Two dogmas of liberalism in the therapeutic setting are challenged: (1) that patients have a ready-made ability to act autonomously; and (2) that non-intervention by physicians is the best strategy for protecting the autonomy of patients. Recognition of the impact of illness upon autonomous behavior forms the basis of this challenge. It is suggested that autonomy is better conceived as a process of personal growth by which patients become better able to overcome the disruptive effects of illness. The physician is (...) assigned an active role in the achievement of this therapeutic goal. The implications of this new liberal theory are illustrated by reference to the informed consent issue. (shrink)

On the basis of the characterization of autonomy set out by Beauchamp and Childress in Principles of Biomedical Ethics, we first explore some of the parameters along which autonomy may vary in degree through a series of hypothetical examples drawn from various settings; and, second and in more detail, we examine how the range of autonomy is affected through informed consent to various medical diagnostic tests. Our conclusions are (1) that there are significant implications for patient autonomy inherent in new (...) and forthcoming diagnostic modalities, and (2) that attention should be paid to these implications in formulating policies for both clinical practice and research. We close with (a) some specific policy recommendations for clinical practice and research, and (b) some metaphysical speculations raised by our explorations. (shrink)

The American Journal of Bioethics, Volume 11, Issue 8, Page 25-26, August 2011.

Protecting the Vulnerable explores the reality of patient control and choice in health care and analyzes how decisions should be made on behalf of those deemed incapable of making decisions. The contributors, distinguished experts from the disciplines of medicine, ethics, theology, and law, look at the complex problem of autonomy and consent in health care and clinical research today from an illuminating perspective--its impact on the vulnerable members of society. The essays move from the exploration of lingering paternalism in health (...) care to the acute dilemma of treatment of and research on newborn babies. In covering both general and specific problems the collection reveals how exploitation can occur when the right of autonomy is eroded and where informed consent is illusory. Particularly vulnerable groups, such as children and people with mental handicaps, are discussed alongside cases where the vulnerability is itself an issue. Other areas covered include: `gesture' suicides, the practical problems of doctors in dealing with dependent patients, and the limits of proxy consent. All health care professionals, ethicists, policy makers, and lawyers currently engaged in the study or practice of health care ethics will find Protecting the Vulnerable to be a vital source of information for many years to come. (shrink)

Feminist health activists and medical researchers frequently disagree on the adequacy of the informed consent processes in clinical trials. I argue for an informed consent process that reflects the central importance of patient-participant autonomy. Such a standard may raise concerns for medical researchers about their capacity to control the quantity and quality of the information they disclose to potential participants. These difficulties might be addressed by presenting potential participants with differently sized disclosure packages.

Sexual assault examinations consist of a medical evaluation and forensic evidence collection. Usually the patient signs a consent form allowing the examination to occur. Occasionally circumstances exist that render a patient unable to give consent for this examination. Such circumstances include young age, mental health disease, cognitive delay, or drug/alcohol ingestion. This article provides suggestions for developing a policy allowing a sexual assault examination to be conducted without patient consent. A sample of such a policy is provided.

Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. This book explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous research participant may have significant bearing (...) on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. This book also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. (shrink)

A number of theoretical ideas have emerged recently in the legal, bioethical and philosophical fields that could usefully be applied to these and other issues ...

In this paper we claim that individual subjects do not have so much control over sleep that it is aptly characterized as a personal choice; and that normative implications related to public health and sleep hygiene do not necessarily follow from current findings. It should be true of any empirical study that normative implications do not necessarily follow, but we think that many public health sleep recommendations falsely infer these implications from a flawed explanatory account of the decision to sleep: (...) the consumer choice view. This view, which we criticize here, proposes that sleep duration and sleep quality be understood as one choice among many. (shrink)

Informed consent is a central topic in contemporary biomedical ethics. Yet attempts to set defensible and feasible standards for consenting have led to persistent difficulties. In Rethinking Informed Consent in Bioethics Neil Manson and Onora O'Neill set debates about informed consent in medicine and research in a fresh light. They show why informed consent cannot be fully specific or fully explicit, and why more specific consent is not always ethically better. They argue that consent needs distinctive communicative transactions, by which (...) other obligations, prohibitions, and rights can be waived or set aside in controlled and specific ways. Their book offers a coherent, wide-ranging and practical account of the role of consent in biomedicine which will be valuable to readers working in a range of areas in bioethics, medicine and law. (shrink)

From Hippocrates to paternalism to autonomy : the new hegemony -- From autonomy to consent -- Consent, autonomy, and the law -- Autonomy at the end of life -- Autonomy and pregnancy -- Autonomy and genetic information -- Autonomy and organ transplantation -- Autonomy, consent, and the law.

Medical decisions concerning noncompetent patients that are most morally problematical are those that involve life and death choices. In making these choices for others, I urge that decision-makers carefully attend to the degree and history of a person's noncompetence, and distinguish four relevant categories of competence: partial, potential, lost and never possessed. Attending to these will help enable us to sort out when and how autonomous choice is possible and desirable and when and how to rely upon a judgment of (...) a patient's best interests instead. This conflict is explored with particular reference to the Quinlan, Fox and Saikewicz cases. I argue that respect for autonomy, wherever possible, has presumptive priority, and that it is more often possible than frequently supposed. On the other hand, the notion of autonomous choice itself is perverted when forced upon inappropriate cases, such as those presented by the never competent. Here it is not merely legitimate, but inescapable to use a best interest criterion that ignores autonomy in making treatment decisions. Specific cases in which these normally distinct guidelines for decision-making concur, conflict and need resolution are discussed. In the end it is often more important to determine who will choose than by what substantive criteria he or she will be guided. In considering this issue, I try to show that the substantive criteria have implications for who the proper decision-makers are in many problematical cases. (shrink)

A 16 year old Hodgkin lymphoma patient refuses to have his blood specimen drawn, thus canceling his scheduled oncologic treatment. As a 16 year old, he has no legal standing as an adult. His parents are split over his decision. One supports his right to choose; the other wishes the specimen to be drawn and the chemotherapy reinstated. The physicians at the hospital are seeking legal redress to have the court order the blood specimens to be taken.

This book offers a thorough reflection on the relationship between autonomy and paternalism, and argues that, from both theoretical and practical angles, the ...

The notion of “consent” is frequently referred to as “informed consent” to emphasise the informational component of a valid consent. This article considers aspects of that informational component. One misuse of the language of informed consent is highlighted. Attention is then directed to some features of the situation in which consent would not have been offered had certain information been disclosed. It is argued that whether or not such consent is treated as sufficiently informed must, from a moral point of (...) view, take account of four conditions. When these are applied to the operation of consent in relation to criminal responsibility for HIV transmission, the approach in some recent cases is shown to be morally questionable. (shrink)

Advance directives (ADs), which are also sometimes referred to as ‘living wills’, are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the doctrine of (...) necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs’ emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity. (shrink)

Homeopathy has been the subject of intense academic, media and public debate in recent months. Those opposed to the practice, which treats like with like by using ultra-dilute remedies, argue that it is an ineffective non-treatment that is not supported by evidence and should not be funded on the National Health Service. Its proponents claim that it is effective (although they disagree about whether it is more effective than placebo) and argue its use is appropriate for certain conditions. This paper (...) examines homeopathy from the perspective of the four principal principles of medical ethics and two example cases. It transpires that homeopathic practice is in contravention of all four of these principles, and is by its very nature unethical. (shrink)

In the last year there has been a great deal of public debate about homeopathy. The House of Commons Select Committee on Science and Technology concluded in November that there is no evidence base for homeopathy, and agreed with some academic commentators that homeopathy should not be funded by the NHS.i ii While homeopathic doctors and hospitals are quite commonplace, some might be surprised to learn that there are also many homeopathic dentists practicing in the UK. This paper examines some (...) of the claims made by homeopathic organisations regarding dentistry, and suggests that they may not be entirely ethical. (shrink)

Homeopathic medicine is based on the two principles that “like cures like” and that the potency of substances increases in proportion to their dilution. In November 2009 the UK Parliament’s Science and Technology Committee heard evidence on homeopathy, with several witnesses arguing that homeopathic practice is “unethical, unreliable, and pointless”. Although this increasing scepticism about the merits of homeopathy is to be welcomed, the unethical effects of funding homeopathy on the NHS are even further-reaching than has been acknowledged.

Current General Medical Council guidelines state that any doctor who does not wish to carry out a non-therapeutic circumcision (NTC) on a boy must invoke conscientious objection. This paper argues that this is illogical, as it is clear that an ethical doctor will object to conducting a clinically unnecessary operation on a child who cannot consent simply because of the parents’ religious beliefs. Comparison of the GMC guidelines with the more sensible British Medical Association guidance reveals that both are biased (...) in favour of NTC and subvert standard consent procedures. It is further argued that any doctor who does participate in non-therapeutic circumcision of a minor may be guilty of negligence and in breach of the Human Rights Act. In fact, the GMC guidance implies that doctors must claim conscientious objection if they do not wish to be negligent. Both sets of guidelines should be changed to ensure an objective consent process and avoid confusion over the ethics of NTC. (shrink)

Kihlbom has recently argued that a system of seeking negatively informed consent might be preferable in some cases to the ubiquitous informed consent model. Although this theory is perhaps not powerful enough to supplant informed consent in most settings, it lends strength to Evans’ and Hungin’s proposal that it can be ethical to prescribe placebos rather than "active" drugs. This paper presents an argument for using negatively informed consent for the specific purpose of authorising the use of placebos in clinical (...) contexts. (shrink)

Despite the heavy emphasis on consent in the ethical code of the General Dental Council (GDC), it is often overlooked that communication difficulties between patient and dentist can cause problems in maintaining genuine consent during interventions. Inconsistencies in the GDC's Standards for dental professionals and Principles of patient consent guidelines are examined in this article, and it is concluded that more emphasis must be placed on continuous consent as an ongoing process essential to maintaining patients' dignity in dentistry.

Three main claims are made in this paper. First, it is argued that Onora O’Neill has uncovered a serious problem in the way medical ethicists have thought about both respect for autonomy and informed consent. Medical ethicists have tended to think that autonomous choices are intrinsically worthy of respect, and that informed consent procedures are the best way to respect the autonomous choices of individuals. However, O’Neill convincingly argues that we should abandon both these thoughts. Second, it is argued that (...) O’Neill’s proposed solution to this problem is inadequate. O’Neill’s approach requires that a more modest view of the purpose of informed consent procedures be adopted. In her view, the purpose of informed consent procedures is simply to avoid deception and coercion, and the ethical justification for informed consent derives from a different ethical principle, which she calls principled autonomy. It is argued that contrary to what O’Neill claims, the wrongness of coercion cannot be derived from principled autonomy, and so its credentials as a justification for informed consent procedures is weak. Third, it is argued that we do better to rethink autonomy and informed consent in terms of respecting persons as ends in themselves, and a characteristically liberal commitment to allowing individuals to make certain categories of decisions for themselves. -/- Respect for autonomy is in trouble. In recent work in this journal1 and elsewhere,2 O’Neill has forcefully argued that respect for autonomy, as it has come to be used in medical ethics, is philosophically indefensible. If her arguments are sound, then, contrary to the standard view, respect for autonomy cannot be the source of the ethical requirement to seek informed consent before treating a patient or enrolling a participant in a trial. So her critique goes to the heart of contemporary medical ethics: if O’Neill is right, medical ethicists have systematically misunderstood two of the most fundamental concepts they deal with—respect for autonomy and informed consent. -/- This paper has four sections. Section 1 distinguishes between three different ways of talking about respect for autonomy, and looks in more detail at the one that has come to be central to bioethical writing on informed consent—namely, the idea that we should respect autonomous choices. Section 2 argues, following O’Neill, that it is implausible to think that the purpose of informed consent requirements is to respect autonomous choices. Section 3 argues that O’Neill’s proposed reworking of autonomy and informed consent is inadequate. O’Neill’s approach requires us to adopt a more modest view of the purpose of informed consent procedures. In her view, the purpose of informed consent procedures is simply to avoid deception and coercion, and the ethical justification for informed consent derives from a different ethical principle, which she calls principled autonomy. I argue that contrary to what O’Neill claims, we cannot derive the wrongness of coercion from principled autonomy, and so its credentials as a justification for informed consent procedures is weak. Section 4 argues that we do better to rethink autonomy and informed consent in terms of respecting persons as ends in themselves, and a characteristically liberal commitment to allowing individuals to make certain categories of decisions for themselves. (shrink)

Background Requirements for organ donation after cardiac or imminent death have been introduced to address the transplantable organs shortage in the United States. Organ procurement organizations (OPOs) increasingly use the Internet for organ donation consent. Methods An analysis of OPO Web sites available to the public for enrollment and consent for organ donation. The Web sites and consent forms were examined for the minimal information recommended by the United States Department of Health and Human Services for informed consent. Content scores (...) were calculated as percentages of data elements in four information categories: donor knowledge, donor consent reinforcement, donation promotion, and informed consent. Results There were 60 Web sites for organ donation enrollment serving the 52 states. The median percent (10 percentile-90 percentile) content scores of the Web sites for donor knowledge, donor consent reinforcement, and donation promotion were 33% (20–47), 79% (57–86), and 75% (50–100), respectively. The informed consent score was 0% (0–33). The content scores for donor knowledge and informed consent were significantly lower than donor consent reinforcement and donation promotion for all Web sites (P < .05). The content scores for the four categories were similar among the 11 regions of the United Network for Organ Sharing. Conclusion The Web sites and consent forms for public enrollment in organ donation do not fulfill the necessary requirements for informed consent. The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of organ donation process. Independent regulatory oversight is essential to ensure that Internet enrollment for organ donation complies with legal and ethical standards for informed consent. (shrink)