Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts.     

“Family Matters”: A Conceptual Framework for Genetic Testing in Children

Genetic testing in minor children presents a complex ethical and social problem. Current guidelines state that genetic testing of children is recommended only under circumstances where a clear medical or psychosocial benefit to the child can be demonstrated. Because of the difficulty in determining a psychosocial benefit, the discussion about genetic testing of minors ultimately tends to focus on who has the right to make the decision and whose right to autonomy is jeopardized, the parent's or the child's, when there is no identified medical benefit. Historically, a western bioethics paradigm, Principlism, has been used to guide genetic counseling sessions and genetic-testing guidelines for minors. This bioethics paradigm is guided by the principles: respect for autonomy, beneficence, nonmaleficence, and justice. Genetic testing in children, when viewed through a traditional bioethics filter is limited by its focus on the individual because children are not only individuals, they are also integral parts of a larger social context, that of their family. Because this bioethics paradigm places a strong emphasis on individual autonomy, the family's beliefs and values and the parents' concern for their children may be overshadowed by the medical community's attempt to preserve the child's "right" to an autonomous decision about genetic testing. The purpose of this paper is to present a theoretical and ethics-based conceptual framework that may be useful in the development of genetic counseling interventions.     

Ethical Issues Raised by Epigenetic Testing for Alcohol,Tobacco, and Cannabis

Epigenetic testing is one of the most significant new technologies to provide insight into the behavioral and environmental factors that influence the development and reconfiguration of the human genetic code. This technology allows us to identify structural changes in the genome that occur due to exposure to a wide variety of substances including alcohol, tobacco, and cannabis. The information gained can be used to promote health but it also raises a variety of ethical, legal, and social issues. As society progresses in understanding the epigenetic mechanisms of substance use and addiction, there is an opportunity to use these use this knowledge to enable medical, behavioral, and environmental interventions to alleviate the burden of addiction. This article describes the ethical issues associated with use of epigenetic testing for alcohol, tobacco, and cannabis and the implications of this technology. A further review of the scientific basis for the relevance of epigenetics is found in the accompanying article by Philibert and Erwin in this issue. Copyright © 2015 John Wiley & Sons, Ltd.     

The question not asked: the challenge of pleiotropic genetic tests

Nearly all of the literature on the ethical, legal, or social issues surrounding genetic tests has proceeded on the assumption that any particular test for a gene mutation yields information about only one disease condition. Even though the phenomenon of pleiotropy, where a single gene has multiple, apparently unrelated phenotypic effects, is widely recognized in genetics, it has not had much significance for genetic testing until recently. In this article, I examine a moral dilemma created by one sort of pleiotropic testing, APOE genotyping, which can yield information about the risk of two different conditions -- coronary heart disease and Alzheimer's disease. A physician administering APOE testing for the beneficial purpose of assessing the risk of heart disease may discover medically useless and socially harmful information about the patient's risk of Alzheimer's disease. I explore how much providers should disclose to patients about pleiotropic test results and whether patients are obligated to know as much about their genetic condition as possible.     

Ethical issues in cochlear implant surgery: an exploration into disease, disability, and the best interests of the child

This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We explore whether that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption.     

人类辅助生殖技术中的诊疗策略及伦理

人类辅助生殖技术是医学领域的一门新兴学科,随着此项技术的逐步成熟,也伴随着出现了各种诊疗及伦理问题。探讨对不孕症夫妇诊疗过程中的心理关怀与策略、人类辅助生殖技术治疗过程中的诊疗策略及其引起的伦理及相关法律等问题,认为在实施此项技术的过程中需要更规范、合理和人性化的诊疗策略。     

医师不得拒绝诊疗的法律与伦理问题研究

医患纠纷频繁发生和医患关系不和谐已成为社会热点问题。首先对我国现行医师不得拒绝诊疗的相关法律规定进行概述,并分析了明确医师不得拒绝诊疗义务的法律与伦理上的原因,指出了医师不得拒绝诊疗相关法律规定的不足之处,最后对完善相关法律规定及现实操作进行思考。以达到改善医患关系,减少医疗纠纷的目的。     

Ethical, Legal and Social Aspects of Brain-Implants Using Nano-Scale Materials and Techniques

Nanotechnology is an important platform technology which will add new features like improved biocompatibility, smaller size, and more sophisticated electronics to neuro-implants improving their therapeutic potential. Especially in view of possible advantages for patients, research and development of nanotechnologically improved neuro implants is a moral obligation. However, the development of brain implants by itself touches many ethical, social and legal issues, which also apply in a specific way to devices enabled or improved by nanotechnology. For researchers developing nanotechnology such issues are rather distant from their daily work in the lab, but as soon as they use their materials or devices in medical applications such as therapy of brain diseases they have to be aware of and deal with them. This paper is intended to raise sensitivity for the ethical, legal and social aspects (ELSA) involved in applying nanotechnology in brain implants or other devices by highlighting the short term problems of testing and clinical trials within the existing regulatory frameworks (A), the short and medium-term questions of risks in the application of the devices (B) and the long-term perspectives related to problems of enhancement (C). To identify and address such issues properly nanotechnologists should involve ethical, legal and social experts and regulatory bodies in their research as early as possible. This will help to remove pressure from regulatory bodies, to settle public concern and to prevent non-acceptable developments for the benefit of the patients.

Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors

Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client.     

Biobanks: Importance,Implications and Opportunities for Genetic Counselors

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.     

Teaching About Genetic Testing Issues in the Undergraduate Classroom: A Case Study

Educating undergraduates about current genetic testing and genomics can involve novel and creative teaching practices. The higher education literature describes numerous pedagogical approaches in the laboratory designed to engage science and liberal arts students. Often these experiences involve students analyzing their own genes for various polymorphisms, some of which are associated with disease states such as an increased risk for developing cancer. While the literature acknowledges possible ethical ramifications of such laboratory exercises, authors do not present recommendations or rubrics for evaluating whether or not the testing is, in fact, ethical. In response, we developed a laboratory investigation and discussion which allowed undergraduate science students to explore current DNA manipulation techniques to isolate their p53 gene, followed by a dialogue probing the ethical implications of examining their sample for various polymorphisms. Students never conducted genotyping on their samples because of ethical concerns, so the discussion served to replace actual genetic testing in the class. A basic scientist led the laboratory portion of the assignment. A genetic counselor facilitated the discussion, which centered around existing ethical guidelines for clinical genetic testing and possible challenges of human genotyping outside the medical setting. In their final papers, students demonstrated an understanding of the practice guidelines established by the genetics community and acknowledged the ethical considerations inherent in p53 genotyping. Given the burgeoning market for personalized medicine, teaching undergraduates about the psychosocial and ethical dimensions of human gene testing seems important and timely, and introduces an additional role genetic counselors can play in educating consumers about genomics.     

关于基因检测的伦理思考

随着基因组学的发展,在临床医学中出现了基因检测的新方法,它的临床应用带来了一些伦理、法律和社会问题.从伦理学的角度出发,对基因检测中出现或有可能出现的伦理问题进行探讨,提出进行基因检测应遵循的伦理原则.     

Religious,Ethical and Legal Considerations in End-of-Life Issues: Fundamental Requisites for Medical Decision Making

Religion and spirituality have always played a major and intervening role in a person’s life and health matters. With the influential development of patient autonomy and the right to self-determination, a patient’s religious affiliation constitutes a key component in medical decision making. This is particularly pertinent in issues involving end-of-life decisions such as withdrawing and withholding treatment, medical futility, nutritional feeding and do-not-resuscitate orders. These issues affect not only the patient’s values and beliefs, but also the family unit and members of the medical profession. The law also plays an intervening role in resolving conflicts between the sanctity of life and quality of life that are very much pronounced in this aspect of healthcare. Thus, the medical profession in dealing with the inherent ethical and legal dilemmas needs to be sensitive not only to patients’ varying religious beliefs and cultural values, but also to the developing legal and ethical standards as well. There is a need for the medical profession to be guided on the ethical obligations, legal demands and religious expectations prior to handling difficult end-of-life decisions. The development of comprehensive ethical codes in congruence with developing legal standards may offer clear guidance to the medical profession in making sound medical decisions.     

Genetic Counseling Services and Development of Training Programs in Malaysia

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.     

Ethical problems in research on risky behaviors and risky populations

The articles by Brooks-Gunn, Fisher, Hoagwood, Liss and Scott-Jones (all in this issue) present a panoply of real-world ethical issues in conducting scientific research on risky behaviors of children, adolescents, and their parents, particularly those from vulnerable populations. The universal, ethical principles of beneficence, justice, and respect for others are always applicable, but they do not resolve issues of child assent, parental consent, legal reporting requirements for illegal behaviors, and the special problems of studying risky behaviors in risky populations. Taken as a group, the articles raise some of the most interesting ethical problems that arise in developmental research. My discussion elaborates some issues and fails to resolve others. I hold the view that both science and ethics can be served by thoughtfully designed and implemented research on important social issues, but that the studies themselves cannot simultaneously solve the many societal problems of participants and be scientifically credible.     

Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors

These cancer genetic counseling recommendations describe the medical, psychosocial and ethical implications of identifying at-risk individuals for hereditary breast and ovarian cancer (HBOC) through cancer risk assessment, with or without genetic susceptibility testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors’ Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment as well as the professional expertise of genetic counselors with significant experience in education and counseling regarding hereditary breast and ovarian cancer. Critical components of the process include the ascertainment of medical and family histories, determination and communication of cancer risk, assessment of risk perception, education regarding the genetics of HBOC, discussion of molecular testing for HBOC if appropriate (including benefits, risks and limitations) and any necessary follow-up. These recommendations do not dictate an exclusive course of management or guarantee a specific outcome. Moreover, they do not replace the professional judgment of a health care provider based on the clinical situation of a client.     

A ray of light about frozen embryos.

The Tennessee Supreme Court's decision in Davis v. Davis, a case that raises the question of how to allocate frozen embryos in the event of divorce, addresses many of the legal issues posed by in vitro fertilization. The decision considers the interests of the progenitors as well as of the children who may result. For example, the court held that gamete providers' discretion regarding the disposition of embryos can be limited only when their decisions would harm the children who might be born. The court also made clear that efforts to seek genetic parenthood are protected only when accompanied by a desire to raise the resulting children, a conclusion that also affects other reproductive technologies. In addition to elaborating an analytic framework, the court set guidelines for resolving disputes when the couples had made no prior agreements, including holding that while the embryos are ex-utero the desire to avoid genetic parenthood almost always trumps the wish to become a parent. The well-reasoned analysis in Davis v. Davis should help shape legal and ethical discussion regarding the use of in vitro fertilization for many years to come.     

The challenge of raising ethical awareness: A case-based aiding system for use by computing and ICT students

Students, the future Information and Communication Technology (ICT) professionals, are often perceived to have little understanding of the ethical issues associated with the use of ICTs. There is a growing recognition that the moral issues associated with the use of the new technologies should be brought to the attention of students. Furthermore, they should be encouraged to explore and think more deeply about the social and legal consequences of the use of ICTs. This paper describes the development of a tool designed to raise students’ awareness of the social impact of ICTs. The tool offers guidance to students undertaking computing and computer-related courses when considering the social, legal and professional implications of the actions of participants in situations of ethical conflict. However, unlike previous work in this field, this tool is not based on an artificial intelligence paradigm. Aspects of the theoretical basis for the design of the tool and the tool’s practical development are discussed. Preliminary results from the testing of the tool are also discussed. An earlier version of this paper was presented by one of the authors at the First International Conference on Teaching Applied and Professional Ethics in Higher Education, Federal University of Surrey Centre for Applied Ethics, Southlands College, Roehampton, London, 2–4 September, 2003.     

Predictive genetic testing for conditions that present in childhood

There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in childhood. I consider the risks and benefits of (1) predictive testing of children from high-risk families; (2) predictive population screening for conditions that are untreatable; and (3) predictive population screening for conditions in which the efficacy of presymptomatic treatment is equivocal. I conclude in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for conditions that do not fulfill public health screening criteria.