Genomics in the clinic: ethical and policy challenges in clinical next-generation sequencing programs at early adopter USA institutions

Personalized Medicine
Lauren C MilnerDavid C Magnus

Abstract

Next-generation sequencing (NGS) technologies are poised to revolutionize clinical diagnosis and treatment, but raise significant ethical and policy challenges. This review examines NGS program challenges through a synthesis of published literature, website and conference presentation content, and interviews at early-adopting institutions in the USA. Institutions are proactively addressing policy challenges related to the management and technical aspects of program development. However, ethical challenges related to patient-related aspects have not been fully addressed. These complex challenges present opportunities to develop comprehensive and standardized regulations across programs. Understanding the strengths, weaknesses and current practices of evolving NGS program approaches are important considerations for institutions developing NGS services, policymakers regulating or funding NGS programs and physicians and patients considering NGS services.

References

Jul 13, 2006·JAMA : the Journal of the American Medical Association·Isaac S KohaneRuss B Altman
Nov 10, 2006·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·E Ernst
May 17, 2007·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Erin K HarveyJoseph D McInerney
Dec 19, 2007·Nature Reviews. Genetics·Amy L McGuireMildred K Cho
Jan 17, 2008·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Amy L McGuireAlica Goldman
Jun 13, 2008·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Susan M WolfBenjamin S Wilfond
Mar 30, 2010·Genome Medicine·Charles N Rotimi, Patricia A Marshall
May 18, 2010·American Journal of Clinical Pathology·Richard L HaspelJeffrey E Saffitz
Jun 11, 2010·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Susan Brown TrinidadWylie Burke
Apr 22, 2011·Science Translational Medicine·Abel N KhoJoshua C Denny
Jun 17, 2011·Science Translational Medicine·Stephen F Kingsmore, Carol J Saunders
Jul 7, 2011·Journal of Medical Genetics·Jacek MajewskiNada Jabado
Sep 2, 2011·Current Opinion in Pediatrics·David Bick, David Dimmock
Sep 10, 2011·Expert Review of Molecular Diagnostics·Eric W KleeMatthew J Ferber
Dec 20, 2011·Nature Biotechnology·Hugo Y K LamMichael Snyder
Jan 20, 2012·European Journal of Human Genetics : EJHG·Christian GilissenJoris A Veltman
Feb 22, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Leslie G Biesecker
Mar 1, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Stephanie M FullertonGail P Jarvik
Mar 2, 2012·Clinical Genetics·A N Desai, A Jere
Mar 17, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert C GreenHoward J Jacob
Mar 29, 2012·European Journal of Human Genetics : EJHG·Ros HastingsMartina C Cornel
May 15, 2012·Journal of Medical Genetics·Anna C NeedDavid B Goldstein
Nov 6, 2012·Annual Review of Pathology·Scott D Boyd
Nov 10, 2012·Nature Biotechnology·Amy S GargisIra M Lubin
Dec 19, 2012·Journal of Pathology Informatics·Rama R GullapalliMichael J Becich
Jan 12, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Teri A ManolioGeoffrey S Ginsburg
Jan 19, 2013·Science·Melissa GymrekYaniv Erlich
Jan 24, 2013·Briefings in Bioinformatics·Stephan PabingerZlatko Trajanoski
Feb 13, 2013·American Journal of Medical Genetics. Part a·Zoe LohnJan Friedman
Mar 2, 2013·Science·Amy Gutmann
Apr 11, 2013·JAMA : the Journal of the American Medical Association·Bruce R Korf, Heidi L Rehm
Apr 24, 2013·American Journal of Medical Genetics. Part a·Seema M JamalMichael J Bamshad
Apr 24, 2013·American Journal of Medical Genetics. Part a·Joon-Ho YuMichael J Bamshad
May 7, 2013·American Journal of Human Genetics·Leslie G Biesecker
May 17, 2013·European Journal of Human Genetics : EJHG·Carla G van ElUNKNOWN ESHG Public and Professional Policy Committee
May 21, 2013·Science·Amy L McGuireRobert C Green
Jun 22, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert C GreenUNKNOWN American College of Medical Genetics and Genomics

❮ Previous
Next ❯

Citations

Jul 5, 2019·Ophthalmic Genetics·Stephanie P BrooksTania Bubela
Jan 1, 2019·Expert Review of Precision Medicine and Drug Development·Nicole Martinez-Martin, David Magnus

❮ Previous
Next ❯

Software Mentioned

NextGene
Sorts Intolerant From Tolerant ( SIFT )
ClinSeq

Related Concepts

Related Feeds

BioHub - Researcher Network

The Chan-Zuckerberg Biohub aims to support the fundamental research and develop the technologies that will enable physicians to cure, prevent, or manage all diseases in our childrens' lifetimes. The CZ Biohub brings together researchers from UC Berkeley, Stanford, and UCSF. Find the latest research from the CZ Biohub researcher network here.

Related Papers

Clinical Genetics
L F Porter, G C M Black
American Journal of Clinical Oncology
Steven Sorscher
Minnesota Medicine
Dominic Decker
© 2022 Meta ULC. All rights reserved