Breast Cancer, Ovarian Cancer
Conditions
Keywords
Breast, Ovary, Mutation carrier
Brief summary
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.
Interventions
BEHAVIORALquestionnaire, interview
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.
Sponsors
The New School for Social Research
Hadassah Medical Organization
New York University
New York Presbyterian Hospital
Memorial Sloan Kettering Cancer Center
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to 39 Years
Healthy volunteers
No
Inclusion criteria
* Females and males who are carriers of deleterious mutations in the genes BRCA1 or BRCA2. * Over age 18 and: 1. For women, less than 43 2. 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
Design outcomes
Primary
| Measure | 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
| Measure | 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 |
Countries
United States
Outcome results
None listed