CBPR - BRCA Genetic Testing Among Orthodox Jews
| Status: | Completed |
|---|---|
| Conditions: | Breast Cancer, Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 25 - Any |
| Updated: | 2/2/2019 |
| Start Date: | March 13, 2018 |
| End Date: | January 29, 2019 |
Understanding Social, Cultural, and Religious Factors Influencing BRCA Genetic Testing in the Orthodox Jewish Community
This study evaluates a web-based decision aid, named RealRisks, in promoting genetic testing
intention among Orthodox Jewish women. 50 Orthodox Jewish women will take a baseline survey,
self-administer the decision aid, and then complete two more surveys: one within one month of
completing the decision aid and one at 6 months after completing the decision aid.
intention among Orthodox Jewish women. 50 Orthodox Jewish women will take a baseline survey,
self-administer the decision aid, and then complete two more surveys: one within one month of
completing the decision aid and one at 6 months after completing the decision aid.
Breast cancer confers significant morbidity and mortality on women in the U.S. and ovarian
cancer is the most lethal gynecologic malignancy. Genetic determinants, such as germline
mutations in the BRCA1 and BRCA2 genes, confer the greatest impact on breast and ovarian
cancer risk. Hereditary breast and ovarian cancer syndrome (HBOC) is an inherited condition
that is most commonly associated with mutations in the BRCA1 and BRCA2 genes. An estimated
2-7% of breast cancers and 10-15% of ovarian cancers result from inherited mutations in BRCA1
and BRCA2. Mutation carriers have lifetime risks of breast and ovarian cancer of 40-60% and
20-40%, respectively.
The prevalence of three founder mutations in the BRCA1 and BRCA2 genes is up to 2.5% among
Ashkenazi Jews and genetic testing for this 'founder' panel is relatively inexpensive. About
1 in 40 individuals of Ashkenazi (central and eastern European) Jewish descent carry a
founder mutation in the BRCA1 (5382insC or 185delAG) or BRCA2 (6174delT) genes. Based upon
U.S. PreventiveServices Task Force guidelines, Ashkenazi Jewish women with any first- or
second-degree relatives with breast or ovarian cancer should be referred for BRCA genetic
counseling.
The perceived benefits and risks of genetic testing may vary by demographic, cultural, and
religious backgrounds. Orthodox Jews often consult with Rabbinic and communal authorities in
medical decision-making, which is consistent with their religious values. The Jewish
community is already familiar with genetic testing due to successful testing programs for
genetic disorders, such as Tay-Sachs, an autosomal recessive disease. However, there are
unique challenges to testing for BRCA genes, which are inherited in an autosomal dominant
fashion and predispose to adult-onset diseases, such as breast and ovarian cancer.
This study will test the efficacy of a patient-centered, web-based decision aid called
RealRisks in a pilot study of 50 Orthodox Jewish women, using a pre-/post-test design.
Genetic testing intention will be assessed at baseline, within 1 month after exposure to
RealRisks, and at 6 months. This pilot study will allow the investigator to determine an
effect size that can be used to design a well-powered randomized controlled trial in the
future.
The ultimate goal is to understand social, cultural, and religious factors influencing BRCA
genetic testing in the Orthodox Jewish community.
cancer is the most lethal gynecologic malignancy. Genetic determinants, such as germline
mutations in the BRCA1 and BRCA2 genes, confer the greatest impact on breast and ovarian
cancer risk. Hereditary breast and ovarian cancer syndrome (HBOC) is an inherited condition
that is most commonly associated with mutations in the BRCA1 and BRCA2 genes. An estimated
2-7% of breast cancers and 10-15% of ovarian cancers result from inherited mutations in BRCA1
and BRCA2. Mutation carriers have lifetime risks of breast and ovarian cancer of 40-60% and
20-40%, respectively.
The prevalence of three founder mutations in the BRCA1 and BRCA2 genes is up to 2.5% among
Ashkenazi Jews and genetic testing for this 'founder' panel is relatively inexpensive. About
1 in 40 individuals of Ashkenazi (central and eastern European) Jewish descent carry a
founder mutation in the BRCA1 (5382insC or 185delAG) or BRCA2 (6174delT) genes. Based upon
U.S. PreventiveServices Task Force guidelines, Ashkenazi Jewish women with any first- or
second-degree relatives with breast or ovarian cancer should be referred for BRCA genetic
counseling.
The perceived benefits and risks of genetic testing may vary by demographic, cultural, and
religious backgrounds. Orthodox Jews often consult with Rabbinic and communal authorities in
medical decision-making, which is consistent with their religious values. The Jewish
community is already familiar with genetic testing due to successful testing programs for
genetic disorders, such as Tay-Sachs, an autosomal recessive disease. However, there are
unique challenges to testing for BRCA genes, which are inherited in an autosomal dominant
fashion and predispose to adult-onset diseases, such as breast and ovarian cancer.
This study will test the efficacy of a patient-centered, web-based decision aid called
RealRisks in a pilot study of 50 Orthodox Jewish women, using a pre-/post-test design.
Genetic testing intention will be assessed at baseline, within 1 month after exposure to
RealRisks, and at 6 months. This pilot study will allow the investigator to determine an
effect size that can be used to design a well-powered randomized controlled trial in the
future.
The ultimate goal is to understand social, cultural, and religious factors influencing BRCA
genetic testing in the Orthodox Jewish community.
Inclusion Criteria:
- >= 25 years of age
- Completed a previous cross-sectional survey and agreed to future contact
- Eligible for BRCA testing based on Six Point Scale
Exclusion Criteria:
- Personal history of breast or ovarian cancer
- Prior genetic counseling or genetic testing for BRCA mutations
- Participated in previous RealRisks workshop
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Columbia University Medical Center Situated on a 20-acre campus in Northern Manhattan and accounting for...
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