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BRCA1 and BRCA2 Gene Mutation Study

Study to investigate experience of individuals at risk or who have tested positive for the BRCA1 or BRCA2 gene mutation

Researchers are conducting a study on the experience of individuals who are at risk or have tested positive for the BRCA1 or BRCA2 gene mutation. They are interested in speaking with:

  • Men with a family history of cancer that places them and/or their children at risk
  • Men who have undergone genetic testing (whether they tested positive or negative)
  • Women who have tested positive

The purpose of this study is to address the lack of knowledge surrounding the overall BRCA experience and/or the experience of those living with high cancer risk. Researchers hope to examine the similarities and differences in this experience for men and women, including how men and women deal with high risk and the decisions they make surrounding BRCA and cancer risk. They are also interested in roles of family, friends and coworkers.

Through a brief online confidential survey, researchers hope to inform the genetic counseling process by understanding the experiences of those living with genetic risk and examining how these experiences impact their families.

The survey will have specific questions, but the broader topics it will address include:

  1. How do individuals incorporate their BRCA-positive mutation status into their overall identity?
  2. How do individuals explain their BRCA status and risk to others, if at all?
  3. How are families and relationships impacted, if at all?
  4. What significant factors (social norms, relationships, employment, etc.) influence decision making?
  5. How and why do individuals seek genetic testing?
  6. What role does gender play in their decision making to be or not be tested?
  7. How are the male and female BRCA and/or high cancer risk status similar and/or different?

If you are interested in participating, please fill out an electronic consent form and the confidential and anonymous survey. It should take 20 to 30 minutes to complete.

If you have any questions or concerns, please call (617) 552-4139 or email hesse@bc.edu.

Sharlene Hesse-Biber, Ph.D.

Professor, Department of Sociology

Boston College, Chestnut Hill, MA. 02467

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