4 research outputs found
Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening
<div><p>Background</p><p>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.</p><p>Methods</p><p>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.</p><p>Results</p><p>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 motivated by “peace of mind” from carrier results.</p><p>Conclusion</p><p>Women and couples planning a pregnancy value genome sequencing. The potentially high out-of-pocket cost of this service could result in healthcare disparities, since maximum amounts that participants were willing to pay were higher than a typical copay and related to income.</p></div
Characteristics of participants of preconception genomic carrier screening.
<p>Characteristics of participants of preconception genomic carrier screening.</p
Willingness to pay for expanded carrier screening using GS (females and male partners).
<p>Survey responses to WTP questions (n = 277). Data are expressed as percent of all respondents and of the total number of at risk or negative result with <25% risk participants.</p
Multivariable linear regression results of willingness to pay for expanded carrier screening for GS in women (n = 239).
<p>Multivariable linear regression results of willingness to pay for expanded carrier screening for GS in women (n = 239).</p