ArticleJournal of empirical research on human research ethics : JERHRE2011
The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.
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 21 papers, 2 of them syntheses 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
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Religious factors predict support for genomic medicine more strongly than politics, education, or trust: A survey of 4,939 adults in the United States.Frontiers in genetics · 2025Article
- 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
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Improving Translation and Cultural Appropriateness of Spanish-Language Consent Materials for Biobanks.Ethics & human research · 2019Article
- The Right to Know: A Revised Standard for Reporting Incidental Findings.The Hastings Center report · 2018Article
- The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants.PloS one · 2018Article
- Authorization of tissues from deceased patients for genetic research.Human genetics · 2018Article
- Prior opioid exposure influences parents' sharing of their children's CYP2D6 research results.Pharmacogenomics · 2017Article
- Article
- Neglected ethical issues in biobank management: Results from a U.S. study.Life sciences, society and policy · 2013Article
- '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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
In the debate about whether to return individual genetic results to research participants, consideration of the nature of results has taken precedence over contextual factors associated with different study designs and populations. We conducted in-depth interviews with 24 individuals who participated in a genotype-driven study of cystic fibrosis: 9 of the individuals had cystic fibrosis, 15 had participated as healthy volunteers, and all had gene variants of interest to the researchers. These interviews revealed that the two groups had different ideas about the meaningfulness of genetic results. Our findings point to the importance of understanding research context, such as participants' relationship with the researcher and whether they have the disease condition under study, when considering whether to return individual results.
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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.