Please note that at this time, recruitment for this study has been completed and we are no longer enrolling participants.  As such there are no clinic appointments available. We are currently in the process of completing genetic testing.  If you have still not received your results, we anticipate that you should receive them within one year of your initial appointment. 

If you are interested in participating in this study please read all of the following information, then follow the instructions in the "How to Participate" section below.

Investigators at Women's College Research Institute are conducting a large study of familial cancer in Jewish women in Ontario and some findings have already been released. As a part of the research, Jewish women are being offered genetic testing for the two breast cancer genes (BRCA1/BRCA2). This study was started in 2008 by Dr. Steven Narod and Dr. Kelly Metcalfe and had upwards of 2,000 participants from across Ontario. This study was extended in December 2009. The scientists hope to recruit all interested participants over the course of one year.

The purpose of this study to identify women with a genetic predisposition to developing cancer who otherwise might not come to the attention of the medical community and receive the preventive care and screening that might benefit them. We would like to know how common mutations are among the Jewish population and see if this population is satisfied with the genetic testing process or if there are ways that it could be improved. Click here to view the Investigators' Study Booklet.

The extension of this study has been funded via support from the Women’s College Hospital Foundation.

Background
About five per cent of women in Canada with breast cancer and about 12 per cent of women with ovarian cancer are born with an inherited genetic predisposition to cancer. In many cases, these women will have a strong family history of breast or ovarian cancer. In families with hereditary cancer, there may be several individuals affected with breast cancer or ovarian cancer in more than one generation of the family. The genetic susceptibility to develop breast and ovarian cancer in these families is passed from one generation to another, through both women and men. On average, individuals in cancer families develop cancer at a younger age than the general population and they may develop cancer in both breasts (bilateral breast cancer). Many of these family clusters of cancer are caused by inherited mutations in the BRCA1 or BRCA2 genes. If individuals are known to have a genetic predisposition to cancer, many management options are available to them to reduce the risk of developing cancer or to detect cancer at an early stage.

In some populations, there are more hereditary breast/ovarian cancers than in others. This is true for the Jewish population. Both Ashkenazi and Sephardi Jews may inherit a mutation, but mutations are more common in Ashkenazis (Jews of Eastern European origin). In this group, about one in 45 men or women carry a genetic predisposition to breast and ovarian cancer. We can test for this genetic tendency to get cancer by a simple saliva test. Currently the test is offered in Ontario to selected women based on their personal history of cancer or their family history of cancer. We are now offering this test (as part of a research study) to all adult Jewish women in Ontario who wish to know their mutation status, including those without a personal or family history of cancer.

Who can participate?
Participation in this study is completely voluntary. Only women who fulfill all of the following criteria may participate:

• Jewish (Ashkenazi or Sephardi)
• 20-70 years of age
• resident of Ontario
• have not had previous genetic testing for the BRCA1/2 genes
• willing to attend our research centre in Toronto to give a saliva sample

Why participate?
You will receive (at no charge) a BRCA1 and BRCA2 genetic test for an inherited predisposition to breast and ovarian cancer. The research team will be available to provide the most current information regarding genetic risk assessment and will provide a referral to screening centres for breast and ovarian cancer if requested. Women who are found to have a BRCA1 or BRCA2 mutation will receive personal genetic counselling and be given individualized cancer risks and management options. Being identified as a BRCA1 or BRCA2 mutation carrier can mean you will have access to additional screening (such as breast MRIs) that may not otherwise be available, and referrals requested by the women will be arranged.

What does participation entail?
If you wish to participate in this study, you can contact us by phone or via the online sign-up. The study co-ordinator will contact you to explain the study further. You will then be offered the option of scheduling a clinic appointment and arrangements will be made to send you the study package (either by mail or through our online system). The study package will include a consent form, a study booklet about BRCA1 and BRCA2 testing, and three brief questionnaires.

Before your appointment
You should review the study package and complete the questionnaires and consent form prior to your scheduled appointment, if you wish to participate in the study. If you received the package by mail, please bring all completed forms to your appointment. If you prefer to view or complete the forms online, click here to see the necessary forms. Your appointment will take place in our study centre on the seventh floor of 790 Bay Street. It will take approximately 20 minutes. Appointments will begin in March 2010.

At your appointment
The study co-ordinator will ensure that the relevant background forms and questionnaires have been completed, including the consent form. A saliva sample will be taken and will be sent to the laboratory for genetic testing.

After your appointment
Once processing of your sample has been completed, the genetic test result will be made available to you. It might take up to one year to receive your results after your clinic appointment. If you have a negative (normal) genetic test result, the information will be given to you in a letter or you may receive a telephone call to give you your results (it will depend on your family history of cancer). In the event that you test positive for a BRCA1 or BRCA2 mutation, you will be given an appointment to visit the study centre for further genetic counselling. This appointment will include discussion of the results, and follow up referrals will be completed. Positive results will be confirmed by a second test.

One year following enrollment in the study, we will mail you one additional questionnaire to complete. (If you prefer to view or complete the questionnaire online, click here.) This questionnaire will ask you about your experience with genetic testing and your satisfaction with the process.

How can you participate?
Please note that if you wish to participate in this study, there are only two ways in which you can enrol. We wish to assure you that ALL interested individuals will be contacted and an appointment will be arranged sometime over the duration of one year. Interested individuals must sign-up themselves. Please do not attempt to sign up on someone else's behalf. Under no circumstances will walk-in enrollments or appointments be accepted.

Please choose only ONE of these two enrollment options, as signing up more than once will delay the booking process:

• Online: In order to facilitate the enrollment process, we encourage you to enrol online to participate.
• By phone: You can provide your contact information at the study's voice mail at 416-351-3795. Please note that due to the large volume of calls, this is the only phone number dedicated to the study. If you wish to speak to someone, please leave a message and the study co-ordinator will return your call.

Once you enrol by providing all the requested information, the study co-ordinator will contact you to book an appointment within three months of your intial sign-up date. Please note that clinic appointments will begin on March 1, 2010.

If you would like more information about this study:
Please choose only ONE of these two options; the use of any other method will result in a delay in our response.

• By email: we encourage you to contact us by email at jewishstudy@wchospital.ca
• By phone: you may also call the study’s voice mail at 416-351-3795. Please leave a message and the study coordinator will return your call.

Due to the large volume of participants we would appreciate your patience in receiving our response.