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Toward Equitable Innovation in Health and Medicine: A Framework (2023)

Chapter: 2 Taking Equity Seriously in Innovation

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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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2

Taking Equity Seriously in Innovation


This chapter explains why equity and its absence in the development of medical technology are concerns that demand new approaches to governance. It explains why equity is important now and presents the justification for aligning the medical technology system with equity. The chapter then turns to defining equity dimensions associated with the technology development system: what equity is, and what it is not. Finally, the chapter illustrates relevant considerations using the case example of concerns of the disability community, and summarizes the application of equity principles in the development and innovation of medical technology.

WHY EQUITY IS IMPORTANT NOW

The COVID-19 pandemic revealed inequities in health care and technology both in the United States and globally. The association of death rates and longer-term symptoms with race and socioeconomic status was stark; death rates among people of color, for example, were higher than those among their White counterparts (Hill and Artiga, 2022; Khullar et al., 2023; Magesh et al., 2021). Medical and public health responses to COVID-19 also exposed inequities, as illustrated by systemic ethnic and racial biases in pulse oximetry. As a result, “arterial oxygen saturation [was overestimated] among Asian, Black, and Hispanic patients compared with White patients,” which in turn led to delayed identification of treatment eligibility for people of color (Fawzy et al., 2022, p. 731) (see Box 2-1).

At the most basic level, the early public health message about washing one’s hands as a means of limiting disease risk was more illusory than real for communities lacking clean water and proper sanitation. These concerns are as real in the United States as they are in the global south because in America, “millions live without access to clean water,” and “the coronavirus has left them in further turmoil” (Shah, 2020). Even before the pandemic, residents of Flint, Michigan, experienced “lead seepage into the drinking water” and a significant Legionnaire’s Disease outbreak that caused “a massive public health crisis,” prompting President Obama’s

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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declaration of a federal state of emergency (Kennedy, 2016). For Indigenous Americans, the crisis is long-standing. In a groundbreaking empirical study, Closing the Water Access Gap in the United States, researchers reported that “Native American households are 19 times more likely than white households to lack indoor plumbing” (Dig Deep and U.S. Water Alliance, 2019, p. 12). Throughout parts of the United States, access not only to water but even to electricity cannot be presumed. In addition to the roughly 40 percent of Native American people who must haul their water, more than 25 percent report having problems

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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with or no electricity (Morales, 2019), to which families respond by turning to propane lamps and flashlights to see at night (Morales, 2019). And as with water and electricity, access to telephone service and high-speed internet is not a given. For rural American families, even hospitals may be out of reach. In a 2019 poll, “one in six Black rural Americans report[ed] recent hospital closures in their community” (NPR et al., 2019, p. 25).

All of these inequities are aggravated by race, poverty, sex/gender, and disability status. In the United States, “more women than men live in poverty,” and their economic insecurity affects not only them but also their children (Bleiweis et al., 2020, p. 1). The poorest American women are Indigenous, Black, and Latina. In fact, Latinas constitute “27.1 percent of women in poverty,” even though they represent only “18.1 percent of all women in the U.S. population.” (Bleiweis et al., 2020, p. 2). Likewise, women with disabilities experience a higher poverty rate compared with their counterparts without disabilities (22.9 percent compared to 11.4 percent).

At a macro-level, structural and infrastructural inequities in access to such necessities as water, transportation, and communications technology, compounded by the impacts of socioeconomic status, result in disparities in health and well-being and in patterns of outcomes that limit the life prospects of members of groups that bear a disproportionate burden of avoidable morbidity and mortality. Inequality in access to health care and in the equitable provision of safe and effective health services compounds these outcomes. Disparities in health outcomes operate across scales. At a less obvious level, disparities in health outcomes also reflect ways in which design bias is built into technology and health care delivery systems that put historically disadvantaged groups at further risk.

At all levels, moreover, people’s lives are shaped by social institutions and practices that intersect to shape their experiences of inequity. Social structures of race, gender, disability status, sexuality, geographic location, nationality, and socioeconomic status are not mutually exclusive; one’s lived experience of inequity typically reflects a combination of multiple factors that interact and shape patterns of penalty and privilege. The reality that people’s experiences are shaped by multiple, intersecting social structures demands an intersectional approach to advancing equity (African American Policy Forum, n.d.; Black Feminist Health Science Studies, n.d.; Homan et al., 2021).

What mechanisms should be deployed to address the complex patterns of inequity in health care and health technology innovation? What roles should the private sector play? What roles should other actors, including funders, philanthropic organizations, and civil society groups, play in the technology development life cycle? The COVID-19 pandemic rendered these questions urgent not just in responding to what has happened over the past few years, but as essential considerations in preparing for future health emergencies. These questions about basic infrastructural needs also are being asked at a time when game-changing innovations in technology—from gene editing, to regenerative medicine, to artificial intelligence and machine learning—are changing society in unprecedented ways. In this context, it is essential to develop governance capacity that encompasses an ever-accelerating frontier of emerging technological development while eliminating the ever-more-glaring discrepancies in who has the resources to benefit from these developments, who is neglected or left behind, who is discriminated against in new ways and old, and who gets a say in how the technology is developed and disseminated.

The foundational premise on which the discussion in the chapter rests is that inequalities and inequities embedded in race, gender, sexuality, disability status, geography, and other circumstances, both in the United States and globally, are ethically unacceptable, economically debilitating, and scientifically diminishing. These patterns result from intersectional, multilevel social structures and have broad secondary effects on social and

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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economic life. With respect to the focus of this report, these patterns can be mitigated by robust, reflexive, cross-sectoral governance across the technology life cycle, especially when applied at critical choice points in technology development. The application of this premise argues that any consideration of the governance of emerging technology in health care requires an understanding of the disparate harms experienced by communities that have experienced structural (often intergenerational) inequality and injustice and economic distress, and it requires in turn the development of strategies for prioritizing participation, resources, and care in ways that address and mitigate these harms. Developing more robust scientific and technological innovation that is responsive to and addresses social needs in the broadest possible manner is not only a social and ethical imperative, it is also an economic one.

While focusing on equity in innovation in health care technology, the committee stresses that equity is a concern with deeper structural and contextual roots that go beyond the question of access to an emerging technology, however important that might be. This perspective suggests that institutions, both public and private, can be both incentivized and held accountable to produce systems that magnify and amplify inclusion, belonging, and equity in ways that can better realize the social potential of emerging science, technology, and innovation. This chapter thereby provides the foundation for future chapters that detail the contours of what a governance infrastructure for emerging science, technology, and innovation that is grounded in a concern with equity might look like and identify opportunities for advancing toward that goal.

JUSTIFICATION FOR CONSIDERING EQUITY IN THE MEDICAL TECHNOLOGY SYSTEM

Acknowledging that remedying inequities in technological innovation in health care cannot address all inequities in health or society, there is a particular justification and duty within the health sphere to attend to issues of equity. In the first instance, this is a professional imperative. While no overall ethical imperative formally guides the entire U.S. health care delivery system, individual components of this complex network have established core professional principles that provide an important normative foundation. For example, reducing barriers to equitable health care is a professional imperative for physicians. The 2002 Charter on Medical Professionalism included social justice among its three core principles, described as follows: “Physicians should work actively to eliminate discrimination in health care, whether based on race, gender, socioeconomic status, ethnicity, religion, or any other social category” (ABIM Foundation et al., 2002, p. 244). In 2020, the American College of Physicians issued a Call to Action: Envisioning a Better Health Care System for All. This statement notes “the many systematic barriers to care that Americans face, including discrimination because of personal characteristics, such as race, ethnicity, religion, language, sex and sexual orientation, gender and gender identity, and country of origin” (Doherty et al., 2020, p. S3).1 Arguments for equity from the scientific community have emphasized its important trust-building function as a necessary antidote to the increased public alienation from science being witnessed today; practices that support ethical and equitable science, technology, and innovation can advance this aim (Kennedy et al., 2022; Reardon et al., 2023). Simply put, technology development without deliberate attention to equity limits the technology’s positive impact.

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1 It is worth noting that this call to action does not include people with disabilities, among whom disparities are well documented.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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A second obligation is that of governments and government agencies to create conditions that promote freedom, opportunity, and well-being for the populations they are intended to serve, without discrimination. Governments have obligations at two relevant levels: (1) the direct obligation to ensure that public institutions advance the important interests of all community members, and (2) the obligation to craft incentives that align the interests of private actors with the public interest and the common good. As described by London (2022, pp. 162–163):

Governments are responsible for allocating resources and creating the institutions and systems of rules that are necessary to effectuate three goals. The first is to ensure that the research enterprise functions to generate the knowledge needed to bridge gaps between the basic interests of community members and the ability of the basic social institutions in their community to meet those needs. The second is to ensure that the system of norms, rules, and incentives that govern the research enterprise align the personal and parochial interests of stakeholders with the promotion of this end. This includes providing credible public assurance to all stakeholders that no party has the ability to co-opt this division of social labor to exclusively advance their own parochial interests. The third is to provide credible public assurance to all stakeholders that as each seeks to pursue their personal interests in this arena—to seek profit, career advancement, or access to novel medical interventions—no party will be subject to domination, exploitation, abuse, or other forms of unfair or harmful treatment.

In subsequent chapters, the report distinguishes between governance mechanisms more applicable to government agencies and public actors (emphasizing their societal obligations) and those more applicable to private actors (emphasizing their social responsibilities, for which a range of governance mechanisms, from the creation of incentive structures to the development of regulations, may be applicable). Suffice it to say at this point that there is strong justification for both public and private actors, including expert and professional bodies, as well as those lay communities most impacted by the consequences of inequitable technology development, to be involved in the development of governance mechanisms that center equity in the medical science and technology system.

There is both encouraging precedent and a disappointing lack of attention to equity in the history of technology governance in the United States, especially as related to health care. A review of the past eight decades of U.S. science, health, and technology policy reveals that federal government efforts to promote equity and fairness in technology development have been piecemeal and unsystematic. In one of the papers commissioned for this study (see Appendix B), Michael McGovern and Keith Wailoo report that policy makers have embraced equity—usually defined as attention to justice, proportional fairness, and inclusion—as a value only in particular social contexts and instances. They cite the examples of efforts to ensure equitable access to new technologies such as kidney dialysis in the early 1970s, to incentivize industry to develop “orphan drugs” to benefit disease populations whose small numbers attracted little private-sector research and development (R&D) in the 1980s, and to restrict insurance-based discrimination against people on the basis of their genetic information in the 2000s.

These actions in the name of equity and fairness in science and technology governance have been sporadic, often contested, and uneven. Nonetheless, over time there have been identifiable trends in equity and technology governance as government policies have shifted. In the 1950s, innovation was promoted without guardrails, and inequities in the system were widespread. The 1960s and 1970s witnessed important attempts to govern innovation, with modest attention to removing system-wide inequities—for example, in the exploitation of vulnerable subjects—and to using the lever of government programs to equalize access to

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

technology products. And while the decades since the 1980s have seen rollbacks on these commitments, they have also seen specific, targeted, piecemeal efforts to advance equity in science, technology, and medicine.

A major finding of McGovern’s and Wailoo’s paper is that over the past 80 years, equity concerns have never been a primary focus of technology policy and assessment. Nor has the U.S. government taken a systematic approach to equity in technology development. Another finding is that the goal of incorporating equity into technology innovation has been contentious and difficult to sustain, and small progress in specific areas has been vulnerable to rollbacks. For most of the past eight decades, other values have guided innovation governance—namely, a commitment to laissez-faire innovation, deference to the pursuit of profit and speed in innovation, and a willingness to allow market and consumer forces to play the leading role in determining who benefits from science and technology innovation. The result of this policy approach has been persistent and sustained large-scale inequity, punctuated by specific, narrow instances (protection of research subjects, health insurance access, genetic discrimination, orphan drugs, and kidney dialysis access) in which equity ideals have surfaced and shaped laws, procedures, and policies.

This history makes attention to inequity all the more urgent and vital. The time is right. Both the National Academies, the funders of this study, and the current U.S. administration have identified equity as a crucial agenda. Multiple agencies are involved in implementing steps to advance equity in health care, but clarity is as yet lacking about what that effort entails or what steps might be taken in a coordinated and sustained fashion to achieve it. For example, funders evaluating which research ideas to support (such as the National Science Foundation) may wrongly perceive the ideal of equity as somehow at odds with objectivity and excellence, when in fact an obligation to consider equitable access and impacts on users and communities would serve to strengthen the rigor of scientific research and technology innovation—a point recognized by many scientists (especially among the younger generation as they rise to professional prominence), including those who work in the private sector.

Indeed, it is important not to underestimate the interest of some private entities in considering equity in their business models, for ethical reasons but also for any number of pragmatic and economic reasons. Barriers that prevent people from accessing, using, and benefiting from products and services can undercut profits by shrinking the pool of customers. Similarly, barriers that prevent diverse entrepreneurs from attracting investors can limit the potential financial gains of those investors.2 These observations are reflected in the Kaiser Family Foundation’s forceful “business case for racial equity,” which argues that growth, productivity, output, and revenue would all increase in a more racially equitable climate. Specifically, a 2018 report from the foundation argues that “by 2050 [the United States] stands to realize an $8 trillion gain in GDP by closing the U.S. racial equity gap” and eliminating “current disparities in health, education, incarceration, and employment opportunities” (Turner, 2018, pp. 3, 8). The authors of another analysis estimate that the economic burden of racial and ethnic health inequities in the United States amounted to about $420–450 billion in 2018 and more than twice that amount for adults without a 4-year college degree, as reflected in excess medical care expenditures, lost labor market productivity, and the value of excess premature death (LaVeist et al., 2023). Inaction has costs. Analysts have argued that inequality threatens future value creation, stating that “the breadth and depth of racial and economic inequality in America present profound systemic risks to our markets and economic stability” (Getachew and Boyea-Robinson 2023, p. 15). In this view, investors ignore inequity at their peril as the gaps in society widen and the risks of destabilization rise.

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2 https://www.morganstanley.com/ideas/venture-capital-funding-gap (accessed June 19, 2023).

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

There are indications that the business community is paying attention, as seen in the actions of multilateral economic governance organizations such as the Organisation for Economic Co-operation and Development (OECD), as well as moves toward responsible investing and innovation (Turner, 2018). Although efforts to incorporate social and governance factors into decision making are not without contention (Morgan, 2023), there is growing evidence that attending to environmental, social, and governance concerns not only does not necessarily compromise returns but actually can increase them (Henisz et al., 2019).

Finally, private actors need to attend to equity concerns if only to cater to the new generation of scientists and attract the best talent. Anecdotally, it is noted that many scientists, engineers, and physicians are interested in promoting social equity and justice and sometimes make career decisions accordingly. However, they do not necessarily have the tools to think broadly about all the dimensions entailed in attention to equity, or how those dimensions could be integrated into processes of research and development as part of institutional governance mechanisms. One aim of this report is to broaden such understandings.

In sum, the centering of equity within a governance framework for emerging science, technology, and innovation is important because equity is a fundamental moral good that helps ensure fair treatment, access, and opportunity. But equity is important not solely because it is morally just, it contributes to excellence, merit, and objectivity by broadening the demographics that must be considered, included, and heard during innovative research and development (issues also explored, for example, by Haraway [1988] and Harding [1995] from the viewpoint of feminist theory). Equity is economically beneficial in contributing to more inclusive growth, and equitable innovation will also help mitigate the erosion of social and political trust in science and technology. Most of all, equity is fundamental to any innovation that is responsive to the general welfare, a foundational principle that appears in the Preamble to the U.S. Constitution, even before “individual liberty.” (See also Schwartz [2022] on federal powers to address the general welfare.) At a time when global inequalities are increasing, science and technology have a crucial role to play in either exacerbating or ameliorating them: “The shared goal of improving human well-being that undergirds associated government funding, regulation, and oversight and professional commitments creates a responsibility not to exacerbate such inequities and to ameliorate them whenever possible” (Mathews et al., 2022a, p. 2239).

This report provides a roadmap for how this responsibility might be fulfilled. It does so while considering equity not in punitive or mandatory terms, but as an unmet need that is recognized as much by practitioners as by historically disenfranchised and underserved communities.

DEFINITION OF EQUITY: WHAT EQUITY IS, AND WHAT IT IS NOT

This report makes the case that equity is a foundational structural principle upon which a governance framework for emerging science and technology must be based. It construes equity as the overarching driver of a process for identifying and ameliorating structural and social conditions that disadvantage individuals and groups by unfairly limiting their freedom, their opportunity, or the conditions needed for well-being. Advancing the goal of equity is thus a fundamentally ameliorative effort in that it seeks to rectify legacies of neglect, exclusion, or domination. But it is also an effort to move toward a more just social order in which all individuals have access to the conditions necessary to enjoy freedom, opportunity, and well-being. This pursuit represents a significant advance over previous normative frameworks for biomedical research and practice, such as the Belmont Report, which articulate in detail the requirements of beneficence and respect for autonomy while leaving justice largely

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

disconnected from concrete issues of policy and action (London, 2022, pp. 27–84). What, however, does equity require?

The 2021 White House Executive Order Advancing Racial Equity and Support for Underserved Communities through the Federal Government includes the following definition: “The consistent and systematic fair, just, and impartial treatment of all individuals, including individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders, and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality” (White House, 2021). Individual agencies have also defined equity in various ways (see for example, the discussion of the National Institutes of Health and the Federal Trade Commission in Appendix C).

This useful working definition notwithstanding, the answer to what equity means as it becomes operationalized in a governance framework for emerging science and technology in medicine is not simple. It depends on historical context, the differential experiences of various marginalized or excluded groups, and how multiple facets of identity and experience intersect within individuals and communities. It manifests differently in different health care situations. For example, aspects of inequity can be exacerbated, magnified, or rendered explicit in public health emergencies, as was seen in the case of pulse oximeters (Box 2-1) and vaccine access during the COVID-19 pandemic. Thus, no single definition of equity is adequate to cover the multiple existing and potential manifestations of inequity in science and technology innovation in the health care arena.

Accordingly, a governance framework for medical innovation cannot be a one-size-fits-all model. It must have flexibility, reflexivity, iterativity, intersectionality, and the participation of affected communities built in as core features of its operation. These features mean the system must be adaptable to address those elements and issues most relevant to a particular type of technology, setting, and set of interested parties (flexibility); collect the data needed to understand and assess how well it is achieving its goals, and incorporate an ability to revise policies, incentives, and other mechanisms in response to lessons learned (reflexivity and interactivity); recognize the existence of multiple and overlapping histories of disadvantage (intersectionality); and strengthen the engagement of diverse innovation actors (participation). Future chapters will elaborate on the aspects of such a governance framework, offering specific recommendations. The goal of this chapter is to provide an understanding of the various facets of equity and how different kinds of inequity might manifest during technology development and innovation.

At the outset, it is important to emphasize that equity is something more or other than equality. Rather, it reflects a context-dependent combination of principles of equality, justice, fairness, and the common good. While this report focuses on equity, it is important to highlight that such a commitment overlaps considerably with the commitment to enhancing fairness, justice, and the common good in technology innovation. A discussion documented by the Committee on Emerging Science, Technology, and Innovation (CESTI) defined justice, fairness, and collective good as follows:

Justice, in the CESTI principles, refers to equity between groups faced with structural and systemic inequalities, a fair distribution of risks and benefits of technologies, and considerations about intergenerational justice, such as how decisions made now will affect future generations. Fairness refers to fair procedures for the creation of governance structures that are grounded in a view that all human beings are of equal moral worth, and may also reflect

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

predictability and consistency, as well as transparency and accountability … and collective good requires the recognition that technologies have societal-level impacts (both benefits and harms) that are not captured by an exclusive focus on individuals. (Mathews et al., 2022b, p. 44)

The concept of equality, meanwhile, includes both formal and substantive dimensions. Formal equality is a belief that, for fairness, people must be consistently or equally treated at all times. Substantive equality goes beyond the basics of recognizing the equality of all people, identifying differences among groups of people with the long-term goal of equalizing to address historical discrimination or injustice.

While there is no one-size-fits-all definition of equity, it is important to recognize that it is not just a formal rendering of equivalence, but a complex value that is related to justice and fairness and incorporates a substantive dimension of equality. In other words, equity is based on the idea that people have different circumstances, and different resources, and society should therefore direct resources and opportunities toward ensuring that all people have comparable opportunities, as a precondition for measuring or evaluating comparable outcomes. The Americans with Disabilities Act (ADA) (and the principle of social accommodation for people with disabilities), for example, is rooted fundamentally in a commitment to equity. Importantly, the ADA’s commitment to social accommodation is also deeply rooted in principles of enhancing fairness, justice, and the common good.

The images in Figure 2-1 from the Robert Wood Johnson Foundation conceptualize equity as something more or other than equality and provide a helpful lens on the operationalization of equity in the context of technology.

Each “equality” image includes individuals whose freedom is limited or whose needs are otherwise not being met. Relevant to the topic of this report, technology has been used in each “equity” image to address context-dependent barriers faced by each individual. For the purposes of this report, it is worthwhile to highlight dimensions of equity in these images that may not be immediately apparent. First, the operationalization of equity involves intentional upstream design choices on the part of a technology developer that explicitly consider the eventual downstream users and consumers. Second, while the two equity scenarios display technology’s role in promoting equity, their contexts differ with respect to the technology’s ownership or use: in the image with bicycles, equity is considered in the context of a user-specific or user-owned device, while the crosswalk image displays the use of technology to promote equity in the context of a shared, publicly used resource. Third, while the equity scenarios illustrate a situation in which there were likely costs associated with the design and production of the technologies, there are also costs associated with not considering equity. These costs are displayed as the limited freedom, unmet needs, and barriers imposed on specific individuals with different individual contexts. Fourth, the consideration of equity in each technology’s design is displayed both as a developer’s choice to meet consumer need or demand and in some context as a legal or policy requirement (e.g., the angle of the crosswalk ramp). Lastly, it is important to note that the images are not (and not intended to be) inclusive of every dimension of equity.

From the perspective of the governance of emerging science and technology, a centering of equity (as opposed simply to formal equality) is an acknowledgment of the fact that new technologies have unequal benefits and risks in ways that can exacerbate histories of injustice. Equity requires not merely equal access to emerging technologies but also fair distribution of the risks and benefits of technologies and consideration of intergenerational justice, such as how decisions made now will affect future generations. Governance structures in the United States and elsewhere are not adequately responsive to the full range of

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Image
FIGURE 2-1 Scenarios conceptualizing equity as something more or other than equality. Given the specific context shown in each scenario, each individual in the two “equity” images highlights specific actions that grant the freedom, opportunity, and well-being offered to all other individuals through intentional choices in technology design and use. The images also reflect how equity relates to overlapping goals of advancing fairness and justice and serve the common good.
SOURCE: Robert Wood Johnson Foundation, June 30, 2017. https://www.rwjf.org/en/insights/our-research/infographics/visualizing-health-equity.html.
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

implications of these features. A stronger notion of governance is required, going beyond a mere “right to equality” toward a more substantive “right to be treated as an equal” (in accordance with the famous distinction make by Ronald Dworkin [1977]). In other words, the task is not just about making emerging technologies available to multiple groups, but developing a framework that accounts for the conditions of access (including health care and socioeconomic disparities, as well as environmental disparities) by attending to historical injustice (in the form of discrimination, segregation, and dispossession). Thus, redistributive and reparative dimensions need to be incorporated in any governance framework. So, too, must a framework think about equity for future generations. It must do so formally, by incorporating conditions that allow for access to a technology not just at a moment in time but over the long term—for example, not just emergency access to a vaccine in the middle of a pandemic, but the development of mRNA vaccine hubs to ensure, including through fair licensing mechanisms, that technologies for mRNA vaccine development and distribution do not repeat the cycle of tragedy experienced during the COVID-19 pandemic whereby the haves get immediate access to the technology while the have-nots die.3 And it must do so substantively, by building mechanisms for nonrepetition of harm into research and innovation such that emerging technologies do not reproduce or exacerbate historical injustice for future generations.

Finally, a consideration of equity cannot simply be based in the abstraction of philosophical definition, but must engender actual, diverse community participation in governance decisions about emerging technologies. This is not merely about facilitating inclusion. For example, including historically disenfranchised communities among study participants without having clear terms for how they will share in the benefits of the technology being studied does not address equity concerns. Addressing inequity requires an adequate understanding of the role of power relationships in creating inequities. A governance framework that adequately centers equity requires new models of public and community engagement that are not merely inclusive but actively participatory, such that historically excluded voices are heard and integrated throughout the design and innovation process rather than merely accommodated.

To summarize what equity is and what it is not:

  • Equity is both a principle like fairness, justice, and the common good, and a process of identifying and eliminating social, structural, and infrastructural conditions that unfairly restrict the freedom, opportunities, or well-being of individuals or groups. It is a process that can be put into action and operationalized, and that should be attentive to ways in which histories of neglect, exclusion, or domination have created unfair limitations on social opportunity for some individuals and groups, including conditions that undermine their freedom and well-being. Ameliorating these conditions may require a diverse range of actions across social sectors or spheres.
  • Equity is not the same as inclusion. Merely asking for the increased inclusion of underrepresented communities in biomedical or clinical research is not sufficient to redress problems stemming from structural barriers to health. In a worst-case scenario, equating equity with inclusion via recruitment may lead to coercion to increase study enrollment, lack of full disclosure (including group risks) that might infringe on informed consent and individual and community agency, and failure to conduct a global investigation of all factors contributing to health inequities.

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3 See, for example, the World Health Organization’s mRNA vaccine technology transfer hub initiative (https://www.who.int/initiatives/the-mrna-vaccine-technology-transfer-hub; accessed June 19, 2023).

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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  • Equity is not access. Increased access to health technologies and interventions alone should not be fully equated with equity. Indeed, access is often defined and operationalized in ways that do not benefit those who are disenfranchised by health inequities within the system. For example, merely giving communities access to clinical genetic tests will not remediate inequities in genomic and precision medicine if the tests are not affordable, have limited clinical utility for specific at-risk variant groups, or result in the collection of data from communities without their having agency to direct decisions related to their data and health care.
  • Equity entails agency (the ability to act) in decision making, which in turn requires increased transparency in the informed consent process, especially concerning who will have access to communities’ data, for what purposes, and for how long, as well as the interests of data users in accessing the data. Broad consent terms that simply permit “researchers” to access data for the “greater scientific good” grant data users too much research authority to determine benefits on behalf of communities, and often without responsibility for imparting this information. Also required are stronger mechanisms for civic participation in decision making about science and technology innovation in ways that are grounded in reliable knowledge, that contribute to more robust institutional expertise, and that foster public trust in science and technology.

CASE STUDY: EQUITY IN RELATION TO DISABILITY

Histories of injustice and marginalization are critical to understanding the imperative for and goals of a governance framework for emerging science and technology in medicine. Just as no single definition of equity adequately covers all of the ways in which inequity can arise in the process of science and technology innovation, there is no single criterion for determining which individuals or groups are affected by such histories. Social structures such as race and ethnicity, gender, sexuality, disability, and socioeconomic status have clearly featured prominently in systemic inequalities and persistent disparities in U.S. society. While overarching principles of equality, justice, and fairness apply to any effort to remedy inequities, the historical context matters and can be instructive in understanding how best to recognize and address different types of inequities or the ways in which inequity plays out in different groups. In addition, it is important to recognize how forms of inequity intersect and exacerbate the challenges faced by individuals who fall within multiple marginalized groups, underscoring the need for an intersectional approach to equity considerations.

This section explores the example of disability as an illustrative case study of how histories of injustice and marginalization lead to inequities in health care and medical technology. While many of the particulars are unique to the disability context, this example highlights broadly how attitudes and practices among clinicians, researchers, lawmakers, and the public interact in complex ways to perpetuate, or in some cases help to remedy, inequities.

Defining Disability

Approximately 1 billion people worldwide have at least one disability (WHO, 2011), and about one in four U.S. adults has one or more disabilities (CDC, 2020). Disability is “a continuum, relevant to the lives of all people to different degrees and at different times in their lives,” virtually a “universal phenomen[on],” and “a common (indeed natural) feature of the human condition” (Üstün et al., 2003, p. 82). Disabilities are diverse. Some are present at birth; others arise suddenly, such as with an injury or acute health event; and still others

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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progress over time. Certain disabilities are readily visible, while others are invisible or less apparent. Nevertheless, disabilities share one common element: persons with disabilities perform basic human functions—such as seeing, hearing, speaking, communicating, moving, thinking, or experiencing emotions—in different ways or in different relationships to their social environments compared with some presumed normative person (Garland-Thompson, 2017; Kafer, 2013).

Attitudes toward Disability

Despite its near universality across the lifespan, disability has been stigmatized for millennia (Reynolds and Wieseler, 2022; Stone, 1984). After studying disability worldwide, Charlton (1998) argued that “a hierarchy of disability” exists. Regardless of country or continent, Charlton found that people disabled by mental illness or intellectual disability are most marginalized, followed by those who are deaf or hard of hearing. In contrast, people with physical disabilities and those who are blind or have low vision generally have stronger support systems and greater political, social, and economic opportunities.

Centuries ago, when societies began providing basic subsistence supports to their most vulnerable members, disability posed a problem: it could be feigned to gain these benefits (Stone, 1984). Beginning in the early 19th century, rapid innovations in diagnostic medical technologies gave physicians the tools to determine, supposedly objectively, who was a valid and thus meritorious disabled person, that is, deserving of these societal benefits (Stone, 1984). This development led to the “medical model” of disability, which “views disability as a problem of the person, directly caused by disease, trauma or other health condition, which requires medical care” (WHO, 2001, p. 20).

In the early 20th century, questions began arising about whether physicians wielded their diagnostic technologies truly objectively. After World War I, U.S. physicians who assessed veterans for service-related disability benefits “routinely applied not medical criteria but cultural and racial values” (Hickel, 2001). Without scientific evidence, physicians widely believed that Black people were more susceptible to certain illnesses than were White persons. These erroneous presumptions led physicians to delegitimize claims of service-related disability among Black veterans: “In attributing a medical condition to congenital weakness, low standards of personal hygiene, or moral degradation, rather than military service, physicians invalidated the disability claims of many black veterans” (Hickel, 2001, p. 237). These racially biased decisions fractured trust between many racial minorities with disabilities and physicians.

Attitudes toward disability started changing during World War II as previously unemployed Americans with disabilities were hired and worked on the home front alongside women, while men without disabilities fought overseas (Linton, 1998). Over the ensuing 20 to 30 years, other forces stimulated transformative social changes, including the independent living movement, increasing interest in self-help rather than professional direction, the large-scale deinstitutionalization of persons with various disabilities, and nationwide campaigns for civil rights and equal opportunity for racial and ethnic minorities and women (Linton, 1998; Shapiro, 1994). These attitudes coalesced into a “social model” of disability, which “sees the issue mainly as a socially created problem, and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment.... The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights” (WHO, 2001, p. 20).

The United States began enacting major federal legislation to protect disability civil rights—to ensure equity and prevent discrimination—50 years ago with Section 504 of the

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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1973 Rehabilitation Act, which covered federal programs. The 1990 ADA and 2008 ADA Amendments Act (ADAAA), which clarified definitions of disability, extended civil rights protections to other public and private settings and services. The 2010 Patient Protection and Affordable Care Act (ACA), Section 1557, amended Section 504 of the Rehabilitation Act and several other statutes to provide additional protections against disability discrimination in health care services.

Disparities in Health Care

Despite this half century of civil rights protections, Americans with disabilities experience disparities and inadequate services across the health care continuum, from preventive care to home- and community-based services (Iezzoni et al., 2022a). One reason for health care disparities among people with disabilities is the failure of health care settings to do as the laws require—make reasonable accommodations to ensure accessibility and effective communication. Although nearly three decades had elapsed since the ADA’s enactment, a nationwide survey of physicians caring for adult outpatients in the United States found that 35.8 percent of respondents reported knowing little or nothing about their legal responsibilities under the law (Iezzoni, 2022b). Not surprisingly, many physicians appear to fail to adequately accommodate their patients. For example, to accommodate deaf patients, 48.9 percent of physicians reported never using an in-person sign language interpreter hired by the practice, and 64.3 percent never used video remote interpreting (Iezzoni et al., 2022c). Just 22.6 percent always or usually used accessible weight scales, and only 40.3 percent always or usually used accessible examination tables or chairs for patients with significant mobility limitation (Iezzoni et al., 2021a).

Physicians and other health care professionals can have implicit and/or explicit stigmatized or ableist attitudes toward people with disabilities (VanPuymbrouck et al., 2020). In the above survey, 82.4 percent of respondents expressed the view that people with significant disabilities have worse quality of life than those without disabilities. Only 40.7 percent said they were very confident about their ability to provide equal quality care to patients with disabilities, and just 56.5 percent strongly agreed that they welcome patients with disabilities into their practices (Iezzoni et al., 2021b).

A Dearth of Data

Disability data are not routinely collected in administrative health care delivery or public health surveillance systems (Rios et al., 2016). Importantly, diagnosis codes, the primary clinical information in administrative files, provide little insight into disability. Most population-based information about health and health care disparities for Americans with disabilities therefore comes from surveys, which typically have substantial lag times and have historically employed different definitions of disability. Recognizing the need to facilitate analyses of disparities and improve data quality, Section 4302 of the ACA mandated specification of standardized questions for five key demographic attributes—ethnicity, race, sex, primary language, and disability status. For disability status, the six-item American Community Survey (ACS-6) disability questions were selected as the minimum standard. The ACS-6 has raised reservations (Hall et al., 2022; Livermore et al., 2011), and some prefer another standard set of disability questions (Mont et al., 2022; Morris et al., 2017). Nevertheless, many federal surveys now gather disability status using the ACS-6 questions.

The absence of disability data in health care delivery system and public health data sets impedes efforts to monitor or manage the health care experiences of people with disabilities.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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This gap was especially troubling during the COVID-19 pandemic (Reed et al., 2020), when it became apparent early on that nursing homes, assisted living facilities, and group homes had alarmingly high death rates. This “lack of data perpetuates the exclusion of disabled people from discussions of health equity and policies that are data driven” (Reed et al., 2020, p. e423). Even in electronic health records, where one might expect to find routine recording of basic disability information (e.g., concerning mobility disability or wheelchair use), this information appears to be absent (Agaronnik et al., 2020a,b).

Universal Design

One lever to guide equity efforts is the concept of universal design—the basic principle that as people design products, procedures, places, policies, or other services, they consider the full range of people who might use or interact with what they design (University of Washington, 2022). North Carolina architect Ronald L. Mace (1941–1998), who contracted polio at age 9 and became a wheelchair user, coined the term “universal design” (Saxon, 1998), viewing it as a mindset or orientation (Mace, 1998; Story et al., 1998). Mace and his colleagues created the Center for Universal Design at North Carolina State University. In the disability context, pursuing a universal design mindset requires that designers appreciate the full range of human abilities and how they differ within populations and across ages, personal circumstances, and environments. Mace and his collaborators categorized human abilities into eight broad groups—cognition, vision, hearing and speech, body function, arm function, hand function, and mobility. They urged designers to consider the implications of their proposed approach within each of the eight areas (Story et al., 1998).

Mace believed that putting universal principles into practice required consulting with potential end users about their needs and preferences for proposed products or whatever designers were creating. Even with the best intentions, designers cannot assume that they appreciate fully the implications of their design choices for people with various disabilities. Without involving persons with disabilities and other potential users in the design process, designers are unlikely to anticipate how users will experience, benefit from, and accept their eventual products.4

Thinking about the wide variety of factors that affect health—including social determinants of health—has evolved beyond the notions Mace pioneered several decades ago. Thus, the scope of people and perspectives that designers should consult has also expanded. Proponents of universal design recognize the impossibility of achieving designs that will equitably benefit all potential end users. Nevertheless, following the aspirational principles of universal design can help maximize the utility of eventual products across various subgroups of the population.

Intersectionality

As observed by Mitra and colleagues (2022, p. 1379), “health disparities among people with disabilities are affected by other forms of marginalization.” The authors found, for example, that adults who were members of racial or ethnic minority groups and had mobility disability were more likely than their White counterparts to report that their health was worse than a year ago; more likely to experience depression; and more likely to report diabetes,

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4 See https://www.washington.edu/doit/what-universal-design-0 (accessed June 19, 2023) for a specification of seven principles of universal design that can guide creators. For a range of factors affecting health and population perspectives that should be considered in universal design efforts, see Koh et al. (2011).

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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hypertension, or vision impairment. Likewise, compared with their White counterparts, Black and Hispanic adults with intellectual and developmental disabilities were more likely to report fair or poor physical and mental health. Gender identity and sexual orientation also intersect with health disparities among people with disabilities. For instance, LGBTQI+ versus non-LGBTQI+ people with disabilities were more likely to report worse health-related quality of life, including poor physical and mental health (Mitra et al., 2022). To be fully viable, any approaches to equity in relation to disability must therefore be intersectional, addressing disability in the context of other important social and economic categories, including race, gender, and sexuality.

Reflections

The example of disability highlights themes seen in other groups affected by inequity and the types of inequities that arise in the technology development life cycle. History matters, attitudes matter, and actions matter. The principles of universal design offer a framework for incorporating concerns about equity and access into products and processes.

In the context of a framework for better aligning emerging science, technology, and innovation with equity, the disability case example helps illustrate the need for an innovation system that involves, recognizes, and integrates the interests and needs of the diversity of people who form a society, both as innovators and anticipated users. To advance equity in health and medicine technologies requires attending to the multiple forms of inequity that can arise and taking account of the contexts in which emerging technologies will be envisioned, developed, and used. A governance framework to support equity-centered innovation must therefore be reflexive, iterative, and context-relevant.

APPLYING EQUITY PRINCIPLES IN TECHNOLOGY DEVELOPMENT AND INNOVATION

A conceptual understanding of what equity means is a prerequisite for applying equity principles in practice. To inform a framework for centering equity in the development and governance of emerging science, technology, and innovation in health and medicine, it is helpful to consider the different types of equity considerations that emerge. What are the dimensions along which equity can be promoted? What are the points of failure at which inequities might become embedded? Table 2-1 translates the broad equity concepts elucidated in the prior sections of this chapter to the more granular equity considerations that arise in the context of technology conception, development, and deployment.

TABLE 2-1 Dimensions of Equity Relevant to Innovation

Dimension of Equity Aspect of Technology Development Principles
Topical equity* Someone identifies ideas to pursue, support, or fund within a portfolio of innovations. An innovation portfolio should include topics of relevance to diverse communities, including populations that have traditionally experienced injustices.
Innovator equity* People seek funding to pursue innovations. Innovators should reflect diverse populations, including members of underserved or marginalized communities so as to tap a broad scope of imagination and creativity.
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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Dimension of Equity Aspect of Technology Development Principles
Input equity Teams are organized to guide the development and/or later-stage implementation of an innovation. The innovation development and implementation processes should include teams with diverse representation so as to make products relevant and of interest to a wide community of users, demonstrate respect for affected communities, and enhance accountability.
Evaluation equity Technologies are evaluated to meet regulatory requirements and protect the public, to test innovations against business goals, and/or to identify ways to make the technologies better. New technologies should be evaluated in diverse or representative populations to reduce errors in assessing their benefits and harms and broaden their eventual applications
Deployment equity Technologies are marketed, deployed, and adopted. Technologies should be accessible to and benefit a diverse population, including traditionally underserved or marginalized populations.
Value capture equity Technologies create value, and the capture of that value is distributed. The value created from new technologies should be captured and distributed fairly.
Contextual equity Technologies are created and deployed in a historical context. New technologies should not perpetuate past injustices and should address or correct past injustices whenever possible.
Attention equity* Technologies are continuously evaluated after deployment. Organizations and innovators should attend to the equity concerns outlined above, including actively seeking and mitigating inequities in the ways technologies are deployed.
 

* Topical equity and innovator equity are attributes of a portfolio of innovations, not a single innovation.

CHAPTER CONCLUSIONS

Clearly, equity is a vital and urgent concern in society broadly, and it is of particular relevance in the health sphere. The committee’s examination of what equity is and is not, the ways in which inequities emerge and persist in the context of health technology development and use, and the ethical imperative to remedy those inequities led to the following conclusions:

Conclusion 2-1: Equity is a foundational concept that must underlie any governance framework for emerging science and technology in health and medicine. An emphasis on incorporating equity into innovation life cycles represents a significant advance from previous normative frameworks for biomedical research and practice, which have primarily emphasized the application of beneficence, autonomy, and justice to research participants instead of focusing on equity as a system-wide imperative.

Conclusion 2-2: Equity reflects a combination of the principles of equality, justice, and fairness. It requires a fair distribution of the risks and benefits of technologies, as well as consideration of how decisions made today may affect future generations. Multiple forms of equity—including topical, innovator, input, evaluation, deployment, value capture, contextual, and attention—need to be considered in emerging science, technology, and innovation.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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Conclusion 2-3: Core features of a governance framework for emerging science, technology, and innovation in health and medicine that addresses equity include flexibility, reflexivity, iterative evaluation, and the substantive participation of affected communities.

REFERENCES

ABIM (American Board of Internal Medicine) Foundation, American College of Physicians–American Society of Internal Medicine Foundation, and European Federation of Internal Medicine. 2002. Medical professionalism in the new millennium: A physician charter. Annals of Internal Medicine 136(3):243-246.

African American Policy Forum. n.d. A primer on intersectionality. New York. https://www.aapf.org/_files/ugd/62e126_19f84b6cbf6f4660bac198ace49b9287.pdf (accessed June 19, 2023).

Agaronnik, N., C. Lindvall, A. El-Jawahri, H. Wei, and L. I. Iezzoni. 2020a. Use of natural language processing to assess frequency of functional status documentation for patients newly diagnosed with colorectal cancer. JAMA Oncology 6(10):1628-1630.

Agaronnik, N., C. Lindvall, A. El-Jawahri, H. Wei, and L. I. Iezzoni. 2020b. Challenges of developing a natural language processing method with electronic health records to identify persons with chronic mobility disability. Archives of Physical Medicine and Rehabilitation 101:1739-1746.

Aziz, S., Y. M. Arabi, W. Alhazzani, L. Evans, G. Citerio, K. Fischkoff, J. Salluh, G. Meyfroidt, F. Alshamsi, S. Oczkowski, E. Azoulay, A. Price, L. Burry, A. Dzierba, A. Benintende, J. Morgan, G. Grasselli, A. Rhodes, M. H. Møller, L. Chu, S. Schwedhelm, J. J. Lowe, D. Bin, and M. D. Christian. 2020. Managing ICU surge during the COVID-19 crisis: Rapid guidelines. Intensive Care Medicine 46(7):1303-1325.

Bickler, P. E., J. R. Feiner, and J. W. Severinghaus. 2005. Effects of skin pigmentation on pulse oximeter accuracy at low saturation. Clinical Science 102:715-719.

Black Feminist Health Science Studies. n.d. Boston, MA: Northeastern University. https://blackfeministhealth.com/ (accessed June 13, 2023).

Bleiweis, R., D. Boesch, and A. Cawthorne Gaines. 2020. Basic facts about women in poverty. Washington, DC: Center on American Progress. https://www.americanprogress.org/article/basic-facts-women-poverty/ (accessed June 19, 2023).

Braun, L. 2014. Breathing race into the machine: The surprising career of the spirometer from plantation to genetics. University of Minnesota Press.

CDC (Centers for Disease Control and Prevention). 2020. Disability and health promotion: Disability and health overview. Atlanta, GA. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html (accessed June 19, 2023).

Charlton, J. I. 1998. Nothing about us without us: Disability oppression and empowerment. Berkeley, CA: University of California Press. P. 97.

Dig Deep and U.S. Water Alliance. 2019. Closing the water access gap, in the United States: A national plan. Washington, DC. Pp. 12. https://uswateralliance.org/sites/uswateralliance.org/files/publications/Closing%20the%20Water%20Access%20Gap%20in%20the%20United%20States_DIGITAL.pdf (accessed January 9, 2023).

Doherty, R., T. G. Cooney, R. D. Mire, L. S. Engel, and J. M. Goldman. 2020. Envisioning a better U.S. health care system for all: A call to action by the American College of Physicians. Annals of Internal Medicine 172(2):S3-S6.

Dworkin, R. 1977. Taking rights seriously. Boston, MA: Harvard University Press.

Fawzy, A., T. D. Wu, K. Wang, M. L. Robinson, J. Farha, A. Bradke, S. H. Golden, Y. Xu, and B. D. Garibaldi. 2022. Racial and ethnic discrepancy in pulse oximetry and delayed identification of treatment eligibility among patients with COVID-19. JAMA Internal Medicine 182(7):730-738.

Garland-Thompson, R. 2017. Extraordinary bodies: Figuring physical disability in American culture and literature, twentieth anniversary edition. New York: Columbia University Press.

Getachew, M. and T. Boyea-Robinson. 2023. Investor blueprint for racial and economic equity: What investors can do to advance shared prosperity, combat inequality, and help bring about an equitable economy for all. Oakland, CA: PolicyLink, CapEQ, and FSG. https://corporateracialequityalliance.org/sites/default/files/PolicyLinkInvestorBlueprint20230316.pdf (accessed June 19, 2023).

Hall, J. P., N. K. Kurth, C. Ipsen, A. Myers, and K. Goddard. 2022. Comparing measures of functional difficulty with self-identified disability: Implications for health policy. Health Affairs 41(10):1433-1441.

Haraway, D. 1988. Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies 14(3):575-599.

Harding, S. 1995. “Strong objectivity”: A response to the new objectivity question. Synthese 104(3):331-349.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

Henisz, W., T. Koller, and R. Nuttall. 2019. Five ways that ESG creates value: Getting your environmental, social, and governance (ESG) proposition right links to higher value creation. Here’s why. Seattle, WA: McKinsey and Company. https://www.mckinsey.com/~/media/McKinsey/Business%20Functions/Strategy%20and%20Corporate%20Finance/Our%20Insights/Five%20ways%20that%20ESG%20creates%20value/Five-ways-that-ESG-creates-value.ashx (accessed June 19, 2023).

Hickel, K. 2001. Medicine, bureaucracy and social welfare: The politics of disability of compensation for American veterans of World War I. In The new disability history: American perspectives, edited by P. K. Longmore, and L. Umansky. New York: New York University. Pp. 236-267.

Hill, L., and S. Artiga. 2022. COVID-19 cases and deaths by race/ethnicity: Current data and changes over time. San Francisco, CA: Kaiser Family Foundation. https://www.kff.org/racial-equity-and-health-policy/issue-brief/covid-19-cases-and-deaths-by-race-ethnicity-current-data-and-changes-over-time/ (accessed January 9, 2023).

Homan, P., T. H. Brown, and B. King. 2021. Structural intersectionality as a new direction for health disparities research. Journal of Health & Social Behavior 62(3):350-370.

Howard, J. 2022. Scientists are searching for solutions after studies show pulse oximeters don’t work as well for people of color. https://edition.cnn.com/2022/07/11/health/pulse-oximeters-dark-skin-study/index.html (accessed November 9, 2022).

Iezzoni L. I., S. R. Rao, J. Ressalam, D. Bolcic-Jankovic, K. Donelan, N. D. Agaronnik, T. Lagu, and E. G. Campbell. 2021a. Use of accessible weight scales and examination tables/chairs for patients with significant mobility limitations by physicians nationwide. The Joint Commission Journal on Quality Patient Safety 47:615-627.

Iezzoni L. I., S. R. Rao, J. Ressalam, D. Bolcic-Jankovic, K. Donelan, N. D. Agaronnik, T. Lagu, and E. G. Campbell. 2021b. Physicians’ perceptions of people with disability and their health care. Health Affairs 40:297-306.

Iezzoni L. I., M. M. McKee, M. A. Meade, M. A. Morris, and E. Pendo. 2022a. Have almost 50 years of disability civil rights achieved equitable care? Health Affairs 41(10):1371-1378.

Iezzoni L. I., S. R. Rao, J. Ressalam, D. Bolcic-Jankovic, N. Agaronnik, T. Lagu, E. Pendo, and E. G. Campbell. 2022b. US physicians’ knowledge about the Americans with Disabilities Act and accommodation of patients with disability. Health Affairs 41:96-104.

Iezzoni L. I., S. R. Rao, J. Ressalam, and D. Bolcic-Jankovic. 2022c. Accommodating hearing loss in outpatient physician practices in the U.S. Disability Health Journal 16(1):101397.

Kafer, A. 2013. Feminist, queer, crip. Bloomington, IN: Indiana University Press.

Keller, M. D., B. Harrison-Smith, C. Patil, and M. S. Arefin. 2022. Skin color affects the accuracy of medical oxygen sensors. Nature 610:449-451.

Kennedy, M. 2016. Lead-laced water in Flint: A step-by-step look at the makings of a crisis. National Public Radio. https://www.npr.org/sections/thetwo-way/2016/04/20/465545378/lead-laced-water-in-flint-a-step-by-step-look-at-the-makings-of-a-crisis (accessed June 13, 2023).

Kennedy, B., A. Tyson, and C. Funk. 2022. Americans’ trust in scientists, other groups declines. Washington, DC: Pew Research Center. https://www.pewresearch.org/science/2022/02/15/americans-trust-in-scientists-other-groups-declines/ (accessed January 30, 2023).

Khullar, D., Y. Zhang, C. Zang, Z, Xu, F. Wang, M. G. Weiner, T. W. Carton, R. L. Rothman, J. P. Block, and R. Kaushal. 2023. Racial/ethnic disparities in post-acute sequelae of SARS-CoV-2 infection in New York: An EHR-based cohort study from the RECOVER program. Journal of General Internal Medicine 38:1127-1136.

Koh, H. K., J. J. Piotrowski, S. Kumanyika, and J. E. Fielding. 2011. Healthy people: A 2020 vision for the social determinants approach. Health Education & Behavior 38(6):551-557.

LaVeist, T. A., E. J. Pérez-Stable, P. Richard, A. Anderson, L. A. Isaac, R. Santiago, C. Okoh, N. Breen, T. Farhat, A. Assenov, and D. J. Gaskin. 2023. The economic burden of racial, ethnic, and educational health inequities in the US. JAMA 329(19):1682-1692.

Lewis, S. 2019. The racial bias built into photography. The New York Times, April 25. https://www.nytimes.com/2019/04/25/lens/sarah-lewis-racial-bias-photography.html (accessed April 29, 2023).

Linton, S. 1998. Claiming disability: Knowledge and identity. New York: New York University Press.

Livermore, G., D. Whalen, and D. C. Stapleton. 2011. Assessing the need for a national disability survey: Final report. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.

London, A. J. 2022. For the common good: Philosophical foundations of research ethics. Oxford, England: Oxford University Press.

Mace, R. L. 1998. Removing barriers to health care: A guide for health professionals. Raleigh, NC: UNC Center for Universal Design.

Magesh, S., D. John, W. T. Li, A. Mattingly-App, S. Jain, E. Y. Chang, and W. M. Ongkeko. 2021. Disparities in COVID-19 outcomes by race, ethnicity, and socioeconomic status: A systematic review and meta-analysis. JAMA Network Open 4(11):e2134147.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

Mathews, D. J. H., C. A. Balatbat, and V. J. Dzau. 2022a. Governance of emerging technologies in health and medicine: Creating a new framework. New England Journal of Medicine 386:2239-2242.

Mathews, D. J. H., R. Fabi, and A. C. Offodile II. 2022b. Imagining governance for emerging technologies. Issues in Science and Technology 38(3):40-46.

Mitra, M., L. Long-Bellil, I. Moura, A. Miles, and S. Kaye. 2022. Advancing health equity and reducing health disparities for people with disabilities in the United States. Health Affairs 41(10).

Mont, D., J. Madans, J. D. Weeks, and H. Ullmann. 2022. Harmonizing disability data to improve disability research and policy. Health Affairs 41(10):1442-1448.

Morales, L. 2019. For many Navajos, getting hooked up to the power grid can be life-changing. Washington, DC: NPR. https://www.npr.org/sections/health-shots/2019/05/29/726615238/for-many-navajos-getting-hooked-up-to-the-power-grid-can-be-life-changing (accessed June 12, 2023).

Moran-Thomas, A. 2020. How a popular medical device encodes racial bias. Boston Review, August 5. https://www.bostonreview.net/articles/amy-moran-thomas-pulse-oximeter/ (accessed March 13, 2023).

Morgan, D. 2023. U.S. Congress votes to block ESG investing, Biden veto expected. London, United Kingdom: Reuters. https://www.reuters.com/business/us-senate-poised-consider-blocking-biden-esg-investment-rule-2023-03-01/ (accessed June 12, 2023).

Morris, M., T. Lagu, A. Maragh-Bass, J. Liesinger, and J. M. Griffin. 2017. Development of patient-centered disability status questions to address equity in care. Joint Commission Journal on Quality and Patient Safety 43(12):642-650.

NPR (National Public Radio), Robert Wood Johnson Foundation, Harvard T.H. Chan School of Public Health. 2019. Life in rural America, Part II. https://media.npr.org/documents/2019/may/NPR-RWJF-HARVARD_Rural_Poll_Part_2.pdf (accessed June 19, 2023).

Reardon, J., S. S. Lee, S. Goering, S. M. Fullerton, M. K. Cho, A. Panofsky, and E. M. Hammonds. 2023 Trustworthiness matters: Building equitable and ethical science. Cell 186(5):894-898.

Reed, N. S., L. M. Meeks, and B. K. Swenor. 2020. Disability and COVID-19: Who counts depends on who is counted. Lancet Public Health 5(8):e423.

Reynolds, J. M., and C. Wieseler, eds. 2022. The disability bioethics reader. New York: Taylor & Francis/Routledge.

Rios, D., S. Magasi, C. Novak, and M. Harniss. 2016. Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies. American Journal of Public Health 106(12):2137-2144.

Saxon, W. 1998. Ronald L. Mace, designer of buildings accessible to all. The New York Times, June 13. https://www.nytimes.com/1998/07/13/us/ronald-l-mace-58-designer-of-buildings-accessible-to-all.html (accessed June 13, 2023).

Schwartz, D. 2022. Mr. Madison’s war on the general welfare clause. UC Davis Law Review 56:887-957. https://lawreview.law.ucdavis.edu/issues/56/2/articles/schwartz.html (accessed June 19, 2023).

Shah, K. 2020. The pandemic has exposed America’s clean water crisis. VOX, April 17. https://www.vox.com/identities/2020/4/17/21223565/coronavirus-clean-water-crisis-america (accessed June 13, 2023).

Shapiro, J. P. 1994. No pity: People with disabilities forging a new civil rights movement. New York: Three Rovers Press.

Sjoding, M. W., R. P. Dickson, T. J. Iwashyna, S. E. Gay, and T. S. Valley. 2020. Racial bias in pulse oximetry measurement. New England Journal of Medicine 383(25):2477-2478. Erratum in: New England Journal of Medicine 385(26):2496.

Stone, D. 1984. The disabled state. Philadelphia: Temple University Press.

Story, M. F., J. L. Mueller, and R. L. Mace. 1998. The universal design file: Designing for people of all ages and abilities. Raleigh, NC: North Carolina State University, The Center for Universal Design.

Tobin, M. J. 2020. Basing respiratory management of COVID-19 on physiological principles. American Journal of Respiratory and Critical Care Medicine 201(11):1319-1320.

Turner, A. 2018. Business case for racial equity. Battle Creek, MI: W. K. Kellogg Foundation. https://wkkf.issuelab.org/resource/business-case-for-racial-equity.html (accessed January 9, 2023).

University of Washington. 2022. What is universal design? Seattle, WA. https://www.washington.edu/doit/what-universal-design-0 (accessed June 13, 2023).

Üstün, T. B., S. Chatterji, N. Kostansjek, and J. Bickenbach. 2003. WHO’s ICF and functional status information in health records. Health Care Finance Review 24(3):77-88.

VanPuymbrouck, L., C. Friedman, and H. Feldner. 2020. Explicit and implicit disability attitudes of healthcare providers. Rehabilitation Psychology 65(2):101-112.

White House. 2021. Executive Order 13985: Advancing racial equity and support for underserved communities through the federal government. Washington, DC. https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-advancing-racial-equity-and-support-for-underserved-communities-through-the-federal-government/ (accessed June 19, 2023).

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×

WHO (World Health Organization). 2001. International classification of functioning, disability and health. Geneva, Switzerland.

Wong, A. I., M. Charpignon, H. Kim, C. Josef, A. A. H. de Hond, J. J. Fojas, A. Tabaie, X. Liu, E. Mireles-Cabodevila, L. Carvalho, R. Kamaleswaran, R. W. M. A. Madushani, L. Adhikari, A. L. Holder, E. W. Steyerberg, T. G. Buchman, M. E. Lough, and L. A. Celi. 2021. Analysis of discrepancies between pulse oximetry and arterial oxygen saturation measurements by race and ethnicity and association with organ dysfunction and mortality. JAMA Network Open 4(11):e2131674. Erratum in: JAMA Network Open 2022 Feb 1;5(2):e221210.

Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 41
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
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Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 43
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 44
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 45
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 46
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 47
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 48
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 49
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 50
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 51
Suggested Citation:"2 Taking Equity Seriously in Innovation." National Academies of Sciences, Engineering, and Medicine and National Academy of Medicine. 2023. Toward Equitable Innovation in Health and Medicine: A Framework. Washington, DC: The National Academies Press. doi: 10.17226/27184.
×
Page 52
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Advances in biomedical science, data science, engineering, and technology are leading to high-pace innovation with potential to transform health and medicine. These innovations simultaneously raise important ethical and social issues, including how to fairly distribute their benefits and risks. The National Academies of Sciences, Engineering, and Medicine, in collaboration with the National Academy of Medicine, established the Committee on Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine to provide leadership and engage broad communities in developing a framework for aligning the development and use of transformative technologies with ethical and equitable principles. The committees resulting report describes a governance framework for decisions throughout the innovation life cycle to advance equitable innovation and support an ecosystem that is more responsive to the needs of a broader range of individuals and is better able to recognize and address inequities as they arise.

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