ArticleAJOB primary research2012
Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?
Article in AJOB primary research, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers.
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
31 citing papers in PubMed.
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- 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
- An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template.BMC medical ethics · 2022Article
- Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.Journal of medical Internet research · 2021Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.Journal of empirical research on human research ethics : JERHRE · 2020Article
- Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Navigating the Intersection between Genomic Research and Clinical Practice.Cancer prevention research (Philadelphia, Pa.) · 2020Review
- Big Data and Public-Private Partnerships in Healthcare and Research: The Application of an Ethics Framework for Big Data in Health and Research.Asian bioethics review · 2019Article
- Model consent clauses for rare disease research.BMC medical ethics · 2019Article
- Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.International journal of population data science · 2018Article
- Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.The American journal of bioethics : AJOB · 2018Article
- Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Article
- A qualitative study of participants' views on re-consent in a longitudinal biobank.BMC medical ethics · 2017Article
- Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks.Genetic testing and molecular biomarkers · 2017Article
- Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.BMC medical ethics · 2017Article
- Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme.Science & public policy · 2016Article
- Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.European journal of human genetics : EJHG · 2016Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundTo promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared.
methodsWe conducted focus groups with 45 members of a Seattle-based integrated healthcare delivery system to learn about their views and expectations for informed consent in genome-scale studies.
resultsParticipants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational - rather than contractual - terms, compared with younger participants. The majority of participants endorsed seeking study subjects' permission regarding material changes in study purpose and data sharing.
conclusionsAlthough this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement, as well as strategies for ongoing communication with study participants.
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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.