ArticlePersonalized medicine2011
You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative.
Article in Personalized medicine, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 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
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Guideline
- Expanding access to genomic analysis and reporting in research studies: The GENYSIS research core.Journal of clinical and translational science · 2026Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.The American journal of bioethics : AJOB · 2021Article
- Actionable secondary findings in arrhythmogenic right ventricle cardiomyopathy genes: impact and challenge of genetic counseling.Cardiovascular diagnosis and therapy · 2021Article
- Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.BMC medical ethics · 2020Article
- Mind the gap: resources required to receive, process and interpret research-returned whole genome data.Human genetics · 2019Review
- Privacy and ethical challenges in next-generation sequencing.Expert review of precision medicine and drug development · 2019Article
- Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.Journal of participatory medicine · 2018Article
- Returning genome sequences to research participants: Policy and practice.Wellcome open research · 2017Article
- Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders.Journal of genetic counseling · 2016Article
- Personal Genome Sequencing in Ostensibly Healthy Individuals and the PeopleSeq Consortium.Journal of personalized medicine · 2016Review
- Personal genomics: Where are we now?Applied & translational genomics · 2016Article
- Potential research participants support the return of raw sequence data.Journal of medical genetics · 2015Article
- Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.Movement disorders : official journal of the Movement Disorder Society · 2015Article
- Living laboratory: whole-genome sequencing as a learning healthcare enterprise.Clinical genetics · 2015Review
- Return of results: ethical and legal distinctions between research and clinical care.American journal of medical genetics. Part C, Seminars in medical genetics · 2014Article
- Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children.Clinical genetics · 2014Article
- "Use it or lose it" as an alternative approach to protect genetic privacy in personalized medicine.Urologic oncology · 2014Article
- Practical, ethical and regulatory considerations for the evolving medical and research genomics landscape.Applied & translational genomics · 2013Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
Abstract
The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other 'omic' data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants' lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.
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.