Part 3: Stitching the Values of Our Future Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a dystopian future. As …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 2: Weaving Together Unlikely Allies in Defense of Good Parenting Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 1: The Threads of 20th Century Eugenics Interwoven with Modern Pronatalism Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
By Andrea Schelhaas, Stephanie Meredith and Katie Stoll In November 2021 under the Accelerated Approval Program, the U.S. Food and Drug Administration announced approval of Voxzogo (vosoritide), a drug developed by BioMarin for the purpose of increasing linear growth in children with achondroplasia with open growth plates (individuals who are actively growing). Achondroplasia is the …
Pharma’s Role in Practice Guideline Development: Achondroplasia as a Case Study Read More »
This article is written by Dr. Stephanie Meredith, the Development Director at Genetic Support Foundation and the Supervisor of our Lettercase National Center for Prenatal and Postnatal Resources. She is also the mother of a young man with Down syndrome and has worked in disability advocacy for nearly 25 years. The past two weeks have …
Join Patients in the Fight to Save Medicaid and Social Services Read More »
Part 1: We work hard for the money (and by money, I mean $29.61) By Katie Stoll, MS, CGC In this series, we will review challenges with reimbursement for genetic counseling services. The current system undervalues genetic counseling, leading to a strain on clinics and hospitals, overutilization of genetic tests, burnout for genetic counselors, and …
Financial Challenges in the Fight for Independent Genetic Counseling Services Read More »
As a rare disease genetic counselor – who both has a rare genetic condition and serves rare disease patient populations as a provider – I have a Rare Disease Day Public Service Announcement for you: Do not order Direct-to-Consumer testing.
If you have heard GSF board member, Stephanie Meredith, share her research on the experiences of patients and families who have received a prenatal or postnatal diagnosis of Down syndrome, you will be familiar with the term “flashbulb memory”. The term flashbulb memory was introduced to describe memories of emotionally charged, traumatic or surprising events …
By Katie Stoll The Polygenic Embryo ELSI Research “PEER Group”, an NHGRI-funded research consortium that aims to build an initial framework for the consideration of the ethical, legal, and social implications (ELSI) of Polygenic Embryo Screening (PES), recently hosted a conference titled, Ready or Not? The Science and Ethics of Polygenic Embryo Screening. I was …
Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives Read More »
By Deborah Westover, MSN, RN, CNL, CNRN & Rachel Westman, MS, CGC Dementia is a generic term commonly used to describe a decline in a person’s cognitive functioning, such as changes in their memory, judgment, or reasoning. Dementia is an umbrella term, meaning it covers a broad category of disorders that affect the brain. Dementia …
