Literature DB >> 23453621

Evolving approaches to the ethical management of genomic data.

Jean E McEwen1, Joy T Boyer, Kathie Y Sun.   

Abstract

The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science. Published by Elsevier Ltd.

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Year:  2013        PMID: 23453621      PMCID: PMC3665610          DOI: 10.1016/j.tig.2013.02.001

Source DB:  PubMed          Journal:  Trends Genet        ISSN: 0168-9525            Impact factor:   11.639


  89 in total

Review 1.  Genetic privacy and confidentiality: why they are so hard to protect.

Authors:  M A Rothstein
Journal:  J Law Med Ethics       Date:  1998       Impact factor: 1.718

Review 2.  Disclosure of individual genetic data to research participants: the debate reconsidered.

Authors:  Annelien L Bredenoord; Hester Y Kroes; Edwin Cuppen; Michael Parker; Johannes J M van Delden
Journal:  Trends Genet       Date:  2010-12-27       Impact factor: 11.639

3.  The kindness of strangers: the donative contract between subjects and researchers and the non-obligation to return individual results of genetic research.

Authors:  Michelle N Meyer
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229

Review 4.  The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues.

Authors:  Stuart Hogarth; Gail Javitt; David Melzer
Journal:  Annu Rev Genomics Hum Genet       Date:  2008       Impact factor: 8.929

5.  From consent to institutions: designing adaptive governance for genomic biobanks.

Authors:  Kieran C O'Doherty; Michael M Burgess; Kelly Edwards; Richard P Gallagher; Alice K Hawkins; Jane Kaye; Veronica McCaffrey; David E Winickoff
Journal:  Soc Sci Med       Date:  2011-07-02       Impact factor: 4.634

6.  Research ethics. Research practice and participant preferences: the growing gulf.

Authors:  S B Trinidad; S M Fullerton; E J Ludman; G P Jarvik; E B Larson; W Burke
Journal:  Science       Date:  2011-01-21       Impact factor: 47.728

7.  Eyes wide open: the personal genome project, citizen science and veracity in informed consent.

Authors:  Misha Angrist
Journal:  Per Med       Date:  2009-11       Impact factor: 2.512

8.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

9.  Secondary researchers' duties to return incidental findings and individual research results: a partial-entrustment account.

Authors:  Henry S Richardson; Mildred K Cho
Journal:  Genet Med       Date:  2012-02-23       Impact factor: 8.822

10.  Taxonomizing, sizing, and overcoming the incidentalome.

Authors:  Isaac S Kohane; Michael Hsing; Sek Won Kong
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

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  22 in total

Review 1.  Precisely Where Are We Going? Charting the New Terrain of Precision Prevention.

Authors:  Karen M Meagher; Michelle L McGowan; Richard A Settersten; Jennifer R Fishman; Eric T Juengst
Journal:  Annu Rev Genomics Hum Genet       Date:  2017-04-24       Impact factor: 8.929

Review 2.  Hunter-gatherer genomics: evolutionary insights and ethical considerations.

Authors:  Richard J Bankoff; George H Perry
Journal:  Curr Opin Genet Dev       Date:  2016-07-09       Impact factor: 5.578

3.  The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.

Authors:  Gail E Henderson; Susan M Wolf; Kristine J Kuczynski; Steven Joffe; Richard R Sharp; D Williams Parsons; Bartha M Knoppers; Joon-Ho Yu; Paul S Appelbaum
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

4.  From "Personalized" to "Precision" Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.

Authors:  Eric Juengst; Michelle L McGowan; Jennifer R Fishman; Richard A Settersten
Journal:  Hastings Cent Rep       Date:  2016-09       Impact factor: 2.683

5.  Evaluation of Commercial Next-Generation Sequencing Bioinformatics Software Solutions.

Authors:  Rama R Gullapalli
Journal:  J Mol Diagn       Date:  2019-11-18       Impact factor: 5.568

6.  Informed consent and ethical re-use of African genomic data.

Authors:  Galen E B Wright; Adebowale A Adeyemo; Nicki Tiffin
Journal:  Hum Genomics       Date:  2014-10-22       Impact factor: 4.639

7.  Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.

Authors:  Saskia C Sanderson; Michael A Diefenbach; Randi Zinberg; Carol R Horowitz; Margaret Smirnoff; Micol Zweig; Samantha Streicher; Ethylin Wang Jabs; Lynne D Richardson
Journal:  J Community Genet       Date:  2013-06-22

8.  The nuanced negative: Meanings of a negative diagnostic result in clinical exome sequencing.

Authors:  Debra Skinner; Kelly A Raspberry; Martha King
Journal:  Sociol Health Illn       Date:  2016-08-19

9.  "Getting off the Bus Closer to Your Destination": Patients' Views about Pharmacogenetic Testing.

Authors:  Susan Brown Trinidad; Tara B Coffin; Stephanie M Fullerton; James Ralston; Gail P Jarvik; Eric B Larson
Journal:  Perm J       Date:  2015-06-01

10.  Return of Value in the New Era of Biomedical Research-One Size Will Not Fit All.

Authors:  Dmitry Khodyakov; Alexandra Mendoza-Graf; Sandra Berry; Camille Nebeker; Elizabeth Bromley
Journal:  AJOB Empir Bioeth       Date:  2019-10-03
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