The American Journal of Bioethics, Volume 20, Issue 4 (2020)

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The American Journal of Bioethics, Volume 20, Issue 4 (2020)

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EDITORIALS

Editorial
Meaningful Fissures: The Value of Divergent Agendas in Patient Advocacy
Jordan P. Richardson & Richard R. Sharp
Pages: 1-3
Published online: 24 Mar 2020
First Page PreviewforMeaningful Fissures: The Value of Divergent Agendas in Patient Advocacy | Full Text | References | PDF (513.6 KB) | EPUB
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Editorial
Like Autism, Representation Falls on a Spectrum
Nanette Elster & Kayhan Parsi
Pages: 4-5
Published online: 24 Mar 2020
CitationforLike Autism, Representation Falls on a Spectrum | Full Text | References | PDF (241.9 KB) | EPUB
  • 2225 Views
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Free Access
Editorial
Using Implementation Science to Enact Specific Ethical Norms: The Case of Code Status Policy
Emily Shearer & David Magnus
Pages: 6-7
Published online: 24 Mar 2020
CitationforUsing Implementation Science to Enact Specific Ethical Norms: The Case of Code Status Policy | Full Text | References | PDF (245.9 KB) | EPUB
  • 1033 Views
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Free Access
Editorial
Clearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research
Devan M. Duenas, Benjamin S. Wilfond & Liza-Marie Johnson
Pages: 8-10
Published online: 24 Mar 2020
First Page PreviewforClearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research | Full Text | References | PDF (520.9 KB) | EPUB
  • 884 Views
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Editorial
Patenting Foundational Technologies: Recent Developments in the CRISPR Patent Struggle
Julian Cockbain & Sigrid Sterckx
Pages: 11-12
Published online: 24 Mar 2020
CitationforPatenting Foundational Technologies: Recent Developments in the CRISPR Patent Struggle | Full Text | References | PDF (245.9 KB) | EPUB
  • 1695 Views
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TARGET ARTICLE

Article
Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation
Matthew S. McCoy, Emily Y. Liu, Amy S. F. Lutz & Dominic Sisti
Pages: 13-24
Published online: 24 Mar 2020
AbstractforEthical Advocacy Across the Autism Spectrum: Beyond Partial Representation | Full Text | References | PDF (1.2 MB) | EPUB
  • 2992 Views
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OPEN PEER COMMENTARIES

Article Commentary
Autistic Self Advocacy in the Developmental Disability Movement
Ari Ne’eman & Julia Bascom
Pages: 25-27
Published online: 24 Mar 2020
First Page PreviewforAutistic Self Advocacy in the Developmental Disability Movement | Full Text | References | PDF (416.8 KB) | EPUB
  • 1067 Views
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Article Commentary
Patient Representation: Mind the Gap Between Individual and Collective Claims
Karin R. Jongsma & Silke Schicktanz
Pages: 28-30
Published online: 24 Mar 2020
First Page PreviewforPatient Representation: Mind the Gap Between Individual and Collective Claims | Full Text | References | PDF (673.2 KB) | EPUB
  • 281 Views
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Article Commentary
Beyond Autism: Advocacy for Neurodevelopmental Differences
William D. Graf
Pages: 30-33
Published online: 24 Mar 2020
First Page PreviewforBeyond Autism: Advocacy for Neurodevelopmental Differences | Full Text | References | PDF (734.5 KB) | EPUB
  • 512 Views
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Article Commentary
Neurodiversity and Autism Advocacy: Who Fits Under the Autism Tent?
Kenneth A. Richman
Pages: 33-34
Published online: 24 Mar 2020
CitationforNeurodiversity and Autism Advocacy: Who Fits Under the Autism Tent? | Full Text | References | PDF (328.7 KB) | EPUB
  • 707 Views
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Article Commentary
A Care Ethics Approach to Ethical Advocacy for Community Conditions
Philip G. Day, Kristian E. Sanchack & Robert P. Lennon
Pages: 35-37
Published online: 24 Mar 2020
First Page PreviewforA Care Ethics Approach to Ethical Advocacy for Community Conditions | Full Text | References | PDF (580.4 KB) | EPUB
  • 233 Views
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Article Commentary
Hope Springs Eternal: Pitfalls of Partial Representation by Advocates Who Only Want the Best
Bryna Siegel
Pages: 38-40
Published online: 24 Mar 2020
First Page PreviewforHope Springs Eternal: Pitfalls of Partial Representation by Advocates Who Only Want the Best | Full Text | References | PDF (360.1 KB) | EPUB
  • 128 Views
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Article Commentary
Civic Engagement, Autism and Deliberative Democracy: Prioritizing the Inclusion of Marginalized Perspectives
Holly K. Tabor
Pages: 41-43
Published online: 24 Mar 2020
First Page PreviewforCivic Engagement, Autism and Deliberative Democracy: Prioritizing the Inclusion of Marginalized Perspectives | Full Text | References | PDF (370.8 KB) | EPUB
  • 385 Views
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Article Commentary
Additional Challenges to Fair Representation in Autistic Advocacy
Sam Fellowes
Pages: 44-45
Published online: 24 Mar 2020
CitationforAdditional Challenges to Fair Representation in Autistic Advocacy | Full Text | References | PDF (401.6 KB) | EPUB
  • 185 Views
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Article Commentary
Representing the Autism Spectrum
Robert Chapman & Walter Veit
Pages: 46-48
Published online: 24 Mar 2020
First Page PreviewforRepresenting the Autism Spectrum | Full Text | References | PDF (521.2 KB) | EPUB
  • 1607 Views
  • 19 CrossRef citations
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Article Commentary
Autism Advocacy Before and After DSM-5
Ryan H. Nelson
Pages: 48-50
Published online: 24 Mar 2020
First Page PreviewforAutism Advocacy Before and After DSM-5 | Full Text | References | PDF (367.2 KB) | EPUB
  • 592 Views
  • 3 CrossRef citations
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Article Commentary
Representation Is Never Perfect, But Are Parents Even Representatives?
Elle Benjamin, Bethany E. Ziss & B. R. George
Pages: 51-53
Published online: 24 Mar 2020
First Page PreviewforRepresentation Is Never Perfect, But Are Parents Even Representatives? | Full Text | References | PDF (574.7 KB) | EPUB
  • 303 Views
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Article Commentary
Parents of Autistic Children Are Deserving of Support
Zeljka Buturovic
Pages: 54-55
Published online: 24 Mar 2020
CitationforParents of Autistic Children Are Deserving of Support | Full Text | References | PDF (298.3 KB) | EPUB
  • 215 Views
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Article Commentary
Non-Electoral Representation and Promoting Welfare—Beyond Descriptive Representation
Lucy Frith
Pages: 56-58
Published online: 24 Mar 2020
First Page PreviewforNon-Electoral Representation and Promoting Welfare—Beyond Descriptive Representation | Full Text | References | PDF (367.5 KB) | EPUB
  • 197 Views
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Article Commentary
Ethical Representation by Patient Advocacy Organizations Also Requires Responsible Management of Potential Financial Conflicts of Interest
Bethany Bruno & Susannah Rose
Pages: 59-61
Published online: 24 Mar 2020
First Page PreviewforEthical Representation by Patient Advocacy Organizations Also Requires Responsible Management of Potential Financial Conflicts of Interest | Full Text | References | PDF (577.6 KB) | EPUB
  • 217 Views
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TARGET ARTICLE

Article
The “Ought-Is” Problem: An Implementation Science Framework for Translating Ethical Norms Into Practice
Bryan A. Sisk, Jessica Mozersky, Alison L. Antes & James M. DuBois
Pages: 62-70
Published online: 24 Mar 2020
AbstractforThe “Ought-Is” Problem: An Implementation Science Framework for Translating Ethical Norms Into Practice | Full Text | References | PDF (769.9 KB) | EPUB
  • 1398 Views
  • 29 CrossRef citations
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OPEN PEER COMMENTARIES

Article Commentary
Translational Ethics and Challenges Involved in Putting Norms Into Practice
Kristine Bærøe & Edmund Henden
Pages: 71-73
Published online: 24 Mar 2020
First Page PreviewforTranslational Ethics and Challenges Involved in Putting Norms Into Practice | Full Text | References | PDF (618.2 KB) | EPUB
  • 352 Views
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Article Commentary
Ethical Training Can Turn an “Ought” to a “Can”
Ira Bedzow & Matthew Wynia
Pages: 73-75
Published online: 24 Mar 2020
First Page PreviewforEthical Training Can Turn an “Ought” to a “Can” | Full Text | References | PDF (527.3 KB) | EPUB
  • 277 Views
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Article Commentary
An “Implementation Mindset” in Normative Bioethics Will Have Unintended Consequences
Joel E. Pacyna & Jon C. Tilburt
Pages: 76-78
Published online: 24 Mar 2020
First Page PreviewforAn “Implementation Mindset” in Normative Bioethics Will Have Unintended Consequences | Full Text | References | PDF (555.5 KB) | EPUB
  • 199 Views
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Article Commentary
Implementation in Bioethics: A Plea for a Participatory and Dialogical Approach
Suzanne Metselaar, Yolande Voskes, Bert Molewijk & Guy Widdershoven
Pages: 78-80
Published online: 24 Mar 2020
First Page PreviewforImplementation in Bioethics: A Plea for a Participatory and Dialogical Approach | Full Text | References | PDF (663.7 KB) | EPUB
  • 1229 Views
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Open Access
Article Commentary
Implementation Science and Bioethics: Lessons From European Empirical Bioethics Research?
Jonathan Ives, Giles Birchley & Richard Huxtable
Pages: 80-82
Published online: 24 Mar 2020
First Page PreviewforImplementation Science and Bioethics: Lessons From European Empirical Bioethics Research? | Full Text | References | PDF (582.5 KB) | EPUB
  • 260 Views
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Article Commentary
Implementation Science Can Do Even More for Translational Ethics
Katherine W. Saylor & Megan C. Roberts
Pages: 83-85
Published online: 24 Mar 2020
First Page PreviewforImplementation Science Can Do Even More for Translational Ethics | Full Text | References | PDF (517.8 KB) | EPUB
  • 216 Views
  • 1 CrossRef citations
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Article Commentary
Bioethical Ideals, Actual Practice, and the Double Life of Norms
Daniel Kelly & Nicolae Morar
Pages: 86-88
Published online: 24 Mar 2020
First Page PreviewforBioethical Ideals, Actual Practice, and the Double Life of Norms | Full Text | References | PDF (366.8 KB) | EPUB
  • 149 Views
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Article Commentary
Mind the Gap: How Should We Translate Specific Ethical Norms Into Interventions?
Niels Nijsingh, Bianca Jansky, Georg Marckmann & Katja Kuehlmeyer
Pages: 89-91
Published online: 24 Mar 2020
First Page PreviewforMind the Gap: How Should We Translate Specific Ethical Norms Into Interventions? | Full Text | References | PDF (361.8 KB) | EPUB
  • 174 Views
  • 1 CrossRef citations
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Article Commentary
Beyond Translating Ethical Norms Into Practice: Integrating Implementation and Assessment Mindsets
Joyeeta G. Dastidar
Pages: 92-94
Published online: 24 Mar 2020
First Page PreviewforBeyond Translating Ethical Norms Into Practice: Integrating Implementation and Assessment Mindsets | Full Text | References | PDF (700.4 KB) | EPUB
  • 102 Views
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Article Commentary
Responsible Innovation For and From Ethical Integration
John Noel Viaña, Sujatha Raman & Joan Leach
Pages: 94-97
Published online: 24 Mar 2020
First Page PreviewforResponsible Innovation For and From Ethical Integration | Full Text | References | PDF (899.7 KB) | EPUB
  • 771 Views
  • 4 CrossRef citations
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Article Commentary
The Feasibility of Implementing Normative Claims That Are Especially Strong and Important
Bryan Kibbe
Pages: 97-99
Published online: 24 Mar 2020
First Page PreviewforThe Feasibility of Implementing Normative Claims That Are Especially Strong and Important | Full Text | References | PDF (521.3 KB) | EPUB
  • 115 Views
  • 1 CrossRef citations
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Article Commentary
Making Ethics Happen: Addressing Injustice in Health Inequalities
Nathan Nobis & Stephen Sodeke
Pages: 100-101
Published online: 24 Mar 2020
CitationforMaking Ethics Happen: Addressing Injustice in Health Inequalities | Full Text | References | PDF (304 KB) | EPUB
  • 247 Views
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CASE REPORT

Case Report
Greater Than Minimal Risk, No Direct Benefit – Bridging Drug Trials and Novel Therapy in Pediatric Populations
Benjamin S. Wilfond, Devan M. Duenas & Liza-Marie Johnson
Pages: 102-103
Published online: 24 Mar 2020
CitationforGreater Than Minimal Risk, No Direct Benefit – Bridging Drug Trials and Novel Therapy in Pediatric Populations | Full Text | PDF (450.7 KB) | EPUB
  • 151 Views
  • 4 CrossRef citations
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CASE COMMENTARIES

Article Commentary
Balancing Risk and Reward: Greater Research Oversight Is Appropriate for Novel Therapies for Children With Life-Limiting Illness
Yoram Unguru
Pages: 104-105
Published online: 24 Mar 2020
CitationforBalancing Risk and Reward: Greater Research Oversight Is Appropriate for Novel Therapies for Children With Life-Limiting Illness | Full Text | References | PDF (246.4 KB) | EPUB
  • 77 Views
  • 1 CrossRef citations
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Article Commentary
Bringing Known Drugs to Pediatric Research: Safety, Efficacy, and the Ambiguous Minor Increase in Minimal Risk
Akshay Sharma & Liza-Marie Johnson
Pages: 106-108
Published online: 24 Mar 2020
First Page PreviewforBringing Known Drugs to Pediatric Research: Safety, Efficacy, and the Ambiguous Minor Increase in Minimal Risk | Full Text | References | PDF (730.6 KB) | EPUB
  • 111 Views
  • 1 CrossRef citations
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Article Commentary
Balancing Scientific Progress With Pediatric Protections: No Direct Benefit Now, But Potential Novel Therapy in the Future
Susannah W. Lee & Jessica C. Ginsberg
Pages: 108-110
Published online: 24 Mar 2020
First Page PreviewforBalancing Scientific Progress With Pediatric Protections: No Direct Benefit Now, But Potential Novel Therapy in the Future | Full Text | References | PDF (366.9 KB) | EPUB
  • 74 Views
  • 1 CrossRef citations
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CASE REPORT

Case Report
Ethical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies?
Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond
Pages: 111-113
Published online: 24 Mar 2020
First Page PreviewforEthical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies? | Full Text | References | PDF (522.6 KB) | EPUB
  • 126 Views
  • 4 CrossRef citations
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CASE COMMENTARIES

Article Commentary
The Use of Pediatric Extrapolation to Avoid Unnecessary Pediatric Clinical Trials
Robert M. Nelson
Pages: 114-116
Published online: 24 Mar 2020
First Page PreviewforThe Use of Pediatric Extrapolation to Avoid Unnecessary Pediatric Clinical Trials | Full Text | References | PDF (520.8 KB) | EPUB
  • 143 Views
  • 2 CrossRef citations
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Article Commentary
Flexibility Required: Balancing the Interests of Children and Risk in Drug Development for Rare Pediatric Conditions
Kathryn M. Porter, Anne Stevens & Benjamin S. Wilfond
Pages: 116-118
Published online: 24 Mar 2020
First Page PreviewforFlexibility Required: Balancing the Interests of Children and Risk in Drug Development for Rare Pediatric Conditions | Full Text | References | PDF (619.2 KB) | EPUB
  • 102 Views
  • 1 CrossRef citations
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Article Commentary
When Higher Risk Does Not Equal Greater Harm: Doing the Most Good in a Limited Pediatric Study Population
Jeff Matsler & Jamila M. Young
Pages: 118-120
Published online: 24 Mar 2020
First Page PreviewforWhen Higher Risk Does Not Equal Greater Harm: Doing the Most Good in a Limited Pediatric Study Population | Full Text | References | PDF (415.1 KB) | EPUB
  • 74 Views
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