Background Informed consent procedures for large population-based cohort studies should be comprehensive and easy-to-use. This is particularly challenging when participants from different socio-economic groups and multicultural ethnic backgrounds are involved. Recently, more and more studies have tried to use multimedia in informed consent procedures. We describe the development and testing of a digital informed consent app and elaborate on whether this may contribute to a comprehensive and practical procedure to obtain informed consent for public health research. Methods In a sample (...) of parents with young children, we used a mixed method approach to study the user experience of an informed consent app and evaluate whether it can be used to adequately inform people and register their consent. Through semi-structured interviews we investigated participants’ experiences with and opinions about the app, with a special focus on comprehensibility of the content and the usability of the app. Information retention questions were asked to evaluate to what extent participants could recall key aspects of the provided study information. Results The 30 participants in this study used the app between 4 and 15 min to give their consent. Overall, they found the app well-designed, informative and easy to use. To learn more about the study for which informed consent is asked, most of the participants chose to watch the animated film, which was generally found to convey information in a clear manner. The identification process was met with mixed reactions, with some feeling it as a secure way to give consent, while for others it contradicted their view of using data anonymously. Information retention questions showed that while all participants remembered various aspects of the study, fewer than half answered all four questions satisfactorily. Conclusion Our study shows that a well-designed informed consent app can be an effective tool to inform eligible participants and to record consents. Still, some issues remain, including trust barriers towards the identification procedure and lack of information retention in some participants. When implementing consent procedures that incorporate digital formats, it may be beneficial to also invest in a complementary face-to-face recruitment approach. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research InstituteEric M. Meslin (bio), Elizabeth J. Thomson (bio), and Joy T. Boyer (bio)Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and the (...) public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program’s current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.Evolution and Goals of the ELSI Research ProgramThe HGP’s “genomic” goals are unique: to map and sequence the entire human genome—some 3 billion base pairs that make up approximately 80–100,000 genes—and the genomes of related model organisms by the year 2005. This goal was particularly ambitious since, when it was proposed, the technologies for mapping and sequencing had yet to be developed. When the HGP was first established, its organizers also elaborated a set of ELSI goals, which they saw as vital to the success of the genome project. The original ELSI goals were: (1) to anticipate and address the implications of the HGP for individuals and society and (2) to examine the ELSI consequences of mapping and sequencing the human genome in order to stimulate public discussion. To meet these goals, the NHGRI created its ELSI research program in 1990. Along with mapping, sequencing, [End Page 291] and mammalian genetics, ELSI was one of four original branches in the NHGRI Division of Extramural Research that funded research in those areas. Although the individual “branches” no longer exist, the mechanisms for funding research remain much the same. While the overall goals of the program have not changed, the specific ways of achieving the goals have continued to evolve. The importance of the ELSI program lies not in the collection of a full set of data that will be valuable in and of itself, but in the value of using and interpreting this new set of information.Early on, the NHGRI described a set of somewhat more specific goals: (1) to develop a program to help understand the ethical, legal, and social implications of the human genome project and (2) to identify and define the major issues of concern and develop policy options to address them. These more specific goals have been largely met. As the most recent biennial NHGRI Progress Report notes, “a robust ELSI research and education program has been established, many of the most urgent ELSI issues have been identified, and many policy options to address these issues have been proposed” (NCHGR 1995, p. 21). Between 1990 and 1996, ELSI provided more than $32.5 million in funding through 128 research and education grants in more than 30 states and in Canada (Table 1). The ELSI research budget is unique in that when originally created, it was specifically tied to the amount of money provided for the overall NHGRI budget. The NHGRI originally devoted 3 percent of its extramural budget to fund ELSI projects, but in FY 1991, it increased the ELSI budget to 5 percent, a figure that remains today. Table 2 lists the expenditures for each fiscal year since 1990 and the cumulative expenditures to date. The ELSI research budget at NHGRI this year will be about $7 million. When other sources of funding—e.g., co-funding arrangements with other institutes and agencies and the funding of ELSI... (shrink)

Composed more than 2,000 years ago during a turbulent period of Chinese history, the Dao de jing set forth an alternative vision of reality in a world torn apart by violence and betrayal. Daoism, as this subtle but enduring philosophy came to be known, offers a comprehensive view of experience grounded in a full understanding of the wonders hidden in the ordinary. Now in this luminous new translation, based on the recently discovered ancient bamboo scrolls, China scholars Roger T. Ames (...) and David L. Hall bring the timeless wisdom of the Dao de jing into our contemporary world. Though attributed to Laozi, “the Old Master,” the Dao de jing is, in fact, of unknown authorship and may well have originated in an oral tradition four hundred years before the time of Christ. Eschewing philosophical dogma, the Dao de jing set forth a series of maxims that outlined a new perspective on reality and invited readers to embark on a regimen of self-cultivation. In the Daoist world view, each particular element in our experience sends out an endless series of ripples throughout the cosmos. The unstated goal of the Dao de jing is self-transformation–the attainment of personal excellence that flows from the world and back into it. Responding to the teachings of Confucius, the Dao de jing revitalizes moral behavior by recommending a spontaneity made possible by the cultivated “habits” of the individual. In this elegant volume, Ames and Hall feature the original Chinese texts of the Dao de jing and translate them into crisp, chiseled English that reads like poetry. Each of the eighty-one brief chapters is followed by clear, thought-provoking commentary exploring the layers of meaning in the text. The book’s extensive introduction is a model of accessible scholarship in which Ames and Hall consider the origin of the text, place the emergence of Daoist philosophy in its historical and political context, and outline its central tenets. The Dao de jing is a work of timeless wisdom and beauty, as vital today as it was in ancient China. This new version will stand as both a compelling introduction to the complexities of Daoist thought and as the classic modern English translation. (shrink)

Book I: Before -- The origin -- Book II: Genesis -- Here goes nothing -- The light at the end of the tunnel -- Directions -- The geography of nowhere -- Book III: In residence -- Foyer -- Living room -- Dinner party -- East Room -- West Wing -- A room of one's own -- The children's hour -- In the garden -- Reflecting pool -- Book IV: Public library -- Dictionary of nothing -- The reading room -- Writers' (...) room -- In the stacks -- Samuel Beckett -- Italo Calvino -- E.M. Cioran -- Edmond Jabès -- Thomas Merton -- Rumi -- William Shakespeare -- Poets' corner -- Through a glass darkly -- The classics -- Book V: Concert Hall -- Overture -- Silence of the spheres -- Symphonies of silence -- Moments of silence -- The audience -- Book VI: School -- Knowing nothing -- The joy of unknowing -- Mathematics -- The arts -- Science sutra -- Creative thinking -- Paradoxical logic -- Master class -- Recess -- Final exam -- Book VII: Museum -- Permanent collection -- The moderns -- Warhol retrospective -- Gallery of blind spots -- In studio -- Nothing is beautiful -- Book VIII: Theater district -- Comedy tonight -- Mostly mystery -- Sing along -- In the wings -- Theater of the absurd -- Book IX: House of worship -- Nothing is sacred -- Seminary -- House of doubt -- Practicing nothing -- Book X: Downtown -- City hall -- At the office -- Inn on Main Street -- Restaurant -- Corner bar -- Wall Street -- Book XI: City limits -- This way out -- Tunnel at the end of the light -- Cemetery -- Last words -- After lite. (shrink)

Will democracy figure prominently in China's future? If so, what kind of democracy? In this insightful and thought-provoking book, David Hall and Roger Ames explore such questions and, in the course of answering them, look to the ideas of John Dewey and Confucius.

Examines the issues of self (including gender), truth, and transcendence in classical Chinese and Western philosophy.

A large proportion of hospital inpatients are affected by cognitive impairment, posing challenges in the provision of their care in busy, fast-paced acute wards. Signs and symbols, known as visual identifiers, are employed in many U.K. hospitals with the intention of helping healthcare professionals identify and respond to the needs of these patients. Although widely considered useful, these tools are used inconsistently, have not been subject to full evaluation, and attract criticism for acting as a shorthand for a routinized response. (...) In order for visual identifiers to be used effectively in acute care settings, thorough consideration must be given to the ethical and legal issues that are engaged in this context, and their potential benefits and harms must be weighed and balanced. This paper proposes a set of legal and ethical principles that can be used to guide the implementation of visual identifiers. Together, these principles provide a framework applicable in the design and implementation phases to systematically identify relevant considerations arising from the use of these tools. We outline some tensions that arise between principles and conclude that selecting a preferred moral framework could help to guide decision-making, as does clarity around the purpose and objectives of the identifier. (shrink)

We propose a research program grounded in cultural theory and believe that this theory enables researchers to gain traction in Business and Society research. Grid-group cultural theory is a useful tool for examining organizational behavior. Organizational culture governs organizational social expression. Corporate Social Responsibility is a specific domain which benefits from exploration using cultural theory. Finally, objectives and aspirations of this research program are outlined.

We synthesize literature from organization theory and political sociology to develop a conceptual lens from which organizing can be examined as a process whereby institutional structures are changed in ways similar to how social movements change entire societies. Implied is that hegemonic power structures maintain existing institutional structures by either resisting insurgencies or by making them seem senseless in the first place.

In the second edition of this groundbreaking text in non-Western philosophy, sixteen experts introduce some of the great philosophical traditions in the world. The essays unveil exciting, sophisticated philosophical traditions that are too often neglected in the western world. The contributors include the leading scholars in their fields, but they write for students coming to these concepts for the first time. Building on revisions and updates to the original, this new edition also considers three philosophical traditions for the first time—Jewish, (...) Buddhist, and South Pacific philosophy. (shrink)

The stringent demands of discipleship were not, therefore, presented by Jesus as a universally applicable ethic of heroic proportions—and still less as an esoteric avenue to salvation—but only as the preconditions for the work of the Kingdom to be done.

Currently, the common theoretical models of "preferred" decision-making relationships do not correspond well with clinical experience. This interview study of congestive heart failure (CHF) patients documents the variety of patient preferences for decision-making, and the necessity for attention to family involvement. In addition, these findings illustrate the confusion as to the designation of surrogate decision-makers and physicians in charge. We conclude that no single model of physician-patient decision-making should be preferred, and that physicians should first ask patients how they want (...) medical information and decision-making to be handled. (shrink)

Although Frederick Denison Maurice is best known today for his contributions to the theological debates of the nineteenth century, his life’s work was very much that of a professional philosopher. His appointment to the Knightbridge Professorship at Cambridge in 1866 was noteworthy because of his involvement in the controversial Christian Socialist movement and because of his previous dismissal from King’s College, London, for his unorthodox theological opinions. But there was never any question—even among the opponents of his nomination—about his competence (...) as a philosopher. He was considered a capable successor to William Whewell; and was himself soon followed by Henry Sidgwick in this important post. Maurice’s two volume history, Moral and Metaphysical Philosophy, which was considered his major work by many of his contemporaries, was the product of over thirty years of continuous teaching and research. His philosophical thought, therefore, deserves consideration on its own merits. (shrink)