"For decades, one company owned the data for people tested for a gene that is linked to ovarian and breast cancer.
Many scientists believe that the patenting of this gene stunted medical innovation and delayed discoveries that could have helped us understand and more effectively treat various forms of cancer.
But in June of this year, the Supreme Court issued a landmark ruling to open up the data to researchers and declared that human genes should not be patented. At the center of the debate was a biotech giant called Myriad Genetics, which had patented its discovery that two genes — BRCA 1 and BRCA 2 — are associated with breast and ovarian cancer.
It was a huge victory for the research community, many members of which believe that the decision was about 20 years overdue. In the immediate aftermath of the Supreme Court’s decision, a group of health providers joined forces to launch an initiative called Free the Data.
Free the Data opened its medical dataset to the public this week. The goal is to accelerate research and improve our understanding of the root causes of cancer.
“It was very unfortunate that something as frequent, as common as hereditary breast and ovarian cancer should be analyzed and interpreted in a closed black box manner,” said Richard Nussbaum, a chief at the division of Genomic Medicine at the University of San Francisco, in a video describing the initiative."