Toward Equitable Innovation in Health and Medicine A Framework (2023) / Chapter Skim
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1 Introduction
1 Introduction
Pages 15-30
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From page 15... ...
Rather, multiple efforts by national and international networks of researchers and policy makers, along with numerous publications from scholars of emerging science and technology, responsible innovation, bioethics, and anticipatory governance, have explored these questions through the development of frameworks and strategies and in the context of given questions and technologies. Government agencies, foundations, professional societies, and philanthropic 15
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• Exploring Tax Policy to Advance Population Health, Health Equity, and Economic Prosperity (NASEM, 2019b) Governance to address security implications of emerging technologies • Proposed Biosecurity Oversight Framework for the Future of Science (NSABB, 2023)
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In addition, the White House issued Executive Order 14020, establishing a White House Gender Policy Council (White House, 2021b) , and Executive Order 14031, aimed at reinvigorating the White House Initiative on Asian Americans, Native Hawaiians, and Pacific Islanders to advance equity, justice, and opportunity (White House, 2021c)
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. Other committees have developed similar sets of ethical principles as the basis for assessing implications associated with new biomedical technologies (see, for example, NASEM 2019a)
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. BEYOND RESEARCH ETHICS: ENHANCED ATTENTION TO EQUITY, JUSTICE, AND FAIRNESS The body of work described above and other efforts described in the text and boxes throughout this report reflect how responsible research and innovation in health and medicine is built on foundational research ethics that guide what is considered acceptable or unacceptable while requiring a focus that extends beyond individual-level concerns to encompass collective values and needs.
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Over time, bodies such as the HHS Office of Research Integrity and the NIH Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) have been established,2 requirements for researchers to receive training in responsible research conduct have been implemented, practices for conducting clinical trials at international sites have been updated, and policies governing the protection and sharing of personal health information have been incorporated (Baker et al., 2016; London, 2022)
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STUDY SCOPE AND APPROACH To build on and advance the work of the federal government, CESTI, and other stakeholders described above, the National Academies of Sciences, Engineering, and Medicine and the National Academy of Medicine convened an ad hoc committee of experts to consider how governance systems for emerging science, technology, and innovation in health and medicine can meaningfully incorporate ethical principles and facilitate the development and use of transformative technologies with a particular focus on equity. See Box 1-2 for the committee's full statement of task.
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Even with this focus on equity from among CESTI's set of foundational ethical principles, the committee's scope was unusually large. The committee's charge centers on emerging medical technologies or the direct application of related technical developments to medical products (such as the increasing integration of AI in medicine)
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policies and agencies active in the current medical technology ecosystem. Nevertheless, the concept of equity and the conceptual framework proposed in the report for aligning the development and governance of emerging science, technology, and innovation with complex ethical considerations may be applicable to other contexts and across borders.
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SELECTED THEMES AND COMMENTS BOX 1-3 FROM A PUBLIC SURVEY Genetically Modified Stem Cell Transplantation This vignette focused on the use of stem cells and genetic modification in the context of a Food and Drug Administration (FDA) –regulated clinical trial for sickle cell disease, a disease in which research has been chronically underfunded, and for which many patients struggle to access the standard of care.
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Accessibility and equity must be considered to avoid this two-tiered nightmare." Others noted that "there would have to be ways to offer the treatment at low cost, when needed" and expressed fear that "this technology will not be made available to people who might need it the most...." Other concerns included "quacks offering fake services, taking peoples' money, and decreasing the overall confidence in science and medicine"; problems during early uses that could "kill useful technology, just because people fear the term "genetically modified"; and the potential for a slippery slope that might "open the door to other genetically modified practices that create and cement stereotypes" or to nontherapeutic uses, such as genetic enhancement. Brain-Stimulating Devices This vignette highlighted consumer use of a technology for increased focus (rather than for disease treatment)
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ecosystem for emerging science, technology, and innovation. Chapter 4 provides a conceptual framework guided by five imperatives for enhancing coordinated, multiactor/ multistakeholder governance of emerging technologies and promoting alignment with ethical values, with a focus on equity.
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The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Washington, DC: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Department of Health and Human Services.
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2021a. Executive Order 13985: Advancing racial equity and support for underserved communities through the federal government.
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1964. WMA declaration of Helsinki: Ethical principles for medical research involving human subjects.
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