Affiliation:
1. Department of Genetics Stanford University School of Medicine Stanford California USA
2. Population, Policy and Practice UCL Great Ormond Street Institute of Child Health London UK
3. North Thames Genomic Laboratory Hub Great Ormond Street Hospital NHS Foundation Trust London UK
4. Genetics and Genomic Medicine UCL Great Ormond Street Institute of Child Health London UK
5. Stanford Center for Biomedical Ethics Stanford University School of Medicine Stanford California USA
6. Health Ethics and Policy Lab, Department of Health Sciences and Technology ETH Zurich Zurich Switzerland
Abstract
AbstractAlthough there are numerous benefits to diagnostic prenatal testing, such as fetal exome sequencing, there are also consequences, including the possibility of receiving variants of uncertain significance or identifying secondary findings. In this study, we utilized a survey‐based discrete choice experiment to elicit the preferences of pregnant people in Northern California for hypothetical prenatal genomic tests. Pregnant individuals were invited to complete the survey through advertisements on social media. Five test attributes were studied: likelihood of getting a result, time taken to receive results, who explains results, reporting of uncertain results, and reporting of secondary findings. The survey also gathered information about the participants' demographics, current and past pregnancies, and tolerance of uncertainty using the IUS‐12 scale. Participants were eligible if they were female, currently 24 or more weeks pregnant, and able to read/write enough English or Spanish to complete an online survey. Overall, participants (n = 56) preferred the option of having a prenatal test over not having a prenatal test (p < 0.01) and had substantially higher preferences for tests with the highest likelihood of getting a result (p < 0.01). There were also positive preferences for tests that reported secondary findings (p = 0.01) and those where results were returned by a genetic specialist (vs. their prenatal provider) (p = 0.04). These findings can be used to guide conversations between pregnant individuals and genetics specialists, such as genetic counselors, as they weigh the pros and cons of diagnostic prenatal testing options.
Funder
National Society of Genetic Counselors
NIHR Bristol Biomedical Research Centre
Wellcome Trust
Cited by
1 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献
1. The Merits and Challenges of Genetic Testing;Genetic Testing and Molecular Biomarkers;2023-10-01