The Free the Data initiative was launched to help increase genetic data sharing.

Free the data

Making BRCA results available for the common good

issue 21 | Spring-Summer 2014

The Supreme Court of the United States ruled in June 2013 that naturally occurring human DNA cannot be patented, after hearing a case centering on patents on the BRCA1 and BRCA2 genes held by Myriad Genetic Laboratories. The decision led to several new laboratories beginning to offer testing of the BRCA genes, but also highlighted a related problem with interpreting results from the testing.

"Interpretation of genetic test results is a complicated process that depends on available data and some amount of comparison with results from other patients and families," says Jessica N. Everett, M.S., CGC, a U-M genetics counselor. "Many scientists have advocated for use of open databases where research and commercial laboratories could come together to share results."

Combining data from many sources increases the ability to understand results for individual patients. Researchers and health care providers have been contributing information about BRCA1 and BRCA2 mutations to the National Center for Biotechnology Information's Breast Cancer Information Core, an international open access database, since shortly after the BRCA1 gene was identified in 1993. However, commercial laboratories are not required to share their results in the database. Freeing genetic data can help.

On the heels of the Supreme Court decision, the Free the Data initiative was launched to help increase data sharing. The goal of the project is to encourage patients and health care providers to share their BRCA genetic test results from commercial laboratories. Free the Data is the work of a consortium of patient advocacy groups, academic institutions and health professional organizations, and is managed by the Genetic Alliance, a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families and communities.

Participants can register at the site, and then set specific privacy permissions to designate how and with whom they would like to share their test result information. They can also view reports of all accesses to their data. In addition to test results, the site also allows patients to share health information relevant to their genetic testing. Combining results with relevant health histories provides additional information to help researchers better understand and interpret test results. Health care providers who order testing can also share results through the site.