Ronald P. Strauss
Ethical issues that arise in the treatment of children with craniofacial anomalies often require health professionals, patients, and families to make difficult decisions. In this chapter, we examine the nature of ethical dilemmas and the principles that may guide ethical decision-making. A number of selected issues that affect craniofacial care are presented, but rather than providing answers to ethical dilemmas, we pose questions that readers can use to examine their own values and principles.
Ethical decisions involve questions of meaning and call for a distinction between what is “right” and what is “wrong.” In the conduct of clinical care, judgments about fairness, human duty, and personal morals are ethical decisions. These are not technical questions that are meant for experts in ethics; rather, health professionals regularly make ethical decisions in clinical practice (Beauchamp and Childress, 1994; Jonsen et al., 1992).
Biomedical ethics has received considerable attention because clinical practice involves a professional who is called upon to decide or recommend “what is right” for a patient. Decisions that impact the lives of others, particularly in the context of healthcare, have stimulated substantial public and professional controversy. Biomedical ethical issues that generate public and media attention highlight general social and moral issues. In some regards, ethical issues in craniofacial care are particular cases of social and moral decisions that occur in the conduct of other human matters. For example, issues that relate to the access to costly dental services are merely a subset of the issues that relate to how a society manages access to scarce resources. The ethical discourse will consider how individual benefit and the needs of the society can be fairly balanced. In the conduct of ethical decision-making, it may not be possible to both meet the desires of individuals and satisfy the needs of the society at large; however, both perspectives are recognized, and an equitable resolution is sought.
Health professionals have dealt with ethical decisions for many years and have sought to define guidelines for practice in their written codes of ethics (Beauchamp and Childress, 1994). While these codes provide a statement for a profession, they may not provide guidance to individual health professionals who face an ethical dilemma in their clinical practice. When such quandaries occur, a professional must first identify the ethical issue involved. While this seems simple, the routine of clinical practice may hide an ethical issue or the clinician may not consider the ethical aspects of the management decisions being made. Awareness that an ethical dilemma is present is a first step in making a decision. In some settings, the complexity of ethical problems makes ethics consultation useful. Many medical centers have an ethics committee or a consultant ethicist. Consultation may be informative, but the ultimate responsibility for a decision remains with the health professional, in consultation with the family and patient. Often, an ethics consultation will be used to outline the issues, various possible viewpoints, and the possible courses of action.
The values of health professionals, patients, and families determine their interpretation of ethical principles of autonomy, beneficence, and nonmaleficence. These principles may be complementary or in conflict. Autonomy implies the ability of an individual to determine how he or she is to be treated by others. It means that a person can freely define the healthcare treatment, outcomes, and process to be used. Autonomy implies the ability to make reasonable decisions in one's selfinterest. Beneficence is a principle by which a professional provides what he or she believes is best for another person. In the case of healthcare, a professional will judge what form of treatment is offered in a patient's best interest. Sometimes what the patient (or family) sees as the best course of action may not agree with the professional's vision of what would be in the best interest of the patient. When a patient and a professional hold differing views of the right course of action, who is to judge? Health professionals are often seen as being held to a principle of nonmaleficence, or the expectation that they will do everything possible to avoid harm, compared to creating good or well-being. In the surgical care of children with craniofacial anomalies, should the surgeon provide an operation to a patient because the family or patient expresses that wish? Should the surgeon provide the patient only with the treatment options he or she believes are optimal and disregard the other possibilities? Should a surgeon who does not believe that he or she can perform an operation without significant risk of harm refer the patient elsewhere? Issues of autonomy and beneficence arise frequently in communicating surgical treatment plans and in negotiating a course of care.
Another concept that affects clinical decision-making is competence. Competence implies the legal ability to make healthcare decisions. Adults are assumed to be competent unless their legal decision-making rights have been granted to others, such as a legal guardian or one with power of attorney. Children are not generally considered competent to make independent decisions without a guardian's involvement. The legal age of competence varies considerably across and within nations; however, some pediatricians and ethicists have used the concept of a mature minor, in which an adolescent or child is judged to be developmentally capable of making a decision about his or her own care. On occasion, decision-making authority is granted to a legal minor based on his or her ability and desire to decide. Confidential communications between health professionals and adolescents about birth control, sexually transmitted diseases, and substance use may affect how involved the parent or guardian will be in clinical decision-making about the minor. Individuals who because of limited intellectual capacity or disabilities are unable to engage in the informed consent process may be considered not competent.
The difference between legal age of competence and the mature minor concept highlights the idea that there sometimes is a difference between the law and ethics. It may be legal to allow parents to decide about a 15- year-old patient's planned craniofacial surgery; however, it may be ethical to empower the teen to actually make the treatment decision. It may be legal for a professional to perform a procedure on a patient, but it may not be ethical for him or her to do so.
Justice is a complex principle that involves three related concepts: treating people fairly, giving people what they deserve, and giving people what they are entitled. These concepts may not be in agreement; however, they are tied to distributive justice or approaches to allocate resources in a society (Churchill, 1987). Issues of justice may be found on the macroallocation level, which examines how goods and services are rightly distributed in the society at large. Microallocation issues may affect how a practitioner decides to allocate attention or time and the conduct of clinical care. In the case of craniofacial surgery, the costly nature of care and the scarcity of trained personnel contribute to this being seen as a scarce resource. Various microallocation approaches may be proposed to decide who gets craniofacial surgical care and who does not. Does the sickest person receive care first? Does the wealthiest or the most valued member of society receive care first? Is care distributed on a first-come, first-served basis or by merit? Who will determine? Elements in microallocation decision-making include (1) medical indications (who is most likely to appreciate a medical benefit or who is in greatest need), (2) patient preferences (what the patient desires in care), (3) quality-oflife aspects (how care or lack of care will affect a patient's ability to experience comfort, security, and function), and (4) contextual features such as social, cultural, economic, and legal factors (Jonsen et al., 1992).
It is also important to recall that medical practice deals primarily with the doctor-patient relationship, in which the doctor's primary goal is to meet the needs of a patient. On a public health or policy level, health professions are called upon to protect society and to maxime justice. These goals may differ, especially in organizations where the health professional may be asked to meet patient, societal, and market/organizational goals.
Ethics is not only an abstract endeavor; rather, it illuminates real-life problems and guides decision-making. Examples or cases are often useful in making ethical issues real and allowing for debate and consideration of various options (Strauss, 1995).
Gatekeeping
In the past, many children with major craniofacial deformities did not survive or had a markedly reduced quality of life. This happened because of limitations in the ability to offer nutrition, surgical care, and postoperative assistance (Scheper-Hughes, 1990). The success of neonatal intensive care units, anesthetic advances, and changes in craniofacial surgery have made it possible to treat many serious defects that may once have been untreatable, even lethal. Medical education socializes health professionals and surgeons to be activist in their responses. They are trained to intervene in deformities and seek to repair or alter disabilities when possible. The decision not to offer care or to withdraw care already started is always difficult and places the health professional in struggle with established healing values. Clinical activism expressed as the desire to fix disabilities orients the professional toward providing craniofacial surgical treatment whenever possible.
The professional's role as a gatekeeper to medical and surgical services is critical as the health professional serves as an agent for the society in making such care decisions. The gatekeeper role involves exerting control over the availability of clinical treatment. Furthermore, the gatekeeper explains care to the parties that pay for treatment. The gatekeeper role for clinicians raises some difficult ethical questions (Strauss, 1983). Health professionals must consider whether infants with major and handicapping craniofacial deformities routinely should be offered treatment in the neonatal intensive care unit. Surgeons may find themselves asking whether severely affected children should always receive craniofacial surgical care. They may search for criteria that might be used to decide when to offer such care. Furthermore, questions may arise about who should make the decision to treat or not to treat. Are decisions best left to the parents, to the surgeons, to the ethics committee, or to multiple parties? Indeed, surgeons will likely ask themselves to what extent should the health professional or surgeon direct the use of scarce and costly resources (Ward, 1995). The role of allocating treatment resources raises many questions of distributive justice. Surgeons must puzzle their role in the healthcare system and consider how many resources can be directed toward any individual child.
Several factors may encourage health professional gatekeepers to be overly activist about providing care or to offer access to surgery even in possibly risky or costly situations. Health professionals may consider themselves charged by the society with the role of normalizing children born with defects. This sense of mission may be enhanced by the desire to perform heroic, novel, and highly technical treatments. The health professional's gatekeeper role may also call upon a clinician to consider quality-of-life factors. Knowledge of the social and psychological implications of major craniofacial deformities may impact clinicians' willingness to offer treatment: they may be willing to recommend care in the hope that nonbiological benefits may result from appearance or functional change.
The role of health professional gatekeeper often implies an ethical conflict of interest. In many settings, the health professional both controls access to medical services and is financially rewarded for providing care. This is most evident in fee-for-service payment contexts where the health professional is compensated for the amount of treatment provided (Hall, 1992).
Capitation payment mechanisms, in which a health professional is uniformly paid for care of patients enrolled in a plan, tend to diminish overtreatment or excessive treatment. The financial reward system of a capitation plan will not reinforce activism. Some managed care plans limit referrals to specialty services by financially rewarding generalists who deny referrals. This may result in too few referrals for craniofacial surgery, even when care is warranted. Health professional compensation mechanisms exert pressures on clinical decision-making and may place stress on ethical roles. When health professionals and healthcare payers are thoughtful in controlling treatment activism, the gatekeeper role is working well.
Informed Consent, Disclosure, and Conflict Resolution
Nowhere in healthcare is information more critical than in the seeking of informed consent (Beauchamp and Childress, 1994). Questions of health professional-patient- family communication are central to the informed consent process. Health professionals must consider how much detail should be told to patients or families. Does too much detail about risk scare a patient? What complications does a family need to be informed about prior to surgery? Should potentially lethal complications always be communicated? In seeking informed consent, the health professional must decide how much information is needed and can be understood by a patient or family. While there are many examples of informed consent being conducted so that all possible negative outcomes are listed, this may not be in the best interests of the patient or family. Overly graphic or extreme forms of truth-telling may enhance expectations of postoperative pain or disability.
Informed consent may be particularly challenging when cultural, language, or educational differences exist between the health professional and the family. When communicating across social differences, special attention must be paid to ensuring that information is not only provided but also understood (Kleinman, 1979). Families may not comprehend the language of biomedical thinking and often do not understand statistical risk. Special care may be needed to explain the recurrence risk of an anomaly or the chance of a negative surgical outcome to a patient who does not fully understand the meaning of percentages. Ethicists have sometimes wondered if fully informed consent is ever possible. They have considered whether a surgeon can ever accurately convey the likelihood and quality of postoperative pain to a patient. Can the surgeon really know how or what the patient will feel? The limitations of linguistic ability to describe sensations may be felt by clinicians seeking to be fully informative.
Ethical dilemmas have arisen when patients or families have asked a health professional not to inform them about a specific issue. This may occur when a parent does not want to be told about environmental or genetic causes of an anomaly in their child or in a family that does not wish to learn about the recurrence risk of a condition during genetic counseling. In such cases, the health professional may find it difficult to possess important information that the family seeks to avoid or deny. Issues of privacy and confidentiality have also arisen in the counseling setting. Are both parents always informed of the causes or recurrence risks during counseling? What is the potential family harm in truth-telling? Do all family members have a right to know about etiology, or is there ever a right to privacy, even within a family? At what point does the child or a spouse need to be informed of the likelihood of having future offspring with a genetic defect?
The transfer of information about surgical care may be a concern in the teaching and training hospital setting. Should students and residents make it clear to patients that they are inexperienced and in training? Should it be apparent to families exactly who will be making cuts or suturing their child in the operating room? Does seeking care in an academic health center imply that students and residents will be care providers. Issues of truth-telling, of informed consent and of authority to make healthcare decisions occur on a routine basis in professional practice.
Most health professionals see their principal roles as being within the individual doctor-patient relationship. The health professional is seen as having a powerful personal relationship with a patient and the family. Health professionals are taught to see themselves as advocates for the child patient as well as for the parents. They may have difficulties when the interests of patients and parents do not coincide. For example, in a situation where a child has a serious but partially correctable craniofacial defect that would require risky and costly surgical care and the family expresses a wish to avoid treatment, the clinician may be placed in a difficult position. Is the parental decision in the child's best interest? Whose interests does the health professional serve when there is a determination to make? Legislative and judicial decisions may become central in guiding such medical decisions and in defining the limits of parental autonomy. The surgeon may ask whether it is his or her role to argue for care when a family is riskaverse. There are many examples of health professionals who have sought court-sanctioned permission to provide care on a minor when the family is unwilling to authorize treatment. On occasion, families with religious beliefs that preclude treatment (i.e., Jehovah's Witnesses and blood transfusion) have been forced by court order to comply with surgical recommendations. Does the reverse occur? Can families force a craniofacial surgeon to provide care that he or she believes is unnecessary or too risky? Courts have not forced unwilling surgeons to provide care; however, one might speculate how often craniofacial surgeons are pressured by parents to operate when the expectation of positive clinical outcomes is minimal.
This discussion of information sharing and potential conflicts might be mistakenly taken to suggest that parents, children, and health professionals are often in a contentious relationship. However, this would be inaccurate since most families and health professionals work harmoniously to achieve common goals that are guided by the child's best interest. Such harmony occurs when there is mutual respect and careful information sharing that avoids persuasive or emotional language.
Allocation of Resources
In the realm of craniofacial care, ethical dilemmas occur not only in the direct provision of craniofacial health services but also in the decisions that guide the healthcare distribution, organization, and policies.
One must first consider that every society has a means to allocate resources. In the United States, we have long sought to understand the role of the healthcare professional in the allocation of care and the control of cost. It is critical to remember that behind a society's allocation of resources lay values, political forces, and a vision of justice. Decisions about how scarce or limited resources should be distributed reflect a society's perspective on equity and justice (Churchill, 1987).
The definition of what is a “just” system for the distribution of services or products varies across countries and cultures. The choice of an allocation approach will determine who receives services and at what cost. Several individual allocation approaches have been promoted as “just.”
The open-market approach would have services offered to each person according to ability to pay. This approach expands the variety of services available to the wealthy, while limiting access to less affluent populations. The merit approach would distribute services to each person according to their efforts to avoid having need. Under this approach, persons who do not smoke tobacco, who abstain from alcohol consumption, and who maintain a healthy lifestyle might be offered access to health services and those with less merit would not. This approach would deny care to precisely the segment of the population most likely in need of health services. The social worth approach would give services to persons according to the degree to which they contribute to the society. More highly valued members of society would have greater access and choice of services. Decisions about the value of an individual to the society are loaded with questions of bias, prejudice, and stigmatization. The social worth system was briefly used to allocate kidney dialysis machines in the 1960s in Seattle; however, the basis for establishing social worth was very controversial. This approach has been effectively employed only during wartime or emergencies. The rights approach would see access to services or health care as a right, at least for each individual to have equal access to basic care according to the need for services. Two other schemes have been proposed to allocate resources. One scheme uses chance and would see healthcare given to each according to luck or according to a lottery. Another approach would have scarce resources delivered on a first-come, firstserved basis, according to place in line. A combination of approaches may be used, e.g., when a basic level of need is first met and then potential recipients enter a lottery.
To understand distributive justice in the United States, one might ponder how this society allocates resources such as food, primary education, secondary education, and luxury cars. It becomes immediately obvious that the United States employs a mixture of the various allocation approaches reviewed.
What forces guide resource allocation to craniofacial care? Several social considerations may influence how resources will be allocated to craniofacial care. Decisions may be made in the context of age, in which there is a competition for resources between younger, less powerful interests and older, growing, and more powerful political segments. Furthermore, the visibility of a clinical condition may be a real factor in resource allocation decisions. Visible defects are more likely to affect voter and legislator emotions. Community awareness and human interest are factors that impact social decisions and draw media attention to an issue. Anticipated voter behaviors are probably the single most useful predictor of legislative decisions.
Decisions about the allocation of funds to craniofacial care will be made in the context of limited resources in societies where demands on the healthcare system exceed the system capacity. Fundamental ethical questions will be raised in these deliberations. Advocates for craniofacial care will need to respond when asked about how to use limited dollars for healthcare: e.g., when dollars are limited, should they be spent on population-based prevention or should they be spent on the treatment of relatively rare but disabling conditions? In considering whether limited resources are best spent on prevention or on treatment, some would state that health and economic resources are most rationally invested in maternal and prenatal healthcare and on established preventive regimes. For example, it could be argued that prevention of fetal alcohol syndrome is preferable to focusing resources on its treatment. However, not all conditions are preventable and some preventive methods or approaches have had greater power than others. In making resource allocation decisions, it will be important to consider the efficacy and cost of preventive initiatives. In the case of major craniofacial deformities, current resources might best be spent on research into the prevention of defects. This might involve developing programs that encourage maternal health and nutrition, genetic counseling, screening, and therapy. However, the major craniofacial disorders are rare and currently often of unknown etiology. Given the paucity of preventive craniofacial research and effort, resources are currently focused on clinical treatment.
Health professionals do not ask questions about social justice when encountered with a specific patient's needs. Few would find it reasonable for a clinician to worry about whether the society's resources are better spent on public health or immunization than on expensive surgical reconstruction. Most citizens would agree that public dollars would be better invested in the realm of prevention, yet when faced with the denial of reconstruction to the individual patient due to limited resources, the decision is often to provide care.
Values on the worth of the individual are strongly held, and rationing of U.S. healthcare has proven to be a difficult prospect, though it happens in a de facto way regularly. When rationing of healthcare occurs, it may be through limited insurance policies, total lack of health insurance coverage, or a scarcity of providers or facilities. The issues arise when payment is not available and when care is very costly. If patients cannot themselves afford care and insurers are unable or unwilling to pay, then the true impact of scarce resources becomes apparent.
Low-income and minority populations do not uniformly have access to high-quality health services in the United States. This is reflected in their relatively lower health status when compared to more affluent or nonminority populations. In a society where marked differences in access to healthcare exist, one must ask whether the ability to pay is the most just mechanism for deciding who is to receive care. In the case of major craniofacial deformities, should ability to pay for expensive services guide their availability? In the case of costly procedures that benefit very few persons, political advocacy seems unlikely to be a large force in guiding insurance coverage. Principles of social justice do come into play when decision-makers consider how much quality of life would decline if care were denied or how much gain could be achieved by funding treatment. These decisions are difficult to make, and cost-benefit thinking may be used in making them.
Some of the most difficult resource distinctions occur around the relative worth of social investments in various diagnoses. Why is a cleft palate repair generally seen as cost-effective, while some question a cloverleaf skull deformity repair? Is it that we expect a better outcome from the cleft lip/palate surgery? Or is it that the frequency of cleft lip/palate demands repair, while the scarcity of major craniofacial syndromes does not? If the society can afford to provide cleft repairs, why then not afford craniofacial repairs? Clearly, questions of the magnitude of cost exist. The costs as calculated cannot be merely the direct costs of several years of surgical care; rather, they must also include the costs of parental work loss, of special education, of rehabilitation services, of mental health assistance, of lost patient productivity, and of mental anguish. These costs are generally not measurable, yet they constitute a real part of the losses and quality of life realized. Cost awareness and the need to control the cost of healthcare have affected the willingness to incur extraordinary medical expenses. Cost-benefit calculations have been applied to treatment decisions, but often these calculations break down when the possible denial of care to a specific child becomes a reality. The cost of correcting major craniofacial conditions may sometimes be extremely high but must be weighed against the social and humanitarian costs of not providing access to care. In the current context of declining health dollars and limited resources, it is predictable that some rationing decisions will be made. The allocation approach to be applied is unclear, but it will determine who will be cared for and who will not.
Prenatal Diagnosis
Prenatal diagnosis of major craniofacial or genetic conditions is increasingly common (Bosk, 1992; Eng et al., 1997). The use of continuous real-time ultrasound allows for the early visualization of fetal defects. Techniques such as amniocentesis, genetic screening, and risk appraisal may provide the family and health professionals with information about a child's craniofacial defect prior to birth (Rothman, 1986). Knowledge of a condition during the prenatal period implies the possibility of choice relative to the birth of a child with a defect.
Knowledge about defects prior to birth has caused medicine to face profound questions about how we as a society will deal with prenatal information about serious craniofacial deformities (Murray and Botkin, 1995; Roberston, 1986). Will there be significant pressure on mothers to abort such fetuses in order to avoid the cost and pain of corrections? Will there be rewards for parents who decide to save the society the cost of treatment? Will we stigmatize and harass parents for seeking to terminate a life, regardless of quality, by abortion (Lapham et al., 1996)?
The realities of the high cost associated with the survival and treatment of children with major craniofacial defects may affect how we perceive a parent decision to abort a fetus with an identified deformity. A decision to bear such a child implies major expenditures for the parents and/or the society.
Social values relative to aesthetic and functional conformity may also be challenged by prenatal diagnosis of defects (Wexler, 1995; Wertz and Fletcher, 1989). Will all deformed infants be aborted? How major a deformity must there be to rationalize an abortion (Blumenfeld et al., 1999; Eiserman and Strauss, 1999)? Will there be less tolerance of different appearance or identity if all those with different identities are aborted or corrected? To what extent does living with a range of appearances and disabilities benefit a society? Some would argue that medicine should exert itself to make children look as normal as possible to meet social expectations. Others would say that instead of changing the child or his or her appearance, the focus should be on changing social values to encourage the acceptance of those who appear different. For the moment, there is little question that those who look different are treated as less than equal and often are stigmatized (Fiedler, 1978).
Concluding Comments
The care of children with craniofacial conditions raises many issues that involve ethical and moral choices. In this chapter, we have examined the principles that support ethical decisions and introduced concepts such as autonomy, beneficence, nonmaleficence, competence, justice, and informed consent. Selected ethical issues were considered, including professional gatekeeper roles, informed consent and truth-telling, allocation of scarce resources, and implications of prenatal diagnosis.
These were chosen because they demonstrate the range of ethical dilemmas that arise in craniofacial care. Other issues that might have been examined include the following:
· The relationship between risk to the child and benefit
· Professional-peer relations and quality of care
· Issues in surgical and clinical research
· The neonatal intensive care unit as a locus for ethical decisions
· Quality of life with or without surgery
· The control of sophisticated medical technology and the introduction of new techniques
The ethical dilemmas and issues raised in this chapter stimulate moral and personal questions to which there are rarely easy answers. If the answers were apparent, they would not be ethical dilemmas or quandaries. However, health professionals must be prepared to deal with such questions and must find satisfactory answers to the ethical dilemmas that they encounter in their careers. One would hope that there is willingness to consider the complex issues suggested here and that clinicians and those engaged in healthcare financing and policy making will participate in a lively discussion of the ethics of craniofacial care. Toward that end, each participant in the conversation might pose the following questions:
· What moral issues are involved?
· What varied options are possible?
· What are the ramifications of each of the options?
· Does this decision relate to larger ethical questions?
· Is there a philosophy/value system that guides your ethical actions?
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