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The Experiences and Needs of People With a Variant of Uncertain Significance (VUS) on Genetic Tests for Hereditary Cancer Risk

The Experiences and Needs of People With a Variant of Uncertain Significance (VUS) on Genetic Tests for Hereditary Cancer Risk

Surveys, Registries, Interviews

Study Contact Information:

If you have questions, please contact the Primary Investigator: Danielle Gould, PhD Candidate by phone: 413-545-9922 or by email

If you are interested in learning more about this study, please follow this link: https://bit.ly/35j0dXp


The Experiences and Needs of People With a Variant of Uncertain Significance (VUS) on Genetic Tests for Hereditary Cancer Risk

About the Study

We are conducting a study of people with a Variant of Uncertain Significance (VUS) in order to learn more about their experiences and needs in understanding the test result for themselves and their family members. Additionally, we are trying to understand the process of communication with their first-degree relatives and healthcare providers about genetic risk and risk management.

If you are interested in learning more about this study, please follow this link: https://bit.ly/35j0dXp

Type of Study

This study is part of a doctoral dissertation. We are gathering data primarily through interviews with participants.

What the Study Entails

  • A screening survey to determine eligibility (Expected time to complete: 10 minutes)
  • If eligible, you will then be asked to complete an online consent and provide some information about yourself and your personal or family history of cancer (Expected time to complete: 20 minutes)
  • An interview conducted via telephone or video calls, where you will be asked questions about your feelings and experiences with having a VUS (Expected time to complete: 20-40 minutes)
  • Your total time commitment is expected to be less than 80 minutes

Study Site

University of Massachusetts, Amherst College of Nursing

(No travel is required, the data collection for this study is entirely remote)

This Study is Open To:

You are eligible to participate if you:

  • Are over age 18
  • Are able to speak English
  • Can participate in an interview via telephone or video chat
  • Had a variant of uncertain significance (VUS) on a genetic test for hereditary cancer risks
This Study is Not Open To:

You are not eligible to participate if you:

  • Had a positive or negative genetic test with no VUS identified
  • Can not communicate in English