We’re happy to announce that PIRC member Stephanie Meredith is the first author on a new publication in Prenatal Diagnosis. In collaboration with several PIRC members and others, Stephanie has written an article exploring the challenges that prenatal cfDNA screening has posed to non-profit patient advocacy groups (PAGs). Continue reading Patient non-profits impacted by cfDNA screening
The American College of Medical Genetics & Genomics (ACMG) has issued a new statement on cell free DNA prenatal screening. As with its initial statement, the ACMG separates itself from existing statements and guidelines on cfDNA screening. Continue reading ACMG Releases New Statement on cell free DNA Prenatal Screening
The United States Court of Appeals for the Federal Circuit issued its opinion reviewing a lower court’s ruling that Sequenom’s use of cell free DNA (“cfDNA”) for its tests like MaterniT21 is not patentable. Here’s how the appellate court ruled. Continue reading Lawsuit involving Sequenom, Ariosa, and Natera: a revolutionary discovery is not patentable when using routine methods
In a recent article, “POV: My Life with Turner Syndrome (TS): Genetic screening does not necessarily predict the future,” Caitlin Bawn writes about her experience growing up with TS and her concerns about screening that can detect the condition prenatally. She worries that pregnant women undergoing prenatal screening will not receive information about the spectrum of outcomes for girls with TS as they are making reproductive decisions. While Bawn’s story focuses on Turner syndrome, she touches on a key issue with prenatal screening for a range of conditions as increasing numbers of expectant parents and providers are put in the position of figuring out what a diagnosis means.
Continue reading Life with Turner syndrome: Education and support are essential
The American College of Obstetricians & Gynecologists has issued new guidelines for prenatal diagnostic and screening testing for genetic disorders. These new guidelines will become the new rules by which obstetricians administer prenatal testing. Continue reading ACOG Issues New Prenatal Testing Guidelines
Robert Resta recently discussed the issue of genetic counselors who have financial conflicts of interest, in a blog post called Appearances are Important. His is a useful response from the genetic counseling profession to Beth Daley’s recent article, After Angry Moms Fault Counseling, Genetics Society Cites Its Ethics Code. Continue reading Conflicts of interest and appearances
Celeste Orr writes in The Guardian that disorders of sex should not be a legitimate target of prenatal screening using PGD or genetic screening. Scientists in the UK have already introduced noninvasive genetic screening for congenital adrenal hyperplasia (CAH), one of the more common intersex disorders, on a research protocol.
A Costa Rican family is leaving Toronto after three years in Canada because immigration officials say their son’s Down syndrome is too much of a burden on taxpayers. Even though they are leaving the country, they’re still fighting what they call medieval and barbaric legislation because they say it may help other families. Felipe Montoya and Alejandra Garcia-Prieto have been trying to get permanent residency in Canada since they first moved to Toronto three years ago with their two teenage children so Montoya could teach environmental studies at York University. Read More.
Or watch this NSFW response.
PIRC members Josie Johnson, Marsha Michie and Megan Allyse are presenting Responsible Motherhood, Inc: How Genetic Testing Companies Are Shaping What It Means to be a Good Parent at the Albany Medical Center’s Reproductive Ethics Conference. Enjoy this video from their presentation on how prenatal genetic testing portrays good mothers.
“Well … not exactly. Read to the end to see what the law says, what it actually does, and the problem that it codifies about Down syndrome.” Read Mark’s post HERE.
Prenatal Information Research Consortium 