The potential benefits of disease prevention and health promotion efforts include a healthier society and reduced fiscal expenditure and increased productivity and efficiency [
46]. Individual members of society can also benefit. There is a need to balance health as a value with values of privacy and autonomy (for example, in relation to immunization policies). Several authors have considered the circumstances under which personal autonomy can be abridged to promote the health of the whole community and the moral justification for coercive public health interventions and lifestyle strategies [
47,
48]. As noted by Lappe [
1], "
From an ethical perspective, the extent to which [compulsive public health] interventions are justified depends on... the anticipated extent and kind of public benefit; the degree to which individual rights are restricted to achieve that benefit; and the ultimate distribution of both benefits and harms attendant to participation."
In general, there is a need for voluntariness in health education, health promotion, and public health communication programs. The risks and potential harms of public health interventions include ineffective, counterproductive, or harmful interventions; unanticipated consequences; and labeling or stigmatizing of individuals [
49]. Undue stress upon the individual's role in the cause of illness could lead to a "blame the victim" mentality [
48]. The dilemma is how to advise people that they might be at risk for potentially serious health complications without labeling them, contributing to their anxiety, or adversely affecting their well-being [
49].
Ethical considerations for prevention trials and community interventions include an assessment of risks and benefits, the need for voluntary participation and avoidance of excessive incentives, and justice-related issues. There is a need for sensitivity to ethnic and cultural habits and norms and to avoid "top-down" planning, in which the health concerns and self-defined information needs of the target population are ignored in favor of professional preoccupations and concerns. Such concerns have been successfully addressed through community-based participatory research, which is a collaborative, empowering process that helps develop competencies in communities [
50]. Ethical issues in health communication include the need to avoid conflicts of interest, to present facts about health hazards or health opportunities in a truthful, balanced, and timely fashion, and to avoid distorting the facts or concealing ambiguities in the scientific evidence [
49].
Ethical issues in screening
Ethical issues also arise in public health screening programs [
51]. Screening is the presumptive identification of an unrecognized disease or condition by the use of tests, examinations, or other procedures that can help identify a disease or disease precursor in apparently well people. People with positive or suspicious findings then undergo further evaluation or treatment. The ultimate objective of screening is to reduce the morbidity or mortality from a disease among the people screened.
Several frameworks for analyzing and addressing ethical and policy issues in public health screening programs have been proposed. In 1968, Wilson and Jungner [
52] proposed 10 principles for mass screening programs. These principles are often cited in planning and evaluating population screening programs; they relate to the adequacy of the scientific evidence, the balance of risks and benefits, the availability of an effective treatment, the acceptability of the screening test to the population, and the costs and resources required [
51]. Refinements have been proposed over the years, with further specification of the principles of screening [
53‐
56]. Criteria for the effectiveness of clinical preventive services have been developed by the Canadian Task Force on the Periodic Health Examination [
57] and by the U.S. Preventive Services Task Force [
58]. Screening raises a number of important ethical issues around informed consent, privacy and confidentiality, risks and potential benefits, and the allocation of finite public resources for screening.
The principle of respect for individuals' freedom supports the right of participants to informed consent prior to screening [
51]. Provisions for informed consent ensure that people undergoing screening make free choices, and encourage providers to act responsibly in their interactions with patients. Subjects should be given information about the procedure, the meaning of a positive or negative test result, and any appreciable risks or potential harms and benefits before undergoing screening [
51]. To give informed consent for screening, participants need to understand the risk of a false-positive test result and the procedures that may follow it [
59].
Principles of informed consent for screening have some features in common with emerging models of informed decision making and shared decision making for screening and other health care services [
60]. Such models emphasize that people should be provided with balanced and relevant information so they can make informed decisions about screening options [
61‐
63]. As discussed by Briss et al. [
62], informed decision making occurs when the participant understands the nature of the disease or condition being addressed; understands the clinical service and its likely consequences, including risks, limitations, benefits, alternatives, and uncertainties; has considered his or her preferences as appropriate; has participated in decision making at a personally desirable level; and either makes a decision consistent with his or her preferences and values or elects to defer a decision to a later time.
Although public health screening is generally voluntary, some examples of mandatory screening can be cited. For example, most states require that infants be screened for certain genetic disorders, such as phenylketonuria (PKU). Infants are subject to the screening program unless their parents refuse for religious or philosophical reasons [
51]. Public health officials may justify mandatory newborn screening programs, even without parental consent, under utilitarian principles authorizing state governments to protect children [
51].
The potential benefits of screening include the early detection of disease and the prevention of serious illness or disability and improved survival. The societal benefits of screening include substantial reductions in morbidity and mortality [
58]. Screening is undertaken for conditions that are important public health problems and those for which early detection and treatment are effective. If early treatment is not effective, then early detection alone merely extends the length of time the disease is known to exist, without extending survival [
59]. Public health policy makers rely on information from randomized controlled trials and other sources to evaluate the effectiveness, potential benefits, and risks or potential harms of screening.
The potential harms and risks associated with screening also have to be taken into account, especially since screening programs are aimed at large numbers of apparently healthy people. Minor complications or infrequent adverse effects that would be acceptable in the treatment of a severe illness take on greater importance when screening asymptomatic people and require careful evaluation to determine whether the potential benefits exceed risks [
58]. There may be risks associated with false-positive or false-negative test results. The potential harms of screening may also include "labeling" effects and the psychologic impact of test results or a diagnosis. If prognosis is not improved by presymptomatic detection, screening for a disease can cause anxiety without providing any benefit [
56]. Medical information collected as part of screening should be rigorously safeguarded to protect patient privacy and confidentiality and to minimize risks or potential harms such as stigma or discrimination. Only a few specific exceptions exist, such as mandatory partner notification laws for HIV infection that physicians are legally required to follow in some states [
64].