Structural Racism in Genetic Testing

Certified genetic counselor Aishwarya Arjunan, MS, MPH, CGC, CPH expands on her recent tweet, which got a lot of attention from genetic counselors on Twitter:

I always use myself as an example, why should I get a test with a 55% detection rate for CF-23 while someone who is AJ has a 97% detection rate. We're both paying our insurance premiums/deductibles, why do I get a lower quality screen based on my ethnicity/race?

For context, Aishwarya is of South Asian ancestry. She discusses how outdated practice guidelines related to carrier testing are reflective of structural racism.

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Aishwarya’s Twitter Thread

Resources Related to Carrier Screening:

Genetic Support Foundation: Prenatal Carrier Screening

Access to Expanded Carrier Screening Coalition (AECS)

Findageneticcounselor.com: NSGC’s directory to find a genetic counselor in your area:

Sarnoff Center for Jewish Genetics: Carrier Screening

JScreen on Carrier Screening

Grey Genetics Resources:

Piet, Valerie. “Expanded Carrier Screening & Frequently Asked Questions.” Grey Genetics News Corner Blog Post.

Grey Genetics: Prenatal Genetics

Patient Stories Podcast: “A Short Life with Tay Sachs & Advocating for Preconceptual Carrier Screening.”

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Would you like to speak with a genetic counselor about carrier screening options or another area of concern? Grey Genetics is an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.