WIB-Southern California: Rare Disease X – The Ethical Challenges in Genetic Testing

Thank you to our sponsor, Travere Therapeutics, as well as our dedicated volunteers, insightful panelists, and engaged attendees for making the WIB-Southern California event, Rare Disease X: The Ethical Challenges in Genetic Testing a success on Tuesday, February 20, 2024.

Key discussion points included

• A focus on the importance of patient-centered healthcare and the future of genetic testing, highlighting challenges in interpreting genetic results and the need for a deeper understanding of rare genetic diseases
• Emphasis on the critical role of genetic counseling in interpreting results and providing personalized guidance, along with the pressing issues of accessibility and affordability in genetic testing
• Genetic counseling is limited due to its lack of coverage by Medicare/Medicaid, underlining the need for expanded patient advocacy and support.
• Challenges surrounding newborn screening, including the absence of federal standards and incomplete testing panels
• Comprehensive education is important not only to address science but also to emphasize cultural competence and bedside manners in patient care.

Submitted by Liz Paz