Supreme Court ruling on gene patenting changes the landscape for BRCA testing

Sharsheret’s founder, Rochelle Shoretz, says the program has spread nationally.

“The Genetics for Life program is one of 12 national programs we run,” explained Rochelle Shoretz of Teaneck said.

Shoretz, the founder and executive director of Sharsheret, was talking about the group’s program on issues related to hereditary breast and ovarian cancer. Sharsheret, the Hebrew word for chain, was founded in 2001 to provide peer support, with peers reaching out to peers like links in a chain, for young women diagnosed with breast or ovarian cancer. It has grown into a multifaceted organization, with 15 staff members running a dozen national programs to support women and families dealing with a host of cancer-related issues.

Sharsheret is based in Teaneck and recently opened its first regional office, in South Florida, to serve the large Jewish population there.

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The Genetics for Life program includes free access to a genetic counselor. Danielle Singer, who fills that role at Sharsheret, said that recent events, including Angelina Jolie’s revelation about her BRCA status and the Supreme Court decision on patenting genes, have led to an increase in the volume of calls. “I am hearing from other genetic counselors that they have increases in calls as well,” she said.

The peer-support part of the program has expanded to include 2,200 women. The participants are at all stages of dealing with cancer-related issues, ranging from women and families who have just learned of a BRCA mutation to patients who are recovering from treatments.

Family conference calls are a novel part of the Genetics for Life program. This provides family members with the opportunity to speak directly with genetic counselors. “When a woman tells her family that she tested positive, the first question is ‘do I need to get tested?'” Shoretz said. The conference call is designed so “women won’t have to explain to the family all the implications of the test.”

In addition, she continued, Sharsheret provides “access to our teleconference series, sprinkled throughout the year. For survivors of cancer, [they cover] what’s new in genetics and genomics. There may be new tests that are relevant to them.” For instance, Shoretz said, when she was first diagnosed with cancer, at 28, she did not have access to certain tests. Oncotype DX is a new approach to cancer genetics that can help doctors tailor the treatments to the patient’s specific type of cancer.

“It helps patients and providers determine whether chemotherapy is necessary,” Shoretz said. “How likely is recurrence if chemotherapy is not used? Some women might be able to avoid chemotherapy.”

The “Thriving Again” survivorship program provides “individualized support, education, and survivorship plans for young breast cancer survivors.”

A teleconference update on genetics and genomics is scheduled for October.

Sharsheret has received U.S. government grant support from the Centers for Disease Control. “The CDC Breast Cancer in Young Women Project is studying Sharsheret’s Peer Support Network and Genetics for Life Program,” Shoretz said. “The study goes for three years. After it is completed, the programs will be considered Evidence Based Interventions. They will have the CDC stamp of approval and can be used as models for other organizations” as they work to develop similar programs.

In addition, she added, the CDC has funded “Thriving Again,” the survivorship program for young Jewish breast cancer survivors, awarding a $1 million grant over three years.

Shoretz, who is now 40, serves on the federal advisory committee on breast cancer in young women, an Atlanta-based CDC advisory committee.

Information on Sharsheret’s programs is at www.sharsheret.org, or at 866-474-2774. The group’s offices are at 1086 Teaneck Road. All its programs are free of charge.