By Donald Zuhn —

On June 13, the Genetic
Alliance announced the launch of
an initiative to fill the public information gap caused by the lack of
available genetic information for the BRCA1 and BRCA2 genes.  According to the Genetic Alliance statement, the Free the Data! initiative, which also includes the University of
California San Francisco (UCSF) and InVitae Corporation
among its primary founders, will eventually be expanded to provide other types
of genetic information in open, searchable databases, including the National
Center for Biotechnology Information's database, ClinVar.  Not coincidentally, the consortium announced
the launch of the initiative on the same day that the Supreme Court was issuing
its decision in Association for Molecular Pathology v. Myriad Genetics, Inc.,
holding that a naturally occurring DNA segment is a product of nature and not
patent eligible merely because it has been isolated, and determining that cDNA
is patent eligible (with one caveat) because it is not naturally occurring (see
Patent Docs posts here
and here).

The Genetic Alliance, which
describes itself as "the world's
leading 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," is a network of more
than 1,200 disease-specific advocacy organizations, and thousands of
universities, private companies, government agencies, and public policy
organizations.  In announcing the launch
of the Free the Data! initiative, the
consortium also took the opportunity to applaud the Supreme Court decision
eliminating gene patents.  Sharon Terry,
president and CEO of the Genetic Alliance, noted however that the Supreme Court's
"ruling against gene patentability doesn't immediately provide broad
access to BRCA 1 and 2 mutations or place them in a public database that will
allow for better diagnosis and care," and that the initiative will "enable[]
individuals to contribute their information publicly . . . through a customized
portal that can be used by all patients and their clinicians in order to
improve care."

According to the Genetic
Alliance's announcement, the consortium is inviting individuals "to share
their genetic variation on their own terms and with appropriate privacy
settings, in a public database so that their families, friends, and clinicians
can better understand what the mutation means."  The consortium has created a dedicated
website where individuals can
upload their BRACAnalysis® reports. 
Before uploading a report, contributors must check a box to confirm that
they are "the owner of the attached report and wish to anonymously
contribute the variant in it to the ClinVar public database maintained by the
NCBI."  The site also provides
instructions for masking the contributor's name and any identifiable
information without obscuring the test results or interpretation of the
results.

For additional reports on
the initiative, please see:

• "A New High-Tech, Grass-Roots Effort to Fight
Breast Cancer," Slate, June 25,
2013
• "Coalition Launches Open BRCA Sharing Site,
Seeks to 'Liberate' Test Data," GenomeWeb
Daily News, June 14, 2013