The American Journal of Bioethics, Volume 18, Issue 4 (2018)

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The American Journal of Bioethics, Volume 18, Issue 4 (2018)

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Editorial

Editorial
Building a Trustworthy Precision Health Research Enterprise
David Magnus & Jason N. Batten
Pages: 1-2
Published online: 05 Apr 2018
CitationforBuilding a Trustworthy Precision Health Research Enterprise | Full Text | References | PDF (58.2 KB)
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Free Access

Target Article

Article
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research
Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee
Pages: 3-20
Published online: 05 Apr 2018
AbstractforBeyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research | Full Text | References | PDF (241.6 KB)
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Open Peer Commentaries

Article Commentary
Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks
Aaron Goldenberg & Kyle Brothers
Pages: 21-23
Published online: 05 Apr 2018
First Page PreviewforMisplaced Trust: Building Research Relationships in the Age of Biorepository Networks | Full Text | References | PDF (73.4 KB)
  • 252 Views
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Article Commentary
Grudging Trust and the Limits of Trustworthy Biorepository Curation
Karen M. Meagher, Eric T. Juengst & Gail E. Henderson
Pages: 23-25
Published online: 05 Apr 2018
First Page PreviewforGrudging Trust and the Limits of Trustworthy Biorepository Curation | Full Text | References | PDF (48.9 KB)
  • 201 Views
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Article Commentary
The Role of the Health Care Provider in Building Trust Between Patients and Precision Medicine Research Programs
Anitra Persaud & Vence L. Bonham
Pages: 26-28
Published online: 05 Apr 2018
First Page PreviewforThe Role of the Health Care Provider in Building Trust Between Patients and Precision Medicine Research Programs | Full Text | References | PDF (46.9 KB)
  • 617 Views
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Article Commentary
Inspired Translation: Synthesizing Qualitative Research and Boot Camp Translation to Achieve Meaningful Community Engagement
Bethany M. Kwan, Suzanne R. Millward, Meleah Himber, Julie Ressalam, Heidi Wald, Matthew Wynia & Marilyn E. Coors
Pages: 29-31
Published online: 05 Apr 2018
First Page PreviewforInspired Translation: Synthesizing Qualitative Research and Boot Camp Translation to Achieve Meaningful Community Engagement | Full Text | References | PDF (48.1 KB)
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Article Commentary
Learning Is Not Enough: Earning Institutional Trustworthiness Through Knowledge Translation
Stephanie R. Morain, Nancy E. Kass & Ruth R. Faden
Pages: 31-34
Published online: 05 Apr 2018
First Page PreviewforLearning Is Not Enough: Earning Institutional Trustworthiness Through Knowledge Translation | Full Text | References | PDF (111.3 KB)
  • 381 Views
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Article Commentary
Trust, Precision Medicine Research, and Equitable Participation of Underserved Populations
Maya Sabatello, Shawneequa Callier, Nanibaa' A. Garrison & Elizabeth G. Cohn
Pages: 34-36
Published online: 05 Apr 2018
First Page PreviewforTrust, Precision Medicine Research, and Equitable Participation of Underserved Populations | Full Text | References | PDF (106.8 KB)
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Article Commentary
Deconstructing Trust and Recognizing Vulnerability in Research With Diverse Populations
Erin Talati Paquette & Sabrina Derrington
Pages: 37-39
Published online: 05 Apr 2018
First Page PreviewforDeconstructing Trust and Recognizing Vulnerability in Research With Diverse Populations | Full Text | References | PDF (103.9 KB)
  • 280 Views
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Article Commentary
Perspectives on Achieving Institutional Trust in Personalized Medicine
Gabrielle Samuel & Sandi Dheensa
Pages: 39-41
Published online: 05 Apr 2018
First Page PreviewforPerspectives on Achieving Institutional Trust in Personalized Medicine | Full Text | References | PDF (104.1 KB)
  • 238 Views
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Article Commentary
Patients' Trust as Fundament for Research Ethics Boards
Krista Tromp & Suzanne van de Vathorst
Pages: 42-44
Published online: 05 Apr 2018
First Page PreviewforPatients' Trust as Fundament for Research Ethics Boards | Full Text | References | PDF (106.5 KB)
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Article Commentary
Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research
Demetrio Sierra-Mercado & Gabriel Lázaro-Muñoz
Pages: 44-46
Published online: 05 Apr 2018
First Page PreviewforEnhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research | Full Text | References | PDF (106.8 KB)
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Article Commentary
Diversity Beyond Race and Ethnicity: Enhancing Inclusion With an Expanded Definition of Diversity
Gwendolyn P. Quinn, Clement K. Gwede & Cathy D. Meade
Pages: 47-48
Published online: 05 Apr 2018
CitationforDiversity Beyond Race and Ethnicity: Enhancing Inclusion With an Expanded Definition of Diversity | Full Text | References | PDF (99.3 KB)
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Article Commentary
Geometry of Trust: Why We Need to Distinguish Between Horizontal and Vertical Trust
Karin R. Jongsma & Annelien L. Bredenoord
Pages: 48-50
Published online: 05 Apr 2018
First Page PreviewforGeometry of Trust: Why We Need to Distinguish Between Horizontal and Vertical Trust | Full Text | References | PDF (105.3 KB)
  • 258 Views
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Article Commentary
What's in a Name? The Politics of ‘Precision Medicine’
Sarah Chan & Sonja Erikainen
Pages: 50-52
Published online: 05 Apr 2018
First Page PreviewforWhat's in a Name? The Politics of ‘Precision Medicine’ | Full Text | References | PDF (52 KB)
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Open Access
Article Commentary
What's Trust Got To Do With It? Ensuring Meaningful Community Engagement
Andrew Plunk & Sarah Gehlert
Pages: 53-55
Published online: 05 Apr 2018
First Page PreviewforWhat's Trust Got To Do With It? Ensuring Meaningful Community Engagement | Full Text | References | PDF (50.3 KB)
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Article Commentary
Including Everyone but Engaging No One? Partnership as a Prerequisite for Trustworthiness
Alexander T. M. Cheung
Pages: 55-57
Published online: 05 Apr 2018
First Page PreviewforIncluding Everyone but Engaging No One? Partnership as a Prerequisite for Trustworthiness | Full Text | References | PDF (45.8 KB)
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Target Article

Article
Ethical Guidance for Selecting Clinical Trials to Receive Limited Space in an Immunotherapy Production Facility
Nancy S. Jecker, Aaron G. Wightman, Abby R. Rosenberg & Douglas S. Diekema
Pages: 58-67
Published online: 05 Apr 2018
AbstractforEthical Guidance for Selecting Clinical Trials to Receive Limited Space in an Immunotherapy Production Facility | Full Text | References | PDF (127.5 KB)
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Open Peer Commentaries

Article Commentary
Fairness in Manufacturing Cellular Therapies
Amritava Das, Krishanu Saha & Pilar N. Ossorio
Pages: 68-70
Published online: 05 Apr 2018
First Page PreviewforFairness in Manufacturing Cellular Therapies | Full Text | References | PDF (75.2 KB)
  • 182 Views
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Article Commentary
On Scarcity and the Value of Clinical Trials
Luke Gelinas, Holly Fernandez Lynch, Barbara E. Bierer & I. Glenn Cohen
Pages: 71-73
Published online: 05 Apr 2018
First Page PreviewforOn Scarcity and the Value of Clinical Trials | Full Text | References | PDF (47.8 KB)
  • 166 Views
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Article Commentary
Disease Prevalence and the Magnitude of Research Benefits
Leah Pierson & Joseph Millum
Pages: 73-74
Published online: 05 Apr 2018
CitationforDisease Prevalence and the Magnitude of Research Benefits | Full Text | References | PDF (39.8 KB)
  • 121 Views
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Article Commentary
Ethical Ruminations of a Rheumatologist: Autoimmunity Is an Important Consideration for Immunotherapy Trials
Jane S. Kang
Pages: 75-76
Published online: 05 Apr 2018
CitationforEthical Ruminations of a Rheumatologist: Autoimmunity Is an Important Consideration for Immunotherapy Trials | Full Text | References | PDF (92.9 KB)
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Article Commentary
Prioritizing Facts and Values in Immunotherapy Trial Selection: Some Further Guidance
Valerye Milleson
Pages: 76-78
Published online: 05 Apr 2018
First Page PreviewforPrioritizing Facts and Values in Immunotherapy Trial Selection: Some Further Guidance | Full Text | References | PDF (105.2 KB)
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Article Commentary
Perverse Effects: How Insufficient Guidance to IPFs Can Undermine Both Research and Health Outcomes of Clinical Trials
John W. Frye III
Pages: 78-80
Published online: 05 Apr 2018
First Page PreviewforPerverse Effects: How Insufficient Guidance to IPFs Can Undermine Both Research and Health Outcomes of Clinical Trials | Full Text | References | PDF (102.7 KB)
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Article Commentary
Fairness and Desert: A Critique of the Random Selection Criterion in Clinical Trials
Eisuke Nakazawa, Keiichiro Yamamoto & Akira Akabayashi
Pages: 81-82
Published online: 05 Apr 2018
CitationforFairness and Desert: A Critique of the Random Selection Criterion in Clinical Trials | Full Text | References | PDF (35.1 KB)
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Case Report

Case Report
Is It Ethically Appropriate to Refuse to Compensate Participants Who Are Believed to Have Intentionally Concealed Medical Conditions?
Holly A. Taylor & Christian Morales
Pages: 83-84
Published online: 05 Apr 2018
CitationforIs It Ethically Appropriate to Refuse to Compensate Participants Who Are Believed to Have Intentionally Concealed Medical Conditions? | Full Text | PDF (57.4 KB)
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Case Commentaries

Article Commentary
Mutual Obligations in Research and Withholding Payment From Deceptive Participants
Holly Fernandez Lynch, Luke Gelinas & Emily A. Largent
Pages: 85-87
Published online: 05 Apr 2018
First Page PreviewforMutual Obligations in Research and Withholding Payment From Deceptive Participants | Full Text | References | PDF (70.1 KB)
  • 131 Views
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Article Commentary
Best to Exclude but Pay
Marion Danis, Sam Doernberg, Matthew Memoli & Joseph Millum
Pages: 87-88
Published online: 05 Apr 2018
CitationforBest to Exclude but Pay | Full Text | References | PDF (36.7 KB)
  • 60 Views
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Article Commentary
To Pay or Not to Pay? Withholding Payment From Research Participants
Rosamond Rhodes & Michael Danziger
Pages: 88-90
Published online: 05 Apr 2018
First Page PreviewforTo Pay or Not to Pay? Withholding Payment From Research Participants | Full Text | PDF (39.7 KB)
  • 98 Views
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Case Report

Case Report
Involving Pregnant Women in Research: What Should We Recommend When the Regulations Seem Ethically Problematic?
Holly A. Taylor & Christian Morales
Pages: 91-92
Published online: 05 Apr 2018
CitationforInvolving Pregnant Women in Research: What Should We Recommend When the Regulations Seem Ethically Problematic? | Full Text | References | PDF (59.5 KB)
  • 129 Views
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Case Commentaries

Article Commentary
Conflicts Between Regulations and Ethical Principles: Resolving Ambiguity in Favor of the Ethically Preferable Outcome
Seema K. Shah & Kathryn Porter
Pages: 93-94
Published online: 05 Apr 2018
CitationforConflicts Between Regulations and Ethical Principles: Resolving Ambiguity in Favor of the Ethically Preferable Outcome | Full Text | References | PDF (59.4 KB)
  • 183 Views
  • 1 CrossRef citations
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Article Commentary
When to Avoid Giving Advice on the Ethical Conduct of Research
Richard R. Sharp & Megan A. Allyse
Pages: 94-95
Published online: 05 Apr 2018
CitationforWhen to Avoid Giving Advice on the Ethical Conduct of Research | Full Text | PDF (34.6 KB)
  • 90 Views
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Article Commentary
When Research Regulations and Ethics Conflict
Haley K. Sullivan, Derek W. Braverman & David Wendler
Pages: 96-97
Published online: 05 Apr 2018
CitationforWhen Research Regulations and Ethics Conflict | Full Text | References | PDF (89.9 KB)
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Book Review

Book Review
Review of Ronald W. Dworkin, Medical Catastrophe: Confessions of an Anesthesiologist1
Katherine Ruth Gentry
Pages: W1-W3
Published online: 05 Apr 2018
First Page PreviewforReview of Ronald W. Dworkin, Medical Catastrophe: Confessions of an Anesthesiologist1 | Full Text | References | PDF (69.3 KB)
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Correspondence

Response to Open Peer Commentaries on “The Default Position: Optimizing Pediatric Participation in Medical Decision Making”
Aleksandra E. Olszewski & Sara F. Goldkind
Pages: W4-W7
Published online: 05 Apr 2018
First Page PreviewforResponse to Open Peer Commentaries on “The Default Position: Optimizing Pediatric Participation in Medical Decision Making” | Full Text | References | PDF (129.4 KB)
  • 113 Views
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Response to Open Peer Commentaries on “From ‘Longshot’ to ‘Fantasy’: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail”
Elliott Mark Weiss & Autumn Fiester
Pages: W8-W9
Published online: 05 Apr 2018
CitationforResponse to Open Peer Commentaries on “From ‘Longshot’ to ‘Fantasy’: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail” | Full Text | References | PDF (117.9 KB)
  • 141 Views
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Article
Unjust Outcomes and Unfair Process?
D. Robert MacDougall, Elise M. Smith & David B. Resnik
Pages: W10-W12
Published online: 05 Apr 2018
First Page PreviewforUnjust Outcomes and Unfair Process? | Full Text | References | PDF (75.9 KB)
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