By Cathy Corman
My father had a radical mastectomy in 1975.
He’d visited a general surgeon to check an eraser-sized lump he’d noticed in his left “breast,” which turned out to be malignant. Researchers in the 1980s pinpointed two kinds of genetic mutations that dramatically increase the odds of developing breast and ovarian cancer. They named these mutations BRCA 1 and 2.
By 1996, Myriad Genetics, a company in Utah, was offering a test that could identify people with BRCA mutations. I strong-armed my father into taking the test and held my breath as we waited for results. We learned that we are both BRCA carriers. For my dad, the result was retrospectively predictive. He had the mutation and developed breast cancer. For me, a healthy 37-year-old mother of young triplets, the implications weren’t so clear. I weighed my options and rolled the dice. By the fall of 1998, I’d had elective surgery to remove my thus-far cancer-free breasts and ovaries.
Along with the rest of the nation, I was on pins and needles last week listening to arguments in front of the Supreme Court about the constitutionality of “Obamacare.” I was also holding my breath, waiting for the decision the justices delivered last week concerning a challenge to Myriad’s monopoly on BRCA DNA and BRCA testing. Researchers, geneticists, and the American Civil Liberties Union asked justices on the Supreme Court to reconsider an appellate court’s ruling that upheld Myriad’s patent of the genetic material. The justices sent the case back to the appellate court and asked it to revisit its decision in light of a related case. This might bring good news or bad for those of us carrying BRCA mutations, but, in any case, the implications of the decision will reach far beyond the small number of us genetically predisposed to reproductive cancers.
Families with histories of any number of inherited diseases — from heart failure to diabetes to mental illness to autoimmune disorders – will increasingly share their DNA with researchers looking for genetic clues. If companies can patent our DNA as Myriad has done, they can, under current law, prevent us from receiving affordable testing and innovative, effective treatments for diseases that have the potential to take our lives. Continue reading