Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience - Test2 - elhamkhani - TriplyDB

Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience

Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience

http://www.wikidata.org/entity/Q28742978

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Evolving approaches to the ethical management of genomic data Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations The tension between data sharing and the protection of privacy in genomics research Big data, open science and the brain: lessons learned from genomics If you build it, they will come: unintended future uses of organised health data collections Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions COINSTAC: A Privacy Enabled Model and Prototype for Leveraging and Processing Decentralized Brain Imaging Data Practical considerations in genomic decision support: The eMERGE experience From the principles of genomic data sharing to the practices of data access committees Practical guidance on informed consent for pediatric participants in a biorepository Do researchers have an obligation to actively look for genetic incidental findings?Secondary use of clinical data: the Vanderbilt approach Participant-Centric Initiatives: Tools to Facilitate Engagement In Research A human rights approach to an international code of conduct for genomic and clinical data sharing Data sharing in large research consortia: experiences and recommendations from ENGAGE Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting Sharing privacy-sensitive access to neuroimaging and genetics data: a review and preliminary validation Biobanking: The Melding of Research with Clinical Care Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network The Electronic Medical Records and Genomics (eMERGE) Network: past, present, and future Emerging issues in paediatric health research consent forms in Canada: working towards best practices A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee dbGaP data access requests: a call for greater transparency Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives Genome-wide association studies in pediatric chronic kidney disease.Orchestrating differential data access for translational research: a pilot implementation.Security controls in an integrated Biobank to protect privacy in data sharing: rationale and study design.Storing and interpreting genomic information in widely deployed electronic health record systems.A comparison of institutional review board professionals' and patients' views on consent for research on medical practices.Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.SECA: SNP effect concordance analysis using genome-wide association summary results.The International Serious Adverse Events Consortium's data sharing model.Streamlining review of research involving humans: Canadian models.Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences

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Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience

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2011 nî lūn-bûn

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2011 թուականի Յուլիսին հրատարակուած գիտական յօդուած

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2011年の論文

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Carol P Somkin

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Carol Waudby

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Cathy A McCarty

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Erin Ramos

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Lynn G Dressler

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Maureen E Smith

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Rongling Li

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P2860

Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays

Genetics. No longer de-identified

The NCBI dbGaP database of genotypes and phenotypes

Genomic research and wide data sharing: views of prospective participants

The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule

Evaluating re-identification risks with respect to the HIPAA privacy rule

Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research

Public and biobank participant attitudes toward genetic research participation and data sharing

Glad you asked: participants' opinions of re-consent for dbGap data submission

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10.1101/GR.120329.111

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7

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Ellen Wright Clayton

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Barbara A Koenig

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51184041

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21632745

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genome-wide association study

research ethics

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