Jaime Herrera Beutler Introduces Legislation to Help Parents Understand Accuracy, Limitations of Prenatal Screenings
Cell free DNA prenatal screenings a helpful indicator for expecting parents, but inaccurate up to 50% of the time; more education needed for parents, health care providers
Today, Representatives Jaime Herrera Beutler (R-WA) and Lucille Roybal-Allard (D-CA) announced that they had introduced legislation to help families understand the limitations and benefits of prenatal screening provided during pregnancy.
Today, Representatives Jaime Herrera Beutler (R-WA) and Lucille Roybal-Allard (D-CA) announced that they had introduced legislation to help families understand the limitations and benefits of prenatal screening provided during pregnancy. The Accurate Education for Prenatal Screenings Act would increase and improve access to accurate, evidence-based information to accompany cell free DNA prenatal screenings.
Cell free DNA prenatal screenings – a new technology available since 2011 – are blood tests that examine placental DNA in the maternal bloodstream to determine whether a baby is at risk for a chromosomal abnormality. These screenings are not diagnostic, since they are not reliable enough to confirm an abnormality.
For example, there have been instances when test results have indicated a chromosomal abnormality but instead the baby was born healthy. Two recent industry-conducted studies revealed the screenings can have false alarms 50% of the time. In another study, samples from two women who were not pregnant were sent to five testing companies for analysis. Three companies returned samples indicating they came from a woman who was carrying a healthy baby.
Jaime’s bipartisan Accurate Education for Prenatal Screenings Act would require the Centers for Disease Control and Prevention to create and maintain two separate education programs for patients and health care providers to better inform them on cell free DNA prenatal screenings. These programs would be developed in coordination with relevant medical professional, disability support, patient advocacy, parents, and genetics professional organizations.
Several top medical professional associations such as the American College of Obstetricians and Gynecologists recognize the need to educate patients on cell-free DNA screenings, and have developed professional guidelines for health providers to inform patients of the risks, benefits, and alternatives to prenatal testing. However, it could take up to 10 years for new guidelines to be circulated and fully implemented by healthcare providers. Jaime’s bill will require the CDC to get the much-needed educational information on the screenings into the hands of parents and providers much sooner.
“While prenatal screenings can be a valuable tool for health care providers and families, parents deserve the most accurate information available about their pregnancy,” said Jaime. “As these screenings become increasingly routine for parents-to-be, we must make sure that proper education – information about their usefulness, and their limitations – is part of that routine. I’ll never forget what it was like when we were told we were facing a risky pregnancy, and I know any parent given this news faces a situation fraught with challenges. We must make sure they’re equipped with all of the facts.”
“Expectant mothers ought to have access to the best available information about the value of non-invasive prenatal screening technology,” said Congresswoman Roybal-Allard. “This technology can give pregnant women critical details about their pregnancies and their health needs. However, before a woman decides whether non-invasive prenatal screening is right for them, they should be given the chance to learn how this screening works, what it can test for, and what it can predict. This bill helps to provide women with information about non-invasive prenatal screening, and that is why I am happy to cosponsor this legislation. I thank Congresswoman Herrera Beutler for her leadership in introducing this valuable bill.The National Down Syndrome Society has supported this legislation. Read their letter of support here.