ArticleGenetics in medicine : official journal of the American College of Medical Genetics2013
Experiences and attitudes of genome investigators regarding return of individual genetic test results.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 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
37 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Research participants' experiences with return of genetic research results and preferences for web-based alternatives.Molecular genetics & genomic medicine · 2019Trial
- Researcher views on returning results from multi-omics data to research participants: insights from The Molecular Transducers of Physical Activity Consortium (MoTrPAC) Study.BMC medical ethics · 2025Article
- Returning Incidental Research Findings FromArthritis care & research · 2024Article
- 'Research ethics · 2024Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Article
- Returning actionable genomic results in a research biobank: Analytic validity, clinical implementation, and resource utilization.American journal of human genetics · 2021Article
- Sculpting the Future of Biobanking Base by Base.Biopreservation and biobanking · 2021Article
- To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.BMC medical ethics · 2021Article
- In-vivo design feedback and perceived utility of a genetically-informed smoking risk tool among current smokers in the community.BMC medical genomics · 2021Article
- Assessing Stakeholder Perceptions of the Utility of Genetic Information for the Clinical Care of Mental Health Disorders: We Have a Will but Need to See the Way.Administration and policy in mental health · 2021Article
- Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Psychiatric genetics researchers' views on offering return of results to individual participants.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
- Return of genetic and genomic research findings: experience of a pediatric biorepository.BMC medical genomics · 2019Article
- Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.Journal of empirical research on human research ethics : JERHRE · 2019Article
- Experiences and perspectives on the return of secondary findings among genetic epidemiologists.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Article
- Improved ethical guidance for the return of results from psychiatric genomics research.Molecular psychiatry · 2018Article
- Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.Journal of genetic counseling · 2017Article
Corrections and comments
- Commented on by
Authors and funding
6 authors.
Funding
Abstract
purposeWhether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.
methodsWe surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.
resultsOf 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index genome-wide association studies. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants' health (63%) and respect for participants' desire for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return of results.
conclusionInvestigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.
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.