Return of individual research results from genomic research: A systematic review of stakeholder perspectives
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 …
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 …
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
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 …
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 …
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 …
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 …
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
Background While integrating genomic sequencing into clinical care carries clear medical
benefits, it also raises difficult ethical questions. Compared to traditional sequencing …
benefits, it also raises difficult ethical questions. Compared to traditional sequencing …
Informed consent within a learning health system: A scoping review
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 …
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 …
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 …
researchers' attitude toward information and consent for the secondary use of health data for …