ArticlePublic health genomics2016
Consent Issues in Genetic Research: Views of Research Participants.
Article in Public health genomics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Paediatric systemic inflammatory response syndrome (SIRS) and the development of patient-specific therapy: ethical perspectives through experts' opinions.Frontiers in public health · 2024Article
- Attitudes of Dilated Cardiomyopathy Patients and Investigators Toward Genomic Study Enrollment, Consent Process, and Return of Genetic Results.Clinical and translational science · 2021Observational
- Attitudes of Costa Rican individuals towards donation of personal genetic data for research.Personalized medicine · 2021Article
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?Journal of medical ethics · 2019Article
- Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- "I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.Public health genomics · 2019Article
- Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine.Science and engineering ethics · 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
- Broad consent for health care-embedded biobanking: understanding and reasons to donate in a large patient sample.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Authorization of tissues from deceased patients for genetic research.Human genetics · 2018Article
- De-identified genomic data sharing: the research participant perspective.Journal of community genetics · 2017Article
- A qualitative study of participants' views on re-consent in a longitudinal biobank.BMC medical ethics · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
backgroundWith the arrival of large-scale population-based genomic research studies, such as the Precision Medicine Initiative (PMI), the question of how to best consent participants is significant, and in an era of patient-centered research, few studies have evaluated participants' preferences about re-consent and broad consent. Using quantitative methods, this study evaluates participants' views regarding the acceptability of re-consent and broad consent in subjects from the Participant Issues Project.
methodsA total of 450 participants were recruited from a cancer genetics registry, including cancer patients, their relatives, and controls. Participants completed a secure online survey.
resultsMost participants endorsed re-consent when investigating an unrelated health condition or sharing their de-identified data with an investigator at a different institution. Notification rather than re-consent was preferred when studying a different gene but the same disease. Over 80% of respondents endorsed re-consent when parents of a child gave the original consent and the child has now reached adulthood. Preferences for some scenarios varied by history of cancer at baseline, gender, stage of cancer, or case versus control group. The large majority of participants preferred the option to select broad consent categories of research.
conclusionUnderstanding research participants' preferences, including their views on the need for re-consent, are critical to the success of the PMI.
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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.