Exploring the Attitudes of Those Who Tested Positive for an Adult-Onset Cancer Predisposition as a Minor
https://www.facingourrisk.org/research-clinical-trials/study/316/exploring-the-attitudes-of-those-who-tested-positive-for-an-adult-onset-cancer-predisposition-as-a-minor
Surveys, Registries, Interviews
Survey and interview for people who tested positive for an adult-onset cancer predisposition as a minor
Study Contact Information:
Contact Kristin Maloney by email at [email protected]
About the Study
Predispositional genetic testing in minors is a controversial discussion. While current guidelines encourage providers to defer testing until adulthood, many providers still permit this testing at the request of parents. This study aims to interview those who tested positive for an adult-onset cancer predisposition as a minor to highlight their attitudes regarding predispositional genetic testing in childhood. Results may help guide clinicians in how they approach and navigate conversations about genetic testing in presymptomatic minors.
What the Study Involves
Initially, you will be asked to complete a survey, which includes providing your informed consent and information regarding your genetic testing journey. The survey should take no more than 10 minutes. After completing the survey, we will review your responses and determine if you are eligible for the study. If you are eligible, we will contact you to schedule a 45-minute virtual interview. Interviews will be video recorded and transcribed. Within a week of the completed interview, participants will receive a $25 electronic Amazon gift card to their email as compensation for their time.
Scan the QR code or click here to take the survey.
Lead Researcher
Kristin Maloney – University of Maryland School of Medicine – Assistant Director, Student Research, Master’s in Genetic Counseling Program
This Study is Open To:
You are eligible to participate in this study if you are:
- currently 18-88 years old,
- have tested positive for an adult-onset cancer predisposition syndrome/gene (such as Hereditary Breast and Ovarian Cancer, Lynch Syndrome, or other breast cancer genes) AND
- were younger than 18 years old at the time of testing
This Study is Not Open To:
People are not eligible for this study if they:
- do not meet the eligibility criteria
- are non-English speaking
- are unable to pass the “Verbal evaluation of understanding” assessment as part of the informed consent process
About FORCE
FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.