title: Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States.
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.
authors.affiliation: National Center for Prenatal and Postnatal Down Syndrome Resources, University of Kentucky, Louisville, KY, USA.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Meredith
authors.affiliation: Memorial University of Newfoundland, St. Johns, Newfoundland, Canada.
authors.forename: Christopher
authors.initials: C
authors.lastname: Kaposy
authors.affiliation: Trisomy 18 Foundation, Dale City, VA, USA.
authors.forename: Victoria J
authors.initials: VJ
authors.lastname: Miller
authors.affiliation: Mayo Clinic, Rochester, MN, USA.
authors.forename: Megan
authors.identifier: http://orcid.org/0000-0001-6136-9256
authors.initials: M
authors.lastname: Allyse
authors.affiliation: Duke University, Durham, NC, USA.
authors.forename: Subhashini
authors.initials: S
authors.lastname: Chandrasekharan
authors.affiliation: University of California, San Francisco, CA, USA.
authors.forename: Marsha
authors.identifier: http://orcid.org/0000-0001-6631-828X
authors.initials: M
authors.lastname: Michie
mesh_terms: D025063:Chromosome Disorders / Q000175:diagnosis*; D004247:DNA / Q000097:blood*; D005260:Female; D005817:Genetic Counseling; D006297:Health Services Accessibility; D006801:Humans; D009939:Organizations, Nonprofit; D010344:Patient Advocacy / Q000191:economics / Q000941:ethics; D010353:Patient Education as Topic / Q000191:economics / Q000592:standards; D011237:Predictive Value of Tests; D011247:Pregnancy; D011296:Prenatal Diagnosis; D012680:Sensitivity and Specificity; D017422:Sequence Analysis, DNA; D059039:Standard of Care; D014481:United States
chemical_list: D004247:DNA