Factors Influencing Reproductive Decision-Making in Individuals with a BRCA1 or BRCA2 Gene Mutation

About the Study

This study will survey individuals with a mutation in the BRCA1 or BRCA2 gene. We are seeking experiences and opinions of individuals regarding childbearing and reproductive choices. This will allow healthcare professionals, especially genetic counselors, to learn about what information is needed due to psychosocial and medical factors. The survey is approximately 25 minutes long to complete and is available online.

Click here to participate: https://www.surveymonkey.com/r/N6PJDHH 

What the Study Involves

If you agree to be in this study, we will ask you to do the following things:

1. Review and Sign the Informed Consent (Approximately 10 minutes)

• You will be expected to read an informed consent document in its entirety, and sign to proceed with the study

2. Complete the Survey (Approximately 25 minutes)

• The survey is divided into three sections with directions prior to each section
• Please read each question and answer the questions by selecting your answer from the options given, or by typing in your answer where applicable
• Questions will ask about BRCA status, age, biological children, factors that influenced your decision making when deciding to have children as well as opinions on preimplantation genetic diagnosis and prenatal diagnosis of BRCA1/2 variants.
• When you are finished, please submit the survey then go ahead and close the browser

Will research test results be shared with you?

• This study involves research tests that we do not expect will be useful for your clinical care. We will not directly share these results with you.

How long will you be in the study?

• Participation in the study will take approximately twenty to thirty minutes. There will be no follow up contact or surveys.

Lead Researchers/Study PIs and Affiliation

Student Investigator: Shea Walsh, [email protected]
Principal Investigator: Monika Zak-Goelz, [email protected], 516-299-3926
Long Island University Post – Masters of Science in Genetic Counseling
Institutional Review Board at Long Island University [email protected]

To participate in the survey, you must be 18 years or older and have a mutation in the BRCA1 or BRCA2 gene.

• If you are under 18.
• People with a result known as a variant of uncertain significance (VUS).