Préservation de la fertilité chez les enfants et les adolescents traités pour un cancer. Aspects relationnels et éthiques

Proposing fertility preservation to an adolescent before chemotherapy that may induce sterility raises numerous relational and ethical issues, as it concerns an adolescent, cancer, sexuality, and parenthood. The goal is to preserve fertility without exacerbating confusion and suffering, without triggering a senses of guilt or irretrievable loss in the event of failure, without hampering his relations with the oncologist caregiver, without transforming his self-esteem and existential dynamics, so that later the memory of the illness and its treatment will not be shameful or traumatic. In routine practice, it is importannt to be attentive to two problems: if semen collection is impossible or fails (how will the adolescent react?) and when parents are too reticent or too eager to do so in the adolescent's place. In these situations, and even more so when a rare, innovative procedure is proposed, it is important to take into account the main principles of clinical ethics: respect the patient's autonomy and dignity, the principles of causing no harm and justice. It is also important to determine the adolescent's objectives, expectations and motivations (whether he accepts or refuses the proposal) which are not necessarily the same as those of the clinicians or parents. Dialogue is not always easy because the diagnosis of cancer (and the resulting shock) is recent, the treatment must commence rapidly, and the doctor and patient do not know each other very well. Training in the use of dialogue and relational skills, in issues specific to adolescents and adolescent psychology, and in solving ethical problems in the medical field can be useful.     

Stem cell colloquy: conclusion

The stem cell data presented and discussed during the symposium raise the hope that important medical progress can be made in several fields: neuro-degenerative diseases, those linked to cellular deficit, some aspects of aging linked to cellular degeneration, and the treatment of cancers that may harm normal tissues at risk of being infiltrated by malignant cells. Three main types of stem cells are available. (i) Those present in normal adult tissue: contrary to what was believed, some data suggest that certain adult stem cells have a great plasticity (they can differentiate into cells different from those in tissues from which they were taken) and can proliferate in vitro without losing their properties. Nevertheless, their use faces several obstacles: in ill or elderly subjects, then these cells can be limited in number or not multiply well in vitro. In this case, auto-grafting of the cells cannot be used. They must be sought in another subject, and allo-grafting causes difficult and sometimes insoluble problems of immunological tolerance. (ii) Embryonic stem cells from surplus human embryos, obtained by in vitro fertilisation, which the parents decide not to use: these cells have a great potential for proliferation and differentiation, but can also encounter problems of immunological intolerance. (iii) Cells obtained from cell nuclear transfer in oocytes: these cells are well tolerated, since they are genetically and immunologically identical to those of the host. All types of stem cells can be obtained with them. However, they do present problems. For obtaining them, female oocytes are needed, which could lead to their commercialization. Moreover, the first steps for obtaining these cells are identical to those used in reproductive cloning. It therefore appears that each type of cell raises difficult scientific and practical problems. More research is needed to overcome these obstacles and to determine which type of stem cell constitutes the best solution for each type of disease and each patient. There are three main ethical problems: (a) to avoid the commercialization of stem cells and oocytes (this can be managed through strict regulations and the supervision of authorized laboratories); (b) to avoid that human embryos be considered as a mere means to an end (they should only be used after obtaining the informed consent of the parents; the conditions of their use must be well defined and research programs must be authorized); (c) to avoid that research on stem cell therapy using cell nuclear replacement opens the way to reproductive cloning (not only should reproductive cloning be firmly forbidden but authorization for cell nuclear transfer should be limited to a small number of laboratories). Overall, it appears that solutions can be found for administrative and ethical problems. Harmonisation of international regulations would be desirable in this respect, in allowing at the same time each country to be responsible for its regulations. A last ethical rule should be implemented, not to give patients and their families false hopes. The scientific and medical problems are many, and the solutions will be long and difficult to find. Regenerative medicine opens important avenues for research, but medical progress will be slow.     

The Nocebo Effect of Informed Consent

The nocebo effect, the mirror‐phenomenon to the placebo effect, is when the expectation of a negative outcome precipitates the corresponding symptom or leads to its exacerbation. One of the basic ethical duties in health care is to obtain informed consent from patients before treatment; however, the disclosure of information regarding potential complications or side effects that this involves may precipitate a nocebo effect. While dilemmas between the principles of respect for patient autonomy and of nonmaleficence are recognized in medical ethics, there has not yet been an ethical discussion focused on the potential dilemma raised by the nocebo effect of informed consent (NEIC). This dilemma is especially pernicious, since it involves a direct causality of harm by the caregiver that is unparalleled by other potential harmful effects of information disclosure. This paper articulates the dilemma of the NEIC and offers a seminal ethical analysis.     

The ethics of ectogenesis-aided foetal treatment

In this paper, we aim to stimulate ethical debate about the morally relevant connection between ectogenesis and the foetus as a potential beneficiary of treatment. Ectogenesis could facilitate foetal interventions by treating the foetus independently of the pregnant woman and provide easier access to the foetus if interventions are required. The moral relevance hereof derives from the observation that, together with other developments in genetic technology and prenatal treatment, this may catalyse the allocation of a patient status to the foetus. The topic of foetal medicine is of growing interest to clinicians, and it also deserves due attention from an ethical perspective. To the extent that these developments contribute to the allocation of a patient status to the foetus (and to its respective interests for medical treatment), normative questions arise about how moral responsibilities towards foetal interests should be balanced against the interests of the pregnant woman. We conclude that, even if ectogenesis could facilitate foetal therapy, it is important to remain sensitive to the fact that it would not circumvent the key ethical concerns that come with in utero foetal treatment and that it may even exacerbate potential conflicts between directive treatment recommendations and the pregnant woman’s autonomous decision to the contrary.     

Ethical Issues in the Use of Data from Testing of Human Subjects to Support Risk Assessment

The public understands and supports the ethical use of human subjects in medical research, recognizing the unique role for this type of study in the development of new drugs and therapeutic strategies for treatment of disease. The use of data from human subjects can also be of value in understanding the circumstances under which individuals exposed to chemicals in the food supply, in the workplace, or in the environment might experience toxicity, i.e., in support of risk assessment. However, questions have been raised as to whether this latter type of research is ethical, or can be performed in an ethical manner. Under what circumstances is it acceptable to intentionally expose human subjects to potentially toxic agents? This is an extremely important issue for the risk assessment community to address, because it affects in a fundamental way the types of information that will be available to conduct human health risk assessments. Four papers in this issue offer viewpoints on the value of human data, the circumstances under which human subjects might be exposed to toxic chemicals for research purposes, the ethical problems associated with this research, and the role of human vs. animal data in the development of toxicity values for human health risk assessment     

Gallstones - approach to medical management

Between 10% and 15% of individuals in the industrialized world have gallstones. The standard treatment is laparoscopic cholecystectomy, making gallstone disease the second most costly digestive disorder in most Western countries. Despite a rapid convalescence, the procedure is not devoid of morbidity or even mortality. Bile duct injury is particularly troublesome, occurring in 0.1% to 0.5% of cases, even in the most experienced hands. Moreover, some 20% of patients continue to suffer from pain (the main indication for treatment) after cholecystectomy. In patients with mild symptoms, surgical treatment has been associated with a higher morbidity than the natural course of the disease. Medical dissolution therapy with bile acids is an alternative for patients with mild-to-moderate symptoms due to cholesterol gallstones. Chenodeoxycholic acid (CDCA, chenodiol) has been largely replaced by the safer and more efficient ursodeoxycholic acid (UDCA). The main drawbacks of UDCA treatment are its low efficacy (approximately 40%), slowness in action, and the possibility of stone recurrence. However, this treatment is extremely safe, and the efficacy and slowness can be somewhat improved by stricter patient selection. Moreover, patient symptoms may respond to this therapy even without complete stone dissolution. New strategies employing more efficient bile acids or related compounds may increase the efficacy of medical dissolution. Furthermore, recent advances in the understanding of biliary lipid secretion and regulation should offer novel opportunities to further improve the prospects of medical treatment of gallstones.     

Are there Characteristics of Infectious Diseases that Raise Special Ethical Issues?1

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community.     

Disruptive medical patients. Forensically informed decision making.

Patients who disrupt medical care create problems for physicians. The risks are not entirely clinical. Although these patients may compromise sound clinical judgment, some are also litigious and express their dissatisfaction in legal or other forums. It then becomes necessary for treating physicians to be aware of the legal and ethical boundaries of their patient care responsibilities. Some disruptive patients are treated by setting limits, which is usually affirmed by health care agreements. A hospital review board may advise clinicians on these agreements and on the management of disruptive patients. If termination of the physician-patient relationship is considered, physicians must follow proper protocol. We examine these forensic considerations and place them in the context of malpractice. Communication, consultation, and documentation are the key elements in reducing liability.     

Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

Localized past, globalized future: towards an effective bioethical framework using examples from population genetics and medical tourism

This paper suggests that many of the pressing dilemmas of bioethics are global and structural in nature. Accordingly, global ethical frameworks are required which recognize the ethically significant factors of all global actors. To this end, ethical frameworks must recognize the rights and interests of both individuals and groups (and the interrelation of these). The paper suggests that the current dominant bioethical framework is inadequate to this task as it is over-individualist and therefore unable to give significant weight to the ethical demands of groups (and by extension communal and public goods). It will explore this theme by considering the inadequacy of informed consent (the 'global standard' of bioethics) to address two pressing global bioethical issues: medical tourism and population genetics. Using these examples it will show why consent is inadequate to address all the significant features of these ethical dilemmas. Four key failures will be explored, namely, ? That the rights and interests of those related (and therefore affected) are neglected; ? That consent fails to take account of the context and commitments of individuals which may constitute inducement and coercion; ? That consent alone does not have the ethical weight to negate exploitation or make an unjust action just ('the fallacy of sufficiency'); ? That consent is a single one-off act which is inappropriate for the types of decision being made. It will conclude by suggesting that more appropriate models are emerging, particularly in population genetics, which can supplement consent.     

Societal problems in human and medical genetics

The applications of human and medical genetics raise many societal and ethical problems. This paper deals with a variety of such issues posed by current and future developments in genetic counseling, genetic screening, prenatal and predictive diagnosis, and gene therapy. The promise and problems of behavioral genetics are discussed. Problems of privacy, decision making, societal pressures, stigmatization, and informed consent to genetic study are raised. Use of genetic data by insurance companies or other public groups is discussed. The rapid unfolding of genetic information affecting human health and disease is producing difficult dilemmas. New problems are likely to surface, but human ingenuity and rationality is likely to find just and compassionate solutions in most settings.     

Bioethics for clinicians: 12. Ethical dilemmas that arise in the care of pregnant women: rethinking "maternal-fetal conflicts".

When a pregnant woman makes a decision or acts in a manner that may be detrimental to the health and well-being of her fetus, her physician may be faced with an ethical dilemma. Is the physician''s primary duty to respect the woman''s autonomy, or to promote behaviour that may be in the best interest of the fetus? The controversial concept of "fetal rights" or the "fetus as a patient" contributes to the notion that the pregnant woman and her fetus are potential adversaries. However, Canadian law has upheld women''s right to life, liberty and security of the person and has not recognized fetal rights. If a woman is competent and refuses medical advice, her decision must be respected even if the physician believes that her fetus will suffer as a result. Coercion of the woman is not permissible no matter what appears to be in the best interest of the fetus.     

Should We Reject Donated Organs on Moral Grounds or Permit Allocation Using Non‐Medical Criteria?: A Qualitative Study

Conditional and directed deceased organ donations occur when donors (or often their next of kin) attempt to influence the allocation of their donated organs. This can include asking that the organs are given to or withheld from certain types of people, or that they are given to specified individuals. Donations of these types have raised ethical concerns, and have been prohibited in many countries, including the UK. In this article we report the findings from a qualitative study involving interviews with potential donors (n = 20), potential recipients (n = 9) and transplant staff (n = 11), and use these results as a springboard for further ethical commentary. We argue that although participants favoured unconditional donation, this preference was grounded in a false distinction between ‘medical’ and ‘non‐medical’ allocation criteria. Although there are good reasons to maintain organ allocation based primarily upon the existing ‘medical’ criteria, it may be premature to reject all other potential criteria as being unacceptable. Part of participants' justification for allocating organs using ‘medical’ criteria was to make the best use of available organs and avoid wasting their potential benefit, but this can also justify accepting conditional donations in some circumstances. We draw a distinction between two types of waste – absolute and relative – and argue that accepting conditional donations may offer a balance between these forms of waste.     

Teaching Medical Ethics to Meet the Realities of a Changing Health Care System

The changing context of medical practice—bureaucratic, political, or economic—demands that doctors have the knowledge and skills to face these new realities. Such changes impose obstacles on doctors delivering ethical care to vulnerable patient populations. Modern medical ethics education requires a focus upon the knowledge and skills necessary to close the gap between the theory and practice of ethical care. Physicians and doctors-in-training must learn to be morally sensitive to ethical dilemmas on the wards, learn how to make professionally grounded decisions with their patients and other medical providers, and develop the leadership, dedication, and courage to fulfill ethical values in the face of disincentives and bureaucratic challenges. A new core focus of medical ethics education must turn to learning how to put ethics into practice by teaching physicians to realistically negotiate the new institutional maze of 21st-century medicine.     

Ethical and economic aspects of noncompliance and overtreatment.

Physicians have an ethical responsibility for cost-saving within the current medical care delivery system. Noncompliance and overtreatment are among the causes of excessive health care expenses. An effective means of improving compliance and avoiding unwanted or fruitless treatment is improved physician-patient communication. Improved communication is also the most ethical means of avoiding these expenses. The educated participation of patients in treatment decisions and of the public in health policy formation is ethically and economically preferable to bureaucratic responses and user fees. The public must be made aware of the costs and limited benefits of medical treatments and of the effects of lifestyle on health. The medical encounter must become more supportive and educational. Medical school curricula must emphasize patient involvement, which must be reinforced to medical students and residents by staff physicians'' genuine concern and effort. Quality assessments and assurance should include evaluation of communication, patient satisfaction, use of follow-up and duplication of services.     

Treatment of overactive bladder and incontinence in the elderly

The prevalence of urinary incontinence (UI) and overactive bladder rises with age, and elderly people are the fastest-growing segment of the population. Many elderly people assume UI is a normal part of the aging process and do not report it to their doctors, who must therefore make the effort to elicit the information from them. Coexisting medical problems in older patients and the multiple medications many of them take make diagnosis and treatment more complex in this population. Just as the etiology of incontinence is often multifactorial, the treatment approach may need to be multipronged, with behavioral, environmental, and medical components; in any case, it must be targeted to the individual patient. New, less-invasive surgical techniques and devices make surgery more feasible if other therapy fails.     

Allocation of scarce resources in Africa during COVID‐19: Utility and justice for the bottom of the pyramid?

The COVID‐19 pandemic has raised important universal public health challenges. Conceiving ethical responses to these challenges is a public health imperative but must take context into account. This is particularly important in sub‐Saharan Africa (SSA). In this paper, we examine how some of the ethical recommendations offered so far in high‐income countries might appear from a SSA perspective. We also reflect on some of the key ethical challenges raised by the COVID‐19 pandemic in low‐income countries suffering from chronic shortages in health care resources, and chronic high morbidity and mortality from non‐COVID‐19 causes. A parallel is drawn between the distribution of severity of COVID‐19 disease and the classic “Fortune at the bottom of the pyramid” model that is relevant in SSA. Focusing allocation of resources during COVID‐19 on the ‘thick’ part of the pyramid in Low‐to‐Middle Income Countries (LMICs) could be ethically justified on utilitarian and social justice grounds, since it prioritizes a large number of persons who have been economically and socially marginalized. During the pandemic, importing allocation frameworks focused on the apex of the pyramid from the global north may therefore not always be appropriate. In a post‐COVID‐19 world, we need to think strategically about how health care systems can be financed and structured to ensure broad access to adequate health care for all who need it. The root problems underlying health inequity, exposed by COVID‐19, must be addressed, not just to prepare for the next pandemic, but to care for people in resource poor settings in non‐pandemic times.     

Cognitive enhancement: promises and perils

The potential use of drugs to enhance cognition, emotion, and executive function has engendered controversy despite the fact that few such agents exist today. Here, I provide a context for discussions based on medical, regulatory, and ethical concerns that have been raised by the possibility that enhancers will emerge from current efforts to discover drugs for neuropsychiatric disorders.     

Beneficial Coercion in Psychiatric Care: Insights from African Ethico‐Cultural System

There is a ‘catch 22’ situation about applying coercion in psychiatric care. Autonomous choices undeniably are rights of patients. However, emphasizing rights for a mentally‐ill patient could jeopardize the chances of the patient receiving care or endanger the public. Conversely, the beneficial effects of coercion are difficult to predict. Thus, applying coercion in psychiatric care requires delicate balancing of individual‐rights, individual well‐being and public safety, which has not been achieved by current frameworks. Two current frameworks may be distinguished: the civil liberty approach and the Stone model. Both frameworks are restrictive, and not respectful of human dignity. In a civil liberty approach, individuals who are severely mentally‐ill but not dangerous would be denied care because they do not meet the dangerousness threshold or because the use of coercion will not lead to rebirthing of autonomy. This is unsatisfactory. Albeit involuntary interventions such as talk therapies, peer‐support etc., may not always lead to rebirthing of autonomy or free patients from mental illness; they can however help to maintain the dignity of each mentally ill patient. In place of these frameworks, this study proposes a new ethical framework for applying coercion in psychiatric care that is respectful of human dignity. Specifically, it draws on insights from the African ethico‐cultural system by using the Yoruba concept Omo‐olu‐iwabi to develop this new framework. This way, the study shows that only a more respectful approach for applying coercion in psychiatric care can lead to the careful balancing of the competing interests of individual's rights, individual's well‐being and public safety.     

Memory enhancement: the progress and our fears

In a recent article Rose (2002) raises numerous crucial issues with regard to the research into and the use of cognition or memory enhancing agents. Although development of 'smart' drugs is in its infancy, his paper delineates some issues society may have to face when these drugs arrive. Questions about the development of such drugs may be interesting to several readers of Genes Brain and Behavior given the wealth of information expected to be gained on brain function from studies using genetic approaches including mutagenesis, transgenic techniques and genomics in general. Besides the scientific questions, several ethical issues may need to be addressed that are of interest to us all. Rose (2002 ) discusses some of these questions, but perhaps presents a too negative view on the problems, especially with regard to the present and future of memory research. This paper is intended to focus mainly on the scientific questions and argues that our fear of complex ethical problems should not make us throw the baby (i.e., our research and discoveries) out with the bath water.