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Impact of the increased adoption of prenatal cfDNA screening on non‐profit patient advocacy organizations in the United States
Author(s) -
Meredith Stephanie,
Kaposy Christopher,
Miller Victoria J.,
Allyse Megan,
Chandrasekharan Subhashini,
Michie Marsha
Publication year - 2016
Publication title -
prenatal diagnosis
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.956
H-Index - 97
eISSN - 1097-0223
pISSN - 0197-3851
DOI - 10.1002/pd.4849
Subject(s) - medicine , prenatal screening , family medicine , stakeholder , prenatal diagnosis , stigma (botany) , confusion , prenatal care , political science , public relations , psychology , pregnancy , environmental health , psychiatry , fetus , genetics , psychoanalysis , biology , population
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.