ArticleJournal of empirical research on human research ethics : JERHRE2011
Epilepsy patient-participants and genetic research results as "answers".
Article in Journal of empirical research on human research ethics : JERHRE, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 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
11 citing papers in PubMed.
- Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study.European journal of human genetics : EJHG · 2023Article
- Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review.European journal of human genetics : EJHG · 2022Article
- Balancing scientific interests and the rights of participants in designing a recall by genotype study.European journal of human genetics : EJHG · 2021Article
- Genetic testing preferences in families containing multiple individuals with epilepsy.Epilepsia · 2014Article
- 'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.Clinical genetics · 2013Article
- Genotype-driven recruitment: a strategy whose time has come?BMC medical genomics · 2013Article
- Am I a control?: Genotype-driven research recruitment and self-understandings of study participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Recommendations for ethical approaches to genotype-driven research recruitment.Human genetics · 2012Article
- Research participants' perspectives on genotype-driven research recruitment.Journal of empirical research on human research ethics : JERHRE · 2011Article
- Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.Journal of empirical research on human research ethics : JERHRE · 2011Article
- The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.Journal of empirical research on human research ethics : JERHRE · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
Better understanding of how research participants with a known condition ascribe meaning to individual genetic results is important to help researchers and institutional review boards evaluate the potential benefits and harms of disclosing results in the context of genotype-driven research recruitment. Based on 29 in-depth interviews with epilepsy patients participating in a genetic study, we found that this population of research subjects anticipated that genetic research results would provide answers to a range of questions about the research process and their condition. Their multi-layered interpretations underscore the need for clear communication about the nature and limitations of results if individual or aggregate genetic results are returned in the process of recruitment for additional research.
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.