Awareness and Attitudes Regarding Prenatal and Preimplantation Genetic Diagnosis for Inherited Breast/Ovarian Cancer Risk

Study Overview
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Brief Summary
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We are inviting you to participate in a study of how people who have had genetic counseling for breast/ovarian cancer risk feel about certain reproductive technologies, preimplantation genetic diagnosis (PGD) and prenatal genetic diagnosis (PND), that may reduce the chances of passing increased risk onto one's children. We would also like feedback from patients who have been to our clinic in the past on the best ways to talk about PGD and PND during genetic counseling sessions. We are seeking both the opinions of people who are interested in these technologies and those who are not. It does not matter whether you have heard of PGD or PND before - you can still participate. Your past experience with genetic counseling is valuable to us in deciding how to communicate this information during sessions.

Official Title
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Awareness and Attitudes Regarding Prenatal and Preimplantation Genetic Diagnosis for Inherited Breast/Ovarian Cancer Risk

Conditions
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Breast Cancer, Ovarian Cancer

Intervention / Treatment
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* Behavioral: questionnaire, interview


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Females and males who are carriers of deleterious mutations in the genes BRCA1 or BRCA2. Over age 18 and: For women, less than 43 For men, less than 50. Received genetic testing and counseling for BRCA. Fluent in English. Exclusion Criteria: Patients who are currently under treatment (chemotherapy, radiation) Individuals who refuse to discuss reproductive issues. Unable to give informed consent due to physical, cognitive, or psychiatric disability

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 39 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| 1<br>25 female and 5 male BRCA carriers | Behavioral: questionnaire, interview<br>* You will be asked to make a one-time visit to MSKCC. At that research visit, you will be asked to complete a short questionnaire about your knowledge of various reproductive technologies relevant to individuals at hereditary risk. Then you will watch a short presentation about these reproductive technologies and complete a second brief questionnaire to assess your understanding of the presentation. Afterwards, you will meet with an interviewer one-on-one for about one hour, during which time you may share your thoughts and feelings about the use of these reproductive technologies.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| To explore the attitudes of BRCA1/2 mutation carriers about PGD/PND, most notably benefits and drawbacks, as well as ethical and emotional considerations; |  | conclusion of study | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| To elicit opinions from patients who have previously undergone BRCA1/2 genetic counseling as to when and how information about PGD/PND should be presented (e.g., timing, level of detail,etc) |  | conclusion of study | 
| To explore whether different themes emerge for subgroups of patients (completed childbearing vs. not; affected vs. unaffected). |  | conclusion of study | 
| To gain preliminary data on themes that might be particularly important to male BRCA1/2 carriers. |  | conclusion of study | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Breast, Ovary, Mutation carrier