[HTML][HTML] Stakeholder engagement in policy development: challenges and opportunities for human genomics

AA Lemke, JN Harris-Wai - Genetics in Medicine, 2015 - Elsevier
Along with rapid advances in human genomics, policies governing genomic data and
clinical technologies have proliferated. Stakeholder engagement is widely lauded as an …

Unsolved challenges of clinical whole-exome sequencing: a systematic literature review of end-users' views

G Bertier, M Hétu, Y Joly - BMC medical genomics, 2016 - Springer
Background Whole-exome sequencing (WES) consists in the capture, sequencing and
analysis of all exons in the human genome. Originally developed in the research context …

Return of genomic results to research participants: the floor, the ceiling, and the choices in between

GP Jarvik, LM Amendola, JS Berg, K Brothers… - The American Journal of …, 2014 - cell.com
As more research studies incorporate next-generation sequencing (including whole-
genome or whole-exome sequencing), investigators and institutional review boards face …

[HTML][HTML] The cost-effectiveness of returning incidental findings from next-generation genomic sequencing

CS Bennette, CJ Gallego, W Burke, GP Jarvik… - Genetics in …, 2015 - Elsevier
Abstract Purpose The American College of Medical Genetics and Genomics (ACMG)
recommended that clinical laboratories performing next-generation sequencing analyze and …

Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing

JH Yu, TM Harrell, SM Jamal, HK Tabor… - The American Journal of …, 2014 - cell.com
Professional recommendations for the return of results from exome and whole-genome
sequencing (ES/WGS) have been controversial. The lack of clear guidance about whether …

Genomic contextualism: shifting the rhetoric of genetic exceptionalism

NA Garrison, KB Brothers, AJ Goldenberg… - The American Journal …, 2019 - Taylor & Francis
As genomic science has evolved, so have policy and practice debates about how to
describe and evaluate the ways in which genomic information is treated for individuals …

Incidental findings with genomic testing: implications for genetic counseling practice

MI Roche, JS Berg - Current genetic medicine reports, 2015 - Springer
This paper summarizes the current controversies surrounding the identification and
disclosure of “incidental” or “secondary” findings from genomic sequencing and the …

Models of consent to return of incidental findings in genomic research

PS Appelbaum, E Parens, CR Waldman… - Hastings Center …, 2014 - Wiley Online Library
Genomic research—including whole genome sequencing and whole exome sequencing—
has a growing presence in contemporary biomedical investigation. The capacity of …

Genomic sequencing: assessing the health care system, policy, and big-data implications

KA Phillips, JR Trosman, RK Kelley, MJ Pletcher… - Health …, 2014 - healthaffairs.org
New genomic sequencing technologies enable the high-speed analysis of multiple genes
simultaneously, including all of those in a person's genome. Sequencing is a prominent …

Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves

W Schupmann, SA Miner, HK Sullivan, JR Glover… - Genetics in …, 2021 - nature.com
Purpose Proposals to return medically actionable secondary genetic findings (SFs) in the
clinical and research settings have generated controversy regarding whether to solicit …