Survey for People who Received a Negative Genetic Test Result for a Known Mutation in the Family
Surveys, Registries, Interviews
People who received a negative genetic test result
Study Contact Information:
Study Coordinator: Brianna D’Ambrosio, Master’s in Genetic Counseling Student, University of Maryland School of Medicine, [email protected]
Principle Investigator: Kristin Maloney, MS, CGC, Master’s in Genetic Counseling Training Program, University of Maryland School of Medicine, [email protected]
What Factors Influence Survivors’ Guilt in Individuals Who Tested Negative for a Known Hereditary Cancer Syndrome?
About the Study:
The goal of this study is to understand the experiences of people who have received a negative genetic test result for a known familial mutation (i.e., a “true negative” result) and determine what factors influence the presence of survivors’ guilt in these individuals. Survivors’ guilt is an emotional response in which a person has feelings of guilt after surviving a life-threatening situation when others did not. Data from this study may help providers better understand the impact a negative test result can have on a patient and enable more effective pre- and post-test counseling.
What the Study Entails:
This study consists of a brief survey that will take about 20 minutes. The survey will begin with screening questions to confirm that you are eligible for the study. If you are eligible, the survey will then ask you a series of demographic questions followed by history collection. Additionally, we will ask questions about your emotions around your genetic testing result, your experience with genetic testing/counseling, and provide a space for you to share any additional comments.
Click here by 12/15/2023 to participate: https://bit.ly/3C2ky3k
- are 18 years or older
- have a relative who has a genetic mutation associated with cancer risk
- had genetic testing for the known familial mutation and tested negative, meaning the mutation was not identified
- speak English
- have not had genetic testing or did not test negative
- do not speak English