[PDF][PDF] Personalized medicine and the power of electronic health records

NS Abul-Husn, EE Kenny - Cell, 2019 - cell.com
Personalized medicine has largely been enabled by the integration of genomic and other
data with electronic health records (EHRs) in the United States and elsewhere. Increased …

A Belmont reboot: Building a normative foundation for human research in the 21st century

KB Brothers, SM Rivera, RJ Cadigan… - The Journal of Law …, 2019 - journals.sagepub.com
Over the past decade, scientists and ethicists began to feel that existing regulations for
oversight of human research did not align well with emerging practices and technologies …

[PDF][PDF] The responsibility to recontact research participants after reinterpretation of genetic and genomic research results

Y Bombard, KB Brothers, S Fitzgerald-Butt… - The American Journal of …, 2019 - cell.com
The evidence base supporting genetic and genomic sequence-variant interpretations is
continuously evolving. An inherent consequence is that a variant's clinical significance might …

[HTML][HTML] Return of individual genomic research results: are laws and policies keeping step?

A Thorogood, G Dalpé, BM Knoppers - European Journal of Human …, 2019 - nature.com
Efforts are underway to harmonise the return of individual results and incidental findings
from whole genome sequencing (WGS) across research contexts and countries. We …

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 …

[HTML][HTML] Implementation of genomics in medical practice to deliver precision medicine for an Asian population

Y Bylstra, S Davila, WK Lim, R Wu, JX Teo… - NPJ Genomic …, 2019 - nature.com
Whilst the underlying principles of precision medicine are comparable across the globe,
genomic references, health practices, costs and discrimination policies differ in Asian …

[HTML][HTML] Physicians' perspectives on receiving unsolicited genomic results

DB Pet, IA Holm, JL Williams, MF Myers, LL Novak… - Genetics in …, 2019 - Elsevier
Purpose Physicians increasingly receive genomic test results they did not order, which we
term “unsolicited genomic results”(UGRs). We asked physicians how they think such results …

[HTML][HTML] Return of genetic and genomic research findings: experience of a pediatric biorepository

T Papaz, E Liston, L Zahavich, DJ Stavropoulos… - BMC medical …, 2019 - Springer
Background Assess process, uptake, validity and resource needs for return of actionable
research findings to biobank participants. Methods Participants were prospectively enrolled …

[HTML][HTML] A FAUSTIAN BARGAIN THAT UNDERMINES RESEARCH PARTICIPANTS'PRIVACY RIGHTS AND RETURN OF RESULTS

BJ Evans, SM Wolf - Florida Law Review, 2019 - ncbi.nlm.nih.gov
A 2018 committee report published by the highly respected National Academies of Science,
Engineering, and Medicine (the Report) recommends stripping research participants of …

Should researchers offer results to family members of cancer biobank participants? A mixed-methods study of proband and family preferences

DR Gordon, C Radecki Breitkopf… - AJOB empirical …, 2019 - Taylor & Francis
Background: Genomic analysis may reveal both primary and secondary findings with direct
relevance to the health of probands' biological relatives. Researchers question their …