Professional Codes of Conduct

Guidelines for the professional behavior of medical practitioners have been promulgated for at least 4000 years, according to writings from ancient Egypt and Mesopotamia. The comparatively recent Oath attributed to Hippocrates (460-380 b.c.) is among the most famous, but other prominent medical writers such as Galen and Maimonides offered advice on privacy, duty to patients, and end-of-life issues.¹ Such guidelines express values common to medical practitioners, but they also serve to elevate the standing of medicine as a profession and not a mere vocation. For example, the American Medical Association was founded in 1847 in part to restrain unseemly competition among medical practitioners; that same year, the association’s leadership disseminated a code of appropriate behavior for medical practitioners that included rules for referrals and fee splitting.²

Since the early 1980s, a surge of interest in professional behavior has led a number of organizations to develop codes of conduct for health care providers (Table 28-1). The European Federation of Internal Medicine, the American College of Physicians–American Society of Internal Medicine, and American Board of Internal Medicine, for example, collaborated to publish a physician charter outlining principles to which “all medical professionals can and should aspire.”³ As in similar documents since the 1950s, the physician charter focused on principles that many argue provide the foundation for medical practice: beneficence, autonomy, privacy, and social justice or equity. Rules of professional behavior described in these or similar principles are now being integrated more fully into the training and accreditation of physicians; examples include recommendations and requirements of the Accreditation Council for Graduate Medical Education, the Association of American Medical Colleges, and the National Board of Medical Examiners.⁴

TABLE 28-1 Professionalism According to Medical Institutions⁴

AAMC, American Association of Medical Colleges; ABIM, American Board of Internal Medicine; ACP-ASIM, American College of Physicians–American Society of Internal Medicine; EFIM, European Federation of Internal Medicine.

The seemingly universal nature of ethical principles is underlined by their international scope. The Declaration of Geneva adopted in 1948 by the World Medical Association was an attempt to describe a world standard for medical professionals, and there is evidence that the professionals’ beneficial influence extended beyond the physician-patient relationship to help shape humanistic and egalitarian features of the world’s legal and political institutions.⁵ Indeed, the United Nations General Conference began devising universal standards in the field of bioethics that extended far beyond professional conduct by physicians. The 2005 Universal Draft Declaration on Bioethics and Human Rights outlines the ethical practices expected of policymakers, health care providers, and professional groups (Table 28-2).⁶

TABLE 28-2 Universal Draft Declaration on Bioethics and Human Rights^6,48

Moral Theory

For centuries, many physicians have grounded ethical behavioral in their religious beliefs, whether invoking the gods of Hippocrates’s Greece or the monotheism of today. Particularly in the United States, appeals to the Ten Commandments or especially the “golden rule”—“Do unto others as you would have them do unto you”—are especially common approaches to proscribing behavior. Other physicians and scholars have turned to secular theories of moral behavior. John Stuart Mill’s and Jeremy Bentham’s utilitarianism, commonly understood as the “greatest good for the greatest number,” is one system that focuses on the consequences of given actions as the tool for making the best choice. Immanuel Kant held that moral behavior would follow from meeting the rational requirement to choose the course of action that a person would want everyone in a similar position to follow, as if that person were setting the rules for behavior. In the 1970s, largely in response to reports of abuse of research subjects in the Tuskegee syphilis experiments, the U.S. federal government commissioned a group of scholars to provide a guide for the proper conduct of research, and the resulting Belmont Report focused on the principles of autonomy, beneficence, and justice. Further developed by Beauchamp and Childress, “principlism” has been widely applied to clinical ethics as well.⁷

Gert argued that these traditional systems of moral theory are generally not useful in resolving clinical and other ethics debates.⁸ Each of these systems has noteworthy exceptions, and any system that sometimes produces the wrong answer cannot be relied upon to produce the right answer when faced with an ethical dilemma. Furthermore, Gert argued, moral theories that suggest that there is one right answer can actually impede resolution of ethical dilemmas by creating conflict among participants. Instead, according to Gert, most dilemmas can be resolved if there can be agreement on the facts, and in cases of true conflict on values, such as abortion, there can be more than one morally acceptable answer. He offered his own approach of moral rules and ideals and suggested that breaking the rules is appropriate when a person would be willing to describe publicly why he or she is breaking a rule and have it stand as policy. For example, breaking a promise of confidentiality is appropriate when a clinician learns that a patient plans to injure somebody.

Autonomy, Beneficence, and Justice

Despite the limits of principlism for resolving ethical dilemmas, it provides a useful framework for understanding clinical ethics.⁹

There are three basic elements to autonomy: agency (awareness of oneself, desires, and intentions), independence (absence of influences), and rationality (capacity for reflection on desires). Respect for a patient’s autonomy is the fundamental principle underlying privacy, confidentiality, valid consent, and refusal of treatment. In the United States, the right to privacy was first recognized as protected by the Constitution in the 1965 U.S. Supreme Court ruling, Griswold v. Connecticut,^9a a case involving use of contraception by married couples. In clinical practice, autonomy has come to mean that patients generally decide what medical care they receive, and their wish to refuse treatment should be respected if they are fully informed and appreciate the consequences of their refusal. Because of age and cognitive level, children are typically not deemed competent to make medical decisions. Parents or guardians are usually called upon to do what is in the best interests of the child. As children enter their teens, they begin to participate in health care decisions, especially when the issues involve pregnancy or treatment for sexually transmitted infections.

When the health care team believes that a family’s wishes are not in the best interest of the child, they have an obligation to argue that a “reasonable person” would choose otherwise. When such conflicts cannot be resolved, even with help from social workers and pastoral care providers, the health care team can appeal to a state government to protect the interests of the child. The state typically intervenes on behalf of the child through the court system, for example, when parents refuse obviously lifesaving treatment on religious grounds. Most hospitals have bioethics committees that can help clarify ethical dilemmas and provide leadership in articulating a consensus on community values.

The twin principles of nonmaleficence and beneficence also focus on the individual patient’s best interest. Nonmaleficence, the duty to do no harm to patients, is deeply rooted in the history of medicine. However, it is not enough to merely restrain from harmful acts; the physician must take active steps to contribute to the welfare of the patient. Deciding whether aggressive intervention at the end of life would produce more harm than benefit for a patient is a classic example of how the principle of beneficence may be applied. Constructing a risk : benefit ratio can operationalize the principle of beneficence: a favorable benefit : harm ratio is the prerequisite for any action to be ethically justified.

In attempting to follow the principles of autonomy and beneficence, the health care provider will confront inequities in the social and economic fabric of society. The philosopher John Rawls offered one way to describe such inequities: The “natural lottery” distributes properties through birth, and the “social lottery” distributes social assets through family property, social class, and education. The principle of justice holds that people do not deserve advantageous properties any more than they deserve disadvantageous properties.⁷ In the United States, however, children living in poverty and those without health insurance are much more likely to experience poor heath than are those who are wealthier and those with health insurance. A just distribution of resources implies that all children, indeed all persons, should have equal access to medical treatment and adequate education, housing, and nutrition. Children with special health care needs are especially likely to suffer from inadequate access to beneficial medical care, and their families face substantial economic hardship.

Principlism, Historical Context, and the Role of the Bioethics Committee

Despite the popularity of principlism as a framework for clinical ethics, there is empirical evidence that education in such principles of ethics does not affect moral decision making as much as do culture, personal history, and social and institutional context.¹⁰ Indeed, it is sometimes difficult in practice to balance all the principles equally and simultaneously, inasmuch as an emphasis on one principle often minimizes that on another. For example, in an effort to minimize harm to a patient with an aggressive medical intervention, the physician might indirectly diminish the patient’s autonomy. Beneficence and autonomy often conflict with the principle of social justice, in the presence of finite resources in health care. An individual physician may advocate for a third liver transplantation for her patient, for example, but in the context of a long waiting list, social justice suggests that other patients should have an opportunity to benefit from that limited resource. Which principle takes precedence? Who is to decide which principle is most important in a given case?

The answers to these questions vary with time and place. Each society works out an approximate consensus for most ethical issues, and this consensus may shift over time. For example, during the 1950s in the United States, there was a general consensus that beneficence trumped autonomy: the physician knew best what to do at the end of life, and it was appropriate to withhold information from patients and families. Through the 1960s and 1970s, such “paternalism” came under attack as part of a larger movement questioning the beneficence of institutional authority, and today autonomy typically outweighs beneficence (see Chapter 8B).¹¹ This shift towards patient autonomy is embodied in the case of Nancy Cruzan^* in 1990, when the U.S. Supreme Court recognized the right of competent persons to decline medical treatment even if it led to the person’s death. Living wills and advanced directives now instruct the health care team to respect the wishes of the patient at the end of life.

One way of defining the social consensus on controversial ethical issues is through institutional bioethics committees. Since the 1970s, such committees have been increasingly active in the United States and elsewhere, in part to fulfill the requirement by the Joint Commission on Accreditation of Healthcare Organizations that hospitals have a mechanism for addressing ethical issues in patient care. One key role of an institutional bioethics committee is to define current standards of ethical practice: that is, to help the entire community understand what the social consensus is with regard to typical issues such as confidentiality and end-of-life decisions. The membership of a bioethics committee is therefore crucial for its success: Some members should be well trained in the philosophical principles of bioethics, some should be legal experts, some should have experience with pastoral care, some should have clinical experience with common ethical issues, and some, arguably, should have a personal experience of living with a disability.¹² Overall diversity of membership is crucial, however, because the committee needs to be able to say that its deliberations reflect the broad consensus of a community. In this case, diversity refers to gender, age, disability, race/ethnicity, professional background, political viewpoints, and association with the hospital. The presence of at least one committee person with a developmental disability helps ensure that special issues related to persons with disabilities are appropriately considered. Table 28-3 describes the properties of an institutional ethics committee according to the United Nations Educational, Scientific, and Cultural Organization (UNESCO), the American Medical Association, and the American Academy of Pediatrics.

TABLE 28-3 Guidelines for Institutional Ethics Committees (IECs)

From Antiquity to the Enlightenment

Persons with disabilities have suffered from discrimination and abuse since antiquity, although such treatment was not universal. In ancient Greece and Rome, for example, most scholars attributed disabling condition to failure of parents to properly revere the gods. Hippocrates’ hypothesis that epilepsy was a disturbance of the natural processes in the mind was a rare example of seeking material causes of disease. In their everyday lives, many persons with disabilities served as scapegoats for minor or major problems, and they typically pursued the only work available: as singers, dancers, musicians, jugglers, or clowns. Blind people were occasionally revered as poets and bards, but that was an exception to typical beliefs about the cognitive abilities of persons with disabilities. Deaf people, according to Aristotle, were incapable of learning. However, Aristotle also echoed Socrates in his admonition to “pity the weak,” and thus the city of Athens provided some support to individuals with disabilities. In the warlike state of Sparta, in contrast, “deformed” and sickly infants were sometimes abandoned, because their continued existence threatened the strength of the state.

Christian religious authority and superstition reigned in the Middle Ages. Parents were still blamed for a child’s disabilities, for example, but in the new religious context, explanations for disability were more likely to be found in the sins of the parents. St. Augustine, although generally progressive in his approach to persons with disabilities, also argued that disabilities represented proof of God’s power over the natural world and that because the deaf could not hear the gospels, they were to be excluded from church activities. Other church officials sought to help people with mental illness by tying them up in the church in the belief that they could be improved by attending mass. In other parts of Europe, the teachings of Jesus set a new example of pity and sympathy toward the physically and mentally disabled. Some religious cloisters provided places of refuge, and persons with physical disabilities commonly traveled to pilgrimage sites such as Rome and Jerusalem in search of salvation.

During the Middle Ages, civil authority was deeply intertwined with the Christian religious hierarchy throughout Europe, which affected the civil rights of persons with disabilities. In early modern England, “poor laws” provided some material support to individuals unable to work because of a disability. In other places, however, the negative view of persons with disabilities meant that they were not allowed to inherit property; testify in court; or make a deed, contract, or will. Even worse, in 1484 Pope Innocent VIII proclaimed a war against witches, and during the next 300 years, there were more than 100,000 witch trials throughout Europe. People with disabilities were frequently accused of demonic possession, and tens of thousands were tortured, hanged, or burned at the stake.

Whereas Christian and lay authorities provided widely varying views on disability, Jewish teachers more consistently emphasized that all human life is to be considered a gift and that no form of life, even a disabled one, constitutes divine punishment. Thus, the principle of the sanctity of human life guided much of the treatment toward disabled children through Judaic history. For example, the revered 11th century Talmudic scholar Rashi wrote that no child should be abandoned to die but, rather, even children born with overwhelming abnormalities should be nursed by their mothers.

Similar to the teaching of prominent Jewish scholars, the Islamic tradition typically highlighted the sacredness of all human life.⁹ Although the study of disability in the medieval Islamic world is only in its infancy, preliminary evidence suggests that Islamic society generally did not associate disabilities with moral or spiritual deficiencies.¹⁴ However, the legal rights of persons considered to be incompetent were considerably curtailed, and they were typically entrusted to a legal guardian’s care. Medical treatment for this population varied, including incantations, magic, exorcisms, and a physiological approach adopted from Galen: Like the famous physician, Islamic practitioners hoped to heal cognitive or physical disabilities by restoring the balance of humors.

From the Renaissance through the Enlightenment, religious authority was increasingly separated from civil authority, and governments slowly moved from monarchist to republican models with power invested in representative governments. Enlightenment philosophers argued for the rights of the individual, and through the 19th century, children in particular took on new cultural value as individuals, rather than mere small adults who were the property of their father. From Paris hospitals through German laboratories, the scientific model was applied to medicine, and the search for rational explanations to disease and medicine was reinvigorated.

Persons with disabilities benefited from these broader changes in society. Among richer families, for example, deaf first-born sons were taught to read and write in order to fulfill legal inheritance requirements. In Germany and France in particular, individuals with disabilities began to take part in community activities, and the discipline of physical therapy emerged to treat persons with physical disabilities. The most dramatic development was that governments in Europe and the United States built large hospitals to treat mental retardation in the early 1800s. Founders of these institutions believed that special training programs and the appropriate environment could cure mental retardation. Optimism waned in the late 1800s, however, because discharges were rare and doctors began to recognize mental retardation as a chronic problem. Underfunded and overwhelmed, these institutions became custodial care centers, and reports of horrific conditions recurred throughout the 20th century.¹⁵

Twentieth Century and Eugenics

In 1915, H. F. Haiselden recommended not performing lifesaving surgery on a newborn boy because the procedure would not cure underlying physical and mental abnormalities. Baby Bollinger died 5 days after birth, with the parents’ assent. This was probably a very common occurrence in the early 20th century, but in this case, Haiselden, the head of the German-American Hospital in Chicago, went public. He revealed that over the previous decade he had allowed many other infants to die because they were “defective.” Haiselden even created a movie loosely based on the Bollinger baby case, the “Black Stork,” in an effort to promote his beliefs. A substantial number of prominent Americans and established medical organizations, including the National Medico-Legal Society, endorsed Haiselden’s position. Although some local officials criticized Haiselden’s actions, no one concluded that a crime had been committed. Rather, it was determined that Dr. Haiselden was fully within his rights as a physician to refuse to perform an operation that his conscience would not sanction.

Pernick used this example to remind us that ethical issues regarding withholding of treatment from persons with disabilities are not the result of technological advances in the 20th century.¹⁶ Decisions about what care to provide to persons with disabilities have a certain continuity throughout human history. Ancient Spartans believed that infants who survived exposure were fit to live; medieval Christians attempted religious cures of persons with mental retardation; early modern physicians hoped that by bleeding patients, they could restore humoral balance and thus health; Enlightenment scholars believed that properly constructed institutions could dispel mental afflictions. Although modern medicine may judge such practices as ineffective or barbaric, practitioners (and patients) understood them to be the standard of care, and hence decisions to apply or withhold them share common themes with such debates today.

As Pernick also pointed out, the specific historical context is critical for understanding how such ethical debates are resolved. Haiselden’s actions took place at a time in American history, for example, when eugenics was an accepted social philosophy among many mainstream scholars, such as Judge Oliver Wendell Holmes, geneticist Charles Davenport, and other leaders across the political spectrum. By combining Darwin’s theory of evolution with an emerging understanding of genetics, advocates of eugenics believed that they could eliminate pain from disease and inequity in U.S. society in a single generation. They understood human behavior in simple genetic terms: Characteristics such as intelligence, honesty, and sobriety were passed on according to mendelian genetics. The future therefore lay in encouraging “fit” couples to marry and discouraging others from parenthood. Mental retardation in particular was seen as an inherited condition that at best did not contribute to society and too often led to crime and general depravity. Advocates of eugenics believed that persons with mental retardation could not be trusted to refrain voluntarily from procreation; they persuaded many states to pass laws that led to the involuntary sterilization of adults with mental retardation. Upheld by the U.S. Supreme Court in their 1927 Buck v. Bell^16a decision, such laws resulted in the sterilization of more than 60,000 individuals. In Nazi Germany, more than 200,000 individuals with disabilities were euthanized in that nation’s atrocious effort to eliminate disability.

The Disability Rights Movement

The U.S. disability rights movement of the 1970s followed the model of similar struggles for civil rights by women in the 1970s and African-Americans in the 1960s and early 1970s. Disability rights leaders also owe much, however, to a long tradition of advocacy by relatively anonymous families, beginning in the early 1930s. Parents of children with mental retardation began to join together in local grassroots associations to challenge social prejudice and work collectively to improve the well-being of their children. By 1951 there were more than 125 such groups in the United States and Canada, loosely held together by the desire for peer support and the conviction that the public schools had a responsibility to aid children with disabilities. The National Association of Parents and Friends of Mentally Retarded Children was founded in 1950, with the common objective to further the movement for disability rights on the national level.

Despite the work of such advocacy groups, however, most disabled people remained hidden from public view, either in their homes or in institutions. Well into the 20th century, American society still treated its disabled population, especially those with mental disabilities, as a group that needed to be controlled by segregation, sterilization, and isolation. In the1950s more than 500,000 Americans were housed in overcrowded psychiatric hospitals with custodial care.¹⁷ Mental retardation, like many chronic conditions, was associated with poverty, immorality, and racial or ethnic minority status.

The needs of persons with physical disabilities gained national attention with the return home of injured veterans after World Wars I and II and from impaired survivors of polio epidemics. War veterans and polio survivors did not fit simple stereotypes of disability, and their demands to be fully part of community activities challenged long-held attitudes toward persons with disabilities. Rehabilitation medicine grew as a medical discipline, and dramatic advances in assistive technological devices after World War II led to improved quality of life for persons with disabilities.

Public perception of developmental disabilities changed also because of the efforts of famous families who began to publicly discuss their experience of disability. Before the 1960s, most families hid any association with disability, and even today many people vaguely remember hearing about or visiting a family member who lived in an institution. President Franklin Roosevelt contracted polio long before he was president, for example, but in his years in office from 1932 until his death in 1945, not a single picture that revealed his disability was ever printed. An unspoken code of honor in the White House and among press photographers allowed the general public to believe that Roosevelt had fully recovered from polio. Roosevelt and his colleagues assumed that the American public could not accept a president with a disability.¹⁸

By the time that John F. Kennedy became president in 1960, the American people were ready to openly discuss disability. Largely through the urging of his sister Eunice, President Kennedy revealed that he had a sister Rose with mental retardation and argued that the nation had a responsibility to do more for persons with disabilities. Kennedy was following the example of other public figures such as author Pearl S. Buck^* and entertainer Roy Rogers,^† whose personal stories helped many families overcome the shame commonly associated with mental retardation. As president, Kennedy had the ability to make an enormous difference. His expert President’s Panel on Mental Retardation recommended investing in prevention, basic research, and training professionals to provide health and special education to persons with mental retardation and other developmental disabilities. Through legislation and federal directives, millions of federal dollars were allocated to support maternal and child health programs, train teachers and physicians, and investigate the causes of mental retardation (see Chapter 8A).¹⁹ Today more than $40 billion per year in federal and state spending is devoted to education, health care, and other programs for persons with developmental disabilities. Nearly all large state institutions for persons with mental retardation/developmental disabilities have closed, and interdisciplinary outpatient care has been the recognized standard since the 1950s.

Despite such federal programs, however, most persons with developmental disabilities still faced many barriers to full participation in school, work, and community activities. In the 1970s, disability rights advocates used legislation, court rulings, and public acts of disobedience to claim full access to all aspects of American life. Ed Roberts^* and Judy Heumann,^† for example, each completed university degrees and joined the workforce despite prejudice and administrative roadblocks that prevented persons with disabilities from participating in public schools and the workplace. These two renowned leaders of the disability rights movement eventually held government posts designed to remove barriers to education and employment, thus helping to reform the very institutions that once tried to exclude them. Access to a “free appropriate public education” was ensured legally to all children with disabilities in 1975 when Congress passed Public Law 94-142 (Education of All Handicapped Children Act), now codified as the Individuals with Disabilities Education Act.²⁰

More general access to public institutions was ensured in the aftermath of a critical incident in 1977, when disability rights activists in nine cities staged demonstrations and occupied the offices of the federal Department of Health, Education, and Welfare. They also conducted a “sit-in” to force the President Carter’s administration to enact Section 504 of the Rehabilitation Act of 1973, which made it illegal for any federal agency, public university, federal contractor, or any other federally funded institutions to discriminate on the basis of a disability. The demonstrations galvanized the disability community nationwide, particularly in San Francisco, where protests lasted for nearly a month. The legal protections of Section 504 were extended beyond federal institutions with the passing of Developmental Disabilities Act in 1990, and subsequent court decisions have affirmed that persons with disabilities must have the opportunity to participate fully in the community (Table 28-4).

TABLE 28-4 Key Disability Rights Laws in the United States in the Late 20th Century^49–51

Surgical Shaping

Innovative surgical procedures hold promise to reduce impairment or at least the appearance of a disability. Although surgical repair of a cleft lip or cleft palate has long been well accepted, controversy surrounds procedures such as cochlear implants for profound hearing impairment, facial reconstruction for children with Down syndrome, and limb-lengthening for little people (defined as a person with a medical or genetic condition that usually results in an adult height of 4 feet 10 inches [147 cm] or shorter). Cochlear implants are routinely performed in major medical centers, although some advocates of deaf culture continue to argue that such surgery is serving to eliminate a linguistic minority.³² Surgery to repair a cleft lip is standard of care for functional and aesthetic reasons, but reconstructing the face of a child with Down syndrome is highly controversial because it suggests that there is something inherently wrong with having certain facial features. Limb-lengthening procedures are fraught with complications; most little people function well with assistive technology and environmental modifications.

There are obviously differences among these procedures. Limb-lengthening seems to have some functional significance, whereas facial surgery for children with Down syndrome seems purely cosmetic. There is evidence that some children with cochlear implants learn to hear and speak better than do hearing-impaired children who focus solely on sign language, although on average neither group of hearing-impaired children learn as well as their non–hearing-impaired peers. Cochlear implants also carry certain risks such as meningitis.³³ Despite these differences in functional significance, there is also a critical similarity among these sorts of procedures. They do not save or prolong life, and there is relatively little evidence that they improve function more than do less invasive approaches. Indeed, they are typically offered to parents with the goal of making the child appear less different, in hopes of reducing the societal stigma or environmental inconveniences associated with having a disability. Thus, a child is subjected to a surgical procedure in many cases simply because some adults are uncomfortable with the child’s appearance. Such motivation conflicts with a basic tenet of the disability rights movement by suggesting that there is something inherently wrong with the disabled child that must be fixed.³⁴

Because these procedures are elective and alter the natural identity of the child, traditional consent procedures may not be sufficient to protect the best interests of the child. As noted previously, parents have broad decision-making authority with regard to rearing children, including the obligation to look after their child’s medical needs. Parents can give valid consent for their children to undergo a medical procedure if they have sufficient information, have the capacity to make decisions, and are free from coercion or undue influence. However, consent for surgical procedures too often focuses on parental understanding of the safety of the procedure itself, with less attention to alternatives and the long-term outcome for the child. For surgical “cures” of disability, it is crucial to examine these issues in the broadest possible context.

How should physicians counsel parents when presented with a surgical option to correct a physical anomaly that does not threaten the child’s life or health? In general, acting in the best interests of a child means protecting the child’s health and safety and creating an environment in which the child can achieve his or her full potential. For a child with a disability, is it best to leave the child alone and let him or her be potentially subjected to teasing, ridicule, and inconvenience because of the physical differences? Or is it better to allow surgery to normalize the difference and alter forever the body and thus the identity the child was born with, while potentially reducing the psychosocial trauma? The predicament is especially difficult because it is generally necessary to operate on children when they are young and their preferences are unknown.

The history of early surgery to augment gender assignment in children with ambiguous genitalia provides a cautionary example.^35,36 On the basis almost exclusively of the work of John Money, gender identity was thought to be malleable before age 2 years, and surgery was thus indicated to assign gender on the basis of appearance and chances for procreation. Since the 1980s, Money’s thesis has been attacked—most famously, by the key patient who served to buttress his theory. Some evidence suggests that adults who were surgically assigned the “wrong” gender suffered because of the operation and subsequent treatment, and many have reportedly changed gender as adults. Furthermore, some authors have argued that minimal interventions in early childhood are most appropriate, especially as tolerance and understanding of intersex genitalia grows in the United States.

Even though societal norms about disability are changing, the birth of a child with a disability is often met by parents with alarm, confusion, disappointment, and anxiety. In general, parents make decisions in the best interest of a child, but able-bodied parents of a disabled child face an added challenge: They may not understand the disability and may not have any personal experience with other people who have the same condition. Such families often harbor fears, embrace myths, and accept stereotypes about their child with a disability. In this context, the idea of surgery to ameliorate the appearance of disability can be alluring. One way to help families understand their choices is link them to an affected adult (or disability rights advocate) who can provide an insider’s view and help pierce the myths about disability. It may not be obvious how best to get input from the affected community, especially because affected persons have individual, varied opinions about their lives. One option is to consider parent support groups and adult advocacy associations, especially those devoted to specific disabling conditions. By employing a broader range of perspectives that includes the affected population, parents can better envision their child’s best interests.

Genetic Information

New genetic techniques present many ethical issues in DBP. Perhaps the most obvious is that each year seems to bring new possibilities for prenatal diagnosis, giving parents an opportunity to exercise the option of terminating a pregnancy and preventing the birth of a child with a disability. Although a woman’s right to an abortion has been protected by the 1973 Supreme Court ruling Roe v. Wade,^36a there is widespread opposition to abortion in the United States. Reasonable people can disagree on whether prenatal testing and termination reduces human suffering or constitutes disrespect for life. Some people believe that a fetus is a human being entitled to the same protections as any other liveborn person, and because people in the United States have generally rejected arguments for active euthanasia in children with disabilities, it is wrong to terminate a pregnancy on the basis of prenatal diagnosis. Other people support U.S. laws and custom that define life as beginning approximately when a fetus is able to survive outside the womb; if a woman has the right to choose to carry a pregnancy to term, then certainly she and her family can decide whether to use prenatal testing to help ensure a healthy baby.

Philosopher Peter Singer and others have offered a third approach.³⁷ Singer argues that personhood does not begin until sometime in the first year of life, when a human being is capable of interacting purposefully with the environment and begins to recognize the self as an independent being. According to this definition of personhood, termination of pregnancy and active euthanasia in the neonatal period for a baby with profound disabilities may be morally appropriate actions. However, the current consensus in the United States is that brainstem activity is sufficient to define life: Babies with anencephaly and individuals in a persistent vegetative state—conditions in which brainstem function may be present—are considered live persons, and state laws for brain death require absence of brainstem function.

From a disability rights perspective, recommending the termination of a pregnancy on the basis of prenatal diagnosis of a disability suggests that a life with a disability is less valued and perpetuates eugenic myths about the perfectibility of humankind. Parents of a child with spina bifida, for example, may be offended during a subsequent pregnancy if they are offered termination of a fetus diagnosed with spina bifida. On the other hand, other approaches to preventing disability enjoy widespread support in the United States. Few argue that preventing neural tube disorders through preconception consumption of folic acid, for example, undermines persons already living with spina bifida. Other preconception and prenatal interventions such as rubella vaccination or medical treatment of human immunodeficiency virus infection similarly have become standard practice to prevent subsequent death or disability.

Universal neonatal screening programs to prevent the neurodevelopmental consequences of congenital hypothyroidism or phenylketonuria also have widespread support and have substantially reduced the prevalence of mental retardation.³⁸ As neonatal screening programs for genetic conditions expand, however, new ethical issues arise. Some authors have argued that the high number of false-positive results in universal screening programs constitutes unacceptable morbidity for affected families, whereas others are concerned that identifying conditions with no simple intervention is unfair. Genetic testing in general often reveals information not only about the patient, but about the patient’s family and about future generations. As in genetic tests for specific individuals, universal neonatal screening often produces results that have implications for entire families, many of whom may not have consented to revealing such information or wanting to know such information. Once predicative genetic information is known, it cannot be “unknown,” and there is no simple way to offer extended family members individual testing without causing emotional discomfort or exposing the affected individual. This is a difficult situation particularly when the medical condition has no specific cure, and such issues are best considered before such diagnostic tests are offered. Currently in the United States, there is a consensus that universal neonatal screening should be restricted to conditions for which early interventions and treatments are available,^38a though a strong argument can be made for newborn screening to understand the natural history of metabolic variants of rare conditions.^38b,38c Furthermore, when a genetic diagnosis has implications for family members, physicians have some obligation to inform them of the possibility for testing and treatment.

Genetic information may also have implications outside of the strict health care context. For example, predictive genetic information can have negative implications in the areas of employment and insurance for patients and/or family members. Genetic discrimination can occur when either an employer or an insurance company uses an individual’s predictive genetic information to refuse employment or insurance opportunities out of a fear that a genetic marker indicates a chance that the individual will become ill or disabled or will have a child with a disability.³⁹ Although many legal commentators agree that such treatment should be viewed as illegal discrimination, courts have not offered definitive rulings on the issue. This may also be interpreted as good news: in view of the technology that has been available at least since the 1990s, it is reassuring that there have been no major cases of genetic discrimination.

Research on genetic issues adds yet another level of complexity to all of these ethical issues. Informed consent is particularly difficult, and provisions for communicating with family members must be determined ahead of time. For example, at least one state has considered requiring consent from all family members when genetic research is undertaken. Furthermore, storing samples and maintaining privacy require careful consideration, and researchers need to determine what to do if new information that would affect former research subjects becomes available. Finally, researchers may confront social and political consequences of their research results. Identifying genetic predispositions for stigmatizing conditions, particularly in vulnerable populations, can harm an entire population. For example, the genetics of cognitive ability has been related to race or ethnicity in nefarious ways since the 19th century.⁴⁰

Privacy and Confidentiality

One essential component of being human is the ability to protect one’s privacy. Although parents need to be deeply involved in the lives of their children, the need for privacy grows with age and independence through the school-age and teen years. One role of pediatric health providers is to help parents understand the developmental needs of growing children and adolescents. For medical professionals, there is the added responsibility first suggested by Hippocrates to protect the “sacred secrets” that patients reveal in the course of obtaining health care. Like all physicians, developmental-behavioral pediatricians must protect the confidentiality of patient and family information according to state and federal laws, such as the Health Insurance Portability and Accountability Act (HIPAA). As mental health professionals, however, developmental-behavioral providers may be held to a higher standard when and if they provide psychotherapy. HIPAA and most state laws include special protections for medical records of mental health therapists; for instance, only treatment summaries may be shared with insurers, families, and other members of the health care team.

More commonly, developmental-behavioral pediatricians face dilemmas in protecting the confidentiality of their adolescent patients.⁴¹ In general, parents or guardians must consent to treatment for any person younger than 18 years, and such consent also brings the right to control medical information and make treatment decisions. Nearly every state provides exceptions for certain conditions regarding when adolescents can consent for care and thus control their own medical information. Such conditions typically include sexually transmitted infections, birth control, pregnancy, and, in some states, substance abuse treatment. The public health rationale for such laws is that adolescents are more likely to seek appropriate care if they believe that medical professionals will protect their confidentiality; in most such case, the medical team cannot share information about these specific conditions with anyone, including parents, without the teenaged patient’s consent. In practice, most adolescent patients are able to reveal such important diagnoses to their family with the practitioner’s support, especially because medical bills may eventually reveal the nature of the diagnosis.

State law protects adolescents’ confidentiality only for specific conditions, but it is typically in the best interest of the patient that he or she feels comfortable discussing any topic with the practitioner under the promise of confidentiality. Many parents recognize the value of their child’s having access to accurate, professional medical advice and would agree to the practitioner’s request to maintain confidentiality. Substance abuse is a particularly difficult issue, because the medical practitioner must balance preserving the adolescent’s trust with the need to protect the adolescent’s health by informing the parents of particularly dangerous behavior. Most practitioners will not respect the adolescent’s request for confidentiality when suicide is a possibility, and most state laws either allow or compel the practitioner to break confidentiality when a patient reveals the intention to hurt another individual.

Developmental-behavioral practitioners are typically adept at handling complex family communication issues. However, in view of the legal and professional consequences of breaking confidentiality, it is crucial to understand state law and to work with legal and/or risk management professionals in difficult cases.

The Legitimacy of Behavioral and Learning Disorders

A distinction continues to be made between developmental disorders and behavioral disorders, despite ample evidence of their considerable overlap. After centuries of blaming parents for disabilities, nearly everyone today understands that Down syndrome and cerebral palsy are medical conditions caused by natural processes. Mental illness in the United States, on the other hand, continues to carry the stigma of personal responsibility; for example, depression is different from diabetes, or so it seems to many individuals, despite research establishing the biological basis of behavioral and learning disorders. The popular media both stimulate and reflect public opinion in articles that question the biological legitimacy of disorders such as ADHD or learning disabilities. Such opinions are fueled by relatively vague definitions and limited diagnostic techniques for many disorders, by the “hidden” quality of these disabilities in comparison with cerebral palsy or Down syndrome, and by the complex interplay between biomedical and psychosocial manifestations of these disorder.

There is public controversy over both the diagnosis and treatment of common developmental-behavioral disorders. Increases in the diagnosis and use of prescription medications for ADHD, for example, has led to concern that physicians are overmedicating children. Although there are certainly cases of inappropriate diagnosis and treatment, most evidence suggests that the rise in prescriptions in stimulant medications reflects improved diagnosis and access to care. Indeed, some children with ADHD do not receive proper medical care despite overwhelming evidence of the value of medication in treating the core symptoms of inattention, impulsivity, and hyperactivity (for more detail, see Chapter 16).⁴² On the other hand, many children with behavioral disorders are being treated with four or five psychotropic medications; in view of the lack of data for such polypharmacy, the quality of care these children are receiving must be questioned.

Such unevenness in the diagnosis and treatment of developmental and behavioral disorders may reflect a critical national shortage in well-trained pediatric mental health professionals, particularly those who are bilingual and bicultural. According to the 1999 Report of the Surgeon General on Mental Health, 10% to 20% of children in the United States meet diagnostic criteria for a behavioral disorder, but fewer than one in every five of these children receive appropriate mental health treatment. On the other hand, access to services may partly account for the evidence that white boys attending private schools are particularly likely to receive a diagnosis of specific learning disabilities.⁴³ Families with resources to obtain proper evaluations are better able to aid their children in obtaining accommodations in school and on standardized tests.

Access to quality medical care in general remains a persistent and peculiar problem in the United States, where more than 16% of the gross national product is spent on health care and yet 46 million residents have no health insurance. Most other industrialized nations spend less than half per capita as the United States but manage to provide medical care to every resident. As many as 10 million children are not covered by health insurance in the United States, despite gains in the economy and expansions in state-funded health insurance programs since the 1990s. Such children are more likely to suffer from a variety of medical conditions than are their peers with adequate insurance, and mental health services are among the most difficult to secure. Even when children do have insurance, many parents lack access to health care and cannot provide an optimal home environment when they are struggling with chronic illness.

Partly because of poor access to care, children living in poverty are more likely to receive diagnoses of developmental and behavioral disorders. Poor child and family health are often compounded by inadequate nutrition, lead exposure, family violence, unstimulating environments, and low-quality child care and education settings. Discrimination on the basis of race, ethnicity, culture, and disability continue to disproportionately affect families struggling with poverty, and indeed such bias typically contributes to family circumstances in the first place.

Subtle and inadvertent discrimination may also play a role in the diagnostic labels applied to certain children. Because of the lack of biological markers for most developmental and behavioral disorders, clinical judgment may be subject to bias. For example, although the diagnosis of mental retardation includes the use of standardized testing instruments, it remains a clinical diagnosis,⁴⁴ and mental retardation is much more likely to be diagnosed in black boys than in children of other groups.^45,46 Although such diagnostic labels may lead to individualized educational services, such labels frequently lower expectations and contribute to poor achievement.⁴⁷

More in general, there is considerable flexibility in the diagnosis of some developmental-behavioral disorders, and clinical decisions often have important implications because specific diagnoses led to access to educational and financial support. In some school districts in Florida, for example, a diagnosis of autistic disorder qualifies a student for services under the Individuals with Disabilities Education Act, whereas the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified does not. Parents who recognize the value of a specific diagnosis may appropriately advocate for decisions that provide the most support for their child, and the developmental-behavioral practitioner must negotiate such diagnoses within the bounds of best practice.

Although diagnosis of developmental-behavioral disorders only occasionally requires negotiation with parents, treatment is often a matter of some contention. It is a relatively straightforward matter that the health care practitioner should refuse to prescribe medication when it is not indicated, even if the family or schoolteacher seems eager for the child to begin pharmacotherapy. The more difficult situation is that in which families oppose medication despite abundant evidence that the child would benefit from it. Physicians are obligated to report instances of medical neglect to state authorities, but whereas failure of a parent to give insulin for diabetes would prompt state intervention, it is unlikely that anyone would force a family to provide methylphenidate for ADHD. In the future, U.S. society may view behavioral disorders as sufficiently legitimate to require appropriate treatment in all cases; until then, the developmental-behavioral practitioner must educate the family and hope that patience and follow-up are sufficient.

Although some families refuse treatment with medications, many more seek complementary and alternative medical treatment. Parents are particularly eager for simple solutions to chronic conditions such as autism and cerebral palsy, and the desire for “natural” treatments appears strong for almost all behavioral and developmental disorders. For most alternative treatments, there is little evidence of safety or efficacy, and many are quite expensive. Complementary and alternative medicine is an area in which more evidence of benefits and adverse effects is needed, and some research is in progress (for more details, see Chapter 8E). Although the practitioner may be frustrated by family’s attention to alternative treatments, it is important to remember that many improvements in diagnosis and treatment of developmental and behavioral disorders have resulted from families’ advocating for their children and challenging the status quo. By keeping an open mind and working with families over time, the developmental-behavioral practitioner can help families conserve their resources and focus on treatments that are most likely to benefit their children.

Developmental-Behavioral Practitioner as Scientist and as Advocate

There can be little doubt that commitment to high-quality scientific research is one critical component to solving many of the dilemmas arising in the clinical practice of DBP. As the biological understanding of developmental and behavioral disorders grows, so should the legitimacy of diagnosis and treatment. Better diagnostic tools can reduce bias, and improved treatment can improve collaboration between parents and clinicians. Understanding specific causal mechanisms should lead to prevention and better treatment and can even help build a widespread consensus that every child and family deserves access to high-quality mental health treatment (for more detail, see Chapter 3). Even if not directly involved in research, practitioners can serve as an educator and ambassador: They are obligated to teach families and the public about scientific principles that guide their practice and to continue to better understand the causes and treatments of behavioral disorders.

Advances in science also lead to new ethical dilemmas, of course, as suggested by the possibilities of innovative genetic and surgical techniques. Furthermore, the advantages of new medical interventions tend to accrue to those who already enjoy the best health and most wealth, thus further exacerbating underlying inequities in U.S. society. This suggests a continuing role for the developmental-behavioral practitioner as an advocate for broader social change. For some practitioners, this may mean participating in local school and child care centers or providing community education opportunities. Others may engage the legislative process to improve access to health care, reduce economic inequity, or improve professional standards. Practitioners should at least be informed about critical child health issues and should recognize that advocacy can be learned just as can any other skill in medicine.^47a

The roles of scientist and advocate can conflict in some cases. Developmental-behavioral practitioners are frequently called upon to provide objective opinions about social issues such as the effects of divorce, witnessing violence, corporal punishment, or being raised by same-sex parents on children. Such issues are highly emotional and are not easily subjected to prospective, double-blind, controlled trials. There is value in adhering to the limits of this profession in providing advice about topics, explaining the levels of confidence that practitioners can achieve in various study designs. On the individual level, it is critical to recognize how practitioners’ life experiences and personal opinions can affect their advice to families, as well as their interpretation of scientific data. Furthermore, professional ethics call for placing the well-being of the patient before their own personal views about controversial topics. Despite holding strong opinions about abortion or homosexuality, for example, each developmental-behavioral practitioner is called upon to practice medicine in nonjudgmental ways that respect individual decisions.

This is not to suggest that practitioners are not also obligated at a policy level to work to build consensus on critical issues in DBP. For example, there is ample evidence that children who grow up in poverty experience profound developmental and behavioral consequences, and there seems to be broad social consensus that whatever the personal and social causes of family poverty, children should not suffer. Although much political and academic debate focuses on issues at the beginning and end of life, not nearly enough attention seems to flow to the children who grow up in poverty. For example, resources continue to be devoted to the criminal justice system, whereas prevention programs that support families, improve child care, and improve mental health are chronically underfunded. International comparisons are instructive: Most European nations, for example, have created public systems that provide high-quality medical care to all children and buffer the effects of poverty on most children. The increased burden of illness for children of low socioeconomic status and of ethnic or racial minorities is unacceptable, and it is only partly explained by decreased access to care. At the highest level of moral reasoning, the developmental-behavioral practitioner is an advocate not just for the child in the office but for the well-being of all children.