…”Myriad’s monopoly over BRCA1 and BRCA2 not only means showing that it can charge whatever it wants for the test; it also means that further research on the genes is restricted, and that women who take the test and get an ambiguous result can’t get a second opinion, only take the test again. An ambiguous result can mean the difference between removing breasts or ovaries or leaving them intact.
The economic and racial implications of all this are major, both for how the research has been done and who gets access to it. In a video on the case, the ACLU points out, “Initial gene studies focused on white women. And now the patents make it more difficult to learn what some mutations mean in women of color, because Myriad has total control over researchers’ access to those mutations.” And information that allows some women to choose prophylactic surgery likely contributes to the massive disparities in who dies of breast cancer. Black women are the likeliest to die of breast cancer, even as they are less likely than white women to be diagnosed with it. A 2005 study in the Journal of American Medicine found that “African American women with a family history of breast or ovarian cancer were significantly less likely to undergo genetic counseling for BRCA1/2 testing than were white women with a family history of breast or ovarian cancer.”
S. Bear Bergman, “The Field Guide to Transmasculine Creatures”
The Nearest Exit May Be Behind You