Malcolm Parker

Misattributed paternity or ‘false’ paternity is when a man is wrongly thought, by himself and possibly by others, to be the biological father of a child. Nowadays, because of the progression of genetics and genomics the possibility of finding misattributed paternity during familial genetic testing has increased. In contrast to other medical information, which pertains primarily to individuals, information obtained by genetic testing and/or pedigree analysis necessarily has implications for other biologically related members in the family. Disclosing or not a misattributed paternity has a number of different biological and social consequences for the people involved. Such an issue presents important ethical and deontological challenges. The debate centres on whether or not to inform the family and, particularly, whom in the family, about the possibility that misattributed paternity might be discovered incidentally, and whether or not it is the duty of the healthcare professional to disclose the results and to whom. In this paper, we consider the different perspectives and reported problems, and analyse their cultural, ethical and legal dimensions. We compare the position of HCPs from an Italian and British point of view, particularly their role in genetic counselling. We discuss whether the Oviedo Convention of the Council of Europe can be seen as a basis for enriching the debate

Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific “facts” of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician’s evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion.

This paper attempts a partial, critical look at the construction and use of case studies in ethics education. It argues that the authors and users of case studies are often insufficiently aware of the literary nature of these artefacts: this may lead to some confusion between fiction and reality. Issues of the nature of the genre, the fictional, story-constructing aspect of case studies, the nature of authorship, and the purposes and uses of case studies as "texts" are outlined and discussed. The paper concludes with some critical questions that can be applied to the construction and use of case studies in the light of the foregoing analysis

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.

Prenatal Diagnosis (PD) includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening (PS) of prospective parents, and prenatal genetic diagnosis (PGD). The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises connected questions about discrimination, the social status of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against (and occasionally for) diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention.

ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.

The Human Fertilisation and Embryology Authority have recently granted a licence to perform preimplanation genetic diagnosis (PGD) for the homozygous form of familial hypercholesterolaemia (FH), explicitly excluding its use for the heterozygous form. The grounds for such decisions centre on how serious a condition is thought to be as well as on the availability of effective treatment, and decisions are made on a case-by-case basis. The case for licensing homozygous FH is discussed and compared with other cases, and the case for making a distinction between PGD for homozygous and heterozygous FH is also examined. Testing for homozygous FH raises difficult issues of non-disclosure of results for heterozygous FH. Fears that this decision may represent a ‘slippery slope’ to more widespread testing are argued to be overstated

Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained. Design: Qualitative interview study. Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK. Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is described as vague or blurred, and this ambiguity is regarded as being sustained by a range of methodological, ethical and economic factors. The implications of these findings for the “therapeutic misconception” are explored. It is argued that while research participation is seen as having therapeutic benefit for individual patients, the interviewees are not labouring under any misconceptions about the relationship between research and clinical care. It is suggested that concepts such as the “therapeutic misconception” may have less relevance in highly technological specialities that are characterised by a developing evidence base

The recently published BMA Guidelines on Withholding and Withdrawing Medical Treatment encourage a balance between deriving maximal benefit from medical treatment, and achieving as natural a death as possible in the circumstances. I argue that the concepts of burdensomeness, natural death and medicalised death are of greater fundamental importance than that of intention, and do not help constitute a moral distinction between withdrawal of treatment and active assistance to die. Nor should they continue to ground the corresponding legal distinction. In the situations of both treatment withdrawal and active assistance to die, disease causation, human agency and moral responsibility are related in the same way. In both situations, we can intend that a person die for the right reasons, based on a concern for natural death.However, the law is reluctant to impose positive obligations on people, in contrast to the protection of negative rights. For example, the Northern Territory’s Rights of the Terminally Ill Act (1996) provided for assisted death as a lawful exception to an otherwise unlawful act, rather than as an enforceable right like the right to refuse unwanted medical treatment. Nevertheless, that the enforceability of a positive right to assisted death is difficult to conceive, is itself the product of a particular historical/moral/religious frame of reference currently under deconstruction. Genuine natural death statutes would consolidate the important principles supported here, and could apply uniform safeguards to all death-hastening decisions.

Debate continues over the acts/omissions doctrine, and over the concepts of duty and charity. Such issues inform the debate over the moral permissibility of euthanasia. Recent papers have emphasised moral sensitivity, medical intuitions, and sub-standard palliative care as some of the factors which should persuade us to regard euthanasia as morally unacceptable. I argue that these lines of argument are conceptually misdirected and have no bearing on the bare permissibility of voluntary euthanasia. Further, some of the familiar slippery slope arguments against voluntary euthanasia compromise the principle of autonomy to which both supporters and opponents of euthanasia adhere. I discuss a model for doctor/patient relationships which can be applied to cases which would be seen by all disputants as strong prima facie cases for euthanasia. I argue that in certain cases it will be ordinary medical practitioners who are duty-bound to assist death

Orr and Siegler have recently defended a restrictive view concerning posthumous sperm retrieval and conception, which would limit insemination to those cases where the deceased man has provided explicit consent for such a procedure. The restrictive view dominates current law and practice. A permissible view, in contrast, would allow insemination and conception in all but those cases where the posthumous procedure has been explicitly refused, or where there is no reasonable evidence that the deceased person desired children. I describe a phenomenology of procreative desires which supports the permissible view, and which is compatible with requirements concerning the interests of the decedent, concepts of medical infertility, and the welfare of the future child. The account illustrates how our current obsession with individual rights and autonomy can be self-defeating and repressive

Autonomy has been the central principle underpinning changes which have affected the practice of medicine in recent years. Medical education is undergoing changes as well, many of which are underpinned, at least implicitly, by increasing concern for autonomy. Some universities have embarked on graduate courses which utilize problem-based learning (PBL) techniques to teach all areas, including medical ethics. I argue that PBL is a desirable method for teaching and learning in medical ethics. It is desirable because the nature of ethical enquiry is highly compatible with the learning processes which characterize PBL. But it is also desirable because it should help keep open the question of what autonomy really is, and how it should operate within the sphere of medical practice and medical education

The development of human genetics raises a wide range of important ethical questions for us all. The interpersonal dimension of genetic information in particular means that genetics also poses important challenges to the idea of patient-centredness and autonomy in medicine. How ought practical ethical decisions about the new genetics be made given that we appear, moreover, no longer to be able to appeal to unquestioned traditions and widely shared communitarian values? This paper argues that any coherent ethical approach to these questions must be able both to uphold the moral status of the individual and at the same time recognise the communitarian, interpersonal dimensions both of the world in which we live and of personal autonomy itself. The paper then goes on to propose an approach to the resolution of the ethical questions raised by the use of the new genetics in reproductive choice through the development of a coherent and principled process of public reason and justification oriented towards the support and development of personal autonomy

Julian Savulescu argues for two principles of reproductive ethics: reproductive autonomy and procreative beneficence, where the principle of procreative beneficence is conceptualised in terms of a duty to have the child, of the possible children that could be had, who will have the best opportunity of the best life. Were it to be accepted, this principle would have significant implications for the ethics of reproductive choice and, in particular, for the use of prenatal testing and other reproductive technologies for the avoidance of disability, and for enhancement. In this paper, it is argued that this principle should be rejected, and it is concluded that while potential parents do have important obligations in relation to the foreseeable lives of their future children, these obligations are not best captured in terms of a duty to have the child with the best opportunity of the best life

The internet is becoming increasingly important in health care practice. The number of health-related web sites is rising exponentially as people seek health-related information and services to supplement traditional sources, such as their local doctor, friends, or family. The development of e-medicine poses important ethical challenges, both for health professionals and for those who provide clinical ethics support for them. This paper describes some of these challenges and explores some of the ways in which those who provide clinical ethics support might respond creatively to them. By offering ways of responding to such challenges, both electronically and face-to-face, the providers of clinical ethics support can show themselves to be an indispensable part of good quality health care provision

Clinical geneticists are increasingly confronted with ethical tensions between their responsibilities to individual patients and to other family members. This paper considers the ethical implications of a “familial” conception of the clinical genetics role. It argues that dogmatic adherence to either the familial or to the individualistic conception of clinical genetics has the potential to lead to significant harms and to fail to take important obligations seriously.Geneticists are likely to continue to be required to make moral judgments in the resolution of such tensions and may find it useful to have access to ethics training and support

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal knowledge on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care.

The turn to empirical ethics answers two calls. The first is for a richer account of morality than that afforded by bioethical principlism, which is cast as excessively abstract and thin on the facts. The second is for the facts in question to be those of human experience and not some other, unworldly realm. Empirical ethics therefore promises a richer naturalistic ethics, but in fulfilling the second call it often fails to heed the metaethical requirements related to the first. Empirical ethics risks losing the normative edge which necessarily characterizes the ethical, by failing to account for the nature and the logic of moral norms. I sketch a naturalistic theory, teleological expressivism (TE), which negotiates the naturalistic fallacy by providing a more satisfactory means of taking into account facts and research data with ethical implications. The examples of informed consent and the euthanasia debate are used to illustrate the superiority of this approach, and the problems consequent on including the facts in the wrong kind of way.

They enterin curves and stoopslimping and tappinga file of bare armscreased faces upliftedred eyelids poutingeyes curtained in cataract.The syringes are magazined at his hip.A pinch of skinin a chill autumn morninga stinging spreads outat the borders of shouldersthe grim supplicationfor all his attentionthe trembling smileon his remembering a name.Swabs spent in bucketsthe names all collecteda shifting and amblingacross the lawns to their liveson small porchesand in dim echoing cells.Washing his handsof the short easy morningthose bird-bone armsgrow stars of Davidin the injected whealsand the upturned headspull at his neckfor a sparklet of mercyhe prodding them downinto the frostfrom the stinking trainsat the point of more serious weaponry.They are a herdfanning out to their winding down daysdark-eyed ones shuffling blindto other deaths, gassed and limed