Photo by Owen Beard on Unsplash Introduction Through its professional associations and healthcare organizations, the medical community has made numerous anti-racism statements in the past year, including the American Medical Association’s (“AMA’s) Organizational Strategic Plan to Embed Racial Justice and Advance Health Equity.[1] Converting these statements into practical change will take time and money. In addition to implementing anti-bias training and education on racism in clinical practice, the medical community should also advocate to enhance and enforce Title VI anti-discrimination laws. The current limitations on enforcement conflict with the medical community’s ethical duty to improve health equity and treat all patients with a high standard of care. Advocating for legislation that meets the standards of other civil rights laws to hold the healthcare industry legally responsible for discrimination should be part of medical professionals’ anti-racism work. Development of Civil Rights in Health Care Despite the lack of a federal constitutional right to health care, the United States does acknowledge the importance of health and health care through its laws and spending decisions. In 2010, the Affordable Care Act (“ACA”) created health insurance options for 20 million additional Americans and reduced the gap in healthcare access among populations.[2] Although it did not ensure a right to health care and it does not guarantee a right to health, healthcare access is an important element of a healthy life and broadening the reach of health insurance is a worthy goal. Outside of the ACA’s offer of affordable health insurance, only a few stakeholders have gained “weak” statutory rights to publicly funded health care such as incarcerated people, the elderly, disabled, and the very poor.[3] Yet, the adoption of the public insurance programs Medicaid and Medicare in 1965, along with Title VI of the 1964 Civil Rights Act (“Title VI”), did create some rights to sue for discrimination in health care, even for people who are not recipients of Medicaid and Medicare benefits. Under Title VI, private institutions that receive federal financial assistance are prohibited from discriminating on the basis of race, color, and national origin.[4] Initially, this civil rights legislation had a major effect on health care because more than 1000 segregated hospitals immediately integrated their facilities in order to comply with the legislation and participate in Medicaid and Medicare.[5] Medical professionals interested in anti-racist work would do well to learn the history of Title VI; grassroots support of civil rights laws in the 1960s encouraged huge steps forward in eliminating de jure segregation in health care.[6] Title VI Lacks Mechanisms to Combat Structural Racism Title VI has been less effective when addressing more subtle forms of discrimination. Despite being one of the broadest anti-discrimination statutes, Title VI has been referred to as a “sleeping giant” because its full power has not been used to great effect.[7] The ACA included some attempts to improve Title VI’s effectiveness (see below), but much more could be done. Like most civil rights laws, Title VI discrimination may be alleged as disparate treatment (intentional) or disparate impact. Disparate impact claims are challenging to prove and may involve arguments such as how moving a hospital from an inner-city area to a wealthier suburban location will have a disparate impact on the local Black population. Besides the evidentiary challenges involved in demonstrating disparate impact, such a claim fails unless the plaintiffs can prove that a reasonable explanation for the action, such as cost savings, is a pretext for discrimination.[8] Title VI claims are also challenging because of the limitation on plaintiffs, the limitation on the scope of defendants, and enforcement issues. In 2001, the US Supreme Court held that individual plaintiffs cannot sue under Title VI for disparate impact claims, requiring a federal agency to do so.[9] While hospitals and other entities are potential defendants under Title VI, individual medical professionals are not, even though approximately 40 percent of Medicaid and Medicare reimbursements now go to physician and outpatient care.[10] The primary enforcement mechanism for Title VI healthcare claims is forcing compliance with the law through the threat of withdrawal of federal reimbursement.[11] The threat of financial punishments may harm communities, however, when low-resourced hospitals lose funding or are forced to fund rehabilitation programs.[12] Inequities between hospitals in different locations currently cannot be addressed under Title VI. Recent attempts to improve Title VI have failed. In the ACA, legislators included several updates to Title VI that appeared to improve its potential as a tool for reducing healthcare inequities. Section 1557 of the ACA changed the definition of “federal financial assistance” programs to include Medicaid and Medicare Advantage, thus expanding the pool of possible defendants to include individual providers.[13] However, the Department of Health and Human Services issued an implementing rule that specifically did not include Medicare Part B, so as of now patients cannot bring suit against sue their doctors for Title VI discrimination.[14] Some authors argue that the ACA also repealed the Supreme Court decision that prevented individuals from bringing disparate impact claims under Title VI.[15] So far, however, courts still interpret Title VI as supporting private claims only for intentional discrimination.[16] Individuals can still bring disparate impact claims to the Office of Civil Rights (“OCR”) and the Federal government may take action on their behalf. Because of the lack of available private action, however, there is no robust group of Title VI attorneys developing these civil rights cases.[17] If the legislature wants to encourage private enforcement of Title VI discrimination cases, it could also add punitive and compensatory damages to the available remedies, as it did with Title VII employment discrimination cases,[18] thus empowering plaintiffs and their lawyers to seek private remedies for discrimination in health care. Private litigation could be used as an additional lever in strategic approaches to eliminating discriminatory practices and improving health equity.[19] In 2003, the Institute of Medicine’s Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care recommended that the federal government increase funding for the OCR to encourage investigations into violations of Title VI based on systemic discrimination in health care.[20] The committee saw such enforcement as a “last line” of defense against systemic racism in health care, and a way to find such suspected racism through proactive investigations. Unfortunately, the OCR continues to be “notoriously” underfunded, but future administrations may be encouraged to rectify that problem.[21] Permitting more individual lawsuits may improve Title VI by providing better enforcement mechanisms and broadening the scope of possible defendants. These litigation tools will never bring about a right to health but can reduce inequities in access to and treatment in the healthcare system. Health professionals can support such proposals as individuals and through their professional associations. Of course, not all stakeholders agree that the federal government should enforce greater access to health care; after several states brought suit, the US Supreme Court struck down the ACA provision that would have effectively required states to expand Medicaid eligibility.[22] In addition, many health professionals will object to individual Title VI lawsuits. Distinguishing between malpractice litigation and discrimination litigation will be important so that healthcare practitioners do not feel their livelihoods are threatened by Title VI. If improving health equity and combating racism is seen part of one’s ethical duty, then medical professionals should embrace a willingness to be held accountable personally, and even more importantly, as part of a healthcare organization. The AMA has a well-documented history of racism, and the organization has apologized and sought atonement. Part of that history includes a failure to support civil rights legislation in the 1960s and active opposition to Medicare, Medicaid, and the desegregation of hospital staff.[23] Notably, the National Medical Association, an African American medical association, worked hard to support civil rights laws and integration in the 1960s, but could not convince the “White” AMA to follow suit. As part of its anti-racism efforts, the AMA could work with legislators to craft appropriate changes to Title VI and take on the task of educating its membership. Health professionals should understand that the shortcomings of Title VI in eradicating racism in health care were due to decisions about and interpretations of the law which were influenced by the medical profession itself. Educating all the stakeholders about the connections between health, healthcare access, and strong enforcement of our civil rights statutes and regulations is one way that health professionals can actively engage in anti-racism work in the healthcare profession. [1] “The AMA’s Strategic Plan to Embed Racial Justice and Advance Health Equity,” American Medical Association, accessed June 25, 2021, https://www.ama-assn.org/about/leadership/ama-s-strategic-plan-embed-racial-justice-and-advance-health-equity. [2] “How ACA Narrowed Racial Ethnic Disparities Access to Health Care | Commonwealth Fund,” accessed March 10, 2021, https://www.commonwealthfund.org/publications/2020/jan/how-ACA-narrowed-racial-ethnic-disparities-access. [3] Aeyal Gross and Colleen Flood, The Right to Health at the Public/Private Divide : A Global Comparative Study, New York (Cambridge University Press, 2014), , 348, https://web-a-ebscohost-com.ezproxy.cul.columbia.edu/ehost/ebookviewer/ebook/ZTAyNXhuYV9fNzcwMjExX19BTg2?sid=5201c555-548f-4599-ae3d-857f6911322f@sessionmgr4007&vid=0&format=EB&lpid=lp_261&rid=0. [4] Title VI of the 1964 Civil Rights Act, § 2000d (“No person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.”) [5] Amitabh Chandra, Michael Frakes, and Anup Malani, “Challenges to Reducing Discrimination and Health Inequity Through Existing Civil Rights Laws,” Health Affairs (Project Hope) 36, no. 6 (June 1, 2017): 1041–47, 1042, https://doi.org/10.1377/hlthaff.2016.1091. [6] David Barton Smith, “The ‘Golden Rules’ for Eliminating Disparities: Title VI, Medicare, and the Implementation of the Affordable Care Act,” Health Matrix, 2015, Gale OneFile: LegalTrac. [7] Olatunde C. A. Johnson, “Lawyering That Has No Name: Title VI and the Meaning of Private Enforcement,” Stanford Law Review 66, 6 (June 2014): 1293-1331, at 1294. [8] Chandra, Frakes, and Malani, at 1043. [9] Alexander v. Sandoval, 532 U.S. 275 (2001). [10] Chandra, Frakes, and Malani, at 1043. [11] See 42 U.S.C. §2000d-1. [12] Chandra, Frakes, and Malani, at 1045. [13] 42 U.S.C. §18116. [14] Chandra, Frakes, and Malani, at 1045. [15] Sarah G. Steege, “Finding a Cure in the Courts: A Private Right of Action for Disparate Impact in Health Care,” Michigan Journal of Race & Law 16, 439 (April 2011): 439- 468. [16] See, e.g., Lemon v. Aurora Health Care North Inc., 19-CV-1384 (E.D. WI Feb. 22, 2021). [17] Johnson, “Lawyering That Has No Name,” at 1295. [18] Pub. L. No. 102-166, § 102, 105 Stat. 1071, 1072-72 (codified as amended at 42 U.S.C. § 1981a). [19] Sara Rosenbaum and Sara Schmucker, “Viewing Health Equity through a Legal Lens: Title VI of the 1964 Civil Rights Act,” Journal of Health Politics, Policy and Law 42, no. 5 (October 1, 2017): 771–88, 777, https://doi.org/10.1215/03616878-3940423. [20] Institute of Medicine (US) Committee On Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, ed. Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson (Washington (DC): National Academies Press (US), 2003), http://www.ncbi.nlm.nih.gov/books/NBK220358/. [21] Chandra, Frakes, and Malani, at 1045. [22] National Federation of Independent Business v. Sebelius, 567 U.S. 519 (2012). [23] Harriet A. Washington et al., “Segregation, Civil Rights, and Health Disparities: The Legacy of African American Physicians and Organized Medicine, 1910-1968,” Journal of the National Medical Association 101, no. 6 (June 2009): 513–27, https://doi.org/10.1016/S0027-9684(15)30936-6.
Photo by Bruna Branco on Unsplash INTRODUCTION “The author eats a pescatarian diet and donates money to animal sanctuaries advocating against factory farming. She also likes donuts.” Oversharing from a young research scientist, or necessary disclosure for full evaluation of nutrition research? Although most pharmaceutical researchers never ingest the medications they study, all nutrition researchers eat food and make dietary choices every day. Moreover, nutritional studies can quickly amplify in the media, encouraging the public to change their diets and buy new products now, with no doctor’s visit or prescription needed. Bioethicist John P.A. Ioannidis of Stanford University advocates for a registry of conflicts of interest involving the food industry and suggests that nutrition researchers disclose their activist work and dietary preferences, if relevant to their particular research.[1] These changes to the ethical standards of nutrition research are necessary in today’s fast-paced internet world. ANALYSIS Nutrition is a difficult and expensive area to research.[2] Even when diets or vitamin supplementation show positive results in animal studies, follow-up nutritional studies on humans may not yield similar outcomes due to the complicated nature of food -- researchers cannot lock up humans and feed them a bland diet plus a B-12 supplement for a year. Following numerous research subjects for multiple years may be the only way to determine the effects of a nutritional change, but this is an expensive proposition.[3] Even when such longitudinal studies are funded and carried out, environmental factors and genetics may undermine the cleanest of studies. Nutrition researchers must often rely on observational studies, which only show a correlation between nutrition intake and outcome, not cause and effect.[4] However, the weaknesses of correlation studies are often lost on the public in search of instantaneous advice on how to eat “right.” The pressures of research funding may encourage scientists to pursue areas of study that will make a big splash and go viral, leading to more funding and even book deals for some “celebrity” scientists.[5] Although researchers may act out of the desire to pursue excellent research and benefit the public, they are ethically compromised by the need for publicity. The human nutrition industry influences the public’s eating habits and interests, which then influences the researchers in search of grant money. This enmeshment requires diligence in disclosing conflicts, including the personal dietary habits of researchers. Dr. Ioannidis raises the important point that some conflicts may arise not just from potential book deals but also from more subtle associations: nonprofit organizations may benefit from social media amplification of an affiliated researcher’s work.[6] Researchers sometimes advocate for health or environmental improvements they study, perhaps hoping to increase the beneficence of their research to society. This type of advocacy, dubbed the “white hat” bias, may be at odds with the scientific ideal of non-partisanship and should be disclosed, if not completely discouraged.[7] The goal of beneficence in nutrition science would be better served by independent researchers who can conduct nutritional studies and present their data neutrally, allowing for independent replication of data before presentation as a conclusive finding to the consumer. A few unethical researchers have made terrible missteps and overstatements of research findings, leading to confusion, at best, and distrust of the science of nutrition, at worst. In Sweden during the 1970s, researchers extrapolated from a study on cells to conclude that ingesting carbohydrates did not lead to weight gain in humans.[8] In 2018, a top nutrition researcher left Cornell after 13 of his published papers were retracted due to errors including statistical manipulation on inconclusive data sets.[9] In the past 40 years, Americans have repeatedly changed their diets in response to such nutritional discoveries, adding oat bran to everything, eliminating every possible fat, avoiding all carbohydrates, and currently, eliminating gluten and eating a paleolithic diet. Entire food industries are built around each new finding: just look at the explosion of acai “antioxidant” products at any local grocery store. (Note: in follow-up studies, antioxidant supplementation has not been shown to have health benefits to humans.[10]) Fad diets have come and gone for hundreds of years and often repeat themselves; a few examples include the “banting” low-carb diet craze of 1863 or the “Bile Beans” weight loss laxative ads from the 1940s.[11] The difference today is that nutrition research can go directly from an obscure scientific journal to an internet craze gobbled up by millions of consumers overnight. Unlike falsified or exaggerated data in pharmaceutical research, exciting but inconclusive nutrition research can be implemented by consumers from the comforts of their homes and cannot get “retracted” from the public eye so easily. Internet advertising uses “clickbait” ads that are often in the form of regurgitated article headlines at the bottom of webpages known as “chumboxes.”[12] Consumers clicking on this old, fake or patently wrong nutritional news may waste time and money chasing nutritional perfection without verifying the information with a doctor. Some of the recent fad diet news has begun to reuse the old Hippocratic phrase “food is medicine,” with some even encouraging people to abandon prescribed medications in favor of novel food cures, or to experiment with untested supplements as “non-medicine.”[13] While doctors and nutritional scientists certainly see food as an important component of health, they would not recommend that consumers with serious health issues make dietary changes and ignore physician advice. If genome science now indicates that people react differently to pharmaceuticals due to their genes, isn’t it logical that people may react differently to diet plans based on their genes, age, or other factors?[14] Medical advice and understanding of nutrition will become even more important and complicated in the genomic age, and it may become crucial for the most accurate nutrition research to be delivered into the hands of the right consumers – food will no longer be a neutral agent of health equipoise, but rather serve as a maleficent force for some people. As part of an ethical review, nutrition scientists should consider how the effect of social media and the internet may turn neutral research findings maleficent. It may no longer be sufficient to only insert the standard scientific disclaimers regarding “additional research is needed.” Nutrition researchers should insert warnings that no one should adjust a diet without consulting a physician. Perhaps an independent interagency commission of the FDA and the FTC should look at all the ways nutritional information can be disseminated in the news and provide some sort of additional stamp of approval so that consumers know that advice from companies like Goop is not FDA approved, but that certain scientific research studies are. The FTC should aggressively pursue claims of deceptive advertising against untested products and require nutrition and diet advice to have clear warnings about the lack of scientific validity and the risks of dietary changes. These steps may seem paternalistic, but internet crazes and celebrity sponsorship of wrong-headed nutritional fads are more than simply annoying: they are dangerous, especially to less-educated, vulnerable consumers and people desperate to lose weight and/or regain health. Disclaimers and disclosure of conflicts can help provide some balance of justice in the study of nutrition. The above suggestions require further elaboration and government intervention, but what can nutrition scientists do immediately to stake a claim to ethical research and high standards? As I said above, I do not eat meat and I am against factory farming. Must I disclose this if I am a nutrition researcher, especially if I am evaluating diets involving meat? It seems critically relevant that I make a choice, three times a day, to avoid particular foods. Some dietary regimens derive from strongly held religious and cultural beliefs, and even when religion is not involved, some people pursue their dietary choices with religious fervor.[15] Even if I don’t believe these lifestyle choices make a difference in my research, I should still disclose them because of the danger of unconscious bias.[16] CONCLUSION In a world in which the heads of major research hospitals fail to disclose financial conflicts involving millions of dollars, this ethical requirement may seem overblown, even silly. But reflecting on these potential conflicts may help researchers understand their own unconscious biases and make readers better understand a researcher’s opinions and findings. In some cases, these disclosures may make the scientific findings even more compelling. For example, if a vegetarian completes a study showing the health benefits of meat, readers may give that study more weight. If a donut lover finds that donuts are unhealthy . . . never mind, some research should never be done. - [1] Ioannidis, John P. A. and John F. Trepanowski, “Disclosures in Nutrition Research: Why It Is Different,” JAMA 319, no. 6 (February 13, 2018): 547–48, https://doi.org/10.1001/jama.2017.18571. [2] Seres, David, “What Should We Eat to Stay Healthy? Why Experts Actually Have No Idea.,” Reuters Blogs (blog), August 11, 2014, https://www.reuters.com/article/seres-diet-idUSL2N0QH1GJ20140811. [3] Seres. [4] Seres. [5] Ioannidis, John P. A., “The Challenge of Reforming Nutritional Epidemiologic Research,” JAMA 320, no. 10 (September 11, 2018): 969–70, https://doi.org/10.1001/jama.2018.11025. [6] Ioannidis, John P. A. and John F. Trepanowski, “Disclosures in Nutrition Research: Why It Is Different,” JAMA 319, no. 6 (February 13, 2018): 547–48, https://doi.org/10.1001/jama.2017.18571. [7] Cope, Mark B and David B Allison, “White Hat Bias: Examples of Its Presence in Obesity Research and a Call for Renewed Commitment to Faithfulness in Research Reporting,” International Journal of Obesity (2005) 34, no. 1 (January 2010): 84–83, https://doi.org/10.1038/ijo.2009.239. [8] Spilde, Ingrid, “When Science Promoted Sugar as Healthy,” sciencenordic.com, accessed October 19, 2018, http://sciencenordic.com/when-science-promoted-sugar-healthy. [9] O’Connor, Anahad, “More Evidence That Nutrition Studies Don’t Always Add Up,” The New York Times, September 30, 2018, sec. Sunday Review, https://www.nytimes.com/2018/09/29/sunday-review/cornell-food-scientist-wansink-misconduct.html. [10] Seres, “What Should We Eat to Stay Healthy?” [11] “Diet Fads Go Back to Mid-1800s - News - The State Journal-Register - Springfield, IL,” accessed October 13, 2018, https://www.sj-r.com/story/lifestyle/2011/02/07/diet-fads-go-back-to/41761520007/. [12] CBC News · October 7 and 2016, “Diving into Internet ‘Chum?’ Yes, It’s as Bad as You’d Expect. | CBC Radio,” CBC, October 9, 2016, https://www.cbc.ca/radio/spark/330-reality-isn-t-real-utopia-is-creepy-1.3792237/diving-into-internet-chum-yes-it-s-as-bad-as-you-d-expect-1.3794213. [13] See, e.g., https://draxe.com/. [14] Ioannidis, “The Challenge of Reforming Nutritional Epidemiologic Research.” [15] Ioannidis and Trepanowski, “Disclosures in Nutrition Research.” [16] Gail Geller and Paul A. Watkins, “Addressing Medical Students’ Negative Bias Toward Patients with Obesity Through Ethics Education,” AMA Journal of Ethics 20, no. 10 (October 1, 2018): 948–59, https://doi.org/10.1001/amajethics.2018.948.
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