What if we had non-directive, unbiased genetic counseling all over the world?
Today I have fun talking to Victoria (Tori) Suslovitch, friend and coworker from the Yu Lab in Boston. Tori is a genetic counselor, and she has been supporting the logistical, educational, and emotional needs of patients and families enrolled in translational genomics studies for a long time.
Tori and I try to give an exhaustive overview of the world of genetic counseling, starting from her daily experience in the world of interventional genomics for ultrarare diseases. Tori moves between history, definitions, technologies, ethics challenges, direct experiences, to show us how genetic counseling is really about empowering people with applied knowledge in genetics and psychological support to take decisions that follow their values and priorities when it comes to genetics, also in the light of the uncertainty of a continuously evolving genetic knowledge. This is now entering several fields, from genetic decisions in cancers, to prenatal testing, interventional genomic experimental therapeutics for ultrarare diseases,… Tori explains the process and the profession of the genetic counselor, and she cleverly remarks how currently we still have unbalanced genomic datasets, with Western people by far most represented, and how the field also needs more diversity within the profession. We also discuss a few case studies on the broader ethics of genomics, such as the Chinese babies edited with CRISPR/Cas9 by He Jiankui against all the scientific community, and the delicate balance of risks and benefits when new genes are added to prenatal tests. This field is moving at a rapid pace, and I am sure that if I ever interview Tori again in a few years, we’ll have so much new knowledge to unpack!
If you liked this episode, please consider subscribing to The Biotech Futurist on Spotify, Apple Podcast, Stitcher, Google Podcast, or your favorite platform, and leaving a positive review. The growth of this podcast depends critically on word-of-mouth. Thank you for your help. Follow The Biotech Futurist on Instagram and YouTube, and DM or email me if you have any curiosity. You can always download the transcript of this episode and find the links to the papers we mention on my website, lucafusarbassini.com. The jingle is by Gabriele Fusar Bassini.
RESOURCES:
National Society of Genetic Counselors: https://www.nsgc.org/
[OUTREACH] The DNA Exchange: https://thednaexchange.com/
“I am a Genetic Counselor”: A qualitative exploration of field leaders’ perceptions of the title “genetic counselor”: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1184
[OUTREACH] Short, recent MIT commentary on the CRISPR babies scandal: https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/
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