https://www.forbes.com/sites/elliekincaid/2019/01/17/data-pirates-patients-and-scientist-battle-to-liberate-genetic-testing-resu

42 0

Brooke Maile was shocked to find out how hard it was to get genetic data on her own tumor from a testing lab to give to scientists for research. Ciena Lennon. When Brooke Maile first went to her doctor with a painful mass in her breast, the physician said don’t worry, it’s not breast cancer. A year and a half later, she found out the diagnosis was only half right. The tumor in her breast was an angiosarcoma, a rare cancer that forms from the lining of lymph or blood vessels and accounts for 1% of soft tissue breast tumors. Hearing the news, “Your head just sort of starts to spin,” Maile says. After multiple rounds of chemo and a mastectomy, the 59-year-old says she’s been cancer-free since 2014. Full story

18 January

wait