Ethical Challenges in Genetic Testing for Terminally Ill People and their Families

About the Study

This study explores the ethical challenges and benefits of genetic testing in palliative care for terminally ill patients. It seeks to understand the experiences and decision-making of both patients and their family members. Participants, including palliative care patients or their adult family members, will complete a 1-hour virtual interview. To participate, contact [email protected] for more information or to schedule an interview.

What the Study Involves

This is a qualitative interview study. Participants, including palliative care patients or their adult family members, will be asked to complete a one-hour virtual interview via Zoom. The interview will explore their perspectives on genetic testing in palliative care, focusing on ethical challenges and decision-making experiences.

Before the interview, participants will go through a brief registration and prescreening process to ensure eligibility. There are no additional follow-up interviews or steps after the initial interview. Participants can skip any questions they do not want to answer, and all information will remain confidential.

There is no compensation for this study. 

If You Would Like to Participate

Send an email to Staci Connolly at [email protected]. The research team will reach you within a week to plan your participation.

Lead Researchers/Study PIs and Affiliation

Lead Researchers: Melissa Hayden and Staci Connolly
Faculty Advisor: Laura Moreno
Genetic Counseling Graduate Program
Affiliation: Bay Path University, Longmeadow, MA

• Currently aged 18 or older 
• English-speaking
• Willing to participate in a 1-2 hour interview
• Participants can be patients or adult family members (like spouses, children, or siblings) of patients who are receiving palliative care. The patient must have been eligible for and either received or been offered genetic testing or counseling for their condition. 
• Patient family members must have been involved in the genetic testing discussion and decision-making process.
   

• Younger than 18 or people who are unable to provide informed consent
• Non-English speakers
• Family members of patients who were not involved in the genetic testing/counseling discussion or decision-making process.
• Patients (or their family members) who are not terminally ill or not receiving palliative care.