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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

An Examination of Emerging Bioethical Issues in Biomedical Research Siobhan Addie, Meredith Hackmann, Kelly Choi, Theresa Wizemann, and Sarah H. Beachy, Rapporteurs Board on Health Sciences Policy Health and Medicine Division PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW   Washington, DC 20001 This activity was supported by a contract between the National Academy of Sci- ences and the National Institutes of Health (Contract No. HHSN263201800029I; Order No. 75N98019F00859). Any opinions, findings, conclusions, or recom- mendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25778 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. An examination of emerging bioethical issues in biomedical research: ­ roceedings of a workshop. Washington, DC: The National Academies Press. P https://doi.org/10.17226/25778. PREPUBLICATION COPY—Uncorrected Proofs

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process, and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

PLANNING COMMITTEE FOR A WORKSHOP ON AN EXAMINATION OF EMERGING BIOETHICAL ISSUES IN BIOMEDICAL RESEARCH1 JEFFREY KAHN (Chair), Andreas C. Dracopoulos Director; Core Faculty; Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy, Berman Institute of Bioethics, Johns Hopkins University ANITA LaFRANCE ALLEN, Vice Provost for Faculty, Henry R. Silverman Professor of Law and Professor of Philosophy, University of Pennsylvania CECIL M. LEWIS, JR., Professor, University of Oklahoma BERNARD LO, President, The Greenwall Foundation MARIA MERRITT, Associate Professor, Berman Institute of Bioethics; Associate Chair, Student Matters, Department of International Health, Johns Hopkins University CAMILLE NEBEKER, Associate Professor, University of California, San Diego, School of Medicine BENJAMIN S. WILFOND, Director, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital and Research Institute; Professor and Chief, Division of Bioethics and Palliative Care; Department of Pediatrics; University of Washington School of Medicine National Academy of Medicine Greenwall Fellow in Bioethics RACHEL FABI, Assistant Professor, Center for Bioethics and Humanities, State University of New York Upstate Medical University Board on Health Sciences Policy Staff SARAH H. BEACHY, Senior Program Officer SIOBHAN ADDIE, Program Officer MEREDITH HACKMANN, Associate Program Officer MICHAEL BERRIOS, Research Associate KELLY CHOI, Senior Program Assistant BRIDGET BOREL, Program Coordinator ANDREW M. POPE, Senior Board Director 1  he National Academies of Sciences, Engineering, and Medicine’s planning committees T are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published proceedings of a workshop rests with the workshop rap- porteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

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Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: MEGAN DOERR, Sage Bionetworks MAYA SABATELLO, Columbia University JULIE SCHUCK, The National Academies of Sciences, Engineering, and Medicine Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by DAN G. BLAZER II, Duke University School of Medicine. He was responsible for making certain that an indepen- dent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. vii PREPUBLICATION COPY—Uncorrected Proofs

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Contents ACRONYMS AND ABBREVIATIONS xiii 1 INTRODUCTION 1 Current and Historical Support for Bioethics Research, 3 Overview of Topics Highlighted During Presentations and Discussions, 6 Organization of the Workshop and Proceedings, 8 2 ETHICALLY LEVERAGING DIGITAL TECHNOLOGY FOR HEALTH 11 Developing, Testing, and Integrating Digital Technologies into Research and Clinical Care, 13 Ethical Issues for Emerging Digital Technologies, 16 Using Artificial Intelligence and Machine Learning in Research and Clinical Care, 21 Ethical Issues in Machine Learning and Deep Learning Neural Networks, 24 Discussion, 26 3 ETHICAL QUESTIONS CONCERNING NONTRADITIONAL APPROACHES FOR DATA COLLECTION AND USE 35 Citizen and Personal Science, 37 Governance of Unregulated Health Research Using Mobile Devices, 41 Discussion, 44 ix PREPUBLICATION COPY—Uncorrected Proofs

x CONTENTS 4 UNDERSTANDING THE IMPACT OF INEQUALITY ON HEALTH, DISEASE, AND WHO PARTICIPATES IN RESEARCH 51 Thinking Ethically and Structurally About Race and Racism, 52 Federal Indian Law and Bioethics, 54 Discussion, 57 5 BIOETHICS RESEARCH WORKFORCE 63 Bioethics Training: A U.S. National Perspective, 64 Bioethics Training in Latin America and the Caribbean, 68 Learning from Workforce Development in Science, Technology, Engineering, and Mathematics, 70 Discussion, 71 6 REFLECTING ON THE WORKSHOP AND LOOKING TO THE FUTURE 79 Evolving Technologies, Research Models, and Collaborations, 79 Vision and Scope of Bioethics, 83 Discussion, 85 Closing Remarks, 89 REFERENCES 91 APPENDIXES A WORKSHOP AGENDA 95 B SPEAKER BIOGRAPHICAL SKETCHES 101 C STATEMENT OF TASK 111 D REGISTERED ATTENDEES 113 PREPUBLICATION COPY—Uncorrected Proofs

Boxes and Figure BOXES 1-1 Workshop Statement of Task, 4 2-1 Existing and Emerging Bioethical Concerns Associated with Digital ­ Health Technologies, 17 6-1 Possible Research Topics and Other Areas for Further Attention Suggested by Individual Participants Throughout the Workshop, 80 FIGURE 5-1 A model for developing bioethics research objectives, 67 xi PREPUBLICATION COPY—Uncorrected Proofs

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Acronyms and Abbreviations ABPD Association of Bioethics Program Directors AI artificial intelligence CDC Centers for Disease Control and Prevention CPSC Consumer Product Safety Commission EHR electronic health record ELSI ethical, legal, and social implications FDA U.S. Food and Drug Administration FTC Federal Trade Commission HHMI Howard Hughes Medical Institute HHS U.S. Department of Health and Human Services IRB institutional review board LMIC low- and middle-income country NCATS National Center for Advancing Translational Sciences (NIH) NHGRI National Human Genome Research Institute (NIH) NIH National Institutes of Health (HHS) PAHO Pan American Health Organization xiii PREPUBLICATION COPY—Uncorrected Proofs

xiv ACRONYMS AND ABBREVIATIONS STEM science, technology, engineering, and mathematics UC University of California UMBC University of Maryland, Baltimore County PREPUBLICATION COPY—Uncorrected Proofs

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On February 26, 2020, the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine hosted a 1-day public workshop in Washington, DC, to examine current and emerging bioethical issues that might arise in the context of biomedical research and to consider research topics in bioethics that could benefit from further attention. The scope of bioethical issues in research is broad, but this workshop focused on issues related to the development and use of digital technologies, artificial intelligence, and machine learning in research and clinical practice; issues emerging as nontraditional approaches to health research become more widespread; the role of bioethics in addressing racial and structural inequalities in health; and enhancing the capacity and diversity of the bioethics workforce. This publication summarizes the presentations and discussions from the workshop.

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