Previvors’ Perceptions of Preimplantation Genetic Testing (PGT-M) After a Cancer Predisposition Diagnosis

About the Study

The goal of this study is to investigate if healthcare providers are communicating with previvors about reproductive options like PGT-M, and explore how these conversations make previvors feel about their reproductive health and future family goals. Previvors can complete an online survey that will collect some background information and invite them to participate in a follow-up, virtual interview to talk further about their experiences if they are interested.

What the Study Involves

We are inviting participants to complete a short, anonymous questionnaire (5 minutes – 10 minutes) to collect some information about their background and hereditary cancer syndrome. The final question of the initial survey will ask: “Would you be willing to participate in a virtual interview (45 minutes – 60 minutes) about your experiences regarding awareness of reproductive options, specifically PGT-M, after a positive genetic test result reveals a cancer predisposition diagnosis for a student thesis project?” Those who respond “Yes” to this question will be asked to provide their preferred email address so they can be contacted for an interview by the student researcher.

These individuals will then be sent an email with more information about the study and what it entails, along with a resource guide and a list of dates and times they are available to schedule an interview that will take place within the following weeks. The virtual interview will be conducted over Zoom and led by the student researcher who will ask participants more in-depth questions about their knowledge and awareness of PGT-M after their cancer predisposition diagnosis, and how that has impacted their thoughts about their future family planning. The interview will take roughly 45 – 60 minutes for participants to complete.

Screening survey link: Previvors' Perceptions of PGT-M

Lead Researchers/Study PIs and Affiliation

Michelle Merrill (study’s PI) is a program director for Case Western Reserve University’s Genetic Counseling program.

• 18 years of age or older
• English-speaking
• Has been diagnosed with a hereditary cancer syndrome through positive genetic testing but has no personal history of cancer, identifying as a previvor (Ex: Hereditary Breast and Ovarian Cancer syndrome (HBOC)/BRCA1, BRCA2, or PALB2 genes, Lynch syndrome/MLH1, MSH2, MSH6, or PMS2 genes, TP53 gene, Familial Adenomatous Polyposis syndrome (FAP)/APC gene, etc.)

• Under the age of 18
• Non-English-speaking 
• Have a personal history of a hereditary cancer