Family Gene Toolkit
| Status: | Suspended |
|---|---|
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 4/21/2016 |
| Start Date: | September 2010 |
Development of a Family Communication and Decision-support Intervention for Women That Carry a BRCA1 or a BRCA2 Mutation and Their At-Risk Female Family Members
Mutations in the BRCA1/2 genes are the primary cause of hereditary breast/ovarian cancer
syndrome. Genetic testing identifies mutation carriers and enables them to manage their
cancer risk (i.e. chemoprevention, risk-reducing surgery, or intensive surveillance).
However, uptake of genetic testing among at-risk individuals is low, implying that
information about the disease and genetic testing is not being communicated effectively
among family members. Mutation carriers are distressed about disclosing test results, while
their relatives do not understand the implications of a positive test result for their own
health. Thus, interventions that support family communication about genetic risk, and
address psychological distress of family members could contribute to more effective
management of hereditary breast/ovarian cancer.
The project aims to develop a family communication and decision-support intervention to 1)
increase family communication about BRCA1/2 mutations; 2) reduce psychological distress
associated with these mutations; and 3) increase informed decision-making regarding uptake
of BRCA1/2 testing among at-risk family members. Focus groups with mutation carriers and
at-risk relatives will inform the refinement of the intervention, as well as timing and mode
of delivery. Two group, pre-post test study with a new sample of mutation carriers and
family members will be used to test the feasibility, acceptability, and effect of the
intervention.
syndrome. Genetic testing identifies mutation carriers and enables them to manage their
cancer risk (i.e. chemoprevention, risk-reducing surgery, or intensive surveillance).
However, uptake of genetic testing among at-risk individuals is low, implying that
information about the disease and genetic testing is not being communicated effectively
among family members. Mutation carriers are distressed about disclosing test results, while
their relatives do not understand the implications of a positive test result for their own
health. Thus, interventions that support family communication about genetic risk, and
address psychological distress of family members could contribute to more effective
management of hereditary breast/ovarian cancer.
The project aims to develop a family communication and decision-support intervention to 1)
increase family communication about BRCA1/2 mutations; 2) reduce psychological distress
associated with these mutations; and 3) increase informed decision-making regarding uptake
of BRCA1/2 testing among at-risk family members. Focus groups with mutation carriers and
at-risk relatives will inform the refinement of the intervention, as well as timing and mode
of delivery. Two group, pre-post test study with a new sample of mutation carriers and
family members will be used to test the feasibility, acceptability, and effect of the
intervention.
Inclusion Criteria for mutation carrier:
1. had genetic testing for BRCA 1 or BRCA 2, and received positive test results;
2. are older than 18 years;
3. speak English;
4. agree to invite in the study one female relative who has ≥10% of carrying a genetic
mutation AND did not have genetic testing; and
5. have access to an Internet enabled computer.
Inclusion Criteria for relatives
1. did not have genetic testing for BRCA 1 or BRCA 2;
2. are older than 18 years;
3. speak English; and
4. have access to an Internet enabled computer.
Exclusion Criteria:
- Women who have no female relatives
- Women who are unable to consent
- Women who do not have access to the Internet or the computer
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University of Michigan The University of Michigan was founded in 1817 as one of the...
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