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Genetic Testing Session on Capitol Hill

Results for Life, the education and advocacy branch of the American Clinical Laboratory Association, held a briefing on Capitol Hill yesterday to shine a spotlight on the value of genetic and genomic testing, and to explain the importance of funding genomics and biomedical research to lawmakers and staff members.

The event included Rep. Jackie Speier (D - Calif.), who praised genetic testing as having "saved many lives," and called for more research to develop new tests for more types of cancer and other diseases.

"Thanks to results of the human genome project and genomic testing, we're seeing results that allow for real personalized medicine," said Speier, who also encouraged her fellow lawmakers to learn more about these advances, and to "support full funding for the National Institutes of Health...."

Speier, who is co-chair of the House Biomedical Research Caucus, said that many chemotherapy patients see little or no benefit from their treatments, but that genome-based testing will enable doctors to "know when it is going to work, and why it is going to work," on some patients and not others.

Noting the importance of continued research to develop new tests, she explained that NIH Director Francis Collins has said that China will eclipse the US as the leader in genome sequencing in three to five years.

"Now, that should be a warning sign to all of us that if we don't continue to fund NIH and medical research in this country, [then China] will eclipse us. And when they eclipse us, much of the research and technology will leave the US and relocate to China, and we don't want that to happen," Speier said.

Speier was joined by Genomic Health's Steven Shak, who is the company's CMO and executiv VP for R&D, and by a patient advocate with firsthand experience with how genetic testing - the Oncotype Dx test - helped to save her life.

Shak said it is "extremely challenging" to develop such tests, and it takes collaboration and teamwork.

"There is no such thing now as little science. There is big science and big data," he said.

He delivered a background on what the Oncotype test is, how it works, and how widely it is used today, and explained that it required a partnership between industry, government, patient advocates, and academia to develop this test and others like it.

Shak also talked about the value of tests like Genomic Health's prostate cancer test, which is aimed at helping doctors and patients decide which cancers are aggressive and which may not require treatment, or what treatments they may need.

Nancy Davenport-Ennis, founder and chairman of the board at the National Patient Advocate Foundation, gave her personal story about how 24 years ago she could have avoided much pain and suffering in dealing with her breast cancer if there had been genetic tests to guide her treatment. She also provided several anecdotes about patients who seek the support of NPAF who have benefitted from genetic tests.

Davenport-Ennis specifically said that lawmakers and staff members on the Hill play a critical role in the development of these tests.

"It begins with you, you and your bosses.... The scientists race down that bench, and they can bring discoveries to market, but if we do not create a system of reimbursement that is supportive of research and development we are not racing anywhere. We are racing to dead ends. And it is costing us $1 billion for each of those dead ends," she said.