Literature DB >> 18087293

Research ethics and the challenge of whole-genome sequencing.

Amy L McGuire1, Timothy Caulfield, Mildred K Cho.   

Abstract

The recent completion of the first two individual whole-genome sequences is a research milestone. As personal genome research advances, investigators and international research bodies must ensure ethical research conduct. We identify three major ethical considerations that have been implicated in whole-genome research: the return of research results to participants; the obligations, if any, that are owed to participants' relatives; and the future use of samples and data taken for whole-genome sequencing. Although the issues are not new, we discuss their implications for personal genomics and provide recommendations for appropriate management in the context of research involving individual whole-genome sequencing.

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Year:  2008        PMID: 18087293      PMCID: PMC2225443          DOI: 10.1038/nrg2302

Source DB:  PubMed          Journal:  Nat Rev Genet        ISSN: 1471-0056            Impact factor:   53.242


  33 in total

1.  Protecting the privacy of family members in survey and pedigree research.

Authors:  J Botkin
Journal:  JAMA       Date:  2001-01-10       Impact factor: 56.272

2.  The debate over research on stored biological samples: what do sources think?

Authors:  Dave Wendler; Ezekiel Emanuel
Journal:  Arch Intern Med       Date:  2002-07-08

Review 3.  Ethical, legal, and social implications of genomic medicine.

Authors:  Ellen Wright Clayton
Journal:  N Engl J Med       Date:  2003-08-07       Impact factor: 91.245

Review 4.  Integrating ethics and science in the International HapMap Project.

Authors: 
Journal:  Nat Rev Genet       Date:  2004-06       Impact factor: 53.242

5.  Coding and consent: moral challenges of the database project in Iceland.

Authors:  Vilhjalmur Arnason
Journal:  Bioethics       Date:  2004       Impact factor: 1.898

6.  Privacy, families, and human subject protections: some lessons from pedigree research.

Authors:  R M Cook-Deegan
Journal:  J Contin Educ Health Prof       Date:  2001       Impact factor: 1.355

7.  Genetic information and the family: are we our brother's keeper?

Authors:  Bartha Maria Knoppers
Journal:  Trends Biotechnol       Date:  2002-02       Impact factor: 19.536

8.  Breaking the stalemate: a prospective regulatory framework for unforseen research uses of human tissue samples and health information.

Authors:  H T Greely
Journal:  Wake Forest Law Rev       Date:  1999

9.  The $1000 genome: ethical and legal issues in whole genome sequencing of individuals.

Authors:  John A Robertson
Journal:  Am J Bioeth       Date:  2003       Impact factor: 11.229

10.  The diploid genome sequence of an individual human.

Authors:  Samuel Levy; Granger Sutton; Pauline C Ng; Lars Feuk; Aaron L Halpern; Brian P Walenz; Nelson Axelrod; Jiaqi Huang; Ewen F Kirkness; Gennady Denisov; Yuan Lin; Jeffrey R MacDonald; Andy Wing Chun Pang; Mary Shago; Timothy B Stockwell; Alexia Tsiamouri; Vineet Bafna; Vikas Bansal; Saul A Kravitz; Dana A Busam; Karen Y Beeson; Tina C McIntosh; Karin A Remington; Josep F Abril; John Gill; Jon Borman; Yu-Hui Rogers; Marvin E Frazier; Stephen W Scherer; Robert L Strausberg; J Craig Venter
Journal:  PLoS Biol       Date:  2007-09-04       Impact factor: 8.029

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  90 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

2.  Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel.

Authors:  Stephanie M Fullerton; Sandra S-J Lee
Journal:  BMC Med Ethics       Date:  2011-09-26       Impact factor: 2.652

Review 3.  To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2012-06-27       Impact factor: 4.246

4.  Whole-Genome Sequencing in Diagnostic Medicine: Too Much Information for Doctors and Patients?

Authors:  Wolfram Henn
Journal:  Transfus Med Hemother       Date:  2009-07-21       Impact factor: 3.747

5.  Prenatal whole genome sequencing: just because we can, should we?

Authors:  Greer Donley; Sara Chandros Hull; Benjamin E Berkman
Journal:  Hastings Cent Rep       Date:  2012-06-20       Impact factor: 2.683

6.  Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.

Authors:  Menno Mostert; Annelien L Bredenoord; Monique C I H Biesaart; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2015-11-11       Impact factor: 4.246

7.  What does the duty to warn require?

Authors:  Seema K Shah; Sara Chandros Hull; Michael A Spinner; Benjamin E Berkman; Lauren A Sanchez; Ruquyyah Abdul-Karim; Amy P Hsu; Reginald Claypool; Steven M Holland
Journal:  Am J Bioeth       Date:  2013       Impact factor: 11.229

Review 8.  Ethics and neuropsychiatric genetics: a review of major issues.

Authors:  Steven K Hoge; Paul S Appelbaum
Journal:  Int J Neuropsychopharmacol       Date:  2012-01-25       Impact factor: 5.176

9.  Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.

Authors:  Teddy D Warner; Carol J Weil; Christopher Andry; Howard B Degenholtz; Lisa Parker; Latarsha J Carithers; Michelle Feige; David Wendler; Rebecca D Pentz
Journal:  J Empir Res Hum Res Ethics       Date:  2018-02-01       Impact factor: 1.742

10.  Implementation of a Multicenter Biobanking Collaboration for Next-Generation Sequencing-Based Biomarker Discovery Based on Fresh Frozen Pretreatment Tumor Tissue Biopsies.

Authors:  Sander Bins; Geert A Cirkel; Christa G Gadellaa-Van Hooijdonk; Fleur Weeber; Isaac J Numan; Annette H Bruggink; Paul J van Diest; Stefan M Willems; Wouter B Veldhuis; Michel M van den Heuvel; Rob J de Knegt; Marco J Koudijs; Erik van Werkhoven; Ron H J Mathijssen; Edwin Cuppen; Stefan Sleijfer; Jan H M Schellens; Emile E Voest; Marlies H G Langenberg; Maja J A de Jonge; Neeltje Steeghs; Martijn P Lolkema
Journal:  Oncologist       Date:  2016-09-23
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