An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched (...) to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research. (shrink)

Summary Descartes' two treatises of corpuscular-mechanical natural philosophy—Le Monde (1633) and the Principia philosophiae (1644/1647)—differ in many respects. Some historians of science have studied their significantly different theories of matter and elements. Others have routinely noted that the Principia cites much evidence regarding magnetism, sunspots, novae and variable stars which is absent from Le Monde. We argue that far from being unrelated or even opposed intellectual practices inside the Principles, Descartes' moves in matter and element theory and his adoption of (...) wide swathes of novel matters of fact, were two sides of the same coin—that coin being his strategies for improving the systematic power, scope and consistency of the natural philosophy presented in the Principia. We find that Descartes' systematising strategy centred upon weaving ranges of novel matters of fact into explanatory and descriptive narratives with cosmic sweep and radical realist Copernican intent. Gambits of this type have recently been labelled as ‘cosmographical’ (the natural philosophical relating of heavens and earth in contemporary usage). Realist Copernican natural philosophers, from Copernicus himself, through Bruno, Gilbert and Galileo did this to varying degrees; but, we suggest, Descartes presented in Books III and IV of the Principia the most elaborate and strategically planned version of it, underneath the ostensible textbook style of the work. (shrink)

: Pharmacogenetics offers the prospect of an era of safer and more effective drugs, as well as more individualized use of drug therapies. Before the benefits of pharmacogenetics can be realized, the ethical issues that arise in research and clinical application of pharmacogenetic technologies must be addressed. The ethical issues raised by pharmacogenetics can be addressed under six headings: regulatory oversight, confidentiality and privacy, informed consent, availability of drugs, access, and clinicians' changing responsibilities in the era of pharmacogenetic medicine. We (...) analyze each of these categories of ethical issues and provide policy approaches for addressing them. (shrink)

New edition (previously 1971) of an anthology for an undergraduate course. Comprises four parts: theories, explanation and causality, confirmation of scientific hypotheses, selected problems of particular sciences. Annotation copyrighted by Book News, Inc., Portland, OR.

Morality based upon categorical imperatives. On a supposed right to tell lies from benevolent motives, by I. Kant.--Utilitarian morality, by H. Sidgwick.--What makes right acts right? by Sir D. Ross.--Utilitarianism, universalisation, and our duty to be just, by J. Harrison.--Extreme and restricted utilitarianism, by J. J. C. Smart.--What if everyone did that? by C. Strang.--Toward a credible form of utilitarianism, by R. B. Brandt.

In recent years, bioethics has increasingly become an international area of inquiry with major contributions being made not only in North America but also in Europe and in the Pacific Rim countries. This general observation is particularly true for research ethics. Little attention has been paid, however, to this internationalization of bioethics in general and research ethics in particular, and there are few studies comparing what has emerged in the different countries.

Public statements by various international groups emphasize that decisions to undergo genetic screening, either for disease-carrier status or for predisposition-to-disease status, and decisions about the use of the resulting information should be made voluntarily by the party to be screened. For example, the World Medical Association, in its Declaration on the Human Genome Project, says, “One should respect the will of persons screened and their right to decide about participation and about the use of the information obtained.” Giving this principle (...) a name, “voluntarism,” the Council for International Organizations of Medical Sciences, in its Declaration of Inuyama , announced that “voluntarism should be the guiding principle in the provision of genetic services. (shrink)

A social study of "An essay concerning human understanding." Includes bibliographical references and index.

A broad critical review of national policies on biomedical research - human, epidemiologic, clinical trials, genetic, reproductive, etc.

Integrating theory with case studies, this book examines the practical application of moral theory in clinical decision-making through 40 composite cases based on actual clinical experience. Complex, realistic, and challenging, these examples contain the multiplicity of factors faced in clinical crises, making this a superb exploration of the ways in which theory relates to actual life-or-death situations.

Responsible conduct of research courses are widely taught, but little is known about the purposes or effectiveness of such courses. As one way to assess the purposes of these courses, students were surveyed about their perspectives after recent completion of one of eleven different research ethics courses at ten different institutions. Participants enrolled in RCR courses in spring and fall of 2003 received a voluntary, anonymous survey from their instructors at the completion of the course. Responses were received from 268 (...) participants. Seventy-seven percent of open-ended responses listed specific kinds of information learned; only a few respondents talked about changes in skills or attitudes. The perception that courses did more to provide information than to foster skills or attitudes was verified in quantitative responses. Over 75% of the respondents specifically noted that courses were useful in preparing them to recognize, avoid, and respond to research misconduct. The two principal findings of this multi-institutional study are that respondents reported: a wide variety of positive outcomes for research ethics courses, but that the impact on knowledge was greater than that for changes in skills or attitudes. (shrink)

Baruch Brody contends that the fundamental assumption on which the tradition is based is erroneous and that once this assumption is shown to be in error, all philosophical problems in this area have to be rethought. Originally published in 1980. The Princeton Legacy Library uses the latest print-on-demand technology to again make available previously out-of-print books from the distinguished backlist of Princeton University Press. These editions preserve the original texts of these important books while presenting them in durable paperback (...) and hardcover editions. The goal of the Princeton Legacy Library is to vastly increase access to the rich scholarly heritage found in the thousands of books published by Princeton University Press since its founding in 1905. (shrink)

"When it comes to morality as it is practiced in medicine, Brody makes clear that the ethical issues are never as simple as black and white - that there are myriad factors and fine nuances that can and should challenge decision making as it is commonly practiced in difficult medical cases. In this collection, delving thoughtfully and systematically into methodology, research ethics, clinical ethics, and Jewish medical ethics, he tackles thorny life-and-death questions head-on and fearlessly. He casts a light (...) into all the corners of end-of-life decisions - a field in which he has exemplary credentials - while illuminating a new understanding of morality and ethics." "The introduction outlines much of Brody's approach, defines the terminology used, and contrasts his ethical positions with much of the competing literature, Taking Issue will be invaluable to students and scholars in medical ethics, bioethics, and the philosophy of medicine." "Baruch A. Brody is the Leon Jaworski Professor Biomedical Ethics and director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. He is also a professor of philosophy at Rice University and director of the Ethics program at the Methodist Hospital."--BOOK JACKET. (shrink)

Empirical research can aid ethical reflection in bioethics by identifying issues, by seeing how they are currently resolved, and by assessing the consequences of these current resolutions. This potential can be misused when the ethical issues in question are fundamentally non-consequentialist or when they are consequentialist but the empirical research fails to address the important consequences. An example of the former problem is some recent studies about bad consequences resulting from commercialized living kidney donor programs. These consequences could be avoided, (...) but the crucial non-consequentialist ethical issues about exploitation and commercialization would still remain. Examples of the latter problem are provided by recent studies of the allocation of ICU beds and of physician deception, where important consequences were not adequately studied. (shrink)

This paper distinguishes four major types of futility (physiological, imminent demise, lethal condition, and qualitative) that have been advocated in the literature either in a patient dependent or a patient independent fashion. It proposes five criteria (precision, prospective, social acceptability, significant number, and non-agreement) that any definition of futility must satisfy if it is to serve as the basis for unilaterally limiting futile care. It then argues that none of the definitions that have been advocated meet the criteria, primarily because (...) their proponents have not paid sufficient attention to the problematic nature of the data supporting the use of their definitions. (shrink)

It seems to me that those who place great value on the right to human freedom can be badly divided on the question of the use of force by states to defend the liberties of those who are not citizens of that particular state. Concerned about the liberties to be defended, they might be enthusiastic supporters of the use of such force by liberty-loving countries throughout the world. Concerned about the liberties that might be violated when the state marshals its (...) forces for use internationally, they might adopt a more isolationist approach to this issue. This paper is an attempt to help clarify this conflict by looking at some of the philosophical issues it raises. Because I wish to avoid factual debates about current conflicts, I will give no real-life examples. However, they are on my mind, and I hope the reader will keep them in mind as well. (shrink)

This paper identifies four major forms of scholarship in bioethics: empirical research, the articulation of mid-level principles of bioethics, the relating of these principles to fundamental moral theories, and discussions of the bioethical implications of legal principles and health delivery policies. It develops a reflective equilibrium approach to the relation between these four forms of scholarship. It then presents, in light of this approach, criteria for quality research in each of these forms of scholarship in bioethics. Keywords: quality of scholarship, (...) reflective equilibria in bioethics, research in bioethics CiteULike Connotea Del.icio.us What's this? (shrink)

In this paper, I consider a variety of objections against the covering-law model of scientific explanation, show that Aristotle was already aware of them and had solutions for them, and argue that these solutions are correct. These solutions involve the notions of nonHumean causality and of essential properties. There are a great many familiar objections, both methodological and epistemological, to introducing these concepts into the methodology of science, but I show that these objections are based upon misunderstandings of these concepts.

Book reviewed in this article: Morality, Mortality: Death and Whom to Save from It. By Frances Kamm.

The issue of biopiracy has attracted considerable attention in recent years. The Convention on Biological Diversity adopted a principle of state sovereignty over biological resources and the genetic information contained within those resources to address this issue. It is argued that this principle has not been adequately justified and that there are other solutions to the issue of biopiracy, based on different theories of justice, that deserve greater consideration. These alternatives include the common heritage of mankind principle and the global (...) commons principle. (shrink)

This book is the first systematic integrated analysis of ethical issues in health care which combines an introduction to moral theory, a set of readings in health care ethics, and an extensive set of case studies.