Clients Journey through the Breast Cancer Activists System

A client using the systems proposed by the NBCC and BCA would first visit a health-care professional who could counsel her about the benefits and risks of BRCA testing. In its policy statement published in a bimonthly newsletter that reached more than 2,000 subscribers, BCA stated: "No one should be tested without access to education and counseling concerning all benefits and risks of genetic susceptibility testing. . . ."4 Neither organization specified where this counseling should take place or how it should be conducted. They did not specify, for example, that such counseling be offered by a specially trained geneticist and thus did not take an explicit position in the debate that had been raging for years over whether non-specialists in genetics could provide counseling. However, one might easily assume that both imagined a counseling session that included information about the limitations and implications of the test for clients concerned about cancer risk and their families.5

The NBCC suggested further that clients have access to testing only through a research protocol. Its position paper recommended: "Because much more needs to be researched about the sensitivity, specificity, and reliability of the genetic tests and because not enough is known about the effectiveness of genetic education and counseling, genetic testing should only be available within peer-reviewed research protocols."6 These studies usually investigated the psychological impact of testing or the utility of the technology for disease prevention and/or management, and were also likely to be run by specialists in genetics. These specialists would likely provide specialized counseling and facilitate their research subjects' access to DNA analysis. The NBCC recognized, however, that provision of the technology through research protocols would also likely limit access to clients with a personal or family history of the disease. The NBCC dealt with this restriction, which conflicted with one of the organization's stated goals to "improve access" to health care, in two ways.7 First, it suggested that research would eventually benefit all those concerned about their BRCA risk by gathering additional information about the validity and utility of the test. Second, it recommended that research protocols be available widely, so that individuals across the country could get tested and participate in the investigative process. "It is imperative," the NBCC stated, "that such research studies should be made available to those for whom such testing is appropriate and ultimately that such studies should be widely available, easy to access in both urban and rural areas."8

Regardless of whether counseling took place in a research or clinical setting, both groups recommended that the client and her health-care professional decide together whether to pursue testing and send blood to the laboratory for analysis. Neither the NBCC nor BCA made specific recommendations about the laboratory procedures that should be used to analyze the BRCA genes, but both argued that commercial laboratories should not be used for these services, expressing similar caution to many of the advisory committees who had earlier reviewed the role of the private sector in genetic medicine. The NBCC noted that testing on a commercial basis was inappropriate when the "reproducibility, sensitivity, specificity, and predictive value of tests" were unknown, and BCA pointed to the profit motives of companies who might jeopardize the well-being of clients by making the technology available prematurely in order to capture the market. Both suggested that people only had to have their BRCA genes tested once in a lifetime to know whether they contained mutations, and that if clients were tested before adequate research had been conducted on the relationships between specific mutations and disease incidence they might make inappropriate conclusions based on the results.9

After the genes were analyzed, the client returned to the clinic on an ongoing basis for post-test counseling and long-term follow-up.10 Both groups were careful, however, to note that both counseling and laboratory services should remain confidential unless the client decided otherwise. BCA urged that "the array and number of unresolved issues related to genetic testing for susceptibility to breast cancer make compelling the need for written informed consent prior to such testing or to the release of the results of such testing to third parties."11 This confidentiality of genetic-test results was already standard practice at genetics clinics in the United States, who had responded to concerns that genomic information in the medical record could fall into the hands of insurers or employers and cause discrimination.

10 Ways To Fight Off Cancer

10 Ways To Fight Off Cancer

Learning About 10 Ways Fight Off Cancer Can Have Amazing Benefits For Your Life The Best Tips On How To Keep This Killer At Bay Discovering that you or a loved one has cancer can be utterly terrifying. All the same, once you comprehend the causes of cancer and learn how to reverse those causes, you or your loved one may have more than a fighting chance of beating out cancer.

Get My Free Ebook


Post a comment