ArticleAmerican journal of human genetics2016
A Clinical Service to Support the Return of Secondary Genomic Findings in Human Research.
Article in American journal of human genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
What it found
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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.
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Who cites it
25 citing papers in PubMed.
- Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.BMC medical ethics · 2016Trial
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Expanding access to genomic analysis and reporting in research studies: The GENYSIS research core.Journal of clinical and translational science · 2026Article
- Implementing secondary findings analysis in a genetic and environmental research study.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Developing a genetic return of results service core.Journal of clinical and translational science · 2025Article
- 'Research ethics · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Sustained agreement rates in the longitudinal assessment of lupus patients to a Broad Consent for personal data and specimen usage in the RHINEVIT biobank.Frontiers in medicine · 2023Article
- Public Attitude towards Biobanking: An Italian University Survey.International journal of environmental research and public health · 2022Article
- My Research Results: a program to facilitate return of clinically actionable genomic research findings.European journal of human genetics : EJHG · 2022Article
- Invited Commentary on "My Research Results: a program to facilitate return of clinically actionable genomic research findings" by Willis et al.European journal of human genetics : EJHG · 2022Article
- Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2021 update: a policy statement of the American College of Medical Genetics and Genomics (ACMG).Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.Public health genomics · 2021Article
- Review
- Ubuntu philosophy and the consensus regarding incidental findings in genomic research: a heuristic approach.Medicine, health care, and philosophy · 2020Article
- Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience.Molecular genetics & genomic medicine · 2018Article
- Evaluation of Recipients of Positive and Negative Secondary Findings Evaluations in a Hybrid CLIA-Research Sequencing Pilot.American journal of human genetics · 2018Article
- Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Journal of bioethical inquiry · 2018Article
- Incidental Findings in Low-Resource Settings.The Hastings Center report · 2018Article
Corrections and comments
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Authors and funding
15 authors.
Funding
Abstract
Human genome and exome sequencing are powerful research tools that can generate secondary findings beyond the scope of the research. Most secondary genomic findings are of low importance, but some (for a current estimate of 1%-3% of individuals) confer high risk of a serious disease that could be mitigated by timely medical intervention. The impact and scope of secondary findings in genome and exome sequencing will only increase in the future. There is considerable agreement that high-impact findings should be returned to participants, but many researchers performing genomic research studies do not have the background, skills, or resources to identify, verify, interpret, and return such variants. Here, we introduce a proposal for the formation of a secondary-genomic-findings service (SGFS) that would support researchers by enabling the return of clinically actionable sequencing results to research participants in a standardized manner. We describe a proposed structure for such a centralized service and evaluate the advantages and challenges of the approach. We suggest that such a service would be of greater benefit to all parties involved than present practice, which is highly variable. We encourage research centers to consider the adoption of a centralized SGFS.
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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.