Ep 04: I Wish Others Knew They Could Get Answers About Kidney Disease From Genetic Testing, With Mary-Beth Roberts The Kidney Collective podcast

Ep 04: I Wish Others Knew They Could Get Answers About Kidney Disease From Genetic Testing, with Mary-Beth Roberts

25d ago 33:27

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In this episode of The Kidney Collective™, Tamara and Mike chat with Mary-Beth Roberts, a pediatric and adult genetic counselor, about the role of genetic counselors, the importance of genetic testing in kidney disease, and the impact of genetic information on patients' treatment plans. Mary-Beth shares insights on the APOL1 gene variants, the process of genetic testing, facing barriers and improving access to genetic counseling, the future of genetics in nephrology, and the need for increased public awareness.

Mary-Beth specializes in renal genetic counseling at the Cleveland Clinic and is the co-founder of the National Society of Genetic Counselors (NSGC) Renal Genetics special interest group. She is involved in various national and international initiatives to promote better understanding of kidney genetics. We were honored to have Mary-Beth participate in a roundtable discussion on Capitol Hill for AKF’s inaugural APOL1-Mediated Kidney Disease (AMKD) Awareness Day in 2024.

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Chapters

1. Introduction to The Kidney Collective (00:00:00)

2. How Mary-Beth Got Into Genetic Counseling (00:02:21)

3. What a Genetic Counselor Does (00:03:13)

4. Specializing in Kidney Genetics (00:03:58)

5. Who Should Consider Genetic Testing for Kidney Disease? (00:06:09)

6. How Genetic Testing and Counseling is Rapidly Changing (00:08:11)

7. How Someone's Treatment Can Change After Genetic Testing: Primary Hyperoxaluria (00:09:40)

8. How Do You Get a Genetic Test? What is the Process? (00:12:12)

9. Common Testing Hesitations and Ways of Addressing Them (00:16:35)

10. Protecting Your Genetic Results and Data (00:18:57)

11. Direct-to-Consumer Testing vs. Provider-Ordered Testing (00:20:18)

12. APOL1 Gene Variants and Kidney Disease (00:22:10)

13. Overcoming Testing Barriers to Access and Spreading Awareness (00:24:15)

14. The Future of Genetic Testing and Nephrology (00:27:52)

15. Recap of Mary-Beth's Conversation (00:30:14)

6 episodes