Molecular Autopsy in Sudden Cardiac Death Cases

Dear SADS Member,

          My name is Lauren Slevin and I am a second-year student in the Genetic Counseling program at California State University, Stanislaus. I am inviting you to participate in my Master’s thesis study regarding families’ experiences with genetic testing for a loved one who passed away suddenly due to a cardiac condition. This type of genetic testing is referred to as “post-mortem” genetic testing. Genetic counselors specializing in cardiovascular genetics are trained to help coordinate post-mortem genetic testing, and it is important for them to understand how this process impacts families and whether family needs are met. Genetic counselors would benefit from additional literature to help guide clients through this journey.

          To better understand whether clients and genetic counselors view the post-mortem genetic testing process in a similar way, I am interviewing people who have been through the post-mortem genetic evaluation and testing process for their loved one as well as genetic counselors practicing in cardiovascular genetics. This study will compare the process from the client and professional perspective. Any differences in the study between the two groups could be utilized as part of future recommendations concerning the type of information provided to clients considering genetic testing for a loved one following his/her sudden cardiac death.

          Participation in this project would involve one ~45-minute interview via phone or Skype, scheduled at your convenience. Eligible people include anyone who is over the age of 18; willing and able to conduct the interview in English; and has had post-mortem genetic testing done for a relative who passed away suddenly from a cardiac condition of any kind. It does not matter what the results of the genetic testing were. Interviews will be transcribed word-for-word. There will be no identifying information associated for any participant when the data are processed and analyzed as part of my thesis work. Responses are completely confidential, and only I and my research team will have access to the interviews.

          If you would like to participate, please email me, Lauren Slevin, at LSLEVIN@csustan.edu. If you are unsure whether you qualify for this study, please feel free to reach out; I am happy to walk through the criteria with you to determine whether you qualify. Every client who completes an interview will be entered into a drawing to receive one of three $50 gift cards to Amazon.com to thank you for your time.

          I am hopeful that the results of this study will help genetic counselors and other healthcare professionals to provide the utmost thoughtful and comprehensive care possible to families who have tragically and suddenly lost a loved one. I am eager to hear your thoughts.

 
Thank you for your consideration,
 
Lauren Slevin, PhD
Graduate Student, Genetic Counseling Program
California State University, Stanislaus
lslevin@csustan.edu

Janey Youngblom, PhD
Research Advisor & Thesis Committee Chair
Associate Director, Genetic Counseling Program
Professor of Biological Sciences
California State University, Stanislaus
jyoungblom1@csustan.edu