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

Abstract

BackgroundExpanded 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.MethodsWe 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.ResultsMost 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.ConclusionWomen 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.

Expanded Carrier Screening in Chinese Population – A Survey on Views and Acceptance of Pregnant and Non-Pregnant Women

“…The author also suggested women with infertility are a special group which may have a higher uptake rate due to their health-seeking behavior and motivation. Clarke et al carried out a survey on willingness to pay for genome sequencing reporting carrier results for genetic conditions ( Clarke et al, 2018 ), and reported association between income level with willingness to pay. Apart from willingness to pay, whether ECS is cost-effective is still debatable.…”

Perceived barriers to paternal expanded carrier screening following a positive maternal result: To screen or not to screen

“…Multiple studies have assessed why women chose to undergo expanded carrier screening (Clarke et. al., 2018; Johansen Taber et al., 2019; Voorwinden et al., 2017). To date, no study has looked at why some fathers chose not to undergo carrier screening after the mother has been found to be a carrier for certain genetic conditions.…”

“…For example, Clarke et. al (2018) found that willingness to pay for the screen was associated with income level and religious affiliation, but not associated with the severity of the conditions on the screen (Clarke et al., 2018). Voorwinden et al (2017) found that message framing, such as qualifying a specific syndrome as lethal, does not affect the likelihood that a mother will choose to undergo carrier screening.…”

First French study relative to preconception genetic testing: 1500 general population participants’ opinion

“…In the study conducted in Dutch population, 58% of the participants would consider paying for preconception genetic testing [ 9 ]. The willingness to pay for genome sequencing carrier screening evaluated in 2018 during the the NextGen study, as part of the Clinical Sequencing Exploratory Research (CSER) consortium [ 22 ]. The maximum amounts that participants were willing to pay were related to income, and participants’ highest willingness to pay level has been estimated to $21–100 and $101–300 for female and male partners, respectively.…”