Toward Equitable Innovation in Health and Medicine A Framework (2023) / Chapter Skim
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Appendix B: Technology Governance and Equity in the United States from the Cold War to COVID-19
Appendix B: Technology Governance and Equity in the United States from the Cold War to COVID-19
Pages 163-194
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From page 163... ...
I Innovation without Guardrails: The Inequities of Science as an "Endless Frontier" • As federal funding for science, technology, and medicine rose dramatically in the post World War II years, considerations of equity -- how benefits would be distributed, or how technological progress or failures might address or exacerbate existing social inequities -- were not evident in policy discussions.
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Attention to certain vulnerable groups -- research subjects, consumers, the elderly, the poor -- exposed one face of social inequity during the 1960s; at the same time, deep-seated racial and ethnic inequalities in science, technological, and medical innovation also came into focus. • The convergence of Medicare reform and civil rights showed how the federal government could use funding leverage to advance health equity, making large advances in rapid and dramatic fashion.
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• The case of access to kidney dialysis highlighted the continuing power of direct federal government funding of new entitlements to enhance social equity in access to life-saving science and technology. • Passage of the Kidney Dialysis Entitlement in Medicare represented a high point in the federal government's attempt to remedy market inequity with regard to a single life-saving technology.
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From page 166... ...
• The establishment of special vaccine courts to compensate people injured by vaccines exemplified the new ecosystem for dealing with science and technological harms in this era. Like the Orphan Drug Act and the Bayh-Dole Act, it offered an industry-friendly incen tive, in this case by reducing industry liability when vaccine technologies proved harmful.
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The convergence of Medicare reform and civil rights, for example, showed how the federal government could use funding leverage to advance health equity, making large advances in rapid and dramatic fashion. Medicare and Medicaid legislation (as well as kidney dialysis legislation)
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For most of the past eight decades, other values have guided innovation governance: namely, a commitment to laissez-faire innovation, deference to pursuit of profit and speed in innovation, and willingness to allow market and consumer forces to play leading roles in determining who benefits from science and technological innovation. The result of this policy history has been persistent and sustained large-scale inequity, punctuated by specific narrow crises and zones (protection of subjects, health insurance access, genetic discrimination, orphan drugs, kidney dialysis access, and so on)
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Here, we consider how equity has often been an implicit value associated with broader ideas about "the public good." Making equity concerns explicit is an important step toward a technology governance that will work for all. INNOVATION WITHOUT GUARDRAILS: THE INEQUITIES OF SCIENCE AS AN "ENDLESS FRONTIER" As federal funding for science, technology, and medicine rose dramatically in the postWorld War II years, considerations of equity -- how benefits would be distributed, or how 1 By "technology governance," we refer to the broad array of strategies through which the federal government has addressed itself to the benefits and harms -- actual and projected -- of technological developments.
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In other words, inequities in science, innovation, and society were a norm, and not often considered to be connected. Despite these inequities, policy makers were silent on the question of whether technology innovation should advance social equity.
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. These criticisms suggested that technological innovation needed to be regulated carefully, and watched closely, lest its effects generate new social inequities.
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. Innovation policy produced inequities in the post-World War II era not merely by ignoring the downsides of technology, but also because policy makers were inattentive to the fact that scientific innovation generated harms by itself relying upon social inequities in the generation of new knowledge.
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In a decade defined by civil rights activism and legislation, consumer consciousness, advancements for women in the academy, deinstitutionalization of the mentally ill and hopes of their integration into society, public insurance reform expanding health insurance access for the elderly and poor, burgeoning antiwar protest, and the "war on poverty," the definition of the public good was changing rapidly. Scientific and technological innovations became subject to unprecedented scrutiny.
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In many of the reforms undertaken, racial inequities remained subsidiary concerns, lagging in importance behind general questions of safety -- wholesale protections of consumers, research subjects, patients, and other disadvantaged categories of persons from the harms that scientific innovators had visited upon them (Cohen, 2003) .4 First, there was the problem of how vulnerable subjects and consumers were exploited or harmed by scientific innovation in academic and non-academic research.
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for addressing institutional harms. The convergence of Medicare reform and civil rights showed how the federal government could use funding leverage to advance health equity, making large advances in rapid and dramatic fashion.
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2015. Civil Rights and Medical Care: Historical Convergence and Continuing Legacy.
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In Beecher's assessment, the interests of science and the interests of patients were diverging. His careful documentation helped inspire efforts to reform scientific innovation, to establish guardrails around innovation, and to make science not only more ethical and just but also less inequitable in the risks borne by unwitting research subjects and patients.
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. The case of access to kidney dialysis highlighted the continuing power of direct federal government funding of new entitlements to enhance social equity in access to life-saving science and technology.
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From page 179... ...
Budgetary concerns undermined efforts to expand programs like Medicare universally, even if they also allowed for adding specific new entitlements to the program in the name of equity. Senator Ted Kennedy's failed effort to pass national health insurance and the passage of the HMO Act of 1973 highlights how the tide was shifting away from global equity-based arguments for expanding access and toward specific market incentives that advanced more limited equity ideals -- specifically, rural and urban health.
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For policy makers, the need for expertise was a driving force behind the OTA; issues of equity and the disparate social effects of technology did not figure at all in the vision for the office. As one Senate aide explained, the primary concerns hinged on the need for experts to envision consequences.
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Meanwhile, the energy crisis of the 1970s raised particular concerns about energy needs, social equity, and government policy regarding the energy sector. Following the Organization of the Petroleum Exporting Countries (OPEC)
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Writing in The Black Scholar in 1974, for example, policy scholar Lenneal Henderson called for "more black involvement in the emerging discipline of ‘technology assessment,' the attempt to analyze and make informed decisions about the implications of technological developments." From his perspective, "technology assessment models and techniques rarely include the economic and political conditions, dynamics and aspirations of black urban communities," not to mention that the impacts of transit, water, and sewage systems "on the political economy of particular and aggregate black metropolitan neighborhoods are neither known nor included in the planning and evaluation of these technologies." The answer was not merely to collect more data, but to reevaluate how "such evidence is conceptualized and related to black goals and values [and this] needs more attention from those involved in technology assessment and decisions." Henderson called for assessment to consider "the needs, goals and conditions of black metropolitan dwellers and the capabilities and limitations of these technological systems in providing for black people," as well as "a multidimensional plan for black participation in technological decision-making and technological assessment," and "black participation…in the inchoate Office of Technology Assessment" (Henderson, 1974, pp.
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Rather, this era in some ways extended a formula for governance that had begun in the Nixon years, echoing ideas that created the HMO Act of 1973. The 1980s policy makers embraced attempts to balance innovation and equity in specific sectors where the injustices had become most politically problematic: for example, the Orphan Drug Act of 1983.
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The establishment of special vaccine courts to compensate people injured by vaccines exemplified the new ecosystems for dealing with science and technological harms in this era. Like the Orphan Drug Act and Bayh-Dole, it offered an industry-friendly incentive: reducing industry liability when vaccine technologies proved harmful.
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From page 185... ...
. These policies promoted speed and innovation in the technology development, limiting government oversight that had expanded through efforts to mitigate harm and advance social equity.
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to restore fairness in a drug development system where markets created large inequities. THE GROWING CRISIS OF ACCESS, ACCOUNTABILITY, AND CALLS FOR EQUITY-BASED POLICIES In the last two decades, as economic trends have increased social inequalities, the topic of equity and technological innovation has figured ever more prominently in academic policy discussions regarding technological, scientific, and medical innovation.
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January 20, 2021. "Executive Order On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government." "Although equity in access and allocation has been a proclaimed principle of the organ trans plantation system for decades, and appears in federal regulations directing allocation policy, equity has, until recently, been absent as a stated goal or vision in the strategic plans of many organizations working in organ transplantation." -- NASEM.
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The administration called for "a comprehensive approach to advancing equity for all, including people of color and others who have been historically underserved, marginalized, and adversely affected by persistent poverty and inequality." Though it made no mention of science, medical, and technology innovation, the report drew together a number of familiar as well as new steps relevant for equity-based technology innovation: Identifying Methods to Assess Equity; Conducting an Equity Assessment in Federal Agencies; Allocating Federal Resources to Advance Fairness and Opportunity; Promoting Equitable Delivery of Government Benefits and Equitable Opportunities; Engagement with Members of Underserved Communities; and Establishing an Equitable Data Working Group (White House, 2021)
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U.S. policies have aimed at governing technology innovation with attention to specific equity concerns.
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The convergence of Medicare reform and civil rights, for example, showed how the federal government could use funding leverage to advance health equity, making large advances in rapid and dramatic fashion. Medicare and Medicaid legislation (as well as kidney dialysis legislation)
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From page 191... ...
did not go unnoticed by insightful critics. Policy scholar Lenneal Henderson's critique -- that the dominant "models and techniques rarely include the economic and political conditions, dynamics and aspirations of black urban communities" -- as well as his call for more Black involvement in the field, rings as true today as it did in 1974.
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1982. Orphan Drug Act wins approval in Congress.
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2015. Civil rights and Medicare: Historical convergence and continuing legacy.
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