Ethics in Public Health

Ethics in Public Health Jan C. Heller, PhD Director, Ethics and Spiritual Care 10 July 2013

Introduction • Objectives… • To introduce (in broad strokes) public health ethics • Briefly compare and contrast to traditional health care ethics • For an audience (I assume) working in health care • We will do this, but will also consider a possible wider application… • Boundaries between public health and health care may be blurring with the Affordable Care Act’s (ACA) emphasis on population health • Thus, health care may… • Increasingly encroach on traditional public health domains • Adopt some of public health’s approaches and, perhaps, its ethics • With possibly ambiguous implications

Presentation Outline • Review briefly traditional public health emphases • Discuss selected theoretical issues • Competing definitions of health • Differing ways to think about the determinants of health • Population health vs. individual health • Compare and contrast public health ethics with biomedical ethics • Consider some developments in recent public health ethics • Some concluding (rhetorical) questions • Possible “public health-like” developments in the ethics associated with the ACA’s transformation of health care • Questions and discussion

Traditional Public Health Emphases • A definition… • “Public health is what we, as a society, do collectively to assure the conditions in which people can be healthy.” • Institute of Medicine, The Future of Public Health (Washington, DC: National Academy Press, 1988). • Note in this definition… • Emphasis on collective action…requires cooperation, trust, and, at times, state-sanctioned coercion • Emphasis on conditions gives public health a far-reaching agenda focusing on the underlying social conditions that affect the morbidity and mortality of populations

Traditional Public Health Emphases • Typical emphases or “features” • Promotion of health and prevention of disease and disability • Collection and use of epidemiological data and on-going population surveillance, with governmental sanction • Multidimensional understanding of the determinants of health (below) • Public health interventions focused on the complex interactions of biological, behavioral, social, and environmental factors • James F. Childress, et al., “Public Health Ethics: Mapping the Terrain,” Journal of Law, Medicine, & Ethics, 30(2002): 169-177.

Traditional Public Health Emphases • Another way to consider typical emphases of features… • Disease surveillance and vital statistics • Communicable disease reporting • Contact tracing • Health education • Public health research • Developing/recommending regulations and legislation • Nancy E. Kass, “An Ethics Framework for Public Health,” American Journal of Public Health, 91, no. 11 (Nov. 2001):1776-1782.

Selected Theoretical Issues • Disclosure: Here I am influenced by… • Norman Daniels, Just Health: Meeting Health Needs Fairly (Cambridge: Cambridge University Press, 2008) • His (ambitious!) goal: no less than an integrated theory of justice and population health • A sequel to his 1985 Just Health Care (Cambridge), which he deems to have failed precisely because he did not understand the “full dimensions of the population view” of health (p. 2)

Selected Theoretical Issues • Definitions of health…i.e., the goal of public health • Traditional (medical) definition: Absence of disease • Too narrow… • Does not account for injuries from trauma or environmental hazards (Daniels, p.36) • WHO: “…state of complete physical, mental, and social well-being…” • Too broad: Could turn all social policy into health care policy • But also, it’s too narrow: Well-being encompasses more than health alone (Daniels, p. 37)

Selected Theoretical Issues • Competing definitions of health (cont.) • Daniels’ definition: Absence of pathology • Includes absence of disease, but also disability and injury • Said positively, health is (statistically) normal (species) functioning; pathology is a “departure from normal functioning” (Daniels, p. 37) • Still narrow, but not as narrow as the traditional definition, and yet it also measureable, unlike aspects of WHO’s overly broad definition • His definition is important for how it moves our argument to the determinants of health, which are, in Daniel’s words, “socially controllable” • And if controllable, they can be brought into the domain of ethics…

Selected Theoretical Issues • Determinants of health…no one way to cut this…but note that all are at least influenced by “socially controllable” factors • CDC: • Biology and genetics (e.g., sex and age) • Individual behavior (e.g., alcohol use, injection drug use, unprotected sex, smoking) • Social environment (e.g., discrimination, income, and gender) • Physical environment (e.g., where a person lives and crowding conditions) • Health services (e.g., access to quality health care and having or not having health insurance) • http://www.cdc.gov/socialdeterminants/Definitions.html

Selected Theoretical Issues • Determinants of health… • Daniels:Note: boundaries are blurring (Daniels, pp. 42-43) • Health Care • Medical: Preventive, curative, rehabilitative, and compensatory personal medical services and devices; non-medical personal and social support services; universal health insurance • Public Health: Adequate nutrition; sanitary, safe, and unpolluted living and working conditions; exercise, rest, and lifestyles that avoid substance abuse and encourage the practice safe sex • Non-Health Care (i.e., social determinants) • Income, education, and social class (in which are race, ethnicity, gender)

Selected Theoretical Issues • Population vs. individual health • Another disclosure: We don’t have time to do justice to the complexity of this distinction • Some issues/questions • How the boundaries around populations are defined is, in part, an ethical question • E.g., who’s in and who’s out is a question of distributive justice as well as health • For public health? • For insurance and treatment under the ACA?

Selected Theoretical Issues • Addressing health of individuals vs. populations • Individuals: Use relative risk (of exposed vs. non-exposed individuals) • Asks: Why does this person have disease A? • Populations: Use incidence rate • Asks: Why does this population have disease A at a rate of X, while another has disease A at a rate of Y? • Studying characteristics of individuals will not answer this question; must study characteristics of populations • E.g., serum cholesterol levels in Finland vs. Japan showed diet is the cause of high incidence of coronary disease in Finland, but studying diets of individuals did not reveal relationship • Geoffrey Rose, “Sick Individuals and Sick Populations,” International Journal of Epidemiology 2001;30:427-432.

Selected Theoretical Issues • Similarly, with prevention… • Individuals: Screening to detect individuals with high risk of susceptibility • We can identify such individuals, but does not address causes • Potentially high benefit to individuals with high risk; little benefit to most others, plus there are relatively high costs related to screening • E.g., health problems stemming from smoking, where some are more likely to be adversely affected by smoking • Populations: Alter society’s norms of behavior to remove the cause that makes a disease common • Small benefit to most individuals but potentially large benefit to population, with smaller costs for larger benefit • E.g., change laws re: price and marketing of cigarettes, plus education • Geoffrey Rose, “Sick Individuals and Sick Populations,” International Journal of Epidemiology 2001;30:427-432.

Public Health vs. Health Care Ethics • Focused on populations • Overwhelmingly paternalistic, and at times coercive • E.g., Protecting people from their own choices… • E.g., Enforced isolation (separation of infected) and quarantine (gradations of restrictions on healthy but exposed groups) • Focused on individuals • Individual autonomy and rights emphasized; evolved in part as a critique of medical paternalism • E.g., Patient’s right to refuse treatment

Public Health vs. Health Care Ethics • Surveillance and contact tracing can infringe privacy and threaten confidentiality • Epidemiological research exempted from certain informed consent requirements (if minimal risk, data not linked to individuals, research could not otherwise be conducted) • R Bayer and AL Fairchild, “The Genesis of Public Health Ethics,” Bioethics 18, no. 6 (2004):473-492. • Limited mandatory reporting requirements, and limited required follow-up to protect third parties • Reporting rules are exceptions to normal privacy and confidentiality rules, where clinician is functioning in public health capacity

Developments in Public Health Ethics • However, influenced largely by the AIDS epidemic, public health ethics began to emphasize more self-consciously the… • Centrality of education • Protection of rights, esp. privacy of infected individuals in reporting infection • Rejection of coercive measures • Social justice in distribution of health benefits and risks • Major learning: Protection of individual liberties actually promotes the health of populations • Bayer and Fairchild, pp. 478-480.

Developments in Public Health Ethics • Criteria to test ethical limits of public health efforts • Are goals expressible as an improvement in public health (i.e., reduced morbidity and morality of populations) vs. other worthy social goals (i.e., employment, strengthening communities)? • How effective is the effort in achieving its stated goals? • Examine assumptions and the data that substantiate them (e.g., will education change behavior for, say, smoking) • The greater the burdens imposed, the stronger the evidence must be • Good data alone does not justify effort, but allows us to move to next step…

Developments in Public Health Ethics • What are the known or potential burdens or harms, which usually fall within three broad categories, imposed by the effort? • Risks to privacy and confidentiality • Risks to liberty and self-determination (autonomy) • Risks to justice, if only selected groups are targeted inappropriately • Can burdens or harms be minimized? Are there alternative approaches? • If two options give the same outcome, choose the one that most minimizes burdens or harms…

Developments in Public Health Ethics • Is the effort implemented fairly? • Unequal distribution must be justified with data… • More controversially, unequal distribution can sometimes be used to right existing inequalities, especially when those inequalities related to health outcomes • How can benefits and burdens of programs be fairly balanced? • Do the benefits of an effort justify the unavoidable and expected burdens of it? • Disagreements should be addressed through fair and transparent procedures • Kass, “An Ethics Framework for Public Health;” For a different but related approach, see LO Gostin, “Public Health Ethics: Tradition, Profession, and Values,” Acta Bioethica IX, No. 2 (2003): 177-188.

Conclusion • A possible convergence… • We have seen evidence that public health ethics have learned from contemporary bioethics • E.g., More sensitive to individual rights, adopts least coercive means, greater concern for social justice… • But, public health ethics remain essentially paternalistic • E.g., Public health continues to try to protect groups of individuals from threats to their health and from themselves for the sake of their health • And, this is at least arguably justified given that population health remains the goal

Conclusion • My concluding (rhetorical) questions are these: • As the ACA pushes health care organizations and practitioners to address the health of populations, might we see a convergence in pubic health and biomedical ethics? • Specifically, might bioethics, and the practices it justifies, once again become more paternalistic in order to achieve the desired health outcomes? • If so, we’ll have to adopt an analysis like Kass gave us above—make peace with the paternalism of our ethics, but think about ways to minimize it • Especially, since there is evidence that attending to individual rights promotes a population’s health

Ethics in Public Health