The American Journal of Bioethics, Volume 21, Issue 12 (2021)

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The American Journal of Bioethics, Volume 21, Issue 12 (2021)

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GUEST EDITORIAL

From “Ought” to “Is”: Surfacing Values in Patient and Family Advocacy in Rare Diseases
Meghan C. Halley
Pages: 1-3
Published online: 22 Nov 2021
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TARGET ARTICLE

Article
Helpful Lessons and Cautionary Tales: How Should COVID-19 Drug Development and Access Inform Approaches to Non-Pandemic Diseases?
Holly Fernandez Lynch, Arthur Caplan, Patricia Furlong & Alison Bateman-House
Pages: 4-19
Published online: 19 Oct 2021
AbstractforHelpful Lessons and Cautionary Tales: How Should COVID-19 Drug Development and Access Inform Approaches to Non-Pandemic Diseases? | Full Text | References | PDF (1.2 MB) | EPUB
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OPEN PEER COMMENTARIES

Article Commentary
Please, Don’t Fly Me to the Moon
Jason Karlawish
Pages: 20-22
Published online: 22 Nov 2021
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Article Commentary
Why Exceptional Public Investment in the Development of Vaccines Is Justified for COVID-19, But Not for Other Unmet Medical Needs
Eline M. Bunnik & Jilles Smids
Pages: 22-25
Published online: 22 Nov 2021
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Article Commentary
Avoiding Exceptionalism and Silver Bullets: Lessons from Public Health Ethics and Alzheimer’s Disease
Ignacio Mastroleo & Timothy Daly
Pages: 25-28
Published online: 22 Nov 2021
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  • 190 Views
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Article Commentary
Decisions on Innovation or Research for Devastating Disease
M. H. Andreae, L. D. Shah, V. Shepherd, M. Sheehan, H. S. Sacks & R. Rhodes
Pages: 28-31
Published online: 22 Nov 2021
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  • 116 Views
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Article Commentary
Physician Responsibility to Discuss Palliative Unproven Therapies With Out-of-Option Patients
Omar Kawam, Jon C. Tilburt & Zubin Master
Pages: 31-33
Published online: 22 Nov 2021
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  • 112 Views
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Article Commentary
“If It’s Ethical During a Pandemic…”: Lessons from COVID-19 for Post-Pandemic Biobanking
Kyle B. Brothers, Aaron J. Goldenberg & R. Jean Cadigan
Pages: 34-36
Published online: 22 Nov 2021
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Article Commentary
Another Cautionary Lesson from COVID Research
Christine Grady
Pages: 36-39
Published online: 22 Nov 2021
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  • 145 Views
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Article Commentary
Utilitarian Lessons from the COVID-19 Pandemic for Non-Pandemic Diseases
Heather Browning & Walter Veit
Pages: 39-42
Published online: 22 Nov 2021
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  • 357 Views
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Article Commentary
What Can We Learn from COVID-19 Drug Development and Access for Non-Pandemic Diseases? A Chinese Perspective
Hui Zhang, Zhiping Guo, Lijun Shen, Yongguang Yang, Zhenxiang Zhang & Yuming Wang
Pages: 42-45
Published online: 22 Nov 2021
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Open Access

TARGET ARTICLE

Article
Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Charles Dupras & Eline M. Bunnik
Pages: 46-64
Published online: 12 Jan 2021
AbstractforToward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases | Full Text | References | PDF (1.6 MB) | EPUB
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OPEN PEER COMMENTARIES

Article Commentary
Exceptionalism, Information Categories and the Relevance of Gender
Ruth Chadwick
Pages: 65-67
Published online: 22 Nov 2021
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  • 66 Views
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Article Commentary
Whose Data, Whose Risk? Omics Privacy Concerns Should be Defined by Individuals, not Researchers
Sabrina F. Derrington, Matthew A. Deardorff, Alexander R. Judkins & Xiaowu Gai
Pages: 67-70
Published online: 22 Nov 2021
First Page PreviewforWhose Data, Whose Risk? Omics Privacy Concerns Should be Defined by Individuals, not Researchers | Full Text | References | PDF (581.1 KB) | EPUB
  • 159 Views
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Article Commentary
Data Properties or Analytical Methodologies: Too Much Attention to the Former Ignores Concerns About the Latter
Mathias Brochhausen & D. Micah Hester
Pages: 70-72
Published online: 22 Nov 2021
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  • 69 Views
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Article Commentary
Scrutinizing Privacy in Multi-Omics Research: How to Provide Ethical Grounding for the Identification of Privacy-Relevant Data Properties
C. W. Safarlou, A. L. Bredenoord, R. Vermeulen & K. R. Jongsma
Pages: 73-75
Published online: 22 Nov 2021
First Page PreviewforScrutinizing Privacy in Multi-Omics Research: How to Provide Ethical Grounding for the Identification of Privacy-Relevant Data Properties | Full Text | References | PDF (940.4 KB) | EPUB
  • 454 Views
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Article Commentary
Ownership of Genetic Data: Between Universalism and Contextualism?
Henri-Corto Stoeklé & Christian Hervé
Pages: 75-77
Published online: 22 Nov 2021
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  • 221 Views
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Article Commentary
Whose Data Are They Anyway? Identification of Relatives and Genetic Exceptionalism
Robert I. Field
Pages: 78-79
Published online: 22 Nov 2021
CitationforWhose Data Are They Anyway? Identification of Relatives and Genetic Exceptionalism | Full Text | References | PDF (301.1 KB) | EPUB
  • 138 Views
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Article Commentary
Is Dupras and Bunnik’s Framework for Assessing Privacy Risks in Multi-Omic Research and Databases Still Too Exceptionalist?
Karla Alex & Eva C. Winkler
Pages: 80-82
Published online: 22 Nov 2021
First Page PreviewforIs Dupras and Bunnik’s Framework for Assessing Privacy Risks in Multi-Omic Research and Databases Still Too Exceptionalist? | Full Text | References | PDF (665.1 KB) | EPUB
  • 1232 Views
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Open Access

CORRESPONDENCE

Article
Dementia, Frailty and Triage in a Pandemic
Dominic J. C. Wilkinson
Pages: W1-W4
Published online: 22 Nov 2021
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