Online research in philosophy

Machine generated contents note: 1. Introduction: why focus on informed consent?; 2. Deciding who decides: capacity and consent; 3. Putting the informed into 'informed consent': information and decision-making; 4. Freedom of expression: the voluntary nature of consent; 5. A patient's prerogative? The continuing nature of consent; 6. Concluding words about consent; Index.

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.

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.

Patients belonging to ethnic, racial, and religious minorities have been all but excluded from the legal academy's on-going conversation about informed consent. This article repairs that egregious omission. It begins by observing the narrowing of ethical justifications that underlie our informed consent law, tracing the ethical literature from the ancients to modern formulations of autonomy-centered models. Next, this article reviews the vast body of empirical data available in social science literature, that demonstrates how distinct from the autonomy model the broad range of values and priorities held by patients from racial, ethnic, and religious minority groups is. The conclusion that informed consent's focus on the western notion of autonomy affirmatively harms minority patients is inescapable. The article concludes by offering a fiduciary model of informed consent law that could improve the quality of health care for more than 100 million minority patients, potentially at risk under current law while also regulating the informed consent procedure and practice in a way that will bring balance and justice to all American patients and providers.

Given the increase in research in less developed countries and the necessary reliance on informed consent guidelines, we should pay close attention to the extent to which these guidelines address important cross-cultural differences. I argue that the current underlying conception of autonomy that is reflected in informed consent guidelines fails to adequately address important cultural differences—namely differences in conceptions of the person. Since this conception directly influences one’s conception of autonomy, the narrowness of the current guidelines demands attention. In examining a conception of the person that is popular in Africa—a less developed country in which much research is currently being conducted—I argue that the current foundation for informed consent should rest on strong relational autonomy in order to be more globally applicable. This revision, in turn, calls for changes to the policies for informed consent.

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.

Informed consent to therapy is the legal doctrine which imposes on a physician the duty to explain the nature and risks of a proposed treatment so the patient can make an informed decision whether to undergo the treatment. The doctrine has spawned tremendous controversy in the legal and medical professions.In this paper I examine the doctrine of informed consent as developed by the courts. The thrust of my criticism is that as the doctrine has been developed, it significantly undercuts individual autonomy. Several modifications are suggested which would provide more support for autonomy interests.

In contemporary Western biomedical ethics, informed consent practices are commonly justified in terms of the intrinsic value of patient autonomy. James Stacey Taylor maintains that this conception of the moral grounding of medical informed consent is mistaken. On the basis of his reasoning to that effect, Taylor argues that medical informed consent is justified by the instrumental value of personal autonomy. In this article, I examine whether Taylor's justification of medical informed consent is plausible.

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy.

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.