Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening

PloS One
Elizabeth V ClarkeKatrina A B Goddard

Abstract

Expanded carrier screening can provide risk information for numerous conditions. Understanding how individuals undergoing preconception expanded carrier screening value this information is important. The NextGen study evaluated the use of genome sequencing for expanded carrier screening and reporting secondary findings, and we measured participants' willingness to pay for this approach to understand how it is valued by women and couples planning a pregnancy. We assessed 277 participants' willingness to pay for genome sequencing reporting carrier results for 728 gene/condition pairs and results for 121 secondary findings. We explored the association between attitudes and demographic factors and willingness to pay for expanded carrier screening using genome sequencing and conducted interviews with 58 of these participants to probe the reasoning behind their preferences. Most participants were willing to pay for expanded carrier screening using genome sequencing. Willingness to pay was associated with income level and religiosity, but not risk status for a condition in the carrier panel. Participants willing to pay nothing or a small amount cited issues around financial resources, whereas those willing to pay higher amounts were m...Continue Reading

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Citations

Oct 2, 2019·European Journal of Human Genetics : EJHG·Juliette SchuurmansMirjam Plantinga
Oct 2, 2019·Cold Spring Harbor Perspectives in Medicine·Erica Ramos
Oct 4, 2020·Journal of Genetic Counseling·Katherine CarlottiTae-Hwi Schwantes-An
Mar 14, 2021·Orphanet Journal of Rare Diseases·Valérie BonneauBertrand Isidor
May 8, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Maren T ScheunerKathryn A Phillips
Jun 4, 2021·Clinical Genetics·Peter GrantAlison M Elliott
Aug 28, 2021·International Journal of Environmental Research and Public Health·Azimatun Noor AizuddinSyed Mohamed Aljunid

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Software Mentioned

NextGen
NVIVO

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