Genetic study for how men and women plan or experience BRCA

 
BRCA 1/2: The Experience of Being at Risk or Positive for the BRCA 1/2 Gene Mutation: A Pilot Study
 
I am currently conducting a study on the experience of individuals who are at risk or have tested positive for the BRCA 1/2 gene mutation. I am interested in speaking with:
• Men with high 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
I would like to address the substantial lack of knowledge surrounding the overall BRCA experience and/or the experience of those living with high cancer risk. I hope to examine the similarities and differences in this lived experience for men and women.
 
I will examine how men and women deal with their high risk and the decisions they make surrounding BRCA and cancer risk. I am also interested in roles of family, friends, and coworkers.
 
Through a brief online confidential survey, this research project hopes to significantly contribute to our understanding of the experiences of those who are living with genetic risk and undergo testing. It will also examine how these experiences impact their families. Additionally, we hope these findings will inform the genetic counseling process.
 
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 an/ or high cancer risk status similar and/or different?
 
I look forward to your contributions to this study and hope you will consider doing completing this survey.  If you are interested in doing so, please click the following link. It will direct you to an electronic consent form and then a confidential and anonymous survey. It should take 20 to 30 minutes to complete.
 
https://bostoncollegeaands.qualtrics.com/SE/?SID=SV_2meMcRSndGrMxYE
 
If you have any questions or concerns, please call me at my office at 617.552.4139 or email hesse@bc.edu.
  
Sharlene Hesse-Biber, Ph.D.
Professor, Department of Sociology
Boston College, Chestnut Hill, MA. 02467