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4 Fighting for a Place at the Table Women as Consumers, Partners, and Subjects of Science—and the “Dark Knight” Who Tried to “Protect” Them On April 13, 1994, the voices of cancer patients and women’s health advocates reverberated through Rayburn Hall as they testified during Congressman Dingell’s hearing on “scientific misconduct in breast cancer research.”1 Although the panels featured a powerful cast of cancer coalition members and congresswomen, research oversight officials and representatives of Big Pharma, the star of the show was Jill Lea Sigal, a thirty-­ two-­ year-­ old cancer survivor whose poignant testimony was met with hushed silence before it captivated evening news viewers and recirculated through North Ameri­ can newspapers and medical publications.2 “How many women must now wonder, as I do every day, if they will die because they may have made the wrong decision?”she asked.“How many women, Mr. Chairman, will die?”3 Although this haunting question captured media fancy by emphasizing the existential terror facing women with cancer, the words of other women raised broader political questions about the extent of women’s participation in federally funded research. For instance, Fran Visco, president of the National Breast Cancer Coalition (NBCC), used her testimony to chastise scientists’apparent disregard for cancer patients and survivors who first learned of problems with NSABP lumpectomy data when they had read the New York Times. Visco aligned herself with the 2.6 million women living with breast cancer, marking breast cancer survivors as “everyone”: “We are lawyers, scientists, Members of Congress, teachers, homemakers, mothers , daughters,” she explained. “We are, by and large, a medically sophisticated vocal group who live day in and day out with the threat, the fear and the pain of breast cancer.” Speaking on behalf of this large and formidable group, Visco reminded listeners that “the anxiety and fear with which we 120 Chapter 4 live daily has been exacerbated by a barrage of events,” including especially “the fundamental flaw in the systems that are supposed to protect us.” She implored Congress and the scientific community to recognize that cancer advocates deserved a “place at the table.”4 As both Sigal and Visco so resoundingly underscored, women affected by NSABP research hailed from all walks of life and occupied varying subject positions and relationships to cancer advocacy. Some were patients trying to protect the reputations of their beloved, life-­ saving surgeons; some were study participants incensed by researchers’paternal silence about problems with treatment data; some were activists fighting for increased participation in research and attention to the environmental causes of cancer; some were lifelong physicians striving for conceptual clarity—and many cut across ­ several of these groups.5 While a portion of women who spoke out during Datagate deemed the scandal an abomination, others could not comprehend why their compatriots were surprised or confused. Although their voices formed a powerful core of complaints, in the decade before blogs and message boards came to dominate public life, much of the vernacular rhetoric about Datagate—the everyday communication that occurred around water coolers, over phone lines, or in support groups—is lost to history, so one of the challenges I faced in this study was to represent women’s concerns without replicating the silencing of, or the speaking for, women that occurred as the controversy progressed.Thus, against the backdrop of the official voices of the NCI and NSABP,which sought publicly to reassure women that lumpectomy was still safe, in this chapter I seek to recover and then to analyze women’s voices as they appeared in mass media accounts , interviews, editorials, letters to the editor, books, and congressional testimony.The news of Poisson’s treachery and Fisher’s silence was,for many women,a call to speak and act—and act they did,in remarkably textured local and national showings.The growing chorus of other women who spoke out during the controversy testifies to the slipperiness of trust in biomedical research,wherein researchers and those who benefit from research are separated by a chasm of noncommunication. Their voices reveal the dilemmas of stakeholder exclusion from and inclusion in the research process, illuminating how the scientific endeavor is helped and hindered by more voices. But these voices also provide the opportunity to understand what happened at a moment when women felt compelled to contribute to the broader controversy over research that affected their lives.These voices—and those who spoke for them—form the primary focus of this chapter. Because...

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