This article reviews recent developments in health care law, focusing on the engagement of law as a partner in health care innovation. The article addresses: the history and contents of recent United States federal law restricting the use of genetic information by insurers and employers; the recent federal policy recommending routine HIV testing; the recent revision of federal policy regarding the funding of human embryonic stem cell research; the history, current status, and need for future attention to advance directives; the (...) recent emergence of medical–legal partnerships and their benefits for patients; the obesity epidemic and its implications for the child’s right to health under international conventions. (shrink)

Research ethics education in the biosciences has not historically been a priority for research universities despite the fact that funding agencies, government regulators, and the parties involved in the research enterprise agree that it ought to be. The confluence of a number of factors, including scrutiny and regulation due to increased public awareness of the impact of basic research on society, increased public and private funding, increased diversity and collaboration among researchers, the impressive success and speed of research advances, and (...) high-profile cases of misconduct, have made it necessary to reexamine how the bioscience research community at all levels provides ethics education to its own. We discuss the need to and reasons for making ethics integral to the education of bioscientists, approaches to achieving this goal, challenges this goal presents, and responses to those challenges. (shrink)

This manuscript describes a pilot study in ethics education employing a problem-based learning approach to the study of novel, complex, ethically fraught, unavoidably public, and unavoidably divisive policy problems, called “fractious problems,” in bioscience and biotechnology. Diverse graduate and professional students from four US institutions and disciplines spanning science, engineering, humanities, social science, law, and medicine analyzed fractious problems employing “navigational skills” tailored to the distinctive features of these problems. The students presented their results to policymakers, stakeholders, experts, and members (...) of the public. This approach may provide a model for educating future bioscientists and bioengineers so that they can meaningfully contribute to the social understanding and resolution of challenging policy problems generated by their work. (shrink)

This essay discusses four challenges posed to a global bioethics by articles on: divergent national policies on compensation of egg donors for IVF, efforts to advance the development of international guidelines for the management of neonates on the edge of viability, bioethics training workshops in Uganda, a bioethicist’s reflection on a visit to Pakistan. The article then discusses several approaches to developing a global bioethics and how these approaches might meet the four challenges. The essay concludes with discussion of the (...) author’s development of a navigational approach to policymaking for fractious bioethical policy problems and how this compares to other approaches to developing a global bioethics. (shrink)

Human genetic engineering may soon be possible. The gathering debate about this prospect already threatens to become mired in irresolvable disagreement. After surveying the scientific and technological developments that have brought us to this pass, _The Ethics of Genetic Engineering_ focuses on the ethical and policy debate, noting the deep divide that separates proponents and opponents. The book locates the source of this divide in differing framing assumptions: reductionist pluralist on one side, holist communitarian on the other. The book argues (...) that we must bridge this divide, drawing on the resources from both encampments, if we are to understand and cope with the distinctive problems posed by genetic engineering. These problems, termed "fractious problems," are novel, complex, ethically fraught, unavoidably of public concern, and unavoidably divisive. Berry examines three prominent ethical and political theories – utilitarianism, Kantianism, and virtue ethics – to consider their competency in bridging the divide and addressing these fractious problems. The book concludes that virtue ethics can best guide parental decision making and that a new policymaking approach sketched here, a "navigational approach," can best guide policymaking. These approaches enable us to gain a rich understanding of the problems posed and to craft resolutions adequate to their challenges. (shrink)

This essay describes an interdisciplinary educational experiment in health law. The experiment was funded by the National Science Foundation, received Institutional Review Board approvals, incorporated inter-disciplinary faculty and graduate students from several universities in Atlanta, and employed problem-based learning. After discussing my motivation to undertake this experimental approach to teaching health law, I explain how the course was developed and structured and how we are assessing its results. I also offer some reflections on why other health law teachers might be (...) motivated to incorporate some features of our experimental approach into their own classes, and some thoughts on how they might do so based on lessons learned.I undertook this experiment to test in an educational setting an approach to problem solving that I have developed for addressing certain kinds of seemingly intractable policy problems. I call this a “navigational approach” to “fractious problems.”. (shrink)

This essay describes an interdisciplinary educational experiment in health law. The experiment was funded by the National Science Foundation, received Institutional Review Board approvals, incorporated inter-disciplinary faculty and graduate students from several universities in Atlanta, and employed problem-based learning. After discussing my motivation to undertake this experimental approach to teaching health law, I explain how the course was developed and structured and how we are assessing its results. I also offer some reflections on why other health law teachers might be (...) motivated to incorporate some features of our experimental approach into their own classes, and some thoughts on how they might do so based on lessons learned.I undertook this experiment to test in an educational setting an approach to problem solving that I have developed for addressing certain kinds of seemingly intractable policy problems. I call this a “navigational approach” to “fractious problems.”. (shrink)

This essay describes an interdisciplinary educational experiment in health law. The experiment was funded by the National Science Foundation, received Institutional Review Board approvals, incorporated inter-disciplinary faculty and graduate students from several universities in Atlanta, and employed problem-based learning. After discussing my motivation to undertake this experimental approach to teaching health law, I explain how the course was developed and structured and how we are assessing its results. I also offer some reflections on why other health law teachers might be (...) motivated to incorporate some features of our experimental approach into their own classes, and some thoughts on how they might do so based on lessons learned.I undertook this experiment to test in an educational setting an approach to problem solving that I have developed for addressing certain kinds of seemingly intractable policy problems. I call this a “navigational approach” to “fractious problems.”. (shrink)

We believe that the professional responsibility of bioscience and biotechnology professionals includes a social responsibility to contribute to the resolution of ethically fraught policy problems generated by their work. It follows that educators have a professional responsibility to prepare future professionals to discharge this responsibility. This essay discusses two pilot projects in ethics pedagogy focused on particularly challenging policy problems, which we call “fractious problems”. The projects aimed to advance future professionals’ acquisition of “fractious problem navigational” skills, a set of (...) skills designed to enable broad and deep understanding of fractious problems and the design of good policy resolutions for them. A secondary objective was to enhance future professionals’ motivation to apply these skills to help their communities resolve these problems. The projects employed “problem based learning” courses to advance these learning objectives. A new assessment instrument, “Skills for Science/Engineering Ethics Test”, was designed and administered to measure the success of the courses in doing so. This essay first discusses the rationale for the pilot projects, and then describes the design of the pilot courses and presents the results of our assessment using SkillSET in the first pilot project and the revised SkillSET 2.0 in the second pilot project. The essay concludes with discussion of observations and results. (shrink)

This study analyzes 435 oocyte donor recruitment advertisements to assess whether entities recruiting donors of oocytes to be used for in vitro fertilization (IVF) procedures include a disclosure of risks associated with the donation process in their advertisements. Such disclosure is required by the self-regulatory guidelines of the American Society for Reproductive Medicine (ASRM) and by law in California for advertisements placed in the state. We find very low rates of risk disclosure across entity types and regulatory regimes, although risk (...) disclosure is more common in advertisements placed by entities subject to ASRM's self-regulatory guidelines. Advertisements placed in California are more likely to include risk disclosure, but disclosure rates are still quite low. California-based entities advertising outside the state are more likely to include risk disclosure than non-California entities, suggesting that California's law may have a modest “halo effect.” Our results suggest that there is a significant ethical and policy problem with the status quo in light of the known and unknown risks of oocyte donation and the importance of risk disclosure to informed consent in the context of oocyte donation. (shrink)

In vitro fertilization using donated oocytes has proven to be an effective treatment option for many prospective parents struggling with infertility, and the usage of donated oocytes in assisted reproduction has increased markedly since the technique was first successfully used in 1984. Data published by the Centers for Disease Control and Prevention on the use of assisted reproductive technologies in the United States indicate that approximately 12% of all ART cycles in the country now use donated oocytes. The increased use (...) of oocyte donation in the United States has prompted discussion regarding risks associated with the process and how best to ensure the safety of oocyte donors.Physical risks associated with oocyte donation include bleeding, infection, ovarian hyperstimulation syndrome and a potential, although unconfirmed, increased risk of developing various forms of cancer, such as uterine, colon, breast, ovarian, and endometrial cancers. (shrink)

S. Matthew Liao's paper (2005) exemplifies what I characterize as the third stage in the lifecycle of bioethics, “bioethics as co-PI,” in which bioethics asserts a role in directing the biomedical...

This article reviews recent developments in health care law, focusing on the engagement of law as a partner in health care innovation. The article addresses: the history and contents of recent United States federal law restricting the use of genetic information by insurers and employers; the recent federal policy recommending routine HIV testing; the recent revision of federal policy regarding the funding of human embryonic stem cell research; the history, current status, and need for future attention to advance directives; the (...) recent emergence of medical–legal partnerships and their benefits for patients; the obesity epidemic and its implications for the child’s right to health under international conventions. (shrink)

This article reviews recent developments in health care law, focusing on controversy at the intersection of health care law and culture. The article addresses: emerging issues in federal regulatory oversight of the rapidly developing market in direct-to-consumer genetic testing, including questions about the role of government oversight and professional mediation of consumer choice; continuing controversies surrounding stem cell research and therapies and the implications of these controversies for healthcare institutions; a controversy in India arising at the intersection of abortion law (...) and the rights of the disabled but implicating a broader set of cross-cultural issues; and the education of U.S. health care providers and lawyers in the theory and practice of cultural competency. (shrink)

Two arguments are critiqued here. The first is that hominin mothers “parked” their offspring; the evidence does not support that position. The second is that motherese developed to control the behavior of nonambulatory infants. However, Falk's case is stronger if we apply it to children who are already walking and more likely to be influenced by verbal information.

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Bloom's eloquent and comprehensive treatment of early word learning holds that social intention is foundational for language development. While we generally support his thesis, we call into question two of his proposals: (1) that attention to social information in the environment implies social intent, and (2) that infants are sensitive to social intent at the very beginnings of word learning.

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

§1 According to the paradigmatic formula offered by Kant, the philosopher’s task consists of demonstrating “how we ought to think” as opposed to “how we do think” – that is, logical rules or norms must be separated from the functioning principles of the human mind or from psychological laws. As it is well-known, in the “Preface” to the second edition of the Critique of Pure Reason, the German philosopher stands against “some moderns” who “have thought to enlarge” logic “interpolating psycholo...

Time theft is a costly burden on organizations. However, there is limited knowledge about why time theft occurs. To advance this line of research, this conceptual paper looks at the association between organizational injustice and time theft from identity, moral, and equity perspectives. This paper proposes that organizational injustice triggers time theft through decreased organizational identification. It also proposes that moral disengagement and equity sensitivity moderate this process such that organizational identification is less likely to mediate among employees with high (...) moral disengagement and more likely to mediate among employees who are equity sensitives and entitleds. (shrink)

In this wide-ranging conversation, Berry and Galloway explore the implications of undertaking media theoretical work for critiquing the digital in a time when networks proliferate and, as Galloway claims, we need to ‘forget Deleuze’. Through the lens of Galloway’s new book, Laruelle: Against the Digital, the potential of a ‘non-philosophy’ for media is probed. From the import of the allegorical method from excommunication to the question of networks, they discuss Galloway’s recent work and reflect on the implications of computation (...) for media theory, thinking about media objects, and critical theory. (shrink)

Introduction No consent for health and medical research is appropriate when the criteria for a waiver of consent are met, yet some ethics committees and data custodians still require informed consent. Methods A single-blind parallel-group randomised controlled trial: 1129 families of children born at a South Australian hospital were sent information explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance with 4 weeks to opt in or opt out by reply form, telephone or email. A subsequent (...) telephone interview gauged the intent of 1026 parents (91%) in relation to their actions and the sociodemographic differences between participants and non-participants in each arm. Results The participation rate was 21% (n=120/564) in the opt-in arm and 96% (n=540/565) in the opt-out arm (χ2 (1 df) = 567.7, p<0.001). Participants in the opt-in arm were more likely than non-participants to be older, married/de facto, university educated and of higher socioeconomic status. Participants in the opt-out arm were similar to non-participants, except men were more likely to opt out. Substantial proportions did not receive, understand or properly consider study invitations, and opting in or opting out behaviour was often at odds with parents' stated underlying intentions. Conclusions The opt-in approach resulted in low participation and a biased sample that would render any subsequent data linkage unfeasible, while the opt-out approach achieved high participation and a representative sample. The waiver of consent afforded under current privacy regulations for data linkage studies meeting all appropriate criteria should be granted by ethics committees, and supported by data custodians. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000332022. (shrink)

dolce, the first top-level ontology to be axiomatized, has remained stable for twenty years and today is broadly used in a variety of domains. dolce is inspired by cognitive and linguistic considerations and aims to model a commonsense view of reality, like the one human beings exploit in everyday life in areas as diverse as socio-technical systems, manufacturing, financial transactions and cultural heritage. dolce clearly lists the ontological choices it is based upon, relies on philosophical principles, is richly formalized, and (...) is built according to well-established ontological methodologies, e.g. OntoClean. Because of these features, it has inspired most of the existing top-level ontologies and has been used to develop or improve standards and public domain resources. Being a foundational ontology, dolce is not directly concerned with domain knowledge. Its purpose is to provide the general categories and relations needed to give a coherent view of reality, to integrate domain knowledge, and to mediate across domains. In these 20 years dolce has shown that applied ontologies can be stable and that interoperability across reference and domain ontologies is a reality. This paper briefly introduces the ontology and shows how to use it on a few modeling cases. (shrink)

This book is a critical introduction to code and software that develops an understanding of its social and philosophical implications in the digital age. Written specifically for people interested in the subject from a non-technical background, the book provides a lively and interesting analysis of these new media forms.