ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2014
The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers.
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
45 citing papers in PubMed.
- A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study.European journal of human genetics : EJHG · 2018Trial
- Return of health research findings in Nigeria-perspective of potential research participants.BMC medical ethics · 2026Article
- From Biobank to Bedside: A Pilot Study on Returning Medically Actionable BRCA1/2 Results in Qatar's Precision Medicine Landscape.Biomedicines · 2025Article
- Return of health research findings in Nigeria-perspective of potential research participants.Research square · 2025Article
- According to Which Criteria Should the Undiagnosed Diseases Network's Value Be Assessed?AMA journal of ethics · 2025Article
- Rapid Whole-Genome Sequencing in Critically Ill Infants and Children with Suspected, Undiagnosed Genetic Diseases: Evolution to a First-Tier Clinical Laboratory Test in the Era of Precision Medicine.Children (Basel, Switzerland) · 2025Review
- A practical checklist for return of results from genomic research in the European context.European journal of human genetics : EJHG · 2023Article
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).Risk management and insurance review · 2021Article
- Shortened consent forms for genome-wide sequencing: Parent and provider perspectives.Molecular genetics & genomic medicine · 2020Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Challenges to informed consent for exome sequencing: A best-worst scaling experiment.Journal of genetic counseling · 2019Article
- Cases in Precision Medicine: Should You Participate in a Study Involving Genomic Sequencing of Your Patients?Annals of internal medicine · 2019Article
- Model consent clauses for rare disease research.BMC medical ethics · 2019Article
- Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium.Personalized medicine · 2019Article
- Pitfalls and Challenges of Consenting to Genetic Research Studies.Kidney international reports · 2018Article
- Reconceptualizing harms and benefits in the genomic age.Personalized medicine · 2018Article
- Article
- Precision Medicine: Familiarity, Perceived Health Drivers, and Genetic Testing Considerations Across Health Literacy Levels in a Diverse Sample.Journal of genetic counseling · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
As exome and genome sequencing move into clinical application, questions surround how to elicit consent and handle potential return of individual genomic results. This study analyzes nine consent forms used in NIH-funded sequencing studies. Content analysis reveals considerable heterogeneity, including in defining results that may be returned, identifying potential benefits and risks of return, protecting privacy, addressing placement of results in the medical record, and data-sharing. In response to lack of consensus, we offer recommendations.
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.