Literature DB >> 26479558

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Susan M Wolf1, Wylie Burke2, Barbara A Koenig3.   

Abstract

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID: 26479558      PMCID: PMC4620583          DOI: 10.1111/jlme.12291

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  78 in total

1.  An ethics framework for public health.

Authors:  N E Kass
Journal:  Am J Public Health       Date:  2001-11       Impact factor: 9.308

2.  Ethics and public health: forging a strong relationship.

Authors:  Daniel Callahan; Bruce Jennings
Journal:  Am J Public Health       Date:  2002-02       Impact factor: 9.308

3.  Genetic research and health disparities.

Authors:  Pamela Sankar; Mildred K Cho; Celeste M Condit; Linda M Hunt; Barbara Koenig; Patricia Marshall; Sandra Soo-Jin Lee; Paul Spicer
Journal:  JAMA       Date:  2004-06-23       Impact factor: 56.272

4.  Translational and clinical science--time for a new vision.

Authors:  Elias A Zerhouni
Journal:  N Engl J Med       Date:  2005-10-12       Impact factor: 91.245

Review 5.  Cancer outcomes research and the arenas of application.

Authors:  Joseph Lipscomb; Molla S Donaldson; Robert A Hiatt
Journal:  J Natl Cancer Inst Monogr       Date:  2004

6.  Clinical research at a crossroads: the NIH roadmap.

Authors:  Elias A Zerhouni
Journal:  J Investig Med       Date:  2006-05       Impact factor: 2.895

7.  Medicine. Reestablishing the researcher-patient compact.

Authors:  Isaac S Kohane; Kenneth D Mandl; Patrick L Taylor; Ingrid A Holm; Daniel J Nigrin; Louis M Kunkel
Journal:  Science       Date:  2007-05-11       Impact factor: 47.728

8.  The meaning of translational research and why it matters.

Authors:  Steven H Woolf
Journal:  JAMA       Date:  2008-01-09       Impact factor: 56.272

9.  ACMG recommendations for standards for interpretation and reporting of sequence variations: Revisions 2007.

Authors:  C Sue Richards; Sherri Bale; Daniel B Bellissimo; Soma Das; Wayne W Grody; Madhuri R Hegde; Elaine Lyon; Brian E Ward
Journal:  Genet Med       Date:  2008-04       Impact factor: 8.822

Review 10.  The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention?

Authors:  Muin J Khoury; Marta Gwinn; Paula W Yoon; Nicole Dowling; Cynthia A Moore; Linda Bradley
Journal:  Genet Med       Date:  2007-10       Impact factor: 8.822

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  23 in total

1.  Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Authors:  Laura M Beskow; P Pearl O'Rourke
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research.

Authors:  Sarah Gehlert; Jessica Mozersky
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

3.  Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.

Authors:  Susan M Wolf; Pilar N Ossorio; Susan A Berry; Henry T Greely; Amy L McGuire; Michelle A Penny; Sharon F Terry
Journal:  J Law Med Ethics       Date:  2020-03       Impact factor: 1.718

4.  Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.

Authors:  Kathleen A Culhane-Pera; Robert J Straka; MaiKia Moua; Youssef Roman; Pachia Vue; Kang Xiaaj; May Xia Lo; Mai Lor
Journal:  J Community Genet       Date:  2017-01-10

5.  Evaluation of Recipients of Positive and Negative Secondary Findings Evaluations in a Hybrid CLIA-Research Sequencing Pilot.

Authors:  Julie C Sapp; Jennifer J Johnston; Kate Driscoll; Alexis R Heidlebaugh; Ane Miren Sagardia; D Nadine Dogbe; Kendall L Umstead; Erin Turbitt; Ilias Alevizos; Jeffrey Baron; Carsten Bönnemann; Brian Brooks; Sandra Donkervoort; Youn Hee Jee; W Marston Linehan; Francis J McMahon; Joel Moss; James C Mullikin; Deborah Nielsen; Eileen Pelayo; Alan T Remaley; Richard Siegel; Helen Su; Carlos Zarate; Teri A Manolio; Barbara B Biesecker; Leslie G Biesecker
Journal:  Am J Hum Genet       Date:  2018-08-16       Impact factor: 11.025

6.  A content analysis of the views of genetics professionals on race, ancestry, and genetics.

Authors:  Sarah C Nelson; Joon-Ho Yu; Jennifer K Wagner; Tanya M Harrell; Charmaine D Royal; Michael J Bamshad
Journal:  AJOB Empir Bioeth       Date:  2019-01-04

7.  Understanding What Information Is Valued By Research Participants, And Why.

Authors:  Consuelo H Wilkins; Brandy M Mapes; Rebecca N Jerome; Victoria Villalta-Gil; Jill M Pulley; Paul A Harris
Journal:  Health Aff (Millwood)       Date:  2019-03       Impact factor: 6.301

8.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025

9.  Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.

Authors:  Diane M Korngiebel; Kathleen M West; Wylie Burke
Journal:  J Genet Couns       Date:  2017-11-21       Impact factor: 2.537

10.  Inclusiveness and ethical considerations for observational, translational, and clinical cancer health disparity research.

Authors:  Michael Behring; Kevin Hale; Bunyamin Ozaydin; William E Grizzle; Stephen O Sodeke; Upender Manne
Journal:  Cancer       Date:  2019-09-10       Impact factor: 6.860

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