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Reenvisioning Our Research Agenda

Informed by the Advancing Medical Research Working Group, Phoenix Zones Initiative

Date: August 30, 2020
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The Disconnect Between Research Spending and Healthcare Needs

Up to half of all premature deaths in the United States are attributable to preventable factors.

Poor diet, lack of exercise, and tobacco use are now the top contributors to early deaths in the US, followed by alcohol use, the transmission of microorganisms, medical errors, toxic agents, firearms, motor vehicle accidents, and drug abuse.1

Often referred to as “actual causes of death,” these preventable factors are responsible for America’s top killers, including heart disease, certain forms of cancer, and other diseases.

Although the US spends more on healthcare than does any other industrialized nation, high levels of spending do not translate into meaningful improved health outcomes or increased life expectancy. In fact, over the past twenty years, the percentage of deaths linked to preventable causes hasremained about the same.2

The Prevalence of Structural Inequities

Although everyone is susceptible to illness, structural inequities account for significant disparities in disease risk across different populations. The communities that are most disproportionately affected by some of the most common life-threatening diseases, such as heart disease and cancer, include people living in Appalachia, the Mississippi Delta region, and counties with large Indigenous American populations.

Black Americans and Latinx communities are also at increased risk for health disparities. Other underserved and vulnerable communities, such as imprisoned individuals, rural and immigrant populations, people living with disabilities, and individuals without access to housing, are also at risk for major health inequities.

Many of the disparities that account for differences in disease risk are related to social, physical, and political factors, specifically:

  • access to social and economic opportunities;
  • access to safe homes, workplaces, and neighborhoods;
  • quality of schooling;
  • cleanliness and healthfulness of water, food, and air;
  • healthy social interactions and relationships with animals and other humans;
  • and the policies and political priorities that shape these social conditions.3

Differences in disease and death rates, which are rooted in structural injustices, have become even more visible during the COVID-19 pandemic. The pandemic has revealed how greatly the national public health agenda has failed neglected and vulnerable individuals and communities who are affected by systemic issues such as structural racism and classism.

The Lack of Focus on Prevention

These statistics and realities beg the question of why US government institutions, including the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the Food and Drug Administration (FDA)—all of which operate under the Department of Health and Human Services—have chosen not to prioritize public health research needs that are centered on high-value prevention strategies.

The importance of this question is amplified by 2006 estimates suggesting that a 90 percent delivery rate of primary preventive services could significantly improve health outcomes, wellbeing, and quality of life, reduce expenditures by $54 billion, and produce a net cost reduction of $1.8 billion.4

Unfortunately, US federal spending patterns do not adequately reflect growing needs in healthcare, including the need for more effective prevention strategies that also address social and political determinants of health.

For example, in 2018, the federal budget for research and development within the Department of Health and Human Services was about $34 billion, with approximately 97 percent of the budget allocated to the NIH and approximately 1 percent allocated to the CDC.5

The Emphasis on Animal Experimentation

Although data are limited, it is estimated that approximately half of the NIH research and development budget is spent on animal experimentation.

Animal experiments do not adequately predict how diseases manifest in human beings or how people will respond to various preventive or therapeutic interventions.

Additionally, investments in animal experimentation and other forms of research are commonly influenced by conflicts of interest and by an absence of transparency or accountability, which is complicated by a long-standing relationship between the pharmaceutical industry, academia, and government regulators.6

This network of influence has contributed to a shift from health research and planning that was historically focused on the public interest7 to research priorities that are now largely driven by profit margins.

The Need for Medical Research Centered on Ethics, Rights, and Justice

Within the past two decades, general interest has grown in grounding medicine, the sciences, and public health within a rights-based framework.8

Human rights concepts are closely tied to long-standing traditions in medical ethics, including attention to core moral principles such as respect for autonomy and duties to prevent harm and promote justice.

A rights-based framework has also gained increasing traction within biomedical research ethics.9 For example, the 1979 publication of the Belmont Report was prompted by public outrage about egregious human rights abuses within medical research.10

The principles articulated in the report led to informed consent requirements, mandatory assessments of the risks and benefits of research, and special protections for vulnerable populations.

Across the world, international organizations and national governments generally adhere to those same principles and applications, as evidenced in the World Medical Association’s Declaration of Helsinki and in the Nuremberg Code.11

Although, over time, there have been significant advances in human research practices, morally problematic practices continue. For example, unethical research practices may target vulnerable and marginalized populations, such as children, people living in economically or environmentally impoverished areas of the world, those living through humanitarian crises, people lacking adequate access to housing, individuals who are neurodiverse, and people living with psychiatric differences.12

Furthermore, these and other marginalized populations often do not benefit from the research they’ve been used for. Historically, research priorities have often been determined by and have benefited people in power, at the expense of vulnerable, exploited, and marginalized individuals and populations.

Today, some of the most problematic research practices involve nonhuman animals.13

Millions of animals—including fish, mice, rats, dogs, cats, nonhuman primates, and many other species—are used in research each year. After being forcibly bred and confined, most animals endure a lifetime of suffering which is full of painful protocols and procedures that cause physical and mental distress and illness—and then the majority of those animals are killed.

Unfortunately, existing laws and policies have done relatively little to address ethical or scientific problems with animal research.14 And many species of animals are excluded from legal protections.

Moral problems with the use of animals in research have become even more evident during the COVID-19 pandemic, when federally funded universities killed thousands of animals deemed “non-critical” or “extraneous” to research, even while, in response to the pandemic, other animals were bred, or captured and traded, and then subjected to grueling, invasive experiments.15

The current treatment of animals within the context of research is based on outdated science and poor ethics.

The existing research paradigm also has problematic implications for human beings, particularly those who are most marginalized because they have been devalued for sociological, economic, or political reasons. Evidence has shown that the adverse treatment of nonhuman animals is correlated with and can at times predict the adverse treatment of vulnerable people and marginalized human populations.

A Way Forward

The time has come to create a national medical and public health research agenda that is shaped by an inclusive and holistic social, economic, and cultural paradigm. It is critical that we reevaluate our current national research agenda.

Fortunately, research, education, and training in medicine, the sciences, and public health increasingly focus on social and environmental justice and the medical and veterinary humanities—constructs that extend beyond traditional medical and scientific subjects such as physiology, anatomy, and genetics.

Ethics and values guide, shape, and inform science, and science cannot stand as an endeavor separate from history, social constructs, or current realities. Science is a public good, and neither scientists nor industry have the moral or public authority to determine which research is valuable, acceptable, or permissible.

It is time to reexamine our research ethics principles, such as those outlined in the Belmont Report, and our commitment to them. It’s also time that we extend the same considerations to nonhuman animals.16

We also need to ensure that the prioritization, conduct of, and application of research efforts promote a more sustainable healthcare system and rectify the persistent and growing health disparities that result from social and environmental injustices.

1 National Research Council (NRC) and Institute of Medicine, Measuring the Risks and Causes of Premature Death: Summary of Workshops, H. G. Rhodes, rapporteur, Committee on Population, Division of Behavioral and Social Sciences and Education and Board on Health Care Services, Institute of Medicine (Washington, DC: The National Academies Press, 2015). The report is based on two workshops organized by the National Institute on Aging. Note: The NRC report describes how researchers have calculated premature deaths using different definitions. “Michael McGinnis’ initial work focused on deaths prior to age 75, but later work has focused on deaths before age 80. The World Health Organization’s Global Burden of Disease compares years of life lost against a reference age of 86, or the highest average lifespan of a country with a population over 5 million. Other studies have focused on survival to age 70.”

2 J. Michael McGinnis, “Actual Causes of Death, 1990-2010,” Presentation, Workshop on Determinants of Premature Mortality, National Research Council, Washington, DC, September 18, 2013.

3 For an overview of social and physical determinants of health, see https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health. For an overview of political determinants of health, see https://jhupbooks.press.jhu.edu/title/political-determinants-health.

5 See https://www.whitehouse.gov/wp-content/uploads/2018/02/ap_18_research-fy2019.pdf. Although the budget for research and development decreased between 2017 and 2018, the percentage of funds allocated to the National Institutes of Health increased. For the overall budget appropriation (beyond research and development) for fiscal year 2020, see https://www.appropriations.senate.gov/imo/media/doc/121619%20–%20HR1865%20Domestic%20Intl%20Asst%20Package%20Summary.pdf.

7 For more on this subject, see, for example, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690168/

8 See, for example, J. Cohen, “Human Rights in Patient Care: a Theoretical and Practical Framework,” Health and Human Rights 15, no. 2 (December 2013):7–19; L. London, “What Is a Human-Rights Based Approach to Health and Does It Matter?,” Health and Human Rights 10, no. 1 (June 2008): 65-80; and K. McKenzie, R. Mishori,and H. Ferdowsian, “Twelve Tips for Incorporating the Study of Human Rights into Medical Education,” Medical Teacher 42, no 8 (July 2019): 871-79, https://doi.org/10.1080/0142159X.2019.1623384.

9 World Medical Association, “Resolution on the Inclusion of Medical Ethics and Human Rights in the Curriculum of Medical Schools World-wide,” (October 2015), https://www.wma.net/policies-post/wma-resolution-on-the-inclusion-of-medical-ethics-and-human-rights-in-the-curriculum-of-medical-schools-world-wide/ /; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research,”Washington, DC: US Department of Health, Education, and Welfare, 1979. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

10 The Belmont Report was published by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which was established in 1974 by the US Congress. See the US Public Health Service Syphilis Study at Tuskegee from the Centers for Disease Control and Prevention, available at https://www.cdc.gov/tuskegee/timeline.htm.

11 World Medical Association, “Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects,” WMA General Assembly (2008); E. Shuster, “Fifty Years Later: The Significance of the Nuremberg Code,” New England Journal of Medicine, 337 (November 13, 1997): 1426-1440. DOI: 10.1056/NEJM199711133372006

12 See W. R. LaFleur, G. Bohme, and S. Shimazono, Dark Medicine: Rationalizing Unethical Medical Research (Bloomington, IN: Indiana University Press, 2008); See S. E. Lederer, Subjected to Science (Baltimore, MD: The Johns Hopkins University Press, 1995); See also Advisory Committee on Human Radiation Experiments,. The Human Radiation Experiments: The Final Report of the Advisory Committee on Human Radiation Experiments (New York, NY: Oxford University Press, 1996); and W. Bruno and R. J. Haar, “A Systematic Literature Review of the Ethics of Conducting Research in Humanitarian Settings, Conflict and Health 14, no. 27 (2020). DOI: https://doi.org/10.1186/s13031-020-00282-0.

13 About half of all Americans think that medical research using animals is morally unacceptable, and public opposition to animal research has steadily risen over the past decade. According to a Gallup poll, roughly one-third of Americans say they believe that animals should have the same rights as people to be free from harm and exploitation. R. Riffkin, In U.S., More Say Animals Should Have Same Rights as People (Gallup, May 18, 2015), https://news.gallup.com/poll/183275/say-animals-rights-people.aspx; and M. Strauss, Americans Are Divided Over the Use of Animals in Scientific Research (Pew Research, August 16, 2018), http://www.pewresearch.org/fact-tank/2018/08/16/americans-are-divided-over-the-use-of-animals-in-scientific-research/.

14 See H. Ferdowsian, L. Syd M. Johnson, et al, “A Belmont Report for Animals?,” Cambridge Quarterly for Healthcare Ethics 29, no. 1 (January 2020): 19-37; H. R. Ferdowsian, J. P. Gluck, “The Ethical Challenges of Animal Research: Honoring Henry Beecher’s Approach to Moral Problems,” Cambridge Quarterly of Healthcare Ethics 24, no. 4 (October 2015):391–406; and L. Houde, C. Dumas, “An Ethical Analysis of the 3Rs,” Between the Species 13, no. 7 (August 2007), https://digitalcommons.calpoly.edu/bts/vol13/iss7/.

15 See https://www.nature.com/articles/d41586-020-00964-y; and https://sentientmedia.org/mass-killing-of-lab-animals-during-pandemic-calls-into-question-necessity-and-cost-of-animal-models/; and https://www.sciencemag.org/news/2020/03/it-s-heartbreaking-labs-are-euthanizing-thousands-mice-response-coronavirus-pandemic.

16 Currently many organizations are working to address unethical human and animal experimentation through a patchwork process, targeting one experiment or one group of experiments at a time. Unfortunately, reforming or enforcing laws that still do not reconcile fundamental ethical problems with the existing research paradigm fall short. 

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