ArticleMolecular genetics & genomic medicine2017
The NextGen Study: patient motivation for participation in genome sequencing for carrier status.
Article in Molecular genetics & genomic medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
18 citing papers in PubMed.
- Patient and health care practitioner experiences and perspectives on expanded carrier screening: A scoping review.Genetics in medicine open · 2026Review
- Exploring attitudes and experiences with reproductive genetic carrier screening among couples seeking medically assisted reproduction: a longitudinal survey study.Journal of assisted reproduction and genetics · 2024Article
- On the determinants and the role of the payers in the uptake of genetic testing and data sharing in personalized health.Frontiers in public health · 2023Article
- Willingness to participate in various nontherapeutic cancer research activities among urban and rural African American and Latinx healthy volunteers.Cancer causes & control : CCC · 2022Article
- Motivations and concerns of patients considering participation in an implementation study of a hereditary cancer risk assessment program in diverse primary care settings.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women.Frontiers in genetics · 2022Article
- Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model.Patient education and counseling · 2021Article
- Current attitudes and preconceptions towards expanded carrier screening in the Eastern Chinese reproductive-aged population.Journal of assisted reproduction and genetics · 2021Article
- GP-provided couple-based expanded preconception carrier screening in the Dutch general population: who accepts the test-offer and why?European journal of human genetics : EJHG · 2020Article
- Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeqGenetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Plutonormativity: Illuminating Inequities in Assisted Reproduction and Genetics.Health law in Canada · 2019Article
- The evolving landscape of expanded carrier screening: challenges and opportunities.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Review
- A case for expanding carrier testing to include actionable X-linked disorders.Clinical case reports · 2018Article
- Pregnant Women's Perspectives on Expanded Carrier Screening.Journal of genetic counseling · 2018Article
- What People Want to Know About Their Genes: A Critical Review of the Literature on Large-Scale Genome Sequencing Studies.Healthcare (Basel, Switzerland) · 2018Review
- Lessons Learned From A Study Of Genomics-Based Carrier Screening For Reproductive Decision Making.Health affairs (Project Hope) · 2018Article
- The NextGen Study: patient motivation for participation in genome sequencing for carrier status.Molecular genetics & genomic medicine · 2017Article
- The words community dwelling, Spanish-preferring Mexican/Mexican American adults use to talk about Alzheimer's disease and genetic testing: Implications for education and outreach.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundWhile translational genomic sequencing research is increasing, few studies have been limited to healthy individuals; most have focused on patients with a disease or a strong family history of a disorder. The limited studies that have included healthy individuals have focused on the disclosure of medically actionable secondary results, rather than carrier status, to assess reproductive risks. To address this important gap, we conducted the NextGen study, which focuses on carrier status and medically actionable secondary findings in a population of women planning a pregnancy.
methodsWe assessed 310 participants' motivations for receiving genome sequencing for expanded carrier screening and experiences with familial genetic conditions that may relate to study participation.
resultsMost participants reported that obtaining general health information from genome sequencing was their primary motivator, even though they were recruited to join a study to learn more about carrier status. Forty-two percent of enrolled women became pregnant prior to obtaining sequencing results.
conclusionGenomic carrier testing may need to be offered to women prior to active pregnancy efforts to be useful for reproductive planning.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.