The question that I address in this paper is whether there is a right to privacy. It is not the question whether in the United States there is a legal right to privacy or, more particularly, a constitutional right to privacy. There are any number of ordinary legal rights and specific constitutional rights that might be so described, and the U.S. Supreme Court has referred also to a generic “right to privacy” that is implicit in the U.S. Constitution. Nor is (...) the question that I address whether persons have a moral claim to privacy that others ought to respect. I assume that in many circumstances, respecting a person's claim to privacy is productive of the good and, if so, that the claim ought to be respected. Rather, my question is whether persons have a right to privacy not dependent on positive law, such that it ought ordinarily to be respected without regard to the consequences, good or bad, simply because it is right. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

This article compares three frameworks for legal regulation of the human body. Property law systematically favors those who use the body to create commercial products. Yet contract and privacy rights cannot compete with the property paradigm, which alone affords a complete bundle of rights enforceable against the whole world. In the face of researchers' property rights, the theoretical freedom to contract and the meager interest in privacy leave those who supply body parts vulnerable to exploitation.

The legal status of the human body is hotly contested, yet the law of the body remains in a state of confusion and chaos. Sometimes the body is treated as an object of property, sometimes it is dealt with under the rubric of contract, and sometimes it is not conceived as property at all, but rather as the subject of privacy rights. Which body of law should become the law of the body? This question is even more pressing in the (...) context of current biomedical research, which permits commodification and commercialization of the body by everyone except the person who provides the “raw materials.” The lack of property protection for tangible parts of the human body is in stark contrast to the extensive protection granted to intellectual property in the body in the form of patents upon human genes and cell lines. Moreover, even courts that reject ownership claims on the part of those who supply body parts appear willing to grant property rights to scientists, universities, and others who use those body parts to conduct research and create products. (shrink)

Everyone knows that something has gone wrong, in the United States, with the conventions of privacy. Along with a vastly increased tolerance for variation in sexual life we have seen a sharp increase in prurient and censorious attention to the sexual lives of public figures and famous persons, past and present. The culture seems to be growing more tolerant and more intolerant at the same time, though perhaps different parts of it are involved in the two movements.

Is genetic information of special ethical significance? Does it require special regulation? There is considerable contemporary debate about this question (the genetic exceptionalism debate). Genetic information is an ambiguous term and, as an aid to avoiding conflation in the genetic exceptionalism debate, a detailed account is given of just how and why genetic information is ambiguous. Whilst ambiguity is a ubiquitous problem of communication, it is suggested that genetic information is ambiguous in a particular way, one that gives rise to (...) the problem of significance creep (i.e., where claims about the significance of certain kinds of genetic information in one context influence our thinking about the significance of other kinds of genetic information in other contexts). A contextual and contrastive methodology is proposed: evaluating the significance of genetic information requires us to be sensitive to the polysemy of genetic information across contexts and then examine the contrast in significance (if any) of genetic, as opposed to nongenetic, information within contexts. This, in turn, suggests that a proper solution to the regulatory question requires us to pay more attention to how and why information, and its acquisition, possession and use, come to be of ethical significance. (shrink)

Is genetic information of special ethical significance? Does it require special regulation? There is considerable contemporary debate about this question. Genetic information is an ambiguous term and, as an aid to avoiding conflation in the genetic exceptionalism debate, a detailed account is given of just how and why genetic information is ambiguous. Whilst ambiguity is a ubiquitous problem of communication, it is suggested that genetic information is ambiguous in a particular way, one that gives rise to the problem of significance (...) creep. A contextual and contrastive methodology is proposed: evaluating the significance of genetic information requires us to be sensitive to the polysemy of genetic information across contexts and then examine the contrast in significance of genetic, as opposed to nongenetic, information within contexts. This, in turn, suggests that a proper solution to the regulatory question requires us to pay more attention to how and why information, and its acquisition, possession and use, come to be of ethical significance. (shrink)

For decades, the greater part of efforts to improve regulatory frameworks for research ethics has focused on informed consent procedures; their design, codification and regulation. Why is informed consent thought to be so important? Since the publication of the Belmont Report in 1979, the standard response has been that obtaining informed consent is a way of treating individuals as autonomous agents. Despite its political success, the philosophical validity of this Belmont view cannot be taken for granted. If the Belmont view (...) is to be based on a conception of autonomy that generates moral justification, it will either have to be reinterpreted along Kantian lines or coupled with a something like Mill’s conception of individuality. The Kantian interpretation would be a radical reinterpretation of the Belmont view, while the Millian justification is incompatible with the liberal requirement that justification for public policy should be neutral between controversial conceptions of the good. This consequence might be avoided by replacing Mill’s conception of individuality with a procedural conception of autonomy, but I argue that the resulting view would in fact fail to support a non-Kantian, autonomy-based justification of informed consent. These difficulties suggest that insofar as informed consent is justified by respect for persons and considerations of autonomy, as the Belmont report maintained, the justification should be along the lines of Kantian autonomy and not individual autonomy. (shrink)

An alleged moral right to informational privacy assumes that we should have control over information about ourselves. What is the philosophical justification for this control? I think that one prevalent answer to this question—an answer that has to do with the justification of negative rights generally—will not do.

This book attacks the assumption found in moral philosophy that social control as such is an intellectually and morally destructive force. It replaces this view with a richer and deeper perspective on the nature of social character aimed at showing how social freedom cannot mean immunity from social pressure. The author demonstrates how our competence as rational and social agents depends on a constructive adaptation of social control mechanisms. Our facility at achieving our goals is enhanced, rather than undermined, by (...) social control. The author then articulates sources, contracts, and degrees of legitimate social control in different social and historical settings. Drawing on a wide range of material in moral and political philosophy, law, cognitive and social psychology, anthropology and literature, Professor Schoeman shows how the aim of moral philosophy ought to be to understand our social character, not to establish fortifications against it in the name of rationality and autonomy. (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)

_Bodies for Sale: Ethics and Exploitation in the Human Body Trade _explores the philosophical and practical issues raised by activities such as surrogacy and organ trafficking. Stephen Wilkinson asks what is it that makes some commercial uses of the body controversial, whether the arguments against commercial exploitation stand up, and whether legislation outlawing such practices is really justified. In Part One Wilkinson explains and analyses some of the notoriously slippery concepts used in the body commodification debate, including exploitation, harm and (...) consent. In Part Two he focuses on three controversial issues outlining contemporary regulation and investigating both the moral issues and the arguments for legal prohibition. (shrink)

The aim of compiling the various essays presented here is to make readily accessible many of the most significant and influential discussions of privacy to be found in the literature. In addition to being representative of the diversity of attitudes toward privacy, this collection has a coherence that results from the authors' focus on the same issues and theories. The main issue addressed in this book is the moral significance of privacy. Some social science and legal treatments are included because (...) of their direct bearing on the moral issues that privacy raises. In addition to the classics on privacy, the author has included an interpretative essay on the privacy literature, which provides a philosophical guideline as to what the issues are and how various thinkers have contributed to their resolution. (shrink)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while also explaining why (...) trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (shrink)

This important new book develops a new concept of autonomy. The notion of autonomy has emerged as central to contemporary moral and political philosophy, particularly in the area of applied ethics. professor Dworkin examines the nature and value of autonomy and uses the concept to analyse various practical moral issues such as proxy consent in the medical context, paternalism, and entrapment by law enforcement officials.