BRCA 1 and BRCA 2: Interviews on Genetic Testing and Individual Experiences

About the Study

This study seeks to interview individuals who come from families with high cancer risk and/or who have tested positive for a BRCA1 or BRCA2 genetic mutation. We are also interested in individuals who may be contemplating BRCA1 or BRCA2 genetic testing; those who feel they lack access to genetic testing or who feel they lack information and social and medical support with regard to getting access to genetic testing; those who have been diagnosed with breast cancer who may be at high risk for a range of hereditary cancer. We are especially hoping to reach racially and ethnically diverse males and females whose experiences are often left out of research studies.

Click here for English and Haga clic aquí para español to learn more or participate. Participants selected for an interview will receive a $40 Amazon gift card. 

What the Study Entails

• We would like you to complete an anonymous, confidential online survey. The total amount of time you will be asked to volunteer will be approximately 30 minutes.
• You will be asked to identify your perceptions and concerns surrounding your high hereditary cancer risk, your overall feelings concerning genetic testing for the BRCA1 or BRCA2 gene. Please note that you can skip any question(s) that you do not wish to answer for any reason.
• After completing the online survey, you will be asked if you would like to leave your email address so that you can be contacted for a phone interview. Phone interviews provide the opportunity for participants to expand upon some of the questions and topics included in the online survey. Phone interviews are optional and are conducted after the participant has completed the online survey. Phone interviews will be audio-recorded and will last approximately 40 minutes.
• Please be sure to leave your email address at the end of the survey if you would like to participate in a phone interview. We want to hear your story.

Collected data will be kept in locked and encrypted data storage file. At no point will we publicly use any uniquely identifying information from your interview.

Lead Researchers/Study PIs and Affiliation

Lead Researcher: Sharlene Hesse-Biber

Professor of Sociology and Director, Gender and Women’s Studies

Affiliation: Boston College, 140 Commonwealth Avenue, Chestnut Hill, MA, 02467

The participant guidelines for the study are as follows:

• 18 years or older AND at least ONE (1) of the following conditions:
  • You have a family history of breast/ovarian cancer or have a breast/ovarian/prostate cancer diagnosis
  • You have considered genetic testing or tested positive for the BRCA1 or BRCA2 gene
  • You have an interest in seeking out information about genetic testing or screening.
  • You have undergone genetic testing

Any interview participant who fits any one of the above guidelines and is interested in the study can take our confidential survey! 

People are not eligible if:

• they are younger than 18
• they do not have any of the following conditions:
  • a family history of breast/ovarian cancer or have a breast/ovarian/prostate cancer diagnosis
  • have considered genetic testing or tested positive for the BRCA1 or BRCA2 gene
  • have an interest in seeking out information about genetic testing or screening.
  • undergone genetic testing