Cargando…

Ethical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience

We examined the Institutional Review Board (IRB) process at 9 academic institutions in the electronic Medical Records and Genomics (eMERGE) Network, for proposed electronic health record-based genomic medicine studies, to identify common questions and concerns. Sequencing of 109 disease related gene...

Descripción completa

Detalles Bibliográficos
Autores principales:	Fossey, Robyn, Kochan, David, Winkler, Erin, Pacyna, Joel E., Olson, Janet, Thibodeau, Stephen, Connolly, John J., Harr, Margaret, Behr, Meckenzie A., Prows, Cynthia A., Cobb, Beth, Myers, Melanie F., Leslie, Nancy D., Namjou-Khales, Bahram, Milo Rasouly, Hila, Wynn, Julia, Fedotov, Alexander, Chung, Wendy K., Gharavi, Ali, Williams, Janet L., Pais, Lynn, Holm, Ingrid, Aufox, Sharon, Smith, Maureen E., Scrol, Aaron, Leppig, Kathleen, Jarvik, Gail P., Wiesner, Georgia L., Li, Rongling, Stroud, Mary, Smoller, Jordan W., Sharp, Richard R., Kullo, Iftikhar J.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	MDPI 2018
Materias:	Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872076/ https://www.ncbi.nlm.nih.gov/pubmed/29301385 http://dx.doi.org/10.3390/jpm8010002

Ejemplares similares

Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
por: Lynch, John A., et al.
Publicado: (2020)

Returning Results in the Genomic Era: Initial Experiences of the eMERGE Network
por: Wiesner, Georgia L., et al.
Publicado: (2020)

Ethical conflicts in translational genetic research: lessons learned from the eMERGE-III experience
por: Halverson, Colin M. E., et al.
Publicado: (2020)

Frequency of genomic incidental findings among 21,915 eMERGE network participants
por: Gordon, Adam S., et al.
Publicado: (2020)

Penetrance of Breast Cancer Susceptibility Genes From the eMERGE III Network
por: Fan, Xiao, et al.
Publicado: (2021)

Prospective participant selection and ranking to maximize actionable pharmacogenetic variants and discovery in the eMERGE Network
por: Crosslin, David R., et al.
Publicado: (2015)

Return of results in the genomic medicine projects of the eMERGE network
por: Kullo, Iftikhar J., et al.
Publicado: (2014)

Harmonizing Outcomes for Genomic Medicine: Comparison of eMERGE Outcomes to ClinGen Outcome/Intervention Pairs
por: Williams, Janet L., et al.
Publicado: (2018)

An electronic health record (EHR) log analysis shows limited clinician engagement with unsolicited genetic test results
por: Nestor, Jordan G, et al.
Publicado: (2021)

Preferences of biobank participants for receiving actionable genomic test results: results of a re-contacting study
por: Henrikson, Nora B., et al.
Publicado: (2021)

The eMERGE Network: A consortium of biorepositories linked to electronic medical records data for conducting genomic studies
por: McCarty, Catherine A, et al.
Publicado: (2011)

GWAS and enrichment analyses of non-alcoholic fatty liver disease identify new trait-associated genes and pathways across eMERGE Network
por: Namjou, Bahram, et al.
Publicado: (2019)

The eMERGE genotype set of 83,717 subjects imputed to ~40 million variants genome wide and association with the herpes zoster medical record phenotype
por: Stanaway, Ian B., et al.
Publicado: (2018)

Genetic variation among 82 pharmacogenes: The PGRNseq data from the eMERGE network
por: Bush, WS, et al.
Publicado: (2016)

eMERGEing progress in genomics—the first seven years
por: Crawford, Dana C., et al.
Publicado: (2014)

Evaluation of the MC4R gene across eMERGE network identifies many unreported obesity-associated variants
por: Namjou, Bahram, et al.
Publicado: (2020)

A GWAS Study on Liver Function Test Using eMERGE Network Participants
por: Namjou, Bahram, et al.
Publicado: (2015)

Loci identified by a genome‐wide association study of carotid artery stenosis in the eMERGE network
por: Palmer, Melody R., et al.
Publicado: (2020)

Challenges in returning results in a genomic medicine implementation study: the Return of Actionable Variants Empirical (RAVE) study
por: Kochan, David C., et al.
Publicado: (2020)

Pitfalls and Challenges of Consenting to Genetic Research Studies
por: Milo Rasouly, Hila, et al.
Publicado: (2018)

The Electronic Medical Records and Genomics (eMERGE) Network: past, present, and future
por: Gottesman, Omri, et al.
Publicado: (2013)

Facilitating Genetics Aware Clinical Decision Support: Putting the eMERGE Infrastructure into Practice
por: Taylor, Casey Overby, et al.
Publicado: (2021)

Building a family network from genetic testing
por: Leppig, Kathleen A., et al.
Publicado: (2016)

Neutral, Negative, or Negligible? Changes in Patient Perceptions of Disease Risk Following Receipt of a Negative Genomic Screening Result
por: Stuttgen, Kelsey, et al.
Publicado: (2020)

leeHom: adaptor trimming and merging for Illumina sequencing reads
por: Renaud, Gabriel, et al.
Publicado: (2014)

GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing
por: Milo Rasouly, Hila, et al.
Publicado: (2020)

Detecting potential pleiotropy across cardiovascular and neurological diseases using univariate, bivariate, and multivariate methods on 43,870 individuals from the eMERGE network
por: Zhang, Xinyuan, et al.
Publicado: (2019)

An eMERGE Clinical Center at Partners Personalized Medicine
por: Smoller, Jordan W., et al.
Publicado: (2016)

Studying the impact of translational genomic research: Lessons from eMERGE
por: Clayton, Ellen Wright, et al.
Publicado: (2023)

Design and Anticipated Outcomes of the eMERGE-PGx Project: A Multi-Center Pilot for Pre-Emptive Pharmacogenomics in Electronic Health Record Systems
por: Rasmussen-Torvik, Laura J., et al.
Publicado: (2014)

eMERGE Phenome-Wide Association Study (PheWAS) identifies clinical associations and pleiotropy for stop-gain variants
por: Verma, Anurag, et al.
Publicado: (2016)

Efficient merging of data from multiple samples for determination of anomalous substructure
por: Akey, David L., et al.
Publicado: (2016)

Imputation and quality control steps for combining multiple genome-wide datasets
por: Verma, Shefali S., et al.
Publicado: (2014)

Genetic Variants Associated with Serum Thyroid Stimulating Hormone (TSH) Levels in European Americans and African Americans from the eMERGE Network
por: Malinowski, Jennifer R., et al.
Publicado: (2014)

Examining the Impact of Polygenic Risk Information in Primary Care
por: Pacyna, Joel E., et al.
Publicado: (2023)

Matching and merging
por: Sachs, Kirsten
Publicado: (2017)

Merging of the Senses
por: Simon, Sidney S.
Publicado: (2008)

Penetrance of Hemochromatosis in HFE Genotypes Resulting in p.Cys282Tyr and p.[Cys282Tyr];[His63Asp] in the eMERGE Network
por: Gallego, Carlos J., et al.
Publicado: (2015)

MergeReference: A Tool for Merging Reference Panels for HLA Imputation
por: Cook, Seungho, et al.
Publicado: (2017)

Electronic medical records and genomics (eMERGE) network exploration in cataract: Several new potential susceptibility loci
por: Ritchie, Marylyn D., et al.
Publicado: (2014)

Cannot write session to /tmp/vufind_sessions/sess_l0uoahgquuoio9brqb8jjoeda2