IGSP Involves Advocacy Group from the Get-Go
This article orginally appeared in GenomeLife, Issue 2.
Center for Genome Ethics, Law and Policy (GELP) Director Bob Cook-Deegan is an unabashed fan of the National Breast Cancer Coalition (NBCC), particularly the patient advocacy group's feisty, no-nonsense style. Noting that the NBCC's slogan used to be, "Breast Cancer: Say it, Fight it, Cure it, Damn it," Cook-Deegan recalls the first time NBCC President Fran Visco testified before Congress. "She basically said, 'I'm not here to be nice to you, I'm here to tell you what we need. Your job is to do what's right for the country with respect to breast cancer and here it is-we figured it out for you.' Do members of Congress like that? No. But do they respect it? Oh, yeah."
Thus, when Joe Nevins e-mailed Cook-Deegan and asked him if there was anything he would like to include in a breast cancer clinico-genomic profiling grant application, Cook-Deegan immediately seized upon the idea of involving the NBCC in some way. For Cook-Deegan, it was not only the NBCC's forthright approach to finding a cure for breast cancer that was appealing, but rather, two other qualities that were, at the end of the day, probably even more important than style. First, he sees the NBCC as being especially sensitive to the needs of its constituency, that is, women (and a few men) with breast cancer. Second, he notes, "The NBCC is very serious about science. They see science as the way to solve the problem of breast cancer. They want the results. And they're very good at doing their homework."
To illustrate his point, Cook-Deegan briefly surveys the history of some of the bigger controversies that have surrounded breast cancer diagnosis and treatment, including mammography, bone marrow transplantation (BMT), chemotherapy, and the development of new drugs such as Herceptin. "Time after time," Cook-Deegan says, "the NBCC has been able to get things done to help their constituency. And sometimes that has meant taking an unpopular stand. BMT is the starkest example. There were a lot of advocacy groups telling their state legislatures to pass bills to [ensure that it would be covered by insurance]. The NBCC was saying, 'No. We don't do that until we get clinical trial data.'" When clinical trial data did become available, Cook-Deegan notes, the results were equivocal and, as a result, BMT is no longer covered by insurance. "That was a case," he says, "where the NBCC did not have to change its position while other advocacy groups did."
Cook-Deegan recognized that the gene profiling approach that the Duke team has developed has immediate implications for clinical decision-making. "They're trying to reframe how we think about predicting response to treatment, prognosis and probabilities of events happening in connection with breast cancer. That project is constantly going to be faced with questions of what clinical decisions should get made regarding treatment for specific individuals. They're trying to prune and reshape the clinical decision tree, which is where the professionals make technical judgments about treatments. But it's also where women make decisions about how they're going to be treated. So, if there were ever a project where advocacy and consumer input could benefit patients, this is it."