Thank you for sharing : Nature News & Comment

" ... Sharing should be equal, but some is more equal than others. The principals behind one genetic data-sharing project unveiled last week have described their initiative as a model of 'scientific openness' that offers 'broader access' to genetic data. Indeed, the name of the project — BRCA Share — trades on the idea of data freedom. The initiative focuses on clinical data concerning mutations in the genes BRCA1 and BRCA2, which increase risk of breast and ovarian cancer. In truth, it creates more of a walled garden of genetic data than an open field. That runs contrary to crucial ongoing efforts to amass large amounts of linked genetic and medical data to help scientists and doctors to improve interpretation of genetic test results. The commercial market for genetic testing for breast cancer is growing. On 21 April, for instance, a firm called Color Genomics in Burlingame, California, promised to offer women BRCA gene testing — which normally costs thousands of dollars — for as little as US$249. If the companies that offer such testing share their data, stripped of identifying information, with researchers, it could aid efforts to understand how all of the thousands of possible BRCA mutations affect cancer risk. The more data researchers can gather, the more they can determine whether ‘variants of unknown significance’ — genetic differences whose health effects are unknown — are benign or pose risks. BRCA Share is a partnership between Quest Diagnostics of Madison, New Jersey, and INSERM, the French National Institute of Health and Medical Research. Testing labs that sign up will get access to each other’s BRCA data and an INSERM repository of information about the genes. The project will run functional studies on the effects of mutations. But it will not share data with similar efforts such as ClinVar, a US National Institutes of Health-funded initiative that is making linked genetic and medical data publicly available for all ..."