Key Themes & Outreach Goals
10 Key Themes
1. Genetic information about hereditary cancer is life-saving information, because early detection or surgery to prevent cancer is key to long-term survival.
2. Knowing your family history of cancer is a powerful tool against the disease. Yet, there are many barriers to talking about cancer and disease within families. Families need tools to overcome painful memories and the stigma associated with past disease.
3. Genetic information is not purely medical or scientific; it has real psychological consequences for the individual. There need to be more support services designed to help individuals deal with this potentially devastating information.
4. For all the advances in genetic medicine, high-risk women still have limited options to avoid cancer. They can prophylactically remove breasts and ovaries before they become cancerous (surgery) or participate in frequent early-detection screenings (surveillance).
5. These decisions deeply impact relationships, career, sexuality, and fertility – decisions at the core of what it means to be a woman.
6. There are no easy answers, and no easy decisions. All women should be supported throughout the decision-making process to determine what is the right course of action for them. We also need to support the right of women and families not to know.
7. Although BRCA mutations occur in every ethnicity, some populations are more vulnerable than others. An estimated 1 out of 40 individuals from Ashkenazi descent are carriers, and they have recently discovered increased rates of the BRCA1 mutation in Hispanic, and young African-American women. Yet, studies show that African-American women are 5 less likely to be referred for testing.
8. The BRCA test currently costs $3000, and all research and testing are controlled exclusively by the company that owns the patent to the BRCA genes – thus limiting access to testing for underinsured and uninsured women.
9. Genetic Counseling should be a critical component of any genetic testing experience. Yet, genetic counselors are not billable health care providers, and Myriad Genetics is trying to train oncology nurses and primary care physicians to administer the test.
10. After 12 years of wide bipartisan support, the cracking of the Human Genome, and multiple new gene tests and personalized medicine, the Genetic Information Non-Discrimination Act (GINA) was finally passed into law on May 20, 2008!
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