A Pilot Study Investigating the Views of Key Stakeholders on Somatic and Germline Cancer Testing

About the Study

The goal of this study is to explore individuals’ views on somatic and germline cancer testing to inform future studies. This is a 10-15 minute web survey research study enrolling people with a history of cancer, cancer genetic testing, and an inherited mutation or variant of uncertain significance (VUS) in a hereditary cancer gene (e.g., APC, ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, EPCAM, HOXB13, MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2, PTEN, RAD51C, RAD51D, STK11, TP53).

What the Study Involves

This pilot study is a mixed-methods study exploring individuals’ views on somatic and germline cancer testing. The study consists of a web survey which will take about 10-15 minutes to complete. Participants can voluntarily provide their email address to express interest in an optional follow-up interview.

Eligibility

 Participants are eligible to participate in this research study if they:

• Are 21 years or older, AND
• Have had cancer (either in the past or currently), AND
• Have had cancer genetic testing, AND
• Have an inherited mutation (germline) or variant of uncertain significance (VUS) in a hereditary cancer gene (e.g., APC, ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, EPCAM, HOXB13, MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2, PTEN, RAD51C, RAD51D, STK11, TP53) 

Process

• If participants are determined to be eligible for this research, they will be able to proceed to the survey, which includes questions about their cancer history, germline and somatic testing history, who they discussed their genetic test results with, the types of practice settings their testing was ordered in, preferences on how to refer to somatic testing, interest in the option for a follow-up interview, and optional demographic questions. Participants may skip any questions they do not want to answer.
• Participation in this survey is voluntary.

Please click here to begin.

Lead Researcher

Principal Investigator: Kunal Sanghavi, MBBS, MS, CGC

Senior Program Manager - Genetic Counseling, The Jackson Laboratory for Genomic Medicine
10 Discovery Dr.
Farmington, CT 06032
[email protected]