“This is not to replace the traditional way we do trials but complement the way we do traditional studies - to get to testable hypotheses faster,” said Genentech’s Bishop.

To spread the word about the study, Genentech and 23andMe partnered with several advocacy groups, including the Cancer Support Community and Breastcancer.org.

Study questioned

Karuna Jaggar, executive director of Breast Cancer Action in San Francisco, questioned how scientific the results would be.

“This is not a random sample. This is not a representative sample. This is a self-selected group of women who are responding through social media,” said Jaggar, whose group supported the FDA’s decision. “My question is, who is and who isn’t included? Is this a diverse sample?”

Jaggar also raised concerns about private companies being in control of the participants’ DNA samples.

Genentech officials said the samples are de-identified and protected under the same scientific guidelines and federal laws as other studies.

Natalie Compagni Portis of Oakland, who served as the patient representative on the FDA panel and voted to repeal Avastin’s approval for breast cancer, said she’d be interested in the study’s results.

“If there is solid evidence to show these women with this profile do in fact respond, we’d all be glad to hear this,” said Compagni Portis, who had breast cancer 17 years ago. “Nobody is against Avastin. We voted against a drug that didn’t seem to work and had a very high risk profile.”

Meanwhile, Turnage immediately signed up for the study and sent back her sample. She is using breast cancer groups and social media sites for patients to let people know about it.

“They made it very easy - you just spit in a cup and mail it back,” she said. “You just don’t know what they will find.”

About the study

Who is eligible? Patients who have metastatic or recurrent breast cancer and have been treated with Avastin at any point in 2010 and/or 2011 may participate. All participants must be at least 18 years old and live in the United States.

What does the study involve? Participants must send in a saliva sample (collected in a 23andMe DNA kit) and take a survey about their breast cancer diagnosis and their experience on Avastin. They must then answer short follow-up questions every three months about any changes in their health or treatment. A blood sample is recommended, but not required.

For more information about study - called InVite - go here: links.sfgate.com/ZLJF

Source: 23andMe.

####

Victoria Colliver