Toward Equitable Innovation in Health and Medicine A Framework (2023) / Chapter Skim
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Appendix C: Equity in Innovation within NIH and FTC: Examination of Agency Approaches and Implementation
Appendix C: Equity in Innovation within NIH and FTC: Examination of Agency Approaches and Implementation
Pages 195-218
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From page 195... ...
It is based on a literature and legal review, as well as interviews with 19 current and former leaders within these agencies. After an executive summary and a background section, the report covers each of the two agencies separately, first addressing the agency's approaches and test cases of how it is responding to an emerging technology (polygenic risk scores at NIH and artificial intelligence at FTC)
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From page 196... ...
has been among the leading ICs in implementing extensive stakeholder involvement, as well as engaging with alternative forms of knowledge and expertise. NIH has focused primarily on health disparities and workplace diversity rather than equity per se.
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From page 197... ...
technocratic framing of explicitly party politics definitional and goal confusion on government size and scope) NOTES: AI = artificial intelligence; FTC = Federal Trade Commission; IC = institutes and centers; NHGRI = National Human Genome Research Institute; NIH = National Institutes of Health.
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From page 198... ...
to "Equity Assistance Centers." DEFINITIONS The term "equity" is not well defined within the federal government. The 2021 Executive Order "On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government"9 provides one definition of "equity": Equity means the consistent and systematic fair, just, and impartial treatment of all individuals, including individuals who belong to underserved communities that have been denied such treat 6 Federal Personnel Manual Letters (FPM)
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From page 199... ...
Achieving this requires focused and ongoing societal efforts to address historical and contem porary injustices; overcome economic, social, and other obstacles to health and healthcare; and eliminate preventable health disparities. This language is drawn from the National Partnership for Action to End Health Disparities, a 2007–2011 stakeholder engagement program of the HHS Office of Minority Health that conducted widespread community conversations in order to produce the National Stakeholder Strategy for Achieving Health Equity (OMH, 2011)
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, likewise make no mention of demographics of peer reviewers, nor do they mention other social positioning as part of requirements for peer-review participants, beyond technical expertise and conflict-of-interest issues. Notably, the example categories for public representation given in the 1985 amendment do not include patient advocates, health equity activists, tribal leaders, or members of underserved or marginalized communities.
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Advisory Council Review After reviewers score all applications, advisory councils in each IC (with "public representation") then make funding recommendations based on impact scores from the scientific review.
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From page 202... ...
.14 The Working Group's report recommended efforts "across the pipeline" to address the funding gap, but in large part the 2012 report called on NIH to collect more detailed and appropriate data to allow for analysis of the factors underlying grant funding disparities. A 2019 paper by NIH staff demonstrates that one of the main factors driving NIH's racial funding disparities is research topic area: Black investigators more often propose research on community and population level issues, which have lower funding rates than "mechanistic investigations" (e.g., molecular biology)
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From page 203... ...
However, 3 out of RCDC's 280+ categories are based on study "populations tracked by gender or ethnicity": Women's Health, Minority Health, and Health Disparities. NIH reports that the databases tracking these demographics "are complex and not yet compatible with the RCDC system" (NIH RePORT, n.d.
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. In addition to intramural research programs through the National Institute of Minority Health and Health Disparities, NIH's central bureaucracy has offices of Research on Women's Health (ORWH)
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Case Study: NHGRI and Polygenic Risk Scores The National Human Genome Research Institute (NHGRI) is one of NIH's smaller ICs, with a budget less than one-tenth that of the National Cancer Institute (NCI)
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For example, NHGRI has extensive programs for engaging and supporting Native American researchers, and for addressing data sovereignty. NHGRI has had to confront significant resistance to genomics research generated by such ethical violations as the wronging of the Havasupai tribe by genetics researchers in the 1990s and early 2000s (Garrison, 2013)
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. NHGRI put in place a director on health disparities two full decades ago, and has recently established a new Office of Training, Diversity and Health Equity (TiDHE)
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FEDERAL TRADE COMMISSION As opposed to NIH, the Federal Trade Commission (FTC) is a very small agency, with approximately 1,200 employees and a budget of $376.5 million appropriated for FY2022 (less than 1 percent of NIH's total budget, and less than 15 percent of NIH's administrative operating budget)
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From page 209... ...
, Chairwoman Ramirez led the founding of FTC's Office of Technology Research and Investigation (OTech) , which "supports all facets of the FTC's consumer protection mission, including issues related to privacy, data security, connected cars, smart homes, algorithmic transparency, emerging payment methods, fraud, big data, and the Internet of Things"29.
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In addition to racial equity, FTC has long pursued enforcement actions based on advertising in Spanish, and it has increasingly done so in other languages as well. From ECI's early focus on fraud, the initiative has expanded to address a wide array of equity issues within FTC's mission.
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From page 211... ...
Some at FTC have tried to push the agency to see that equity and civil rights are important elements of both FTC's consumer protection and antitrust work. In the summer of 2020, amid widespread protests regarding racial equity in the United States, FTC Commissioner Rebecca Slaughter argued in a tweet that FTC must become antiracist and that antitrust laws can play an important role in racial equity (and should be explicitly antiracist)
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director Andrew Smith published a blog post titled "Using Artificial Intelligence and Algorithms," warning that FTC could use FCRA to police the use of data and algorithms in making decisions about consumers. This guidance also emphasized that the Equal Credit Opportunity Act and the employment provision of the Civil Rights Act give FTC authority to enforce discrimination against "protected classes." One year later, in April 2021, a lawyer in the BCP wrote a blog post titled "Aiming for Truth, Fairness, and Equity in your Company's Use of AI" (Jillson, 2021)
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From page 213... ...
. FTC has thus addressed algorithmic bias through public education and engagement (e.g., public comment on rulemaking, and in open sessions)
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Building on this work, FTC's strategic plan for 2022–2026 (released in August 2022) lists top ranking goals of "supporting equity for historically underserved communities through" both the agency's consumer protection and competition missions (FTC, 2022b)
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There are some obvious areas of racial inequity in consumer protection and antitrust where FTC has not taken action. For example, while racial inequities in credit reporting are well known, FTC has not pursued enforcement or policy in this area (Interview L; this contrasts with FTC's reference to the Equal Credit Opportunity Act as a basis for antidiscrimination authority)
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equity action plan. https://www.ftc.gov/system/files/ftc_gov/pdf/ FTCEquityActionPlanForRelease41422.pdf (accessed July 19, 2023)
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Khan Joined by Commissioner Rohit Chopra and Commissioner Rebecca Kelly Slaughter on the Withdrawal of the Statement of Enforcement Principles Regarding "Unfair Methods of Competition" Under Section 5 of the FTC Act. https://www.ftc.gov/ system/files/documents/public_statements/1591498/final_statement_of_chair_khan_joined_by_rc_and_rks_on_ section_5_0.pdf (accessed July 19, 2023)
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From page 218... ...
2011. National stakeholder strategy for achieving health equity.
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