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Buddy Check 9: Free The Data

5:21 AM, Sep 23, 2013   |    comments
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WASHINGTON (WUSA9) -- As part of our 20th Anniversary Celebration of BC9, WUSA 9 has shared the personal stories of women and men who are making tough choices to reduce their hereditary risk of breast and ovarian cancer because they carry the BRCA 1 or 2 gene mutation. In this segment, we're talking to one organization that wants to reach the thousands of people who have tested positive for BRCA 1 or 2 with a simple message: "Free the data."

Thirty years ago if someone said "It's in the genes" they might have been referring to hair color, eye color, whether someone was short or tall. Today, thanks to medical breakthroughs and a growing world of personalized medicine, knowing what's "in the genes" could save our lives.

"I was diagnosed with breast cancer when nursing my second daughter. She was three months old, and I'm freeing the data because I want better answers...." a woman says in the Free Data public service announcement.

This public service announcement is part of a larger campaign being launched by Genetic Alliance, a nonprofit health advocacy organization reaching out to those who have tested positive for the BRCA 1 or 2 mutations and asking them to share their test results with the world. Sharon Terry is the group's President and CEO.

She says, "First and foremost it is theirs and we don't often remember that. That when we got to a hospital or a doctor and have a blood test and get a report back the information in the report is ours....we can put it up in times square in a billboard if we want."

Myriad Genetics is the only company that has conducted the BRCA analysis test for the past 19 years due to the patent it held on the BRCA gene. In June of this year, The US Supreme Court ruled against Myriad declaring that no one company could hold a patent to naturally-occurring human genes. To the cancer community, the ruling meant that more companies will be offering the BRCA 1 and 2 testing. But the data that was collected from the thousands of individuals who were tested by Myriad over the years is not going to be readily available to researchers, doctors, or patients. That, Terry explains, is a bit more complicated.

"So it's very interesting that Myriad - the patent was struck down for them but their business is doing the testing and there's nothing that says when you do a test and there is nothing that says when you do a test you can keep the data or can't keep the data," explains Terry.

The data from a BRCA test result is a simple sequence of letters and numbers. Knowing that specific sequence or variant along with a person's family health history is important for both doctors and patients. Terry says it can shape choices including whether to have surgery before cancer strikes, or what drugs to take in case it does.

She tells us, "It's important to know is this variant really associated with an increased incident of breast cancer? Is this going to increase my risk? And do I have to make decisions like prophylactic mastectomy or oophorectomy? What does this mean for my treatment if I'm going to have to have treatment later on for cancer and understanding in a clinical context what does this mean to me?"

It's through this website that Genetic Alliance plans to collect and organize the data from those who upload their BRCA test results. Participants have the option to upload their information anonymously and they can immediately see how their data compares to others who have completed the online questionnaire. Even if you do not have a positive BRCA test result, Terry says that making your family history of breast or ovarian cancer public can greatly help scientists looking for disease trends and new treatments.

"Get that report. Get it from your doctor. Get it from your genetic counselor and upload that information to a common database," says Terry.

For more information about the Free the Data campaign, visit www.free-the-data.org.

Just a reminder: on October 1 WUSA 9 will be live from the red carpet at the benefit screening of Decoding Annie Parker, a movie starring Helen Hunt based on the story of the scientist who discovered the breast cancer gene.  A portion of the proceeds for this benefit screening will go to FORCE - Facing Our Risk of Cancer Empowered. Tickets must be purchased in advance and we hope you will join us for this special event.