ArticlePublic health genomics2011
Attitudes toward genetic research review: results from a survey of human genetics researchers.
Article in Public health genomics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 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
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented Privacy Law, and Human Rights Risks as Central Participant Concerns.Journal of bioethical inquiry · 2026Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Lived experiences of genetic diagnosis for rare disease patients: a qualitative interview study.Orphanet journal of rare diseases · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Research approvals iceberg: how a 'low-key' study in England needed 89 professionals to approve it and how we can do better.BMC medical ethics · 2019Article
- Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research.Journal of psychiatric research · 2018Article
- A comparison of views regarding the use of de-identified data.Translational behavioral medicine · 2018Article
- Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.Public health genomics · 2018Article
- Participant views on consent in cancer genetics research: preparing for the precision medicine era.Journal of community genetics · 2016Article
- Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research.Bioethics · 2016Article
- Consent Issues in Genetic Research: Views of Research Participants.Public health genomics · 2016Article
- Scientists' perspectives on consent in the context of biobanking research.European journal of human genetics : EJHG · 2015Article
- Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit.AJOB primary research · 2013Article
- How good does the science have to be in proposals submitted to Institutional Review Boards? An interview study of Institutional Review Board personnel.Clinical trials (London, England) · 2013Article
- Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study.Clinical genetics · 2013Article
- Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting.Patient education and counseling · 2013Article
- Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?AJOB primary research · 2012Article
- Researcher and institutional review board chair perspectives on incidental findings in genomic research.Genetic testing and molecular biomarkers · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
backgroundResearchers often relate personal experiences of difficulties and challenges with Institutional Review Board (IRB) review of their human genetic research protocols. However, there have been no studies that document the range and frequency of these concerns among researchers conducting human genetic/genomic studies.
methodsAn online anonymous survey was used to collect information from human genetic researchers regarding views about IRB review of genetic protocols. Logistic regression was used to test specific hypotheses. Results from the national online survey of 351 human genomic researchers are summarized in this report.
resultsIssues involving considerable discussion with IRBs included reconsent of subjects (51%), protection of participants' personal information (39%) and return of results to participants (34%). Over half of the participants had experienced one or more negative consequences of the IRB review process and approximately 25% had experienced one or more positive consequences. Respondents who had served on an IRB were about 80% more likely to report positive consequences of IRB review than their colleagues who had never served on an IRB (p = 0.03). Survey responses were mixed on the need for reconsent before data sharing and risks related to participant reidentification from genomic data.
conclusionThe results from this study provide important perspectives of researchers regarding genetic research review and show lack of consensus on key research ethics issues in genomic research.
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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.