1. Who can participate in this study?
Both women and men age 25 or older, with at least one grandparent of Ashkenazi (Eastern European) Jewish origin are eligible to participate in the study. 95% of American Jews are Ashkenazi.
The pilot phase of the BFOR study will begin in the fall of 2017 in the New York, Boston, Philadelphia, and Los Angeles metropolitan areas.
In the future, BFOR may expand to other communities in the United States.
2. How is BFOR addressing an unmet need?
The BFOR study is pioneering a new effort to integrate genetic testing into medical care. This model uses an online platform. It brings together the convenience of direct-to-consumer genetic tests and the advantages of receiving health-related testing with the guidance of a medical care provider.
BFOR provides access to personalized medical care by partnering with study participant’s primary care providers. It will also offer access to consultations with leading experts in cancer research, genetics, and treatment.
BFOR seeks to make life-saving knowledge of BRCA mutations more accessible to a greater number of people. BRCA genetic testing has been available for more than 20 years. Yet, most people at high-risk for carrying a BRCA mutation have not been screened. Until now, for the most part, testing has been limited to those with a personal or family history of cancers associated with BRCA. However, family history identifies only about half of the people who have one of the BRCA mutations. It has been estimated that 90 percent of BRCA carriers do not know that they are BRCA-positive.
3. Why will this study focus on individuals of Ashkenazi Jewish ancestry?
The BFOR study comes at the beginning of a new era in medicine. In this new era, genetic testing will be used to improve and personalize medical care for us all.
Leading researchers believe that genetic testing of individuals with Ashkenazi (Eastern European) Jewish ancestry for certain kinds of BRCA mutations can demonstrate and refine this new model for genetic testing. The lessons learned from BFOR can be used more broadly to prevent and treat many types of cancer and other diseases.
There are several key reasons that this population has been selected for the BFOR study.
- Those of Ashkenazi Jewish ancestry carry certain BRCA mutations at a frequency at least ten times higher than the rest of the population. Yet, only about five percent of this population has been tested.
- BRCA genetic tests are cost-effective.
- Testing can lead to life-saving medical care.
4. What if I am of Sephardic Jewish Ancestry?
If your ancestors are Sephardic Jewish and you have no ancestors of Ashkenazi (Eastern European) ancestry, then the genetic testing in this study will not be sufficient for you. We recommend you speak with your health care provider about referral to a genetic counselor instead. You may also call the study for more information at 1-833-600-BFOR.
5. How do I participate in the study?
Click here to view the five simple steps required to participate in the study.
6. How much does it cost to participate in the study?
BFOR facilitates BRCA genetic testing at no cost to participants.
7. What privacy safeguards will protect my personal information?
Your medical information is protected by a federal law called HIPAA. The technology being used in this study is HIPAA compliant and safeguards are in place to protect personal information.
If you join the BFOR study, we will limit access to personal information about you. Your name and how to contact you will be known only by people working on the study. This will also include your primary care provider. People working on the study include genetic counselors and the staff who help get test results to you. It also includes people who maintain the study data base and online platform. Only those involved in the study will know your protected information.
8. Will BFOR examine all of my genes?
NO. BFOR testing will only examine three specific locations on the BRCA genes. These are known as the BRCA Ashkenazi Jewish founder mutations. It is possible to have a different mutation in the BRCA genes or a mutation in a different cancer predisposition gene. For this reason, it is important for those who test negative through this study to follow-up with a health care provider to determine whether or not more comprehensive genetic testing should be considered
9. Can I withdraw even after I consent to be a part of the study?
Yes. Participants are free to withdraw from the study at any time.
10. What if I live outside of the areas where BFOR is offering the study?
For the first phase of the study, only those living in the New York, Boston, Philadelphia, and Los Angeles metropolitan areas are eligible to participate. In the future, BFOR may expand to other communities in the U.S.
11. Who is leading BFOR?
BFOR is an independent research initiative. The lead investigators are experts in the fields of cancer research and genetics. BFOR team members have led many different efforts to identify genetic changes that cause cancer. They have also developed approaches to early detection, prevention, and treatment.
BFOR is made possible by the generosity of individual philanthropists. Outside Community and Scientific Advisory Boards provide input and oversight of the project.
Click here for a list of those on the BFOR Executive Committee, Scientific Advisory Board, and Community Advisory Board.
12. What are genetic counselors?
Certified genetic counselors are trained to be sensitive to your background and to give you information you need to make your own decisions regarding genetic testing. These decisions are based on your family history, and the genetics of breast and ovarian cancer. They are also based on benefits and risks of testing and what you can do given positive or negative results. There are other factors that may influence your decision-making process. Counselors can also explain issues of confidentiality and insurance reimbursement for genetic counseling and testing. If you opt for testing, genetic counselors will also help you understand what results mean for you and your family members. There are genetic counselors working with the BFOR Study.
13. If I decide to have genetic testing, what protections do I have against insurer or employer discrimination?
Effective in 2009, Congress passed the Genetic Information Nondiscrimination Act (GINA) into law. This law provides protection against most types of discrimination in health insurance coverage. It also generally protects against employment discrimination based on genetic test results. GINA prohibits employers from firing, refusing to hire, or discriminating against employees. This includes compensation, terms, conditions, or privileges of employment. In most instances, employers cannot disclose your personal genetic information. GINA generally prohibits insurance issuers from basing eligibility or adjusting premiums based on your genetic information. GINA provides protection from most types of discrimination in employment and health insurance coverage. But the law does have limitations. GINA does not cover the use of genetic information for life insurance, disability, or long-term care insurance policies. Additionally, protections may be limited for members of the military and some small business employees. A genetic counselor can help answer any questions you have about how genetic testing may affect your insurance or employment status.
14. Is BFOR connected to any commercial entities?
The BFOR study is entirely a not-for-profit research project, is not being performed to support any for-profit entities, and has no financial interests with respect to any companies or specific products.
15. What should I do if I encounter technical issues during registration?
While the registration experience is supported by all browsers, some work better than others. At this point we suggest you use one of the following browsers: Chrome, Safari, or Firefox. You may experience technical issues, such as video freezing, on Internet Explorer or Microsoft Edge.