Self-guided management of exome and whole-genome sequencing results: changing the results return model

Prenatal Whole Genome Sequencing

(2014) Greer Donley et al.   HASTINGS CENTER REPORT

Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago

(2012) Amy A. Lemke et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

The Centers for Mendelian Genomics: A new large-scale initiative to identify the genes underlying rare Mendelian conditions

(2012) Michael J. Bamshad et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms

(2012) Holly K. Tabor et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Patient-controlled encrypted genomic data: an approach to advance clinical genomics

(2012) Yannis J Trakadis   BMC Medical Genomics

What factors may influence psychological well being at three months and one year post BRCA genetic result disclosure?

(2012) Nina Bosch et al.   BREAST

Sharing Individual Research Results with Biospecimen Contributors: Counterpoint

(2012) E. W. Clayton   CANCER EPIDEMIOLOGY BIOMARKERS & PREVENTION

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

(2012) Gabrielle M Christenhusz et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

(2012) Julie Lapointe et al.   GENETICS IN MEDICINE

Taxonomizing, sizing and overcoming the incidentalome

(2012) Isaac S. Kohane et al.   GENETICS IN MEDICINE

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

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

A closer look revisited: are we subjects or are we donors?

(2012) Rebecca Fisher   GENETICS IN MEDICINE

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

(2012) Stephanie M. Fullerton et al.   GENETICS IN MEDICINE

The past, present and future of the debate over return of research results and incidental findings

(2012) Susan M. Wolf   GENETICS IN MEDICINE

Return of results: not that complicated?

(2012) James P. Evans et al.   GENETICS IN MEDICINE

Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project

(2012) Leslie G. Biesecker   GENETICS IN MEDICINE

The legal risks of returning results of genomics research

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

Exploring concordance and discordance for return of incidental findings from clinical sequencing

(2012) Robert C. Green et al.   GENETICS IN MEDICINE

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

(2012) Susan M. Wolf et al.   GENETICS IN MEDICINE

Points to consider in the clinical application of genomic sequencing

(2012)   GENETICS IN MEDICINE

From patients to partners: participant-centric initiatives in biomedical research

(2012) Jane Kaye et al.   NATURE REVIEWS GENETICS

Incidental Medical Information in Whole-Exome Sequencing

(2012) B. D. Solomon et al.   PEDIATRICS

Whole-Genome Sequencing: The New Standard of Care?

(2012) L. R. Brunham et al.   SCIENCE

Noninvasive Whole-Genome Sequencing of a Human Fetus

(2012) J. O. Kitzman et al.   Science Translational Medicine

Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research

(2011) Holly K. Tabor et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Human Genome Sequencing in Health and Disease

(2011) Claudia Gonzaga-Jauregui et al.   Annual Review of Medicine

The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?

(2011) M. Arribas-Ayllon   BRITISH MEDICAL BULLETIN

Whole exome and whole genome sequencing

(2011) David Bick et al.   CURRENT OPINION IN PEDIATRICS

Motivators for participation in a whole-genome sequencing study: implications for translational genomics research

(2011) Flavia M Facio et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Professional Perspectives About Pharmacogenetic Testing and Managing Ancillary Findings

(2011) Susanne B. Haga et al.   Genetic Testing and Molecular Biomarkers

Public Perspectives About Pharmacogenetic Testing and Managing Ancillary Findings

(2011) Susanne B. Haga et al.   Genetic Testing and Molecular Biomarkers

Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small

(2011) Richard R Sharp   GENETICS IN MEDICINE

Patient reactions to personalized medicine vignettes: An experimental design

(2011) Morgan Butrick et al.   GENETICS IN MEDICINE

Underutilization of BRCA1/2 testing to guide breast cancer treatment: Black and Hispanic women particularly at risk

(2011) Douglas E Levy 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

Disclosing pathogenic genetic variants to research participants: Quantifying an emerging ethical responsibility

(2011) C. A. Cassa et al.   GENOME RESEARCH

Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy

(2011) Annelien L. Bredenoord et al.   HUMAN MUTATION

“If I Could in a Small Way Help”: Motivations for and Beliefs About Sample Donation for Genetic Research

(2011) Marsha Michie et al.   Journal of Empirical Research on Human Research Ethics

Exome sequencing in sporadic autism spectrum disorders identifies severe de novo mutations

(2011) Brian J O'Roak et al.   NATURE GENETICS

Exome sequencing as a tool for Mendelian disease gene discovery

(2011) Michael J. Bamshad et al.   NATURE REVIEWS GENETICS

You never call, you never write: why return of ‘omic’ results to research participants is both a good idea and a moral imperative

(2011) Misha Angrist   Personalized Medicine

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

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

Making a definitive diagnosis: Successful clinical application of whole exome sequencing in a child with intractable inflammatory bowel disease

(2010) Elizabeth A Worthey et al.   GENETICS IN MEDICINE

A timely arrival for genomic medicine

(2010) Alan N Mayer et al.   GENETICS IN MEDICINE

Researcher Perspectives on Disclosure of Incidental Findings in Genetic Research

(2010) Meredith C. Meacham et al.   Journal of Empirical Research on Human Research Ethics

Challenges in the clinical application of whole-genome sequencing

(2010) Kelly E Ormond et al.   LANCET

Barriers to the use of genetic testing: A study of racial and ethnic disparities

(2009) Sandra Suther et al.   GENETICS IN MEDICINE

Emotional distress following genetic testing for hereditary breast and ovarian cancer: A meta-analytic review.

(2009) Jada G. Hamilton et al.   HEALTH PSYCHOLOGY

Exome sequencing identifies the cause of a mendelian disorder

(2009) Sarah B Ng et al.   NATURE GENETICS

Exome sequencing makes medical genomics a reality

(2009) Leslie G Biesecker   NATURE GENETICS

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

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

An Unwelcome Side Effect of Direct-to-Consumer Personal Genome Testing

(2008) Amy L. McGuire et al.   JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION

Understanding Incidental Findings in the Context of Genetics and Genomics

(2008) Mildred K. Cho   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

The search for clarity in communicating research results to study participants

(2008) D I Shalowitz et al.   JOURNAL OF MEDICAL ETHICS

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

(2008) Timothy Caulfield et al.   PLOS BIOLOGY