Looking for more information on sharing your genetic testing report? You've come to the right place! Below, you'll find some frequently asked questions on sharing genetic testing reports through Free the Data.
Sharing Genetic Testing Reports Through Free the Data: Frequently Asked Questions
Free the Data is currently accepting genetic testing reports for the BRCA1/2 genes, either as single gene tests or as part of a larger hereditary cancer panel test that includes multiple genes.
When you share your anonymous genetic testing report through Free the Data, you have complete control over who can and cannot see and access your genetic testing report. There are two levels of privacy and access settings that enable this control.
First, when you upload your anonymous report to Free the Data, we ask you for your permission to share your anonymous genetic variant with ClinVar. We will only share your genetic variant with ClinVar if you grant this permission. ClinVar is a public access resource of genetic variation and clinical significance managed by the National Center for Biotechnology Information (NCBI) at the National Institutes of Health (NIH). While the information in ClinVar is freely available to anyone who would like to access that information, it is also completely anonymous: there is no way for someone using ClinVar to identify you from your genetic information.
Second, if you choose to create an account with Free the Data, you can set privacy and access settings that allow you to share your report, together with associated clinical information, with additional groups of your choosing. These groups might be researchers, advocacy groups, or other open access resources - who they are is up to you! Your privacy and access settings give you complete control over who can and cannot view your report and associated clinical information, and who must ask first.
Yes! While not all genetic testing labs share their genetic variant data, a growing number do share genetic variant data with ClinVar to help improve our understanding of genetic variants and their effect on human health. However, even if your lab has already shared your anonymous genetic variant with ClinVar, you can still help contribute to research on hereditary breast and ovarian cancer by sharing your report here. We work with ClinVar and their contributors to ensure that we don’t share duplicate reports – and while ClinVar only collects information on genetic variants and their clinical significance (information about whether a variant is harmful or not), Free the Data collects both genetic variant information and associated clinical information. Clinical information is helpful to researchers working on a variety of projects, from studies analyzing the health risk for specific variants, to studies on new therapies or preventative treatments. If you share clinical information with Free the Data, and if you allow it in your privacy and access settings, researchers and other groups of your choice may be able to use your data to contribute to life-saving research like this.
You can provide associated clinical information with your report by creating an account with Free the Data and filling out our health survey.
Simply take a look at the name of your genetic testing lab, which is provided on your copy of your genetic testing report, and see if the lab is listed in our ClinVar Submitter "Hall of Fame", below! All of the labs listed here share data for BRCA1/2 and other genes. If you received a genetic testing report from one of these labs, your variant has either already been shared with ClinVar or will be in the future.
Even if your variant has been shared with ClinVar, however, you can still share it through Free the Data. Free the Data allows you to share additional clinical information with your variant, which may aid researchers in their efforts to develop new treatments and improve our understanding of the variants that cause hereditary breast and ovarian cancer. We also work with ClinVar and the labs listed to below to ensure that your variant will not be duplicated in ClinVar.
Free the Data Hall of Fame
We’d like to acknowledge the following labs, who currently contribute data about the BRCA1 and 2 genes to the open access resource ClinVar.
Want to help grow this list? Sign our letter to genetic testing labs!
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