Impact of the increased adoption of prenatal cfDNA screening on non‐profit patient advocacy organizations in the United States. (18th July 2016)

• Record Type: Journal Article
• Authors: Meredith, Stephanie; Kaposy, Christopher; Miller, Victoria J.; Allyse, Megan; Chandrasekharan, Subhashini; Michie, Marsha
• Other Names: Carroll Linzee investigator.; Cover Virginia Isaacs investigator.; Feist Cori investigator.; Heinemann Janalee investigator.; Lindh Heidi investigator.; Minear Mollie A. investigator.; Ravitsky Vardit investigator.
• Is Part Of: Prenatal diagnosis. Volume 36:Number 8(2016)
• Page Start: 714
• Page End: 719
• Publication Date: 2016-07-18
• Subjects: Prenatal diagnosis -- Periodicals; Fetus -- Diseases -- Diagnosis -- Periodicals; Electronic journals; 618.32075
• DOI: 10.1002/pd.4849
• Languages: English
• ISSNs: 0197-3851

Abstract

Abstract: The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day‐long meeting, a panel of patient advocacy group (PAG) representatives discussed concerns and challenges raised by prenatal cell‐free DNA (cfDNA) screening, which has resulted in larger demands upon PAGs from concerned patients receiving prenatal cfDNA screening results. Prominent concerns included confusion about the accuracy of cfDNA screening and a lack of patient education resources about genetic conditions included in cfDNA screens. Some of the challenges faced by PAGs included funding limitations, lack of consistently implemented standards of care and oversight, diverse perspectives among PAGs and questions about neutrality, and lack of access to training and genetic counselors. PAG representatives also put forward suggestions for addressing these challenges, including improving educational and PAG funding and increasing collaboration between PAGs and the medical community. © 2016 John Wiley & Sons, Ltd. Abstract : What's Already Known about this Topic? Prenatal cell‐free DNA screening has strongly impacted the provision of prenatal testing for fetal genetic conditions. Non‐profit patient advocacy groups often provide support for potential and new parents and families who have received a genetic diagnosis. What does this Study Add? Non‐profit patient advocacy groups face new challenges as a result of the proliferation of prenatal cell‐free DNA screening, particularly in providing education and support for potential and new parents and families who have received a genetic diagnosis. Representatives of patient groups have proposed several remedies for the challenges they face, including independent funding mechanisms and collaborations with other stakeholders in prenatal screening and testing.