Women's College Research Institute

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Jewish Study

Investigators at the 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 and BRCA2). This study was started in 2008 by Dr. Steven Narod and Dr. Kelly Metcalfe and has upwards of 6000 participants from across Ontario as of 2012. This study is currently being extended from April 1st to August 31st, 2014 and it is estimated that up to 600 additional women will participate.

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 the BRCA1/2 mutations are among the Jewish population and to determine if this population is satisfied with the genetic testing process or if there are ways that it could be improved.

To view the Investigators Study Booklet, please click here.

Background
About 5% of women in Canada with breast cancer and about 12% 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 is more hereditary breast/ovarian cancer 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 1 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 or blood 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. As of 2014, only women that fulfill all the following criteria may participate:

  • 20-70 years of age 
  • Resident of Ontario
  • Have not had previous genetic testing for the BRCA1/2 genes
  • Are Jewish (Ashkenazi or Sephardi; must have at least one grandparent who is Jewish)


Why should you participate in this study?
You will receive (at no charge) a BRCA1 and BRCA2 genetic test for an inherited predisposition to breast and ovarian cancer. 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 will allow access to additional screening (such as breast MRIs) that may not otherwise be available, and referrals requested by the women will be arranged.


Participation in this study:
Participation in this study requires completion of a consent form, three study questionnaires, and provision of a saliva sample. Please note that all study questionnaires must be completed and provided with your saliva sample in order to process your sample at the laboratory for the three Jewish BRCA 1 and BRCA2 mutations. If you are unable to provide a saliva sample, you may be able to arrange an appointment at our clinic to provide a blood sample instead.

Once you have completed the questionnaires for this study and collected your saliva sample, please return the study package to our centre. This can be done by mail, or in person either by dropping off the sample to the study centre or arranging a clinic appointment. Our study centre is located at 790 Bay Street, 7th Floor, Toronto.

In addition, you will also be contacted to complete a brief questionnaire one year after your genetic testing is completed to ask about your level of satisfaction and any cancer-related distress following participation in this study.

Participants of this study are able to view electronic copies of the study materials by clicking here.

 

Results of genetic testing in this study:
Upon completion of genetic testing, the genetic test result will be made available to you. It might take up to one year to receive your results after we receive your completed study package. If you have a negative (normal) genetic test result, your test result will be provided to you with a letter via regular mail or e-mail depending on your preference. In the event that you test “positive” for a BRCA1 or BRCA2 mutation, our clinic will contact you by phone to arrange an appointment to visit our study centre for genetic counselling. This appointment will include discussion of the results, and any follow-up referrals as needed. You will also be asked to provide a second sample at this appointment to confirm the positive test result.


How can you return your study package?
Please use any of the three options listed below to return your study package:

  1. Please mail (at your own expense) your completed consent form, three questionnaires, and saliva sample to our clinic at Jewish Study, 790 Bay Street, 7th Floor, Toronto, Ontario, M5G 1N8. If you choose this method of participation, you need to inform us that your package has been mailed either by using the online form or by phone (416-351-3795). This will enable us to notify you within ten business days of receiving your study package at our study centre. Please note that we are not responsible for items lost in the mail.
  2. Please book an appointment to our clinic either using our online system at http://www.book-appointment.com/research/  or by calling our study voicemail at (416) 351-3795. The study coordinator will call you back to arrange the appointment. At you appointment, you will be asked to provide your completed consent form, three study questionnaires, and saliva sample. Please collect your saliva sample and have your questionnaires completed prior to your appointment. However, if you prefer, you can provide your saliva sample at the appointment. If you are unable to provide a saliva sample, please let us know and we will arrange for you to provide a blood sample at our appointment instead.
  3. Please drop off your completed study package to our study centre located at 790 Bay Street, 7th Floor, Toronto, Ontario, M5G 1N8. Packages may be dropped off Monday to Friday between the times of 10 am to 4 pm.


How can you contact us?
If you would like more information, or have any questions please contact us by phone at 416-351-3795 or by email at jewishstudy@wchospital.ca

 

 

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