Managing incidental findings and research results in genomic research involving biobanks and archived data sets

The disclosure of diagnosis codes can breach research participants' privacy

(2014) Grigorios Loukides et al.   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Secondary researchers’ duties to return incidental findings and individual research results: a partial-entrustment account

(2012) Henry S. Richardson et al.   GENETICS IN MEDICINE

An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks

(2012) Gina Johnson et al.   GENETICS IN MEDICINE

The legal risks of returning results of genomics research

(2012) Ellen Wright Clayton et al.   GENETICS IN MEDICINE

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

(2011) Catherine A McCarty et al.   BMC Medical Genomics

Genetic risk estimation in the Coriell Personalized Medicine Collaborative

(2011) Catharine B Stack et al.   GENETICS IN MEDICINE

Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time

(2011) Jonathan S Berg et al.   GENETICS IN MEDICINE

Population biobanks and returning individual research results: mission impossible or new directions?

(2011) Susan E. Wallace et al.   HUMAN GENETICS

Biobanks and the Return of Research Results: Out with the Old and in with the New?

(2011) Ma'n H. Zawati et al.   JOURNAL OF LAW MEDICINE & ETHICS

Alzheimer's Disease Neuroimaging Initiative biomarkers as quantitative phenotypes: Genetics core aims, progress, and plans

(2010) Andrew J. Saykin et al.   Alzheimers & Dementia

“Human Non-Subjects Research”: Privacy and Compliance

(2010) Kyle Bertram Brothers et al.   AMERICAN JOURNAL OF BIOETHICS

Custodianship as an Ethical Framework for Biospecimen-Based Research

(2010) R. Yassin et al.   CANCER EPIDEMIOLOGY BIOMARKERS & PREVENTION

Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants

(2010) Richard R. Fabsitz et al.   Circulation-Cardiovascular Genetics

Principles of Human Subjects Protections Applied in an Opt-Out, De-identified Biobank

(2010) Jill Pulley et al.   CTS-Clinical and Translational Science

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

(2010) Ellen Wright Clayton et al.   GENETICS IN MEDICINE

Returning Individual Research Results: Development of a Cancer Genetics Education and Risk Communication Protocol

(2010) J. Scott Roberts et al.   Journal of Empirical Research on Human Research Ethics

Biobanking in pediatrics: the human nonsubjects approach

(2010) Kyle Bertram Brothers   Personalized Medicine

Multidimensional Results Reporting to Participants in Genomic Studies: Getting It Right

(2010) I. S. Kohane et al.   Science Translational Medicine

Offering Individual Genetic Research Results: Context Matters

(2010) L. M. Beskow et al.   Science Translational Medicine

Disclosure of individual genetic data to research participants: the debate reconsidered

(2010) Annelien L. Bredenoord et al.   TRENDS IN GENETICS

Disclosure of Research Results from Cancer Genomic Studies: State of the Science

(2009) L. G. Dressler   CLINICAL CANCER RESEARCH

The ClinSeq Project: Piloting large-scale genome sequencing for research in genomic medicine

(2009) L. G. Biesecker et al.   GENOME RESEARCH

Prospective Biorepository Participants' Perspectives on Access to Research Results

(2009) Laura M. Beskow et al.   Journal of Empirical Research on Human Research Ethics

Is it ethical to deny genetic research participants individualised results?

(2009) P Affleck   JOURNAL OF MEDICAL ETHICS

Public Expectations for Return of Results—Time to Stop Being Paternalistic?

(2008) Conrad Fernandez   AMERICAN JOURNAL OF BIOETHICS

Public Expectations for Return of Results from Large-Cohort Genetic Research

(2008) Juli Murphy et al.   AMERICAN JOURNAL OF BIOETHICS

Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion

(2008) David Kaufman et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS

Genomic variation in myeloma: design, content, and initial application of the Bank On A Cure SNP Panel to detect associations with progression-free survival

(2008) Brian Van Ness et al.   BMC Medicine

Informed Consent for Biorepositories: Assessing Prospective Participants' Understanding and Opinions

(2008) L. M. Beskow et al.   CANCER EPIDEMIOLOGY BIOMARKERS & PREVENTION

LINE-1 ORF1 protein enhances Alu SINE retrotransposition

(2008) Nicholas Wallace et al.   GENE

Molecular genetic testing for ultra rare diseases: models for translation from the research laboratory to the CLIA-certified diagnostic laboratory

(2008) S Das et al.   GENETICS IN MEDICINE

Incidental Findings and Ancillary-Care Obligations

(2008) Henry S. Richardson   JOURNAL OF LAW MEDICINE & ETHICS

The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties

(2008) Susan M. Wolf et al.   JOURNAL OF LAW MEDICINE & ETHICS

Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants?

(2008) Franklin G. Miller et al.   JOURNAL OF LAW MEDICINE & ETHICS

Understanding Incidental Findings in the Context of Genetics and Genomics

(2008) Mildred K. Cho   JOURNAL OF LAW MEDICINE & ETHICS

Incidental Findings in Genetics Research Using Archived DNA

(2008) Ellen Wright Clayton   JOURNAL OF LAW MEDICINE & ETHICS

Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations

(2008) Susan M. Wolf et al.   JOURNAL OF LAW MEDICINE & ETHICS

Collection, Storage, Retrieval and Distribution of Biological Materials for Research

(2008)  

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

(2008) Timothy Caulfield et al.   PLOS BIOLOGY