Dataset Information

"Don't Want No Risk and Don't Want No Problems": Public Understandings of the Risks and Benefits of Non-Invasive Prenatal Testing in the United States.

ABSTRACT: The recent availability of new non-invasive prenatal genetic tests for fetal aneuploidy has raised questions concerning whether and how these new tests will be integrated into prenatal medical care. Among the many factors to be considered are public understandings and preferences about prenatal testing mechanisms and the prospect of fetal aneuploidy.To address these issues, we conducted a nation-wide mixed-method survey of 2,960 adults in the United States to explore justifications for choices among prenatal testing mechanisms. Open responses were qualitatively coded and grouped by theme.Respondents cited accuracy, followed by cost, as the most significant aspects of prenatal testing. Acceptance of testing was predicated on differing valuations of knowledge and on personal and religious beliefs. Trust in the medical establishment, attitudes towards risk, and beliefs about health and illness were also considered relevant.Although a significant portion of the sample population valued the additional accuracy provided by the new non-invasive tests, they nevertheless expressed concerns over high costs. Furthermore, participants continued to express reservations about the value of prenatal genetic information per se, regardless of how it was obtained.

SUBMITTER: Allyse M

PROVIDER: S-EPMC4410992 | biostudies-other | 2015

REPOSITORIES: biostudies-other

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"Don't Want No Risk and Don't Want No Problems": Public Understandings of the Risks and Benefits of Non-Invasive Prenatal Testing in the United States.

Allyse Megan M Sayres Lauren Carter LC Goodspeed Taylor T Michie Marsha M Cho Mildred K MK

AJOB empirical bioethics 20150101 1

<h4>Background</h4>The recent availability of new non-invasive prenatal genetic tests for fetal aneuploidy has raised questions concerning whether and how these new tests will be integrated into prenatal medical care. Among the many factors to be considered are public understandings and preferences about prenatal testing mechanisms and the prospect of fetal aneuploidy.<h4>Methods</h4>To address these issues, we conducted a nation-wide mixed-method survey of 2,960 adults in the United States to e ...[more]

PMID: 25932463

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Project description:Importance: Ascertaining preferences for SARS-CoV-2 testing and incorporating findings into the design and implementation of strategies for delivering testing services may enhance testing uptake and engagement, a prerequisite to reducing onward transmission. Objective: To determine important drivers of decisions to obtain a SARS-CoV-2 test in the context of increasing community transmission. Design : A discrete choice experiment (DCE) was used to assess the relative importance of type of SARS-CoV-2 test, specimen type, testing venue, and results turnaround time. Uptake of an optimized testing scenario was simulated relative to the current typical testing scenario of polymerase chain reaction (PCR) via nasopharyngeal (NP) swab in a provider office or urgent care clinic with results in >5 days. Setting: Online survey, embedded in an existing cohort study, conducted during July 30 - September 8, 2020. Participants: Participants (n=4,793) were enrolled in the CHASING COVID Cohort Study, a national longitudinal cohort of adults >18 years residing in the 50 US states, Washington, DC, Puerto Rico, or Guam. Main Outcome(s) and Measure(s): Relative importance of SARS-CoV-2 testing method attributes, utilities of specific attribute levels, and probability of choosing a testing scenario based on preferences estimated from the DCE, the current typical testing option, or choosing not to test. Results: Turnaround time for test results had the highest relative importance (30.4%), followed by test type (28.3%), specimen type (26.2%), and venue (15.0%). Participants preferred fast results on both past and current infection and using a noninvasive specimen, preferably collected at home. Simulations suggested that providing immediate or same day test results, providing both PCR and serology, or collecting oral specimens would substantially increase testing uptake over the current typical testing option. Simulated uptake of a hypothetical testing scenario of PCR and serology via a saliva sample at a pharmacy with same day results was 97.7%, compared to 0.6% for the current typical testing scenario, with 1.8% opting for no test. Conclusions and Relevance: Testing strategies that offer both PCR and serology with non-invasive methods and rapid turnaround time would likely have the most uptake and engagement among residents in communities with increasing community transmission of SARS-CoV-2.

Project description:ObjectiveNon-invasive prenatal testing (NIPT) is a front-line screening for fatal chromosomal aneuploidy. In pregnant women with a risk of having fetal congenital disorders, NIPT is anticipated to reduce the needs of invasive prenatal diagnostic test (IPD). The objective of this study was to understand the acceptance of NIPT and the utility of NIPT to mitigate concerns about IPD in the US high-risk pregnancy management.Design and settingThis was a retrospective observational research using healthcare records obtained from an academic healthcare system in the US. The study consisted of site-level longitudinal analysis and patient-level cross-sectional analysis.ParticipantA total of 5660 new high-risk pregnancies with age ≥35 years were identified for the longitudinal trend analysis. Cross-sectional utility assessment included 2057 pregnant women.Exposure and outcome measuresLongitudinal trends of NIPT order, IPD procedure and the number of patients diagnosed with high-risk pregnancy were descriptively summarised. In the cross-sectional assessment, we tested the association between the use of NIPT and IPD using multivariable regression.ResultsThe rate of increase in the NIPT use exceeded the changes in the number of high-risk pregnancies with age ≥35 years, while the number of annual IPD procedures has fluctuated without specific trends. There was no significant association between the numbers of NIPT and IPD with the adjusted ORs between 0.90 and 1.14 (p>0.1). The order of NIPT was not selected as an independent variable predicting the use of IPD. Clinical characteristics indicating low socioeconomic status and limited healthcare coverage are associated with less use of NIPT and lower clinical utility.ConclusionAlthough prenatal care accepted NIPT over the last decade, the utility of NIPT in mitigating concerns on IPD is unclear and needs further investigation. Limited clinical utility should be addressed in the context of disparity in prenatal care.

Dataset Information

"Don't Want No Risk and Don't Want No Problems": Public Understandings of the Risks and Benefits of Non-Invasive Prenatal Testing in the United States.

Publications

"Don't Want No Risk and Don't Want No Problems": Public Understandings of the Risks and Benefits of Non-Invasive Prenatal Testing in the United States.

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