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.

PURPOSE: The offer to return a summary of results to participants after the conclusion of clinical research has many potential benefits. The authors determined current practice and attitudes and needs of researchers in establishing programs to return results to research participants. METHODS: An Internet survey of all 236 principal investigators (PIs) of the Children's Oncology Group in May 2002 recorded PI and institutional demographics, current practice, and perceived barriers to and needs of PIs for the creation of research results programs. (...) RESULTS: One hundred fifty (63.8%) PIs responded. Few institutions (n = 5) had established, comprehensive programs to offer the return of results. PIs indicated that major impediments to the implementation of such programs are the preparation of lay summaries, time constraints, the task of contacting participants, and potential distress for the participants. PIs identified the following facilitators to the establishment of a program in their own institution: lay summaries, web site, preparation of an oncologist's summary, and financial credits. There was no clear consensus as to when the results should be shared: 30% indicated after the study was closed and 24% indicated at the time of publication of results. A substantial proportion of respondents opposed or strongly opposed the implementation of a universal offering of results to research participants. CONCLUSIONS: Few Children's Oncology Group institutions have programs that offer the return of results to research participants. Significant barriers and facilitators to this process have been identified. (shrink)

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)

BACKGROUND: The offer of return of research results to study participants has many potential benefits. The current study examined the offer of return of research results by analyzing consent forms from 2 acute lymphoblastic leukemia studies of the 235 institutional members of the Children's Oncology Group. METHODS: Institutional review board (IRB)-approved consent forms from 2 standard-risk acute lymphoblastic leukemia studies (Children's Cancer Group [CCG] 1991 and Pediatric Oncology Group [POG] 9407) were analyzed independently by 2 reviewers. RESULTS: The authors received (...) replies from 202 of the 235 institutions that were contacted (85%). One hundred eighty-one institutions had CCG 1991 (n = 96) or POG 9905 (n = 85) protocols that were approved by an IRB. Most institutions provided contact information for the principal investigator (n = 175; 97%) and a member of the institution's research services office (n = 154; 85%). Only 5 (2.8%) institutions provided an indication of a participant's right to receive a summary of research results; most of these institutions provided details on how (n = 5) or when (n = 5) this was to occur. All of these institutions (n = 162; 89.5%) provided a specific statement offering new information that might affect a participant's decision to continue to participate in a study. Only 2 institutional consent forms offered participants the option to receive research results, and only 10 (5.5%) consent forms contained an unambiguous, specific statement offering to provide new information after the study was closed. CONCLUSIONS: Few institutional review board-approved consent forms explicitly indicate the right of research recipients to receive a summary of the results of the research in which they have participated. (shrink)

This essay represents a critical reading, appreciation and assessment of responses written by Susan Abraham, Conrad T. Gromada, and Michael Barnes to my book On Being Human: U.S Hispanic and Rahnerian Perspectives (Orbis Books, 2001). The essay addresses the following three themes: 1) Rahner’s Ignatian heritage and its relation to the U.S. Hispanic appropriation of the preferential option for the poor and marginalized, 2) Rahner’s understanding of one mediator and many human mediations, and 3) Rahner’s transcendental theological approach (...) in relation to the experience of contemporary manifestations of atheism in the U.S. These themes highlight aspects of my book that Abraham, Gromada, and Barnes found fertile ground for engaging in theological conversation. First, with respect to Rahner’s Ignatian spirituality, I argue that the Ignatian understanding of indiferencia can be correlated with the preferential option for the poor and marginalized. Second, with respect to Rahner’s understanding of one mediator and many mediations, I explore other ways in which my book could contextualize Rahner’s approach. Finally, I underscore the historical moment in Rahner’s transcendental theological approach (the mystery of God encountered in, with, and under historical realities) and point to a contemporary implication of this understanding (e.g., practical atheism). (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Many philosophers have been persuaded that if we don’t create our own characters, we cannot be responsible for acts that flow from our characters; they also raise doubts about whether acts that do not flow from our characters can fairly be attributed to us. Both these concerns, however, reflect a simplistic and implausible conception of character and of its relation to our actions and our selves. I suggest a different relationship between character and responsibility: We can be responsible for acts (...) that are in character and also for acts that are out of character, but to be capable of being responsible at all is closely related to the capacity to have a character. I relate this capacity to the exercise of active intelligence—a capacity that is manifested in actions in or out of character, but not in the display of many psychological conditions or disorders. (shrink)

Feminist ethics and medical ethics are critical of contemporary moral theory in several similar respects. There is a shared sense of frustration with the level of abstraction and generality that characterizes traditional philosophic work in ethics and a common commitment to including contextual details and allowing room for the personal aspects of relationships in ethical analysis. This paper explores the ways in which context is appealed to in feminist and medical ethics, the sort of details that should be included in (...) the recommended narrative approaches to ethical problems, and the difference it makes to our ethical deliberations if we add an explicitly feminist political analysis to our discussion of context. It is claimed that an analysis of gender is needed for feminist medical ethics and that this requires a certain degree of generality, i.e. a political understanding of context. (shrink)

Background: Hospitals are experiencing an estimated 16.5% turnover rate of registered nurses costing from $44,380 - $63,400 per nurse—an estimated $4.21 to $6.02 million financial loss annually for hospitals in the United States of America. Attrition of all nurses is costly. Most past research has focused on the new graduate nurse with little focus on the mid-career nurse. Attrition of mid-career nurses is a loss for the profession now and into the future. Research objective: The purpose of the study was (...) to explore relationships of professional values orientation, career development, job satisfaction, and intent to stay in recently hired mid-career and early-career nurses in a large hospital system. Research design: A descriptive correlational study of personal and professional factors on job satisfaction and retention was conducted. Participants and research context: A convenience sample of nurses from a mid-sized hospital in a metropolitan area in the Southwestern United States was recruited via in-house email. Sixty-seven nurses met the eligibility criteria and completed survey documents. Ethical considerations: Institutional Review Board approval was obtained from both the university and hospital system. Findings: Findings indicated a strong correlation between professional values and career development and that both job satisfaction and career development correlated positively with retention. Discussion: Newly hired mid-career nurses scored higher on job satisfaction and planned to remain in their jobs. This is important because their expertise and leadership are necessary to sustain the profession into the future. Conclusion: Nurse managers should be aware that when nurses perceive value conflicts, retention might be adversely affected. The practice environment stimulates nurses to consider whether to remain on the job or look for other opportunities. (shrink)

I reflect on the past, present, and future of the field of bioethics. In so doing, I offer a very situated overview of where bioethics has been, where it now is, where it seems to be going, where I think we could do better, and where I dearly hope the field will be heading. I also propose three ways of re‐orienting our theoretic tools to guide us in a new direction: (1) adopt an ethics of responsibility; (2) explore the responsibilities (...) of various kinds of actors and relationships among them; (3) expand the types of participants engaged in bioethics. (shrink)

The Covid‐19 pandemic has exposed four myths in bioethics. First, the flood of bioethics publications on how to allocate scarce resources in crisis conditions has assumed authorities would declare the onset of crisis standards of care, yet few have done so. This leaves guidelines in limbo and patients unprotected. Second, the pandemic's realities have exploded traditional boundaries between clinical, research, and public health ethics, requiring bioethics to face the interdigitation of learning, doing, and allocating. Third, without empirical research, the success (...) or failure of ethics guidelines remains unknown, demonstrating that crafting ethics guidance is only the start. And fourth, the pandemic's glaring health inequities require new commitment to learn from communities facing extraordinary challenges. Without that new learning, bioethics methods cannot succeed. The pandemic is a wake‐up call, and bioethics must rise to the challenge. (shrink)

situation is one in which all are in great peril and someone must be sacrificed lest all perish. In such situations, it is permissible to do things which would be considered wrong under less drastic circumstances. Proponents of animal rights such as Tom Regan agree that in such circumstances it may be necessary to sacrifice a dog in order to save human life. Is such an admission consistent with calling for the abolition of all scientific research on animals? That is, (...) is scientific research a ‘lifeboat’? The analogy is tempting but flawed. The demand for abolition of animal research is not marred by consistency on this score. Keywords: abolition, animal research, animal rights, lifeboat cases, Tom Regan CiteULike Connotea Del.icio.us What's this? (shrink)

The Republic’s political discussion begins with the construction of two contrasting cities: a ‘healthy’ city and a ‘city with a fever’; one defined by environmentally sustainable subsistence practices and the other by ‘luxurious’ over consumption that exceeds the carrying capacity of its land. Plato’s characters proceed to cure the inflamed city of its fever, resulting in the delineation of the ideal political constitution, the Kallipolis, which recovers the virtues of the original, healthy city in an altered form. This paper develops (...) an ecological reading of the Republic, highlighting Plato’s optimism regarding humans’ ability to limit their material consumption in accordance with the limits of the natural world. The conventional interpretation of the Republic’s first city, known as ‘the city of pigs’, is reconsidered in light of new socio-ecological research on traditional resource management systems. (shrink)

This essay presents Genevieve Vaughan’s writings on language, communication and social praxis for social change. Mothering/being-mothered is thematized, in the framework of gift logic, as a core practice characterizing human relationships, shedding new light on the properly human in terms of gift economy values.

Clinical ethics, like the broader field of bioethics from which it emerged, is at a critical crossroads in its development, with conflicting paths ahead. It can either claim its distinctive place in the clinical arena, insisting unapologetically on certain minimal standards of professional training, practice and competence, addressing head on debates about various models of and methodological approaches to consultation, and establishing a shared vision of the purpose and meaning of the enterprise of clinical ethics itself. Or, it can devolve (...) into a hobby that untrained, albeit interested, and generally well intentioned individuals can dabble in for fun or even profit, as they see fit, and without regard to the deep history and rich disciplinary roots of the field, the serious debates in the academic literature of bioethics, the foundational case histories and legal theories, or even any sense of professional accountability. (shrink)

According to the language of thought (LOT) approach and the related computational theory of mind (CTM), thinking is the processing of symbols in an inner mental language that is distinct from any public language. Herein, I explore a deep problem at the heart of the LOT/CTM program—it has yet to provide a plausible conception of a mental symbol.

Staying for an answer : the untidy process of groping for truth -- The same, only different -- The unity of truth and the plurality of truths -- Coherence, consistency, cogency, congruity, cohesiveness, &c. : remain calm! don't go overboard! -- Not cynicism, but synechism : lessons from classical pragmatism -- Science, economics, "vision" -- The integrity of science : what it means, why it matters -- Scientific secrecy and "spin" : the sad, sleazy story of the trials of remune (...) -- Truth and justice, inquiry and advocacy, science and law -- Trial and error : the Supreme Court's philosophy of science -- An epistemologist among the epidemiologists -- Fallibilism and faith, naturalism and the supernatural, science and religion -- The ideal of intellectual integrity, in life and literature -- After my own heart : Dorothy Sayers's feminism -- Worthwhile lives -- Why I am not an oxymoron -- Formal philosophy? : a plea for pluralism. (shrink)

In this book, Abraham argues that a theological imagination can expand the contours of postcolonial theory through a reexamination of notions of subjectivity, gender, and violence in a dialogical model with Karl Rahner. She raises the question of whether postcolonial theory, with its disavowal of religious agency, can provide an invigorating occasion for Catholic theology.

Name der Zeitschrift: Semiotica Jahrgang: 2016 Heft: 213 Seiten: 247-279.

Approximately 62,000 people in this country await organ transplants. Ten years ago the waiting list numbered 16,000. The line gets longer every day. Up to 30% of those waiting in line will die waiting. We face a chronic shortage of organs. While demand for organs steadily increases, the number of cadaveric organ donors remains relatively constant: approximately 4,000 in 1988, and approximately 5,500 in 1997. In response to this environment of scarcity, policymakers have considered initiatives in a number of domains.

After a brief sketch of the history of philosophical pragmatism generally, and of legal pragmatism specifically (section 1), this paper develops a new, neo-classical legal pragmatism: a theory of law drawing in part on Holmes, but also on ideas from the classical pragmatist tradition in philosophy. Main themes are the "pluralistic universe" of law (section 2); the evolution of legal systems (section 3); the place of logic in the law (section 4); and the relation of law and morality (section 5).

Of late, two contrasting departures from the analytic mainstream have become fashionable: the displacement of philosophy by the natural sciences, epitomized by the Churchlands' theme of "neurophilosophy," and the displacement of philosophy by the literary, epitomized by Rorty's theme of philosophy as "just a kind of writing," as "carrying on the conversation" of Western culture. Both are disastrous. My purpose here is to articulate a metaphilosophy which, avoiding both scientism and literary dilettantism, allows a more robustly plausible account of the (...) relation of philosophy to the sciences, and of its relation to literature, than either. In this enterprise, my starting point will be the work of C. S. Peirce. This may come as something as a surprise; for Peirce's avowed aspiration "to rescue the good ship Philosophy for the service of Science from the lawless rovers of the sea of literature" (5.449, 1902), not to mention his unkind remarks about "studying in a literary spirit" (1.33, 1869), might suggest that he is as scientistic, and as hostile to literature, as Rorty is dilettantish, and hostile to science. But, as I shall show, far from being a precursor of those "lawless rovers of the sea of science" among our contemporaries, Peirce points the way to just such a... (shrink)

While parents have traditionally provided proxy consent for minors to participate in research, this has proven inadequate for adolescents who are mentally and emotionally capable of making their own decisions. Research has proven that even young children, and certainly most adolescents, are developmentally prepared to make such decisions for themselves. The author challenges the assumption that both consent and assent are static concepts, and proposes that a sliding scale of competence be created to ascertain the adolescent's comprehension of the proposed (...) research by shifting the burden of proof to those who believe a particular adolescent is unable to provide informed consent. (shrink)

Making Worlds brings together thirty-one distinguished feminist activists, artists, and scholars to address a series of questions that resonate with increasing urgency in our current global environment: How is space imagined, represented, arranged, and distributed? What are the lived consequences of these configurations? And how are these questions affected by gender and other socially constructed categories of "difference"—race, ethnicity, sexuality, class, nationality? How are the symbolic formations of place and space marked by cultural ideologies that carry across into the places (...) and spaces we inhabit, the boundaries and institutions we maintain? In recent years these questions have occasioned intensifying debates, but they have seldom extended beyond the boundaries of individual academic disciplines or crossed the divide that has traditionally separated the academy from the "outside" world. Making Worlds both questions and traverses those divisions by combining personal essays, activist political rhetoric, oral history, poetry, iconography, and performance art with interdisciplinary academic discourses. Representing a wide range of perspectives, Making Worlds develops a provocative conversation about gender and spatiality in the interwoven symbolic and material environments we create. The contributors engage such issues as the body as site of symbolic action, fabrication, and desire; the place and play of sexualities; the cultural implications of everyday life—home, travel, work, childbirth, food, disease, and death; technology and mass media; surveillance, confinement, and the law; the dynamics of race and ethnicity; imperialism, oppression, and resistance; the politics of urban spaces; landscape and cultural memory; the experience of time; and the nature of "Nature." For students and scholars in cultural studies, geography, literary criticism, anthropology, history, and women's studies, it offers new ways of thinking about space, place, and the spatial contexts of social thought and action. (shrink)