ArticleGenetics in medicine : official journal of the American College of Medical Genetics2014
Informed consent for return of incidental findings in genomic research.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03027401 (Clinical Sequencing of Cancer and Tissue Repository), which is not on this map. Cited by 37 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.
Clinical Sequencing of Cancer and Tissue Repository: ClinOmics
Who cites it
37 citing papers in PubMed, 2 syntheses or guidelines pooled it, 69 citations in OpenAlex.
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Pooled it
- An adaptive, continuous-learning framework for clinical decision-making from proteome-wide biofluid data.Nature communications · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Returning actionable genetic results to participants in the biobank at the Colorado Center for Personalized Medicine and UCHealth.Genetics in medicine open · 2024Article
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Whether, when, how, and how much? General public's and cancer patients' views about the disclosure of genomic secondary findings.BMC medical genomics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Attitudes among South African university staff and students towards disclosing secondary genetic findings.Journal of community genetics · 2021Article
- Navigating the Intersection between Genomic Research and Clinical Practice.Cancer prevention research (Philadelphia, Pa.) · 2020Review
- Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives.Computational and structural biotechnology journal · 2020Review
- 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
- Much ado about nothing: A qualitative study of the experiences of an average-risk population receiving results of exome sequencing.Journal of genetic counseling · 2019Article
- Informed Consent in Biomedical Research.Computational and structural biotechnology journal · 2019Review
- Evaluation of Recipients of Positive and Negative Secondary Findings Evaluations in a Hybrid CLIA-Research Sequencing Pilot.American journal of human genetics · 2018Article
- Article
- The development of large-scale de-identified biomedical databases in the age of genomics-principles and challenges.Human genomics · 2018Review
- How do clinical genetics consent forms address the familial approach to confidentiality and incidental findings? A mixed-methods study.Familial cancer · 2018Article
- Public Understanding and Opinions regarding Genetic Research on Alzheimer's Disease.Public health genomics · 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
8 authors at 2 institutions in 1 country.
Funding
Abstract
purposeResearchers face the dilemma of how to obtain consent for return of incidental findings from genomic research. We surveyed and interviewed investigators and study participants, with the goal of providing suggestions for how to shape the consent process.
methodsWe performed an online survey of 254 US genetic researchers identified through the NIH RePORTER database, abstracts from the 2011 American Society of Human Genetics meeting, and qualitative semi-structured interviews with 28 genomic researchers and 20 research participants.
resultsMost researchers and participants endorsed disclosure of a wide range of information about return of incidental findings, including risks, benefits, impact on family members, data security, and procedures, for return of results in the event of death or incapacity and for recontact. However, most researchers were willing to devote 30 min or less to this process and expressed concerns that disclosed information would overwhelm participants, a concern shared by many participants themselves.
conclusionThere is a disjunction between the views of investigators and participants about the amount of information that should be disclosed and the practical realities of the research setting, including the time available for consent discussions. This strongly suggests the need for innovative approaches to the informed consent process.
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.