Children: III. Healthcare and Research Issues
III. HEALTHCARE AND RESEARCH ISSUES
Access to good parenting, food, housing, and sanitation is the primary method for enhancing children's well-being and opportunities. The consensus that children also should have basic healthcare and social services grew throughout the twentieth century. Initially, advocates for better health and social care for impoverished, neglected, abused, and exploited children included those active in the women's rights movement, the newly recognized specialty of pediatrics, and the visiting home-health nursing programs. As the century progressed, lawyers and social scientists joined the reform movement, attacking the long-dominant views that children are the property of their parents or guardians and that the state has no authority to intervene even if children are abused or neglected.
Children gained rights to certain medical services and the right to be protected from abuse, poverty, neglect, and exploitation; adolescents gained liberties such as the right to consent to some kinds of treatments or services without parental approval or notification (Holder, 1985, 1989). Scientists helped transform children's programs through studies of children's growth, development, needs, experiences, illnesses, and perspectives, showing the importance of candor and respect for children's views. A distinctive feature of advocacy for improved health and social care for children can be summarized as follows: Others make most decisions for minors in terms of their personal care and the allocation of funds for children's programs.
Moral disputes about healthcare for children will be discussed under four headings: Who should make decisions for children? How should those decisions be made? When should children be enrolled as research subjects? How much of society's healthcare funds should be allocated to children's programs?
Basic Moral Values
Different solutions to these questions are evaluated herein in terms of basic moral values: Solutions are judged to be superior when they fairly promote children's well-being and opportunities to flourish and help children become empowered, self-fulfilled persons who can develop their potential. The United Nations Declaration of the Rights of the Child (United Nations General Assembly) endorsed these basic values, underscoring their wide acceptance.
These values received international support because most adults want to help children and recognize their responsibility to assist them. They also promote stability by helping address inequalities of the "natural lottery" (inequalities caused by nature, such as health status) and the "social lottery" (inequalities caused by social factors, such as wealth, schooling, and family). Children are not responsible for those inequalities, yet they affect whether children will thrive and flourish. Adequate healthcare and social services enhance children's well-being and opportunities by treating diseases, in some cases returning children from the brink of death or permanent disability to full and healthy lives. These services also restore or maintain compromised function, avert or ameliorate suffering, and prevent disease or disabilities through interventions or counseling. Basic prevention, diagnosis, treatment, rehabilitation, and social services not only make children's lives better, they provide society with healthier and more productive citizens.
The focus of this discussion is primarily on preadolescent children, who clearly are not responsible for their quality of life or its inequities and who need help in making prudent decisions.
Who Has the Authority to Decide for Children?
Adults are presumed competent and minors incompetent to consent to medical treatment or participation in research. Minors generally lack the capacity, maturity, foresight, and experience to make important choices for themselves and cannot determine which choices will promote their wellbeing or opportunities. In general, the younger and less experienced the child, the greater the presumption that he or she cannot participate competently in healthcare decisions but the trend is to include children as young as five years old. Many older children, especially adolescents, clearly overturn this presumption that they cannot participate.
SHARED DECISION MAKING. Ideally, important healthcare choices should represent a consensus among parents, doctors, nurses, and the child if he or she is mature enough and willing to participate. Together they find the option best suited to the child and the family (U.S. President's Commission, 1982). In the final analysis, however, parents or guardians generally have legal and moral authority to make medical decisions for minor children.
PARENTS' OR GUARDIANS' AUTHORITY. Parents and guardians have the authority to make healthcare decisions for the same general reasons they can select their children's religion and schooling. The philosophers Allen Buchanan and Dan Brock (1989) discuss several reasons for this policy. First, parents and guardians are generally most knowledgeable about and interested in their children and so are most likely to do the best job for them. Second, the family usually bears the consequences of the choices that are made for a child. Some choices and their consequences suit certain families better than others. Third, children learn values and standards within their families, and different values and standards may lead to different healthcare choices. Within limits it is important to honor the standards and values of families because it is primarily in the family structure that people in society learn values. Fourth, families need intimacy with minimal state intrusion. Thus, unless a child is placed at risk, there is reason to tolerate the choices that families make for their children and give families wide discretion in selecting children's healthcare.
Parents or guardians maintain this authority as long as they promote the well-being and opportunities of those under their care and prevent, remove, or minimize harms to their minor children. Their authority can be contested, however (Rodham; Holder, 1985; Kopelman, 1997). Moral disputes over when to challenge parental authority to make healthcare decisions often center on practical and theoretical issues about when harms or dangers to children warrant interfering with parental authority and what restrictions on parental choice are needed to secure a child's well-being.
Parents who abuse, neglect, or exploit their children may lose custody of them temporarily or permanently. Physical, sexual, or emotional abuse inflicted on children constitutes grounds for the loss of parental authority. In addition, parents who make imprudent or neglectful decisions may lose custody temporarily or permanently. For example, parents may lose custody temporarily if they endanger a child by declining standard antibiotic care to treat the child's bacterial meningitis, preferring the use of herbal teas. Parents also may lose custody temporarily if they endanger a child by acting on certain beliefs. For example, Christian Scientists object to surgery and Jehovah's Witnesses object to blood transfusions, yet courts can order either intervention if a child is endangered (Holder, 1985; Rodham; Kopelman, 1997). Because children cannot protect themselves, healthcare professionals, teachers, neighbors, and other members of the community have a duty to report suspected child abuse, neglect, or exploitation to state agencies for investigation. When parental acts or omissions pose an imminent danger to children, doctors, nurses, hospital administrators, and social workers have a moral and legal duty to seek a court order for proper care (Holder, 1985; Kopelman, 1997).
CHILDREN'S ASSENT AND CAPACITY Decisions about when to consult or inform children about their healthcare options usually are important for older children and those with serious illnesses in cases in which distinct choices result in different outcomes. Some, but not all, children want to understand the decisions about their healthcare and often have an opinion about their care (Buchanan and Brock; Holmes; Matthews). Moreover, adolescents do not always need parental consent to obtain services such as treatment for substance abuse, abortion, and contraception (Holder, 1985, 1989).
This trend toward informing or consulting children stems from several sources. First, it results from research about what children of different ages and stages of development can understand. Social-science research has found that many children understand a great deal about their diseases and even their imminent death (Bluebond-Langner). They sense when people are not truthful, and this can cause them to suffer by feeling isolated from discussions, decisions, and support (Bluebond-Langner; Matthews).
When children have capacity and are prepared appropriately, truthfulness usually has good consequences by promoting cooperation and enhancing trust in their caretakers. Truthfulness also can foster decision-making abilities and maturity. When children have life-threatening or chronic illnesses, it may be especially important to them to gain some control over their lives and some respect for their views. For those facing death, opportunities to become self-fulfilled and self-determining persons may be restricted to choices about how they will live their last months.
Second, this trend stems from an understanding that capacity is task-related. In assessing ability the question must be asked: Capacity for what? People are capable of doing some things and not others and thus may have the capacity to make some healthcare decisions but not others (Buchanan and Brock; Faden et al.; Kopelman, 1990; Matthews; U.S. President's Commission, 1982). An eleven-year-old child with cancer may understand a great deal about the illness because he or she has had experiences beyond those of most eleven-year-old children. Consequently, the child may be better able than most children of the same age to understand or participate in healthcare decisions.
Children are increasingly able to participate in healthcare decisions as they become better able to understand and reason about their options and life plans. Although young children cannot do this, some adolescents may be as capable as most adults in these respects (Holmes).
In recent literature competent and incompetent are used as legal categories. The presumption is that unless the courts decide otherwise, adults are legally competent and minors are not. In reality, many legally competent adults lack decision-making capacity and many older minors are as capable as most adults. For the purpose of healthcare, decision-making capacity concerns the individual's ability to understand and appreciate the information needed to make informed decisions, evaluate that information in terms of stable personal values, and be able to use and manipulate the information in a reasonable way (Applebaum and Roth; Buchanan and Brock; Kopelman, 1990). To decide whether minors have the capacity to participate in important healthcare decisions, adults should assess how well children can understand the information, deliberate, appreciate the situation, and make, defend, and communicate choices. In addition, it is important to determine whether a minor has reasonable and stable personal values. The more they have such abilities, the more they should participate.
Many authors favor a sliding scale to determine whether a person is capable of making medical decisions (Applebaum and Roth; Kopelman, 1990). The lower the probability and the magnitude of the risk of harm from the decision, the less the need to scrutinize the decision-making capacity of the person giving consent. However, the greater the probability and the risk of harm from the decision, the higher the level of scrutiny that the decision is rational. The reasoning of parents who refuse chemotherapy for a child with cancer, for example, has to be assessed very carefully.
How Should Decisions Be Guided?
There are four important standards for healthcare decision making:
- The first standard—self-determination—applies primarily to the voluntary decisions of legally competent and informed adults who make their own choices about their well-being and opportunities as long as they do not harm or violate the rights of others. As minors become more mature, they should be accorded more self-determination, but their preferences need not be honored as are those of adults (Holder, 1985, 1989). An adolescent with cancer who insists that he or she would rather die than lose a leg needs help to understand that reaction. The degree of irreversibility and the severity of the consequences often determine whether a minor's preferences should be honored. Minors' choices generally become more morally binding on adults when minors show that they understand and appreciate the nature of the situation in relation to their life goals. Adult guidance is needed when minors cannot demonstrate that their choices enhance their well-being and opportunities.
- Like some adults, older children may prepare advance directives about their healthcare choices if they become incapacitated. Although a minor's choice need not be honored in the same way as an adult's decision, it may be an important consideration or seem morally binding in some circumstances. Dying children may, for example, indicate that they wish to donate organs or plan their funerals. Parents may want to follow such instructions carefully out of respect to the child's wishes.
- A third standard—substituted judgment—applies to someone who once was able to express preferences. In using this standard, people select the option they believe the person would choose if he or she were able. Families often know their relatives well enough to predict the choices their relatives would have made. Children, especially those with serious or chronic illnesses, also may express general preferences that should guide parental choices. One child who was very sick insisted that he did not want to be maintained in a persistent vegetative state (PVS) "like a zombie."
- The best-interest standard applies to those who do not have the ability or authority to make decisions for themselves. This standard maintains that decision makers should try to identify a person's immediate and long-term interests and then determine whether the benefits of an intervention or procedure outweigh the burdens. This does not mean that they seek what is absolutely best, because that may be impossible (the best doctor cannot treat everyone), but that they seek the best among the available options. This standard permits complex judgments about what on balance is likely to be best for an individual in light of the available options (Buchanan and Brock; Kopelman, 1993, 1997). For example, the benefit of obtaining a long and healthy life would outweigh the burden of enduring intense pain for a short time. The best-interest standard, however, might be used by parents, doctors, and nurses to withhold or withdraw maximal life-support treatment from children who have intense and chronic pain, with no prospects of improvement or foreseeable pleasures, understanding, or capacities for interaction.
In some cases objectively or intersubjectively confirmable estimates about pain and a well-understood prognosis force parents and doctors to choose between preserving biological life and providing comfort. Some children live in considerable discomfort from the technologies that keep them alive, such as a gastrostomy (a tube through which food goes directly into the stomach), intravenous lines, ventilators (breathing machines), long stays in intensive-care units, and a tracheotomy (a hole in the throat that aids breathing).
One goal of medicine, which should be balanced against others, is to preserve and prolong biological life. Since ancient times this ideal has been understood to mean that one ought to prevent untimely death. However, a question remains regarding the best interests of a person whose life is continued by means of maximal treatment that is a burden to that person (U.S. President's Commission, 1983; Buchanan and Brock; Kopelman, 1993). In cases where doctors and others disagree about what is best, it is hard to apply the best-interest standard. In such situations and for the general reasons discussed above, which give parents wide discretion when doctors disagree about what is best, an established legal and moral consensus using the best-interest standard allows parents to choose from options advanced as best (Buchanan and Brock; Holder, 1985, 1989; U.S. President's Commission, 1982, 1983).
The best-interest standard was challenged by President Ronald Reagan (1986) and Surgeon General C. Everett Koop (1989), who believed that quality-of-life considerations were likely to be abused. Under their influence the federal government in 1984 amended its child-abuse laws and adopted the so-called Baby Doe guidelines ("Child Abuse and Neglect, " 1985). These rules forbid withholding or withdrawing lifesaving care from a sick infant unless the child is dying or is in an irreversible coma or when treatment is both virtually futile in terms of survival and inhumane. To forgo lifesaving treatments it is not sufficient that the treatment be inhumane or gravely burdensome, as it would be in the Roman Catholic tradition. Suffering cannot be taken into account except when the child cannot survive even with maximal treatment (Kopelman, 1989a, 1993).
The Baby Doe rules are controversial because they radically restrict parental discretion and standard medical practice. In a 1988 survey U.S. neonatologists indicated that the use of this policy for judging when to withdraw or withhold care for infants would result in overtreatment, poor use of resources, and insufficient attention to suffering (Kopelman et al., 1988).
Defenders maintain that properly understood, the best-interest standard is a useful way to protect children and others who are incompetent (Kopelman, 1997). For example, the U.S. President's Commission states, "This is a very strict standard in that it excludes considerations of the negative effects of an impaired child's life on other persons, including parents, siblings and society" (U.S. President's Commission, 1983, p. 219).
Allen Buchanan and Dan Brock (1989) argue that quality-of-life assessments are not open to abuse if they are limited to judgments about what is best for the individual patient. The courts and others who reject such judgments made on behalf of incompetent people, they argue, do not distinguish two kinds of quality-of-life judgments. Quality of life judgments based on considerations of social worth try to weigh the interests or value of a person's life against the interests or value of other people's lives; they are comparative. In contrast, noncomparative quality of life judgments try to consider the value of the life to the person, comparing the value of living the individual's life to having no life at all. Although this comparison is difficult to make, it can be guided by choices made by competent adults who decide that there are worse things than death, including certain burdensome treatments to keep them alive. Buchanan and Brock (1989) hold that in applying the best-interest standard one should use noncomparative estimates, contemplating only the quality of life for that individual; a person's social value should not be part of the assessment. Noncomparative quality-of-life judgments, then, should be circumscribed very carefully and strictly. It is possible to reflect, for example, on whether most people would want to live such a life.
To some extent the effectiveness of the best-interest standard relies on the degree of social consensus about what is best for children and other persons who lack decisionmaking capacity. Consequently, it is hard to use in cases in which there is sustained disagreement, as there may be about when and how to use quality-of-life considerations. Arguably, one cannot avoid quality-of-life decisions entirely. For example, the Baby Doe regulations state that one need not provide maximal treatment to those who are permanently comatose, and that is a quality-of-life judgment. The debate also concerns what discretion should be given to parents, physicians, and other clinicians to select the best available option.
Kopelman (1997) has argued that some of the criticisms of the best-interest standard stem from confusing its different meanings. First, it is used as an ideal. For a child to receive a very scarce resource for a marginal benefit may be ideal yet unreasonable once one considers the claims and needs of others and the available resources. Nonetheless, it is important to consider what might be ideal for a child in framing what should be done in light of others' needs and the available resources. Ideals are also important in giving direction to people's efforts. The ideal of no children being abused or neglected gives direction to advocates for children.
Second, the best-interest standard is used in the sense of what is best given the options or what is best all things considered. For example, it may not be possible to give each child ideal healthcare, but it may be realistic to seek basic healthcare for all children. Another example is that some parents are not ideal guardians, but the state does not step in unless their children are endangered. If parents refuse lifesaving healthcare for children, the courts may remove custody from the parents temporarily or permanently; they then may use the best-interest standard to seek what is best for the child given the available options. They are not seeking what is ideal, because that may not be realistic, but what is best, all things considered, for the child given the available options.
Children as Research Subjects
Children are not responsible for their illnesses. The natural and social lotteries leave some children with diminished opportunities as a result of illness. Good health and social services may be essential to give these children a chance to flourish and develop their potential as self-fulfilled and self-determining persons. In addition, good healthcare helps children by preventing many illnesses and allows for early diagnosis and treatment. Good healthcare, however, is the product of study and research, and the problem is how research should be conducted to help children.
The ethical basis for research policy with children concerns promoting the same primary values that shape treatment decisions: enhancing well-being and opportunities. Because many children, like adults severely impaired with mental illness or retardation, lack the capacity to give informed consent, they are regarded as vulnerable research subjects. Like policy regarding treatment, research policy with children is shaped by different authority principles (who decides) and guidance principles (substantive directions about how decisions should be made). There is, however, an additional problem.
Pediatric research regulations and policy must deal with a dilemma: With too few protections, children selected as subjects may be exploited. If the regulations impose too many protections, however, it may become so difficult to conduct research that the knowledge base for making good decisions for children will erode. Different policy options try to solve this dilemma but do so differently:
- The surrogate or libertarian solution allows the same sort of research with children as with other subjects if the parents consent. This solution may not offer adequate protection to children because it permits parents to enroll them in potentially harmful research even if it holds out no direct benefits to them. Parents' legal and moral authority presupposes the promotion of children's opportunities and wellbeing and the prevention, removal, or minimization of harms to them. Parents have no authority to enroll their children in potentially harmful research that hold out no benefits to them. Volunteering to put another person in harm's way may violate a guardian's protective role.
- The no consent–no research or Nuremberg solution excludes children because children are not considered competent to give informed consent to being enrolled as research subjects. This view, expressed in the Nuremberg Code (Germany [Territory under Allied Occupation], 1947), seems too restrictive. It prohibits enrolling a child in a study even if the project could benefit the child directly. Moreover, to test the efficacy of treatments for distinctive groups, some members of those groups must be subjects. Competent, normal adults cannot serve as subjects in projects that test children's growth or maturity, drugs for premature infants, and treatments for children's life-threatening asthma.
- The "risk-benefit" solution allows research with children if it benefits them directly or does not place them at unwarranted risk of harm, discomfort, or inconvenience. To balance the social utility of research with respect for and protection of children, this option stipulates that the greater the risk, the more rigorous and elaborate the procedural protection and consent requirements. Many countries, such as the United States, Canada, the United Kingdom, South Africa, Australia, and Norway, in addition to international organizations such as the World Health Organization in its Declaration of Helsinki and the Council for the International Organizations of Medical Science, favor this solution. Research should be approved by local boards known variously as institutional review boards (IRBs) ethical research committees (ERCS), or research ethics committees (RECs) and in some cases by federal boards as well. Approval is based on findings that subjects have been selected fairly and that the risks to them are minimized and reasonable in relation to the anticipated benefits of the study ("Protection of Human Subjects, " 1993). Adequate provisions also must be made for the safety and confidentiality of subjects. Investigators must seek parents' informed consent. When possible, they also must obtain the child's assent, where assent means a positive agreement, not merely failure to refuse. Children's refusals are not binding when their parents and doctors judge that it is in their interests to participate, for example, in studies in which children may obtain a scarce resource to treat a deadly disease. This risk–benefit solution tries to determine whether the risks are proportional to the benefits for each individual and uses risk assessment to try to balance the social utility of encouraging studies that maintain respect for and protection of children's rights and welfare.
Using a likely harms-to-benefit calculation, U.S. regulations ("Protection of Human Subjects, " 1993), as outlined below, specify four categories of research with children. As the risks increase, the regulations require increasingly more rigorous documentation of appropriate parental consent, children's assent, direct benefits to the child, or benefits to children with similar conditions. Local IRBs can approve studies only in the first three categories.
The first category of research permits research with no greater than a minimal risk provided that it makes adequate provisions for parental consent and children's assent. Many important studies are safe, such as asking children to perform simple and pleasant tasks. Using this category, investigators might gain approval to study at what ages preschool children can name colors, identify animals, and perform simple tasks such as stacking blocks on request.
The second category of research permits the approval of studies with greater than a minimal risk if (1) the risk is justified by the anticipated benefit to each subject; (2) the risks in relation to these benefits are at least as favorable to each subject as are the available alternatives; and (3) provisions are made for parental consent and the child's assent. This category permits a child to get an investigational drug that is available only in a research study. Moreover, because children have unique diseases and reactions, to study the safety and efficacy of many conventional, innovative, or investigational treatments for children, some children have to serve as subjects in controlled testing.
The third category of research permits research (1) with a minor increase over minimal risk that holds out no prospect of direct benefit to the individual subject; (2) in cases in which the study is like the child's actual or expected medical, dental, psychological, or educational situation; (3) in cases in which the study is likely to result in very important information about the child's disorder or condition; and (4) in cases in which provisions are made for parental consent and the child's assent. In using this category, investigators have been permitted to perform additional lumbar punctures on children with leukemia, who get them anyway, to help study that disease.
Research that cannot be approved under the first three categories may sometimes be approved if (1) it presents a reasonable opportunity to understand, prevent, or alleviate a serious problem affecting the health or welfare of children; and (2) the study is approved by the secretary of the U.S. Department of Health and Human Services (DHHS) after consultation with a panel of experts about the value and ethics of the study and determination that adequate provisions have been made for public comment, parental consent, and the child's assent. In using this category investigators might gain approval to conduct studies to prevent or treat epidemics affecting children, such as the acquired immune deficiency syndrome (AIDS) epidemic, or a new infectious disease like the killers of the past (pneumonia, scarlet fever, diphtheria, and polio).
DIFFICULTIES. Unfortunately, the risk–benefit solution leaves key terms undefined or poorly defined, allowing different interpretations concerning when risks of harm are warranted and what constitutes a benefit (Freedman et al.; Kopelman, 2000, 2002; National Bioethics Advisory Commission [NBAC]). For example, consider the pivotal concepts of a "minimal risk" and a "minor increase over minimal risk." The federal rules state: "Minimal risk means that the probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical and psychological examinations or tests" ("Protection of Human Subjects, " 1993, section 102i). The first part of the definition focuses on everyday risks, and the second on routine examinations. (Interestingly, the National Bioethics Advisory Commision  recommended dropping the second part of the definition in favor of the more permissive first part, whereas the Council for International Organizations of Medical Science [CIOMS] omits the first [Council for International Organizations of Medical Science, 2002].)
Kopelman has argued that this definition is morally and conceptually problematic, especially the part using "everyday risk": First, how should people establish thresholds for the probability and magnitude of harm used to identify everyday risks, and even if they solve this problem, why are everyday risks morally relevant for determining acceptable research risk? People's daily risks may include car accidents and terriorist attacks. Is it possible to know the nature, probability, and magnitude of these everyday hazards well enough that they could serve as a baseline to estimate morally acceptable research risks for children? It seems easier to determine that a study asking children to stack blocks is a morally acceptable, minimal-risk study than to estimate the nature, probability, and magnitude of whatever risks of harm people normally encounter.
Second, given the different hazards in different countries and communities, what locale or locales should be used to assess everyday risks in determining morally acceptable research? Some favor a relative standard by which minimal risk is judged against the background of the children's location, environment or condition. Others reject this "relativistic" standard in favor of an absolute standard, saying that all children should have the same standard; otherwise one reaches morally abhorrent conclusions such as that more risks can be taken with children in dangerous neighborhoods than with children in safe and affluent neighborhoods. Third, why should everyday risks of harm be regarded as morally relevant for determining that research risks are minimal when some everyday risks are great?
Fourth, if this is a useful and clear standard, why has there been sustained disagreement over whether common procedures should be viewed as having a minimal risk, a minor increase over minimal risk, or greater risk? Since the regulations appeared decades ago, there have been sustained and substantive differences among pediatric experts in both treatment and research settings about how to assess the risk of procedures such as venipuncture, arterial puncture, and gastric and intestinal intubation (Janofsky and Starfield). Investigators and others concluded that better standards of risk assessment in children's research had to be formulated (Janofsky and Starfield; Lascari; National Bioethics Advisory Commission; Kopelman, 2002).
In addition, the U.S. regulatory definition of minimal risk offers little guidance about how to assess psychosocial risks such as breach of confidentiality, stigmatization, labeling, and invasion of privacy. Risks are allegedly minimal if they are encountered ordinarily in daily life or during routine examinations. Doctors, nurses, and psychologists, however, "ordinarily encounter" many psychosocially sensitive discussions in routine examinations and testing, including those about family abuse, substance abuse, sexual preference, and diagnoses, any of which could affect how people are viewed or whether they will be able to get jobs or buy insurance. Moreover, psychosocial-risk assessment is an increasingly difficult problem. Some genetic and other testing has low physical risks, such as taking a drop of blood, but high psychosocial risks. For example, Huntington disease is a genetic condition that causes progressive dementia and loss of motor function typically when the person becomes an adult. A person known to have this condition could be denied a job or insurance or be stigmatized in the community. Thinking of risks of harm as merely physical ignores such profound psychosocial risks.
Moreover, there is no definition of "a minor increase over minimal risk, " the upper limit of risk that many review boards can approve. The courts have begun to consider what risks of harm are permissible and may help standardize interpretations (Kopelman, 2002).
Even when it is agreed that the ethical basis for research policies with children is to promote their opportunities, well-being, fair treatment, and self-determination, it is difficult to articulate policies that balance the need to protect children and the need to gain knowledge. If research is not conducted with children as subjects, children may be denied the benefits of advances stemming from research and good information about which procedures or interventions promote health and prevent, treat, or diagnose disease. However, if children are enrolled as research subjects, vulnerable individuals who cannot give informed consent are being used.
Many children do not receive basic healthcare or social services. In some cases, countries that can afford to provide those services allocate insufficient funds for them. For example, the main health problems of children in the United States arise from failure to provide such basic care for children's allergies, asthma, dental pathology, hearing loss, vision impairment, and chronic disorders (Starfield; Newachecket et al.). Basic healthcare and social services promote children's well-being, enhancing their opportunities in fundamental ways and correcting some inequities caused by the natural and social lotteries. Children who are sick cannot compete as equals and thus lack equality of opportunity with other children. The more these conditions are easily correctable, as many of them are, the more unjust it is to leave children sick or disabled. Failure to provide children with basic healthcare and social services when a society has sufficient means is unjust on the basis of any of four important theories of justice: utilitarianism, egalitarianism, libertarianism, and contractarianism. This point of agreement among widely divergent positions serves as a powerful indictment and proof that as a matter of justice goods, services, and benefits should be redistributed more fairly to children to provide them with basic healthcare and social services.
Four theories of justice offer different guidance about how to allocate goods, services, and benefits. Proponents have used them to determine children's fair share of healthcare funding in relation to adults (intergenerational allocation) and ways to set priorities for funding within children's healthcare programs (intragenerational allocation). Each theory addresses what kinds of benefits, goods, and services should be provided to people as a matter of justice and how to choose from among programs when not all can be funded. Although there are many variations of these positions, each seeks a defensible standard to help make choices fairly.
UTILITARIANISM. Utilitarianism offers one solution to the problem of allocating healthcare justly between generations and among children's programs. In a well-known version, the philosopher John Stuart Mill (1863) argued that a just allocation provides the greatest good to the greatest number of people; the utility of following principles of justice is so great that these are among the most fundamental moral principles. People should not consider only the utility of isolated acts, Mill maintained, but also the rules of conduct that, if adopted and adhered to, maximize utility. Actions are right insofar as they fall under such a rule.
In their efforts to maximize utility for the greatest number in accordance with just rules, utilitarians seek to prevent or cure the most common illnesses, adopt programs that help many rather than few persons, and use funds where they will have the greatest impact for the most people. For example, utilitarians would resist funding expensive organ transplantations that help relatively few persons for a short time if those transplantations sidetracked programs that could help many people.
Some of the least expensive and most beneficial interventions are education about the benefits of exercise, a good diet, prevention of teenage pregnancy, and avoidance of alcohol, tobacco, and harmful drugs (U.S. Department of Health and Human Services). Relatively inexpensive interventions can aid in the treatment of many problems common in childhood, including vision impairment, hearing loss, dental pathology, allergies, and asthma, as well as the variety of chronic disorders that cause considerable functional impairment (Starfield; Newachecket et al.). Utilitarians favor providing such healthcare for children because it greatly increases their well-being and opportunities. It is socially useful and cost-effective because it can prevent costly illnesses and benefit the current generation of adults, who, when aged, will need support from a healthy, stable, and productive work force.
Utilitarians might even favor preferential consideration of children. Interventions that benefit both children and adults generally offer children the most years of benefit. Those added years increase the net good and thus could justify some preference toward children. For example, in some countries children receive dental care that is unavailable to adults because it has lifelong benefits and prevents costly future problems. Daniel Callahan (1987, 1990) believes that the young have a stronger claim to healthcare than the old and should be given priority; the healthcare system should see as its first task helping young people become old people and help older people become still older only if money is available. He argues, moreover, that medicine should give its highest priority to the relief of suffering rather than the conquest of death.
In choosing among children's programs for funding, defenders of utilitarianism assess the net benefit for the community of children. A utilitarian would favor funding routine care, mass screening, and prevention programs that help many children rather than the development of costly therapies that help few children. Consequently, utilitarians probably would resist using state funds to give otherwise normal short children growth hormone for many years, at a cost of many thousands of dollars a year, to increase minimally their adult height. Utilitarians, however, might permit private insurance or payment (in a multitiered healthcare system) for these and other services if it increased or did not diminish the net good.
Defenders of utilitarianism presuppose that it is possible to calculate what is best for the greatest number, but critics question that presumption (Brock). Moreover, critics state, whole groups could be excluded from beneficial healthcare for the sake of the common good, such as people with expensive or rare conditions and those with illnesses that are stigmatizing.
Utilitarians might respond that society would suffer from such exclusions, showing that this is not a good option even if one uses utilitarian calculations. This presupposes, however, that enough people would know about the exclusions and be distressed enough to alter the calculation. Sympathy for utilitarianism may depend on beliefs about whether it is possible to make utility calculations and whether a theory is acceptable if it permits people to exclude some groups for the common good regardless of the results of the utility calculation (see Brock). Defenders of rule utilitarianism, a version of utilitarianism that clarifies the role of rules in assessing utility, respond that, properly understood, utility prohibits unfair exclusions of individuals or groups; people adopt rights and justice principles because they are useful, and unjust exclusions undercut the utility of those rights and principles for all (Buchanan; Mill). Even if it is cost-effective or politically expedient to exclude a particular person or group, that exclusion undercuts something more important for all of us, namely, fair rules.
Utilitarians favor basic healthcare and social services for all children because of the utility to the children and to society. For example, suppose society could save a great deal of money by excluding certain children from healthcare services. Although this might save money in the short run, defenders of rule utilitarianism might argue that it is unjust because adapting and adhering to the rule that all should receive basic services are more useful in the long run than is excluding a few to save money. Accordingly, the rule that all children should receive basic care is vindicated because the rule is useful and making exceptions is less useful.
EGALITARIANISM. Egalitarianism is a theory of justice whose proponents attempt to solve allocation issues and intergenerational disputes by holding that access to the same benefits, goods, and services should be provided to everyone on the same basis. It is a principle of justice that requires society to try to make all people's objective net well-being or opportunities as equal as possible. Most people do not want dialysis because they do not have kidney disease, but people want access to dialysis if they should need it. Egalitarians, then, do not want exactly the same treatment for everyone as a condition of justice but want everyone to have access to the same goods, services, and benefits on the same footing.
Egalitarians look at outcomes of distribution schemes to determine whether distributions are fair. Accordingly, proponents of egalitarianism judge it to be unfair, for example, that adults over sixty-five can get diabetes and asthma treated free of charge in the United States but children cannot. Age might be a determinant in deciding who gets benefits, goods, and services, but only as one among other prognosticators of success. For example, people over eighty or under two years of age might be excluded from consideration for a certain type of surgery because they are unlikely to survive the procedure.
Defenders of egalitarianism hold that what is provided to one person should be available to all similarly situated persons. The advantages of good healthcare are such that in fairness they should be distributed on as equal a basis as possible. There should not be a multitiered system with one level of goods and services for the rich and another for the poor. If society allows some normal short children to have growth hormone for many years at a cost of thousands of dollars a year, all who are similarly situated should have access to similar services. For expensive or scarce resources, many egalitarians favor lotteries so that all those who are similarly situated have an equal opportunity and are recognized as having equal worth (Childress; Veatch). Consequently, if organs for transplantation can be provided only to some children, there should be a lottery among those who meet whatever standards are set. In this way people acknowledge the value of each person and the importance of fair access of all to scarce or costly benefits, goods, and services. One difficulty for egalitarians is that some people's needs are so great that they could consume most of the resources of a healthcare system. Robert Veatch (1986) tries to defend a commitment to those who are so disadvantaged that they could use unlimited resources while placing limits on their claims on other members of society.
In defending egalitarianism it is difficult to clarify what kind of equality is important. If it is access to the same benefits, goods, and services, age bias and discrimination could be introduced through preference for certain benefits, goods, and services. For example, treatment for prostatic hyperplasia and Alzheimer's disease helps only adults; other care helps adults much more than children, such as treatments for heart disease or lung cancer and treatments at the end of life. Some funding choices discriminate by excluding services equally and for all diseases afflicting people with stigmatizing conditions, such as sexually transmitted diseases. This parallels a problem of utilitarianism in which whole groups can be excluded if society decides, to save money, that none will have treatments for certain conditions.
If, however, equality is understood in terms of outcomes rather than access, age bias and discrimination also can be introduced through the method of collecting and presenting data (Starfield). In the United States, for example, data collection to determine the health of different populations focuses on life-threatening illnesses and death. Relatively few children have such morbidity or mortality in comparison to adults, giving the impression that children are generally healthy. This impression, however, is a consequence of how the data are collected. Most children's needs stem from problems that are not life-threatening illnesses but have a profound effect on health, such as dental problems, vision impairment, allergies, and asthma. Moreover, although the death rate of children in the United States is low compared with that of adults, it is the highest among equally affluent countries (Starfield). Looking at certain outcomes, then, promotes an unfair view of childhood health and morbidity. Programs based on such data can create unjust age bias against children. Thus, treating everyone as equals is problematic if the measures favor certain groups.
People's willingness to defend egalitarianism depends in part on whether they believe it is fair to restrict choices by insisting that no one can have healthcare that cannot be provided to all on the same basis. If people can squander their assets on entertainment and clothes, it seems unfair to insist that they cannot spend it on marginally beneficial, exotic, or expensive healthcare for their families. Some respond that rich people dread single-tiered systems because it means that they cannot have their usual advantages through money and forces them to live by the same rules as others. They argue that allocation of healthcare (especially in life-and-death situations) is too important to be left to unregulated personal choice and market forces. Some defenders of egalitarianism modify their view to permit people to use their discretionary resources as they wish.
LIBERTARIANISM. Libertarians generally agree that competent adults should not be forced to do anything by the state unless it prevents harm to third parties. Coercion is permissible to prevent theft, murder, physical abuse, and fraud; enforce contracts; and punish competent people for harming others (Buchanan). The best-known defender of this view, Robert Nozick (1974), follows the eighteenth-century philosopher John Locke in maintaining that people's right to their fairly obtained property is fundamental and determines the proper functions of the state and the moral interactions among individuals.
People are entitled to their holdings and may dispose of them as they wish, according to this view. They argue that the state should not redistribute people's wealth in accordance with a pattern of distribution that examines outcomes (such as utilitarianism and egalitarianism) or uses coercive measures to take people's holdings, and adults should be free to fashion social arrangements out of their ideas of compassion, justice, and solidarity (Engelhardt). People do not have a responsibility to be charitable, say libertarians, but acts of charity are praiseworthy and should be encouraged.
Libertarians hold that children's healthcare is the responsibility of their guardians, not the state. Market forces of supply and demand and choices about how to use their own money should shape the kind of healthcare people select for themselves and their children. If parents want to pay for special services such as growth hormones or repeated organ transplants, they should be permitted to do so.H. Tristram Engelhardt, Jr., argues that societies can decide morally who is entitled to healthcare of a certain kind within certain limitations. However, a society does not, for example, have "the moral authority to forbid consensual acts among agreeing adults, such as agreement to sell an organ" (Engelhardt, p. 10).
Sympathy for libertarianism depends on whether it is believed to offer enough protection for people, especially children and impoverished or incompetent adults. This view arguably benefits the wealthy and powerful; because most children are neither, it might create an age bias against children. Libertarians argue that competent adults should pay their own way, but when do people really do that? Typically, people's healthcare insurance gives them access to institutions heavily subsidized by public money. People who "pay their own way" may pay just a bit more for many more services. Those who cannot pay more are unfairly excluded. Libertarians might agree that separate institutions should be set up in which people truly pay their full share even if that would mean that few could afford such added care.
Libertarians usually favor special state protection for children, allowing the state to interfere with parents who endanger, neglect, or harm children. This can include providing children with a "safety net" of basic healthcare and social services. A system favoring special benefits based on redistribution of wealth for competent adults, however, is considered unjust. Hence, a system like that in the United States that provides many social and health benefits to competent and even wealthy adults but not to children, for example, in the allocation of healthcare benefits, goods, and services, would be viewed by libertarians as unjust.
CONTRACTARIANISM. Contractarians hold that distributions of social goods are fair when impartial people agree on the procedures used for distribution. The best-known defender of this position is John Rawls, who in A Theory of Justice (1971) and Political Liberalism (1993) contends that people form stable and just societies by building a consensus that merits endorsement by rational and informed people of goodwill.
This entails a commitment to three principles of justice. First, "each person is to have an equal right to the most extensive system of equal basic liberties compatible with a similar system compatible for all." Second, "offices and positions are to be open to all under conditions of equality of fair opportunity—persons with similar abilities and skills are to have equal access to offices and positions." Finally, "social and economic institutions are to be arranged so as to benefit maximally the worst off" (Rawls, 1971, p. 60). These principles are ordered lexically such that the first, the greatest equal-liberty principle, takes precedence over the others when they conflict and the second, the principle of fair equality of opportunity, takes precedence over the third, the difference principle. Nowhere is healthcare as a right mentioned specifically in Rawls's attempt to frame the basic structure of a just society. This is understandable because a society may not have enough healthcare goods, services, or benefits to distribute. In a society that does have such goods, services, and benefits, however, their fair distribution seems central to promoting fair equality of opportunity and benefits to the worst off.
Norman Daniels (1985), building on Rawls's work, argues that society should provide basic care to all but redistribute healthcare goods and services more favorably to children. The moral justification for giving children access to basic healthcare, argues Daniels, rests on a social commitment to what he and Rawls call "fair equality of opportunity" (or affirmative action). Healthcare needs are basic insofar as they promote fair equality of opportunity. Healthcare for children is especially important in relation to other social goods because diseases and disabilities inhibit children's capacity to use and develop their talents, thus curtailing their opportunities. For example, children cannot compete as equals if they are sick or cannot see or hear the teacher. Thus, a society committed to a fair equality of opportunity for children should provide adequate healthcare.
Daniels holds that to assess whose needs are greatest, people have to use objective ways of characterizing medical and social needs; the ranking of needs helps determine what is basic and who profits most from certain services. Using the difference principle, free, additional service might be provided to the poorest children to help level the playing field so that they could compete more effectively with those from more affluent homes. Unlike utilitarians, who would be guided by where money would have the greatest overall impact on the health of the greatest number of children, contractarians try to bring all children of similar talents to the same level of functioning so that they can compete as equals.
Contractarianism has certain difficulties. Some regard it as a method for arriving at ethical principles, not as an alternative to views such as utilitarianism, egalitarianism, and libertarianism (Veatch). Accordingly, those who think it generates a unique theory need to clarify how it has a distinct content. In addition, it is hard to specify what is meant by "people's normal opportunity ranges" or to decide how to apply fair equality of opportunity. This position seems to suggest (arguably similar to egalitarianism) the unsatisfactory consequence that people should fund treatments, however exotic and costly, that offer a chance for the most disadvantaged to improve their normal opportunity range irrespective of the needs of the many; gifted children could be denied opportunities to excel so that others could enhance their normal opportunity range or be brought to the level of well-being and opportunities of average children. Another problem is that contractarianism presupposes, like utilitarianism, that there is a fair and objective system for ranking medical and social needs and deciding who benefits most from services (Brock). It is unclear whether such a comprehensive and objective ranking is possible. Such "objective" choices about appropriate or useful programs might be mixed with social and personal biases. These problems, however, do not undermine the contractarians' commitment to the justice of equal opportunity for children, including the fairness of providing basic health and social care for children.
A PROPOSED CONSENSUS. Each of these theories of justice supports the claim that children are entitled to basic healthcare and social services to correct inequalities and promote their flourishing as free and self-determining people who can develop their potential. The fact that defenders of such divergent approaches agree on this entitlement reflects a consensus that children's distress ought to be relieved whether it is related to inadequate healthcare, poverty, abuse, neglect, malnutrition, or exploitation. A primary duty of a just society is to promote fairly its children's well-being and opportunities to become self-fulfilled persons through access to basic healthcare and social services and to address the inequities resulting from life's natural and social lotteries. Children living in low-income homes in the United States are two to three times as likely as children in high-income homes to be of low birth weight, get asthma and bacterial meningitis, have delayed immunizations, and suffer from lead poisoning. Poor children are also three to four times as likely as rich children to become seriously ill and get multiple illnesses when they become sick (Starfield).
The gap between the rich and the poor is increasing, and the rise of poverty is most rapid among children. Healthcare costs, driven higher by an aging population and increased demands for expensive technologies, will make it harder for societies to allocate costs justly. In addition, the AIDS epidemic has left many children sick, orphaned, or both, and many children live in the developing world, where resources that could help them are meager. Consequently, disputes involving intergenerational and intragenerational allocation from national and international funds are likely to continue as programs compete for funding. Because children depend on others to advocate for them, adults should continue to set aside their individual interests and consider children's well-being, needs, and opportunities as a matter of justice.
loretta m. kopelman (1995)
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