Evan Goldberg, founder and chief technology officer of San Mateo-based NetSuite, began doing philanthropic work after his company went public in 2008. Some of his efforts went toward cancer research — and that was before he discovered he was a carrier of the BRCA1 gene mutation.
Goldberg was adopted by a Jewish family and didn’t know his birth mother until 15 years ago. She sought out the Silicon Valley entrepreneur to tell him that she was a BRCA1 carrier and a cancer survivor. Her background is also Ashkenazi Jewish.
Goldberg, 50, tested positive for the BRCA gene mutation himself, and with a young family and a wife with a family history of cancer, his philanthropic trajectory became very personal.
A mission to spur cancer research began to shape the next chapter of Goldberg’s life, culminating in the formation of the San Francisco-based BRCA Foundation, launched this week to accelerate research and increase awareness of the two gene mutations related to breast and ovarian cancer that are common among Ashkenazi Jews.
Goldberg said 1 in 40 Ashkenazi Jews is a carrier of either the BRCA1 or BRCA2 gene mutation. The Centers for Disease Control reports that 1 in 800 people in the general population carries the mutation.
“That translates to 5,000 to 10,000 BRCA carriers potentially in the Bay Area [Jewish population],” Goldberg said. “It’s highly likely the majority of them don’t yet know.”
According to the Center for Jewish Genetics, about 5 percent to 10 percent of breast and ovarian cancer is hereditary, and the majority of those cases are caused by mutations in the BRCA1 and BRCA2 genes. Both male and female carriers have a 50 percent chance of passing on the mutation to their offspring.
Men who have the mutation are also at risk for developing breast or prostate cancer, according to the Fred Hutchinson Cancer Research Center, though not everyone who carries the mutation will develop cancer.
BRCA1 and BRCA2 genes are known as tumor suppressors. They help keep breast, ovarian and other types of cells from growing and dividing too rapidly or in an uncontrolled way. If a mutation occurs in those genes, cells are more likely to divide and change rapidly, which can develop into cancer.
BRCA public awareness gained traction following Angelina Jolie’s 2013 decision to have a double mastectomy as a preventive measure when the actress found out she carried the BRCA1 mutation. Goldberg said his BRCA Foundation will seek to shine new light on the issue in innovative ways.
With his Silicon Valley background, Goldberg sees collaboration as one of the keys to eventually eradicating the mutation. The cancer research centers at UCSF, Stanford, Harvard and the Dana Farber Cancer Institute will use his foundation’s funding to work together on BRCA research.
“You go to many of these institutions and they specialize in a specific cancer type, with a few notable exceptions,” he said. “Then you have the [barriers] between institutions, and they are often competitive and work on their own. Both of those things I felt like, taking a cue from what we did for businesses, we can be more efficient and effective if you remove some of these barriers.”
The foundation also will collaborate with Color Genomics, a Silicon Valley startup, to establish a registry for BRCA patients and ease the price tag for genetic testing, which can cost upwards of $4,000.
“The BRCA Foundation will help testing of relatives who cannot afford the testing, ultimately to lead to more people finding out their BRCA status,” Goldberg said. “There’s still an enormous amount of people in the world who do not know they are BRCA-positive.”
The foundation’s deputy director, Gail Fisher, confronted the possibility she was a mutation carrier after her mother, a two-time breast cancer survivor, tested positive.
It took Fisher seven years before she felt ready to get tested and deal with the outcome. When she tested positive in her late 40s, she was able to make the decision to have the prophylactic procedures to reduce her chances of getting cancer. She had a double mastectomy and an oophorectomy to remove her ovaries.
Her role at the foundation is attached to a personal mission, as it is for Goldberg. Fisher said she hopes the work will build the conversation about risks and treatment, especially within the highly susceptible Jewish community.
“As a community, we need to be prepared to talk about the cancers and educate each other,” she said. “Ultimately I’d hope that awareness and really understanding the implications of BRCA…will translate into support for the foundation, as our vision is a world in which individual lives and families are free from the threat of BRCA cancers.”
For information, see www.brcafoundation.org or call (415) 684-7441.