Selling Certainty: Genetic Complexity and Moral Urgency in Myriad Genetics' BRACAnalysis Campaign

Abstract

This essay analyzes Myriad Genetics’ marketing of the BRACAnalysis genetic test to argue that the campaign creates a unique and problematic understanding of choice and decision making in the domain of applied genetic biotechnologies. The essay identifies how the campaign creates a subject position that invites audiences into a double bind of action and moral obligation, where specific decisions to make powerful medical choices become circumscribed as a necessity. A reduction and oversimplification of technical, scientific complexity replaces deliberative processes and phronetic understandings of complex situations and exigencies with intuition and feeling as warrants for action; in turn, a resultant appearance of empowerment becomes dialectically invested in an invocation of moral urgency and necessity.

Acknowledgments

The authors would like to thank the editor and the reviewers for their insightful comments, and the Jitters Scholarship Group for their feedback on earlier versions of the essay.

Notes

¹For a discussion of genetic testing for hereditary breast/ovarian cancer and the relation between moral choices, personal autonomy, and familial and civic obligation, see Lori d'Agincourt-Canning.

²While we address actual harms in general terms in the controversy section that follows, we are thus less focused on actual harms caused by the campaign than we are focused on the potential issues and concerns caused by how the campaign orients and positions audiences toward the material world. This is not to argue that all audiences would respond to the campaign texts in the way we discuss here. Far from it, the polysemic meanings of these texts offer a range of corresponding ways in which audiences can respond to and react to them. Examining the “contextual fragments that represent evidence of reception,” as Leah Ceccarelli suggests, would provide a deeper understanding not only of what audience the text invites, but also of the actual, varied ways in which audiences accept, reject, resist, amplify, or negotiate the text's meanings. Given the sensitive nature of this particular set of texts, however, little detailed audience reception data exists beyond the standard advertisement demographics and the kinds of indirect measures of campaign effects we cite earlier. We thus focus on the constitutive side of the campaign's rhetoric in this essay, exploring the subject position constituted by the text and the material potentialities and provisionality that emerge from it. At the same time, we hope that as these kinds of genetic products continue to be both materially and rhetorically disseminated into the marketplace, the growing importance of collecting data through audience reception studies about the specific harms of specific campaigns will lead to better availability of such data.

³The website, titled “BRAC (Be Ready Against Cancer) Now” is operated by Myriad Genetics and designed specifically for their BRACAnalysis test. It features multiple sections that discuss who should consider a test and why (including an overview of the basics of hereditary breast and ovarian cancer, a list of reasons why testing could be beneficial, a description of the testing process, and cost and insurance information), a list of frequently asked questions, and external resources. The website also features a variety of multimedia and dynamic resources, including a quiz to determine whether testing is a good option, videos of women who share their stories about hereditary cancer in their families, and a “Be Ready” pack for download or mail.

⁴Some of the websites and links have changed since we prepared this essay. The original pages we quote from are still accessible through alternate links on Myriad's websites, caches, or Internet archives, and as screen copies from the authors.

⁵We are drawing on Charles Sanders Peirce, for whom “feeling” is a pre-symbolic, and thus pre-social and pre-deliberative, state of mind.

⁶We did not explicitly draw on this feminist, historical issue that could provide an alternative lens for our analysis. Without doubt, however, this perspective is relevant, and deserving of more extensive analysis. Many of the rhetorical characteristics we explored are framed within and draw power from a gender narrative of health and well-being that is problematic, particularly given the historical disempowerment of the female patient (see Shorter). The arguments that constitute the persuasive appeals of the BRACAnalysis campaign echo feminist discourses of personal empowerment in the face of structural constraints, where appeals to empowerment become intertwined with problematic notions of blame and responsibility (MacKenzie), subjectification, and control that draws from and reinforce the historical construction of the female body (Ussher). In effect, these texts reify the gendered construction of the female body and the female patient that have served to disempower women throughout the history of modern medicine.

⁷It is also a promise that is becoming reality in places like http://www.facingourrisk.org: non-profits that provide easily understandable yet detailed information about both the medical and social dimensions of hereditary breast and ovarian cancer, along with a wide range of support options (message boards, helplines, local groups, partner support, etc.), community resources, and advocacy efforts. The combination of good information, various support systems, and more broadly conceptualized community features avoids constraining possibilities for choices by providing deliberative spaces that are not connected to any one commercial product or service.

⁸While these patents were granted over a decade ago, the idea of patenting genes—exemplified by Myriad's patents—has faced resistance in the last few years. Myriad's patent claim was once overturned by a U.S. District Court, only to later be upheld by the U.S. Federal Appeals Court in New York. Experts believe the case will move on to the U.S. Supreme Court. See John Schwartz; Julie Steenhuysen.

Authors are listed in alphabetical order.