Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.

PubWeight™: 1.47‹?› | Rank: Top 5%

🔗 View Article (PMC 3090678)

Published in Genet Med on October 01, 2010

Authors

Ellen Wright Clayton1, Maureen Smith, Stephanie M Fullerton, Wylie Burke, Catherine A McCarty, Barbara A Koenig, Amy L McGuire, Laura M Beskow, Lynn Dressler, Amy A Lemke, Erin M Ramos, Laura Lyman Rodriguez, Consent and Community Consultation Working Group of the eMERGE Consortium

Author Affiliations

1: Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN, USA. ellen.clayton@vanderbilt.edu

Articles citing this

Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med (2012) 9.65

Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network. Genet Med (2012) 3.29

Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res (2011) 1.91

Design and anticipated outcomes of the eMERGE-PGx project: a multicenter pilot for preemptive pharmacogenomics in electronic health record systems. Clin Pharmacol Ther (2014) 1.73

Identifiability in biobanks: models, measures, and mitigation strategies. Hum Genet (2011) 1.66

Overcoming implementation challenges of personalized cancer therapy. Nat Rev Clin Oncol (2012) 1.56

Community engagement in biobanking: Experiences from the eMERGE Network. Genomics Soc Policy (2010) 1.22

Secondary use of clinical data: the Vanderbilt approach. J Biomed Inform (2014) 1.12

Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations. J Am Med Inform Assoc (2013) 1.03

Community engagement for big epidemiology: deliberative democracy as a tool. J Pers Med (2014) 0.99

EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California. Clin Transl Sci (2015) 0.97

"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies. BMC Med Genomics (2011) 0.94

Community engagement in US biobanking: multiplicity of meaning and method. Public Health Genomics (2014) 0.92

Research guidelines in the era of large-scale collaborations: an analysis of Genome-wide Association Study Consortia. Am J Epidemiol (2012) 0.91

Biobanking: The Melding of Research with Clinical Care. Curr Genet Med Rep (2013) 0.90

Big data, open science and the brain: lessons learned from genomics. Front Hum Neurosci (2014) 0.85

Practical considerations in genomic decision support: The eMERGE experience. J Pathol Inform (2015) 0.82

The translational potential of research on the ethical, legal, and social implications of genomics. Genet Med (2014) 0.82

Merging Electronic Health Record Data and Genomics for Cardiovascular Research: A Science Advisory From the American Heart Association. Circ Cardiovasc Genet (2016) 0.77

Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions. BMC Med Res Methodol (2016) 0.77

Lay Attitudes Toward Trust, Uncertainty, and the Return of Pediatric Research Results in Biobanking. AJOB Empir Bioeth (2015) 0.75

Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan. BMC Med Ethics (2014) 0.75

Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention. Genet Med (2016) 0.75

Articles cited by this

Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet (2008) 20.38

Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics (2008) 12.10

Disclosing individual results of clinical research: implications of respect for participants. JAMA (2005) 8.15

Public expectations for return of results from large-cohort genetic research. Am J Bioeth (2008) 7.63

Medicine. Reestablishing the researcher-patient compact. Science (2007) 5.64

The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet (2006) 5.34

Integrating ethics and science in the International HapMap Project. Nat Rev Genet (2004) 5.13

The Human Genome Project: lessons from large-scale biology. Science (2003) 4.69

Reporting genetic results in research studies: summary and recommendations of an NHLBI working group. Am J Med Genet A (2006) 4.56

Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med (2008) 4.52

How (not) to protect genomic data privacy in a distributed network: using trail re-identification to evaluate and design anonymity protection systems. J Biomed Inform (2004) 3.90

Informing study participants of research results: an ethical imperative. IRB (2003) 3.65

Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics (2010) 3.57

Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics (2008) 3.44

Involving study populations in the review of genetic research. J Law Med Ethics (2000) 3.36

A new statistic and its power to infer membership in a genome-wide association study using genotype frequencies. Nat Genet (2009) 3.06

Assessing the understanding of biobank participants. Am J Med Genet A (2009) 3.04

Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. Am J Med Genet A (2008) 2.74

Informed consent for biorepositories: assessing prospective participants' understanding and opinions. Cancer Epidemiol Biomarkers Prev (2008) 2.57

Informed consent and subject motivation to participate in a large, population-based genomics study: the Marshfield Clinic Personalized Medicine Research Project. Community Genet (2007) 2.48

Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Community Genet (2007) 2.43

No place to hide--reverse identification of patients from published maps. N Engl J Med (2006) 2.06

Disclosure of genetic information obtained through research. Genet Test (2004) 2.02

Community engagement and informed consent in the International HapMap project. Community Genet (2007) 1.73

The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet (1999) 1.72

Informed consent and biobanks. J Law Med Ethics (2005) 1.65

Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection. J Empir Res Hum Res Ethics (2010) 1.59

Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations. Environ Health Perspect (2002) 1.58

Re-identification of familial database records. AMIA Annu Symp Proc (2006) 1.56

Grappling with groups: protecting collective interests in biomedical research. J Med Philos (2007) 1.55

Common consent. Nature (2009) 1.47

Communal discourse as a supplement to informed consent for genetic research. Nat Genet (1997) 1.14

Disclosure of research results to research participants: A pilot study of the needs and attitudes of adolescents and parents. Paediatr Child Health (2005) 1.09

Articles by these authors

Finding the missing heritability of complex diseases. Nature (2009) 67.95

Potential etiologic and functional implications of genome-wide association loci for human diseases and traits. Proc Natl Acad Sci U S A (2009) 54.68

A genome-wide association study identifies alleles in FGFR2 associated with risk of sporadic postmenopausal breast cancer. Nat Genet (2007) 22.96

ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet Med (2013) 22.73

International network of cancer genome projects. Nature (2010) 20.35

Immunohistochemical and clinical characterization of the basal-like subtype of invasive breast carcinoma. Clin Cancer Res (2004) 16.51

New models of collaboration in genome-wide association studies: the Genetic Association Information Network. Nat Genet (2007) 13.76

Whole-genome sequencing in a patient with Charcot-Marie-Tooth neuropathy. N Engl J Med (2010) 13.57

The molecular portraits of breast tumors are conserved across microarray platforms. BMC Genomics (2006) 12.45

American Cancer Society guidelines for breast screening with MRI as an adjunct to mammography. CA Cancer J Clin (2007) 12.19

Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics (2008) 12.10

Identifying personal genomes by surname inference. Science (2013) 10.79

Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med (2012) 9.65

The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies. BMC Med Genomics (2011) 9.20

Broad Consent for Research With Biological Samples: Workshop Conclusions. Am J Bioeth (2015) 8.99

A multistage genome-wide association study in breast cancer identifies two new risk alleles at 1p11.2 and 14q24.1 (RAD51L1). Nat Genet (2009) 8.39

The Uniform Data Set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer Dis Assoc Disord (2006) 8.04

Newly discovered breast cancer susceptibility loci on 3p24 and 17q23.2. Nat Genet (2009) 7.30

Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet (2010) 6.74

Dissecting complex disease: the quest for the Philosopher's Stone? Int J Epidemiol (2006) 5.64

An unwelcome side effect of direct-to-consumer personal genome testing: raiding the medical commons. JAMA (2008) 5.25

Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol (2008) 5.24

The National Alzheimer's Coordinating Center (NACC) database: the Uniform Data Set. Alzheimer Dis Assoc Disord (2007) 5.01

Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review. JAMA (2006) 4.87

Systematic comparison of phenome-wide association study of electronic medical record data and genome-wide association study data. Nat Biotechnol (2013) 4.85

Offering individual genetic research results: context matters. Sci Transl Med (2010) 4.51

ClinGen--the Clinical Genome Resource. N Engl J Med (2015) 4.45

American Cancer Society guidelines for breast cancer screening: update 2003. CA Cancer J Clin (2003) 4.43

The PhenX Toolkit: get the most from your measures. Am J Epidemiol (2011) 4.19

Actionable, pathogenic incidental findings in 1,000 participants' exomes. Am J Hum Genet (2013) 4.06

Exploring concordance and discordance for return of incidental findings from clinical sequencing. Genet Med (2012) 4.04

Variants near FOXE1 are associated with hypothyroidism and other thyroid conditions: using electronic medical records for genome- and phenome-wide studies. Am J Hum Genet (2011) 3.85

New models for large prospective studies: is there a better way? Am J Epidemiol (2012) 3.85

Reconsidering the family history in primary care. J Gen Intern Med (2004) 3.50

Genomic research and wide data sharing: views of prospective participants. Genet Med (2010) 3.45

From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet (2012) 3.44

National Institutes of Health State-of-the-Science Conference: role of active surveillance in the management of men with localized prostate cancer. Ann Intern Med (2012) 3.44

Incidental findings in imaging research: evaluating incidence, benefit, and burden. Arch Intern Med (2010) 3.40

Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network. Genet Med (2012) 3.29

Glad you asked: participants' opinions of re-consent for dbGap data submission. J Empir Res Hum Res Ethics (2010) 3.29

Potential for genetics to promote public health: genetics research on smoking suggests caution about expectations. JAMA (2006) 3.20

ASHG Statement* on direct-to-consumer genetic testing in the United States. Obstet Gynecol (2007) 3.19

The National Alzheimer's Coordinating Center (NACC) Database: an Alzheimer disease database. Alzheimer Dis Assoc Disord (2004) 2.97

A typology of shared decision making, informed consent, and simple consent. Ann Intern Med (2004) 2.94

Return of research results from genomic biobanks: cost matters. Genet Med (2012) 2.93

Pathologic complete response predicts recurrence-free survival more effectively by cancer subset: results from the I-SPY 1 TRIAL--CALGB 150007/150012, ACRIN 6657. J Clin Oncol (2012) 2.85

Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility. Genome Res (2012) 2.76

Chemotherapy response and recurrence-free survival in neoadjuvant breast cancer depends on biomarker profiles: results from the I-SPY 1 TRIAL (CALGB 150007/150012; ACRIN 6657). Breast Cancer Res Treat (2011) 2.73

Point-counterpoint. Ethics and genomic incidental findings. Science (2013) 2.73

Neighborhood socioeconomic disadvantage and 30-day rehospitalization: a retrospective cohort study. Ann Intern Med (2014) 2.67

Newborn screening technology: proceed with caution. Pediatrics (2006) 2.54

Clinical genetics provider real-time workflow study. Genet Med (2008) 2.49

Use of an electronic medical record for the identification of research subjects with diabetes mellitus. Clin Med Res (2007) 2.48

Quality control procedures for genome-wide association studies. Curr Protoc Hum Genet (2011) 2.48

For-profit hospital status and rehospitalizations at different hospitals: an analysis of Medicare data. Ann Intern Med (2010) 2.47

Genome-wide association of lipid-lowering response to statins in combined study populations. PLoS One (2010) 2.43

Science and regulation. Regulating direct-to-consumer personal genome testing. Science (2010) 2.40

A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice. Genet Med (2010) 2.40

The genomic applications in practice and prevention network. Genet Med (2009) 2.39

Ethical, legal, and social implications of biobanks for genetics research. Adv Genet (2008) 2.35

Ethical issues in stopping randomized trials early because of apparent benefit. Ann Intern Med (2007) 2.21

The Mayo Clinic Biobank: a building block for individualized medicine. Mayo Clin Proc (2013) 2.18

Pharmacogenetic testing: not as simple as it seems. Genet Med (2008) 2.18

Informed consent in research to improve the number and quality of deceased donor organs. Crit Care Med (2011) 2.18

The Human Microbiome Project: a community resource for the healthy human microbiome. PLoS Biol (2012) 2.17

The legal risks of returning results of genomics research. Genet Med (2012) 2.15

Genomic profiling to promote a healthy lifestyle: not ready for prime time. Nat Genet (2003) 2.11

Interactions between genetic variants and breast cancer risk factors in the breast and prostate cancer cohort consortium. J Natl Cancer Inst (2011) 2.09

The FDA and genomic tests--getting regulation right. N Engl J Med (2015) 2.09

Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium. Genet Med (2013) 2.08

Advertising, patient decision making, and self-referral for computed tomographic and magnetic resonance imaging. Arch Intern Med (2004) 2.08

Genome- and phenome-wide analyses of cardiac conduction identifies markers of arrhythmia risk. Circulation (2013) 2.06

Five-year incidence of open-angle glaucoma: the visual impairment project. Ophthalmology (2002) 2.05

Evaluation of a breast/ovarian cancer genetics referral screening tool in a mammography population. Genet Med (2009) 2.05

Genetic variants associated with the white blood cell count in 13,923 subjects in the eMERGE Network. Hum Genet (2011) 2.00

Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet (2010) 1.98

Experiences and attitudes of genome investigators regarding return of individual genetic test results. Genet Med (2013) 1.97

Next-generation sequencing in the clinic: are we ready? Nat Rev Genet (2012) 1.95

Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res (2011) 1.91

"Choice" in end-of-life decision making: researching fact or fiction? Gerontologist (2002) 1.89

Personalized genomic information: preparing for the future of genetic medicine. Nat Rev Genet (2010) 1.87

Data use under the NIH GWAS data sharing policy and future directions. Nat Genet (2014) 1.82

Serum levels of vitamin D metabolites and breast cancer risk in the prostate, lung, colorectal, and ovarian cancer screening trial. Cancer Epidemiol Biomarkers Prev (2008) 1.80

Risk factors associated with the incidence of open-angle glaucoma: the visual impairment project. Invest Ophthalmol Vis Sci (2003) 1.79

Importance of multi-modal approaches to effectively identify cataract cases from electronic health records. J Am Med Inform Assoc (2012) 1.79

The OHRP and SUPPORT. N Engl J Med (2013) 1.78

Strategies for culturally effective end-of-life care. Ann Intern Med (2002) 1.77