Genomic Experience Project: HBOC and Fertility Study


How are young adults who have a hereditary risk for cancer making decisions about preventive surgeries and fertility? We want to hear about your experience.

For this study, we want to learn more about how young adults who have hereditary risk for cancer make choices about whether and how to have a family. This study is a sister study of the Clare Project. Our Clare Project work taught us that fertility and family planning decisions are important concerns faced by young adults who have Hereditary Breast and Ovarian Cancer Syndrome (HBOC) and we want to hear more.

We are looking for young adults, aged 18-44, who are willing to join a Tweet Chat.
We want to hear first-hand from people who have made decisions about family planning after they learned that they had a genetic risk of cancer. By sharing your experience with us, you will help us understand what matters most to young adults who have a hereditary risk for cancer when making decisions about building a family.

What are you asking me to do?

  1. Read the study information sheet
  2. Join an online Tweet Chat about HBOC and choices about family building and fertility
  3. Complete an anonymous survey

What does the Tweet Chat involve?

  • The Tweet Chat will ask questions about your experience with genetic testing and fertility preservation or other forms of family building
  • It will last about an hour
  • The Tweet Chat is voluntary
  • You can skip any questions you don’t want to answer
  • You must be at least 18 years old to join this study

What does the anonymous survey involve?

  • If you join the Tweet Chat, we will also ask you to fill out a short survey online to tell us a little more about the people on the chat
  • The survey will ask general questions about your age, gender, genetic testing, and choices you have made about fertility preservation or family building
  • It will take about 5-10 minutes to complete
  • The survey is voluntary
  • You can skip any questions you don’t want to answer
  • You must be at least 18 years old to join this study
  • The survey is anonymous. We are not asking for details that identify you.

How do I join or find out more?

If you want to be part of this study or learn more about it, please review our study information sheet. Find our Tweet Chat dates by following the Genomic Experience Project (@genexproject) or Marlaine Figueroa Gray (@frommarlaine) on Twitter. If you have other questions about the study, please message Marlaine on Twitter, or email project manager Tara Beatty at tara.c.beatty@kp.org.

Who is leading this study?

The Genomic Experience Project team is a small team of researchers at Kaiser Permanente Washington Health Research Institute (@frommarlaine, @norahhenrikson, @wernlikarenj). We have been working together for several years on a series of studies that help improve cancer care—and ensure that it is in line with what patients most need and want. 

Please visit the Genomic Experience Project Twitter page for more information about this project, and see the Clare Project Facebook page for more information about our past work.