Defining the Roles of System Participants

By defining itself as a commercial diagnostic laboratory that simply offered a DNA-analysis service, Myriad drew clear functional and temporal boundaries around the aspects of the testing system that were under its purview.

Unlike the other testing systems envisioned in the United States, it did not attempt to control directly how clients gained access to its system or how they were counseled. It also did not try to manage how health-care professionals conveyed test results to clients. It restricted its focus to providing a DNA-analysis service after a client's blood reached its laboratory. Thus, although it marketed its test directly to physicians and their clients, it did not try to get involved in their interaction.

This approach also meant that Myriad did not directly interfere with the authority of the health-care professional. Decisions about client eligibility and counseling methods before and after testing were left up to the healthcare professional's discretion. In addition, Myriad did not restrict use of its system to particular health-care professionals, but instead gave access to any physician. By allowing the client to choose any physician, however, Myriad unintentionally restricted the authority of the health-care professional and discarded the systems proposed by the professional organizations. Rather than being subject to the clinical judgment of a particular specialist or the eligibility criteria of a research protocol or a genetics clinic, a client could seek the help of any physician who would facilitate her access. In fact, clients could always choose to visit another physician if one refused her access. The professional thus became a "gate opener" rather than the gatekeeper envisaged by the professional organizations and followed by most of the other American providers in one form or another.

Though both clients in GIVF's system and clients Myriad's systems can be considered consumers, because they were able to demand BRCA-testing services in exchange for payment to the test provider, the two groups of clients were defined quite differently. While GIVF's client was limited by the type of laboratory analysis available, Myriad's client was free to choose among four types of laboratory analysis and a variety of clinical interactions (including counseling at a genetics clinic and no specialized care at all). Myriad characterized this unfettered consumer choice as empowering, arguing that by choosing to purchase genetic information, clients could make their own health-care decisions. However, many breast cancer activists disputed Myriad's claim, suggesting that the information generated through commercial BRCA testing could be disempowering. In addition, in contrast to many of the other testing systems, Myriad's empowered consumer was seen as an individual, rather than part of a family or an ethnic group. While GIVF's consumers were members of one ethnic group, and Oncormed's and ASCO's clients were understood in their familial context, Myriad's client was an individual, and the answers to her questions about BRCA risk lay in her own DNA.

Thus, by the end of 1996 there was no consensus in the United States on how best to build a BRCA-testing system. Patient advocates, professional organizations, and prospective test providers disagreed about each component of the system's architecture, from the overall strategy to the methods of laboratory analysis used. They also offered different visions of testing system participants. For some, the client resembled a traditional patient, while for others, she was an empowered individual consumer of medicine. The way these groups envisioned these testing systems and their participants, however, were clearly linked to the history of genetic research, technology, and medicine in the United States and, more broadly, the structure and politics of American health care. First, the four systems represented the diversity of the genetic-testing services that were being provided in the United States: GDL's test combined research with the goals of a diagnostic laboratory, Oncormed's service wove together the priorities of a gene discovery company with the concerns of national advisory committees, patient advocates, and professional associations, GIVF's integrated clinical and laboratory system was built in the image of the private reproductive services and in-vitro fertilization clinics that were scattered across the country, while Myriad's technology was at once a simple diagnostic test and a consumer product that was in high demand. Second, the users envisioned by these technologies highlighted the contradictions of medical care in the United States. They were not simply patients engaging with the health-care system, but were often simultaneously defined as research subjects and consumers, which had additional implications for their rights and responsibilities. Meanwhile, health-care professionals had varied roles, in some cases taking on more traditional responsibilities to direct care and in others, simply facilitating consumer demand.

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