Supreme Court ruling on gene patenting changes the landscape for BRCA testing
New website educates the Jewish community about genetic health issues
|Website provides ‘user-friendly’ information on Jewish genetic issues.|
“Advances in scientific research have identified many genetic diseases and conditions that are commonly found amongst Jews,” said Dr. Nicole Schreiber-Agus, the director of the Program for Jewish Genetic Health of Yeshiva University and the Albert Einstein College of Medicine.
The program, established in 2010, focuses on genetic testing, education, resources, and support. Until recently it used a grassroots approach to reach out to Jewish communities, with representatives going from place to place. “We travel a lot, and host events to make the community aware of genetic health issues, but that’s not always the most effective way for teaching,” or for reaching all who need the information, Schreiber-Agus said. So, in order to reach more people and provide more educational resources, the program launched a new website to provide online education that is “user-friendly, simple, and accessible to all who have a computer and internet access.”
The site, http://www.genesights.com, has a variety of educational tools that provide information on Jewish genetic issues. “We built the website from scratch, considering various methods of teaching,” Schreiber-Agus said. “For every lesson, we have a very short video. We try to keep it under two minutes.
“You can register online for a much longer webinar that is deeper — for somebody who wants to learn more about the topic. It’s not one size fits all.”
Schreiber-Agus encouraged people to register on the website in order to experience the whole program in depth. “We think it’s important for people to sign up for the full program because you get updates,” she said. Registered users can watch the full lessons and participate in longer webinars on each topic. “You also get notifications when a new lesson comes out,” she said The website’s inaugural lesson is on hereditary breast and ovarian cancer, focusing on BRCA1 and BRCA2 genes.
“It was just fortuitous that our lesson on hereditary breast cancer came out on May 1 when these two big stories came out,” Schreiber-Agus said, referring to the Supreme Court decision on patenting genes, as well as to Angelina Jolie’s announcement that she had prophylactic mastectomies to reduce her risk of breast cancer resulting from her BRCA status. The BRCA lesson has supplemental materials, links to other resources, and links to supporting organizations, including Sharsheret, FORCE, and Bright Pink.
“The YU Center for Genetics has put out a wonderful resource for families learning about BRCA1 and BRCA2,” Rochelle Shoretz, Sharsheret’s executive director, said. “There is a 40 minute video that gives comprehensive [information] on genetics of BRCA1 and BRCA2.”
“We try to do the lessons every two months,” Schreiber-Agus said. “Upcoming lessons in early July will be on Crohn’s disease and ulcerative colitis,” which also are prevalent in the Ashkenazi Jewish population.
“The rationale was twofold,” she continued. “To protect your own health and find out information relevant to you as a human being and a Jewish person; and to know about genetics. This is a user friendly way to learn.”
Schreiber-Agus said that the UJA Federation of New York provided initial funding for developing the website.
More on: Supreme Court ruling on gene patenting changes the landscape for BRCA testing
“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.
On June 13, the Supreme Court ruled on gene patenting.
“We hold that a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated,” reads the opinion. The ruling describes how Myriad Genetics, Inc. “discovered the precise location and sequence of two human genes, mutations of which can substantially increase the risks of breast and ovarian cancer. Myriad obtained a number of patents based upon its discovery.” The court opinion reads like a biology textbook describing the science of DNA technology in detail. The human impact, however, is not addressed; that case could have a dramatic impact on the development, cost, and availability of genetic tests.
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