creates a division between “information” and “meaning,” where “information” exists as a stable set of facts about which people produce “meanings” in the process of deliberation. Previous scholarship in rhetoric and science studies has highlighted the contingent and fluid nature of facts and has troubled dichotomies that separate information and fact from meaning and judgment. ³ Deliberation at the intersection of the technical, public, and private spheres is necessarily fraught with tension because facts as well as meanings are contingent. Rhetoricians must keep this in mind to avoid the pitfalls of treating statements adorned with scientific accoutrements as true and certain.

By treating information as stable and collapsing debates about DTC genetic testing into a struggle over meaning, Majdik elides the differences between clinical validity—the accuracy of medical tests—and clinical utility—the ability of a test to guide medical decision making effectively. The failure to address information’s contingent nature, represented in part by expert concerns about validity, elides the capacities of rhetors in this debate to prejudice the information circulating in the public sphere and renders lay deliberation on genetics farcical. I proceed as follows. First, I examine Majdik’s creation of a dichotomy between “information” and “meaning,” and how that dichotomy depends on an Aristotelian understanding of contingency. Second, I argue that this misperception of information finds its apotheosis in the examination of the policy debate about “clinical validity.” Third, I argue that displacing experts from the debate results in situations where DTC genetic testing companies have free reign to shape information about genetic tests to their own benefit, making deliberation by lay people a sham.

Information and Clinical Validity

The word “information” appears throughout Majdik’s examination of DTC genetic testing. By my count, the word is used 43 times, and the majority of these uses leave the truth value of this information unaddressed. Whereas the information might be “abstract,” “complex,” or “technical,” at no point is the veracity or accuracy of the information challenged. Information then becomes the antecedent for creating meaning: DTC genetics asks people “what meaning they want to assign to their complex genetic information.”⁴ The divide between information and meaning reflects dominant configurations of the technical and public spheres where lay people are recipients of fully formed, scientific truth.⁵ According to Majdik, “The move from biological certainty made visible through technology into the contingent social spaces that give meaning to the identities and lives of individuals requires the same kind of difficult judgment and decision making as health-related tests do.”⁶ The technologies produced by genetic science reveal information about which people have certitude, and the information becomes the basis for meaning when it moves from the technical sphere to the public sphere.

Medical meaning is constructed on the foundation of genetic information by processes of deliberation: “Engaging in...