Return of individual research results from genomic research: A systematic review of stakeholder perspectives

DF Vears, JT Minion, SJ Roberts, J Cummings… - PloS one, 2021 - journals.plos.org
Despite the plethora of empirical studies conducted to date, debate continues about whether
and to what extent results should be returned to participants of genomic research. We aimed …

An evidence framework for genetic testing

National Academies of Sciences, Medicine Division… - 2017 - books.google.com
Advances in genetics and genomics are transforming medical practice, resulting in a
dramatic growth of genetic testing in the health care system. The rapid development of new …

Are physicians prepared for whole genome sequencing? A qualitative analysis

KD Christensen, JL Vassy, L Jamal… - Clinical …, 2016 - Wiley Online Library
Although the integration of whole genome sequencing (WGS) into standard medical practice
is rapidly becoming feasible, physicians may be unprepared to use it. Primary care …

Variants of uncertain significance in BRCA: a harbinger of ethical and policy issues to come?

JY Cheon, J Mozersky, R Cook-Deegan - Genome medicine, 2014 - Springer
After two decades of genetic testing and research, the BRCA1 and BRCA2 genes are two of
the most well-characterized genes in the human genome. As a result, variants of uncertain …

Mapping the ethics of translational genomics: situating return of results and navigating the research-clinical divide

SM Wolf, W Burke, BA Koenig - Journal of Law, Medicine & Ethics, 2015 - cambridge.org
Research on the use of genome and exome sequencing for diagnosis, identification of
potential therapies, precision prescribing of pharmaceuticals, and identification of disease …

[HTML][HTML] Navigating the research–clinical interface in genomic medicine: analysis from the CSER Consortium

SM Wolf, LM Amendola, JS Berg, WK Chung… - Genetics in …, 2018 - Elsevier
Abstract Purpose The Clinical Sequencing Exploratory Research (CSER) Consortium
encompasses nine National Institutes of Health–funded U-award projects investigating …

Old challenges or new issues? Genetic health professionals' experiences obtaining informed consent in diagnostic genomic sequencing

DF Vears, P Borry, J Savulescu… - AJOB Empirical …, 2021 - Taylor & Francis
Background While integrating genomic sequencing into clinical care carries clear medical
benefits, it also raises difficult ethical questions. Compared to traditional sequencing …

Informed consent within a learning health system: A scoping review

A Cumyn, A Barton, R Dault, AM Cloutier… - Learning health …, 2020 - Wiley Online Library
Introduction A major consideration for the implementation of a learning health system (LHS)
is consent from participants to the use of their data for research purposes. The main …

Integrating rules for genomic research, clinical care, public health screening and DTC testing: creating translational law for translational genomics

SM Wolf, PN Ossorio, SA Berry… - The Journal of Law …, 2020 - journals.sagepub.com
Human genomics is a translational field spanning research, clinical care, public health, and
direct-to-consumer testing. However, law differs across these domains on issues including …

Citizens, research ethics committee members and researchers' attitude toward information and consent for the secondary use of health data: Implications for research …

A Cumyn, R Dault, A Barton… - Journal of Empirical …, 2021 - journals.sagepub.com
A survey was conducted to assess citizens, research ethics committee members, and
researchers' attitude toward information and consent for the secondary use of health data for …