ArticleAmerican journal of medical genetics. Part A2013
Maternal perspectives on the return of genetic results: context matters.
Article in American journal of medical genetics. Part A, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies.Molecular genetics & genomic medicine · 2020Pooled it
- Benefits and concerns of expanded carrier screening: what do pregnant Latina women in Texas think?Journal of community genetics · 2023Article
- Developing video education materials for the return of genomic test results to parents and adolescents.PEC innovation · 2022Article
- Teenagers and Precision Psychiatry: A Window of Opportunity.Public health genomics · 2021Article
- Exome sequencing in newborns with congenital deafness as a model for genomic newborn screening: the Baby Beyond Hearing project.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos.BMC public health · 2020Observational
- Article
- Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result.Public health genomics · 2018Article
- Article
- How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Return of results: ethical and legal distinctions between research and clinical care.American journal of medical genetics. Part C, Seminars in medical genetics · 2014Article
- Community member and faith leader perspectives on the process of building trusting relationships between communities and researchers.Clinical and translational science · 2014Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
The objectives of this study were to study maternal preferences for the return of their child's genetic results and to describe the experiences, perceptions, attitudes, and values that are brought to bear when individuals from different racial and cultural backgrounds consider participating in genetic research. We recruited women with diverse sociodemographic profiles to participate in seven focus groups. Twenty-eight percent of participants self-identified as Hispanic; 49% as White, non-Hispanic; and 21% as Asian or Asian American. Focus groups were conducted in English or Spanish and were audio-recorded and transcribed verbatim. Transcripts were analyzed using qualitative thematic methods. Results indicated that preferences and decisions regarding the return of results may depend on both research and individual contextual factors. Participants understood the return of results as a complex issue, where individual and cultural differences in preferences are certain to arise. Another key finding was that participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results. Our findings indicate a need to have well-developed systems for allowing participants to make and change over time their choices regarding the return of their child's genetic results.
Indexed as
Identifiers
What OpenQuestion holds
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.