Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...) Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Bioethics has paid surprisingly little attention to the special problems faced by women and to feminist analyses of current health care issues other than ...

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.

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

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)

In this paper we examine the case of Tay, the Microsoft AI chatbot that was launched in March, 2016. After less than 24 hours, Microsoft shut down the experiment because the chatbot was generating tweets that were judged to be inappropriate since they included racist, sexist, and anti-Semitic language. We contend that the case of Tay illustrates a problem with the very nature of learning software that interacts directly with the public, and the developer's role and responsibility associated with it. (...) We make the case that when LS interacts directly with people or indirectly via social media, the developer has additional ethical responsibilities beyond those of standard software. There is an additional burden of care. (shrink)

Volume 20, Issue 8, August 2020, Page 41-43.

To many who develop and use free software, the GNU General Public License represents an embodiment of the meaning of free software. In this paper we examine the definition and meaning of free software in the context of three events surrounding the GNU General Public License. We use a case involving the GPU software project to establish the importance of Freedom 0 in the meaning of free software. We analyze version 3 of the GNU General Public License and conclude that (...) although a credible case can be made that the added restrictions are consistent with the definition of free software, the case requires subtle arguments. Strong arguments against the added restrictions are less subtle, and may therefore be more convincing to many users and developers. We also analyze the Affero General Public License and conclude that it is inconsistent with the definition of free software. (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)

Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...) the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing. (shrink)

Nanomedicine is yielding new and improved treatments and diagnostics for a range of diseases and disorders. Nanomedicine applications incorporate materials and components with nanoscale dimensions where novel physiochemical properties emerge as a result of size-dependent phenomena and high surface-to-mass ratio. Nanotherapeutics and in vivo nanodiagnostics are a subset of nanomedicine products that enter the human body. These include drugs, biological products, implantable medical devices, and combination products that are designed to function in the body in ways unachievable at larger scales. (...) Nanotherapeutics andin vivonanodiagnostics incorporate materials that are engineered at the nanoscale to express novel properties that are medicinally useful. These nanomedicine applications can also contain nanomaterials that are biologically active, producing interactions that depend on biological triggers. Examples include nanoscale formulations of insoluble drugs to improve bioavailability and pharmacokinetics, drugs encapsulated in hollow nanoparticles with the ability to target and cross cellular and tissue membranes and to release their payload at a specific time or location, imaging agents that demonstrate novel optical properties to aid in locating micrometastases, and antimicrobial and drug-eluting components or coatings of implantable medical devices such as stents. (shrink)

In this essay we argue that the current social and ethical structure in the Open Source Software Community stem from its roots in academia. The individual developers experience a level of autonomy similar to that of a faculty member. Furthermore, we assert that the Open Source Software Community’s social structure demands benevolent leadership. We argue that it is difficult to pass off low quality open source software as high quality software and that the Open Source development model offers strong accountability. (...) Finally, we argue that Open Source Software introduces ethical challenges for universities and the software development community. (shrink)

We agree with Alfandre and colleagues that ethics guidance for contingency conditions in public health emergencies is urgently needed. The Minnesota COVID Ethics Collabora...

"The Rules" are found in a collaborative document that states principles for responsibility when a computer artifact is designed, developed and deployed into a sociotechnical system. At this writing, over 50 people from nine countries have signed onto The Rules. Unlike codes of ethics, The Rules are not tied to any organization, and computer users as well as computing professionals are invited to sign onto The Rules. The emphasis in The Rules is that both users and professionals have responsibilities in (...) the production and use of computing artifacts. In this paper, we use The Rules to examine issues of trust. (shrink)

We contend that software developers have an ethical responsibility to strive for reliable software. We base that obligation on long standing engineering traditions that place the public good as a central tenant and on the professional relationship between a software developer and the users of the software developed.

There is a growing literature on the concept of e-trust and on the feasibility and advisability of “trusting” artificial agents. In this paper we present an object-oriented model for thinking about trust in both face-to-face and digitally mediated environments. We review important recent contributions to this literature regarding e-trust in conjunction with presenting our model. We identify three important types of trust interactions and examine trust from the perspective of a software developer. Too often, the primary focus of research in (...) this area has been on the artificial agents and the humans they may encounter after they are deployed. We contend that the humans who design, implement, and deploy the artificial agents are crucial to any discussion of e-trust and to understanding the distinctions among the concepts of trust, e-trust and face-to-face trust. (shrink)

The emergence of nanotechnology, and specifically nanobiotechnology, raises major oversight challenges. In the United States, government, industry, and researchers are debating what oversight approaches are most appropriate. Among the federal agencies already embroiled in discussion of oversight approaches are the Food and Drug Administration , Environmental Protection Agency , Department of Agriculture , Occupational Safety and Health Administration , and National Institutes of Health . All can learn from assessment of the successes and failures of past oversight efforts aimed at (...) emerging technologies. This article reports on work funded by the National Science Foundation aimed at learning the lessons of past oversight efforts. The article offers insights that emerge from comparing five oversight case studies that examine oversight of genetically engineered organisms in the food supply, pharmaceuticals, medical devices, chemicals in the workplace, and gene therapy. Using quantitative and qualitative analysis, the authors present a new way of evaluating oversight. (shrink)

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)

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)

The success of deep brain stimulation (DBS) for movement disorders and the improved understanding of the neurobiologic and neuroanatomic bases of psychiatric diseases have led to proposals to expand current DBS applications. Recent preclinical and clinical work with Alzheimer's disease and obsessive-compulsive disorder, for example, supports the safety of stimulating regions in the hypothalamus and nucleus accumbens in humans. These regions are known to be involved in addiction and overeating associated with obesity. However, the use of DBS targeting these areas (...) as a treatment modality raises common ethical considerations, which include informed consent, coercion, enhancement, threat to personhood, and manipulation of the reward center. Pilot studies for both of these conditions are currently investigational. If these studies show promise, then there is a need to address the ethical concerns related to the initiation of clinical trials including the reliability of preclinical evidence, patient selection, study design, compensation for participation and injury, cost-effectiveness, and the need for long-term follow-up. Multidisciplinary teams are necessary for the ethical execution of such studies. In addition to establishing safety and efficacy, the consideration of these ethical issues is vital to the adoption of DBS as a treatment for these conditions. We offer suggestions about the pursuit of future clinical trials of DBS for the treatment of addiction and overeating associated with obesity and provide a framework for addressing ethical concerns related to treatment. (shrink)

Technology has outpaced the capacity of researchers performing research on human participants to interpret all data generated and handle those data responsibly. This poses a critical challenge to existing rules governing human subjects research. The technologies used in research to generate images, scans, and data can now produce so much information that there is significant potential for incidental findings, findings generated in the course of research but beyond the aims of the study. Neuroimaging scans may visualize the entire brain and (...) even the entire head; computed tomography colonography research may visualize the entire torso, from the base of the lungs to the pubis; genetics studies may reveal “extra” and sometimes unwanted information about the family, such as misattributed paternity and undisclosed adoption; and genomic microarray research increasingly involves whole-genome analysis revealing an individual’s complete genotype, with enormous potential for uncovering unexpected information about an individual’s genetics and risks of developing future conditions. (shrink)

Oversight of human gene transfer research presents an important model with potential application to oversight of nanobiology research on human participants. Gene therapy oversight adds centralized federal review at the National Institutes of Health's Office of Biotechnology Activities and its Recombinant DNA Advisory Committee to standard oversight of human subjects research at the researcher's institution and at the federal level by the Office for Human Research Protections. The Food and Drug Administration's Center for Biologics Evaluation and Research oversees human gene (...) transfer research in parallel, including approval of protocols and regulation of products. This article traces the evolution of this dual oversight system; describes how the system is already addressing nanobiotechnology in gene transfer: evaluates gene therapy oversight based on public opinion, the literature, and preliminary expert elicitation; and offers lessons of the gene therapy oversight experience for oversight of nanobiotechnology. (shrink)

Answering important public health questions often requires collection of sensitive information about individuals. For example, our understanding of how HIV is transmitted and how to prevent it only came about with people's willingness to share information about their sexual and drug-using behaviors. Given the scientific need for sensitive, personal information, researchers have a corresponding ethical and legal obligation to maintain the confidentiality of data they collect and typically promise in consent forms to restrict access to it and not to publish (...) identifying data.The interests of others, however, can threaten researchers' promises of confidentiality when legal demands are made to access research data. In some cases, the subject of the litigation is tightly connected to the research questions, and litigants' interest in the data is not surprising. Researchers conducting studies on tobacco or occupational or other chemical exposures, for example, are relatively frequent targets of subpoenas. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.

Successful preimplantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization (IVF) to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing” (rather than to avoid a sex-linked disorder), PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Nijhawan's theory rests on the assumption that transient signals compete with predictive signals to generate the visual percept. We describe experiments that show that this assumption is incorrect. Our results are consistent with an alternative theory that proposes that vision is instead postdictive, in that the perception of an event is influenced by occurrences after the event.

“Congealing” is a word that evokes senses of unpleasantness where perhaps something inviting had once been. It also implies that things are becoming less fluid and more rigid. As we began organizing ETHICOMP 2018, we wanted a theme that reflected the impact of technologies on human cultures, practices and lives. Our initial draft of the theme was “Creating, Changing, and Congealing Ways of Life with Technologies.” And while we were eventually persuaded to use a more congenial way of putting the (...) idea (it became “Creating, Changing, and Coalescing Ways of Life with Technologies”), in some ways, it remains true for us that “congealing,” and its connotations of something less pleasant, gets at the original idea. As we incorporate technologies into our practices, much attention is paid to how they change our ways of doing things. But technologies can also help ways of life set-up and harden like yesterday’s leftovers – not appealing, yet difficult to budge and sometimes quite unhealthy. Once a particular process is built around a piece of technology, it can become entrenched and increasingly difficult to change. For a historical example, consider how difficult it was to adapt records and software on the eve of the 21st century in response to the so-called “Y2K” problem. In early software development, efficient use of memory was an important design consideration. It had become a standard practice to use a 2-digit field for the year, which would roll to from “99” to “00” in the year 2000, causing problems for datedependent functions. Technologies can also reflect and reinforce existing cultural tendencies. For a recent example, consider the human resources software created by Amazon that used its existing hiring data to train a machine-learning system to rate applicants. The resulting system turned out to be biased against women applicants, downranking resumes that included the word “woman” or “women’s.” Amazon ended up scrapping the project altogether. Because of these kinds of effects, we wanted to encourage people to think beyond well-worn paradigms like “technologies are disruptive” to consider other kinds of effects they can have. As it happened, the imagery of “congealing” proved distasteful enough that the steering committee opted for a more neutral term. But even with the less-dramatic wording the conference ended up attracting a rich and diverse range of papers that examined technological issues from a variety of angles, exactly as we had hoped. (shrink)

This article discusses the role of nature in the theological system of New England minister Samuel Willard. I focus specifically on his account of theological anthropology, the relationship of nature and grace, and the moral law, and show how each relates to his views on civil government and civil law. Willard affirmed the natural law, natural religion, and natural worship, and he acknowledged and respected pagan civic virtue and grounded civil order and social relations in nature. Willard’s theological articulations are (...) substantively the same as those found among the ‘Reformed orthodox’ theologians of 17th century Europe, which provides evidence for the thesis that Reformed orthodoxy was a transatlantic movement. His reliance on nature also corrects scholarship on the New England Puritans, which often assumes that they rejected the Christian natural law tradition. (shrink)

The original, prescientific Western belief that the mantis is a pious, helpful creature became a widely held explanation for the mantid's unique resting posture, and for one of its cryptic displays. This belief was a characteristic part of a broader discourse about nature in which ancient authority, religious beliefs, and superstition, but few original observations, mixed freely. Gradually, the belief in mantid gentleness and piousness became a commonplace through the continual retelling of the myths and superstitions surrounding this fascinating insect.By (...) the seventeenth century, a growing interest in observation had begun to replace blind reliance on established wisdom and ancient authority. However, the various young sciences to which the period gave rise did not progress equally, and neither did the subdisciplines within each scientific field; biology, especially entomology, was particularly slow to free itself from past beliefs and contemporary superstitions. In the specific case of the praying mantis, the situation may have been at its worst.Early observers of nature found evidence that seemed, at first, to disconfirm the well-established belief that mantids are gentle creatures. These few observers, faced with startling firsthand information about mantid voraciousness, created a new characterization of mantids as merciless predators and then often juxtaposed the two images in their descriptions. However, it was not until the beginning of the nineteenth century that the two characterizations-gentleness versus cruelty— became reconciled.An amalgamation of these seemingly mutually exclusive characterizations was achieved by an interesting accommodation of each to the other. That is, while it could no longer be maintained that mantids are simply gentle insects, neither could it be accepted that they are all cruelty and viciousness. The melding of the two characterizations yielded a hybrid explanation which claimed that the praying mantis actually hastwo sides to its character! On the one hand, and like other creatures, mantids must nourish themselves, and do so quite reasonably by capturing small insects for food. However, even when “well nourished,” and without “the excuse of hunger,” their other, vicious side may surface; when this happens, the darkest of behaviours, cannibalism, is the result.To understand the remainder of the story one must pause to consider what had happened in the other sciences up to this point. In the mid-seventeenth century, professional scientific societies were established throughout Europe. The societies, and the various journals and periodicals that they produced or encouraged, represented an institutionalization of both science and its special, structured discourse. However, as we have stated, entomology lagged behind; and in the case of some insects, superstitions and anthropomorphisms did not fade from descriptions of their behavior for centuries to come.By the time the new scientific discourse was applied to mantids the creatures were already firmly shackled with a dual personality, and this assumption was never challenged. In fact, it was functionally impossible to disconfirm. Captures of small prey were considered part of the mantid's normal side; captures of large prey were considered part of the mantid's abnormal side. There was no alternative explanation.As luck would have it, by the time that the strictures of scientific discourse had tightened sufficiently to disallow the use of anthropomorphisms in the explanation of insect behavior, another acceptable explanation of mantid cannibalism became immediately available: cannibalism became part of mantid mating behavior. That is, the fundamental explanatory model remained unchanged; it was merely couched in more appropriate terms. The acceptance of this new explanation for cannibalism was virtually immediate and complete. For instance, no one ever asked the following questions: If the headless male remains able to mate as a putative precaution against female cannibalism, for what reason does the headless female remain able to fashion “a perfectly constructed ootheca”? Or: If female-on-male cannibalism plays a role in mating behavior, what role is played by genderindifferent cannibalism, especially that among immature mantids? The latter phenomena were simply ignored — they were just uninteresting artifacts of insect life. However, the grand logic of nature was immediately apparent in the headless male's ability to mate. The ruling theory, to use Chamberlin's term, had been able to accommodate itself to, and assimilate, the new scientific discourse. It remained unscathed.A persistent question posed by several historians of this particular topic has been, Why did not the results of Ken Roeder's experiments debunk the myth that males are regularly cannibalized by the females with which they mate? The reason, which we hope is now clear, is that there were two interdependent ruling theories operating here. If one accepts the argument that mantids' cannibalism is simply a normal part of their prey-catching behavior, then one attacks not only the theory that mantids have two separate predatory strategies, but also the more recent theory that mantids have evolved to be the ideal fly-catching machines. This second theory found its first confirming support in the centuries-old practice of feeding flies to captive mantids. Again, the disconfirming evidence of mantids eating prey of various sizes had no impact on the theory. Confirming observations were accepted: disconfirming observations were seen as anomalies.Additional confirmation of both ruling theories was garnered in experiments done in the mid-twentieth century. These experiments were based on the assumption that the original conceptualizations were correct, and consequently they did not test other hypotheses. The combined strength of the two theories is evidenced especially in the Raus' failure to account for the fact that their empirical observations were at odds with many of the conclusions that they drew, and in the fact that Roeder's work is still used to support the belief in the regularity of mating-related cannibalism despite the fact that Roeder, himself, argued the opposite. with both theories well entrenched, it is virtually impossible to promote an alternative theory of mantid behavior: namely, that mantids are generalized, opportunistic predators that manage to survivein spite of the fact that cannibalism sometimes occurs. (shrink)

Background Clients are invited to play a role in decisions about their care. Collaborative deliberation comprises constructive engagement, recognition of alternative actions, comparative learning, construction and elicitation of preferences and preference integration. Collaborative deliberation between clients and professionals is a process that requires an interest in each other, sharing of views on alternatives and preferences and integrating into decisions. The aim is to gain insight into collaborative deliberation in consultations and the clients’ perception of arranging long-term care. Design A descriptive (...) qualitative study to explore collaborative deliberation in consultations between clients and professionals. Six organisations providing long-term care were included. Data collection of nine clients involved observations of consultation with field notes and audio-records, interviews with clients and professionals shortly and 3–6 months after the consultation and questionnaires to collect background information. The data were analysed by deductive content analysis. Findings Constructive engagement was visible in all consultations. Clients and professionals showed respect, empathy and curiosity towards each other. In most consultations, two or more alternative actions are recognised and discussed. Comparative learning appears to be two sided, the client and the professional learn from each other's knowledge and experiences. Construction and elicitation of preference, and preference integration, seems to be present, but difficult to recognise in all consultations. Discussion/conclusion Although all propositions could be identified, there seems room for improvement in preference elicitation and integration of these preferences in the discussions on courses of action. Assistance seems needed with preference elicitation, both for the clients and for the professional. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or (...) come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

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)

Theories of embodied cognition hypothesize interdependencies between psychological well-being and physical posture. The purpose of this study was to assess the feasibility of objectively measuring posture, and to explore the relationship between posture and affect and other patient centered outcomes in breast cancer survivors with persistent postsurgical pain over a 12-week course of therapeutic Qigong mind-body training. Twenty-one BCS with PPSP attended group Qigong training. Clinical outcomes were pain, fatigue, self-esteem, anxiety, depression, stress and exercise self-efficacy. Posture outcomes were vertical (...) spine and vertical head angles in the sagittal plane, measured with a 3D motion capture system in three conditions: eyes open, eyes open relaxed and eyes closed. Assessments were made before and after the Qigong training. The association between categorical variables was measured by Cramer’s V. In the EO condition, most participants who improved in fatigue and anxiety scales also had better vertical head values. For the EOR condition, a moderate correlation was observed between changes in vertical head angle and changes in fatigue scale. In the EC condition, most of the participants who improved in measures of fatigue also improved vertical head angle. Additionally, pain severity decreased while vertical spine angle improved. These preliminary findings support that emotion and other patient centered outcomes should be considered within an embodied framework, and that Qigong may be a promising intervention for addressing biopsychosocially complex interventions such as PPSP in BCSs. (shrink)

This volume publishes the papers which were offered and discussed by a group of philosophers and psychologists during a conference "designed to explore the interrelations between philosophical analyses of the family of concepts relating to the self... and empirical studies in psychology of the development and manifestations of self-control, self-knowledge, and the like," held in Chicago in 1975. The late editor arranged the papers "in terms of four topics" indicating the major themes they address. After his introduction, "Conceptual Issues in (...) the Psychology of the Self", written after the conference and intended as an harmonization of opposing views expressed in the discussions, he presents three papers concerned with psychological and philosophical aspects of "Self-Control and the Concept of Agency." In "Self-Control and the Self," Walter and Harriet N. Mischel start with "an overview of some of the main types of self-control that psychologists have researched". Such psychological studies reveal the human being as "an active, self-aware problem-solver, capable of changing himself and achieving substantial self-control through the application of rational principles to a much greater degree than has usually been supposed in psychology". William P. Alston intends to determine in what ways the self has to be taken into account in the psychology of motivation in "Self-Intervention and the Structure of Motivation". That "there is an agent that does the integrating... and so on," is to be recognized as a fact. The understanding of this self-intervention, however, demands the admission of at least two motivational systems of higher-level-wants and of lower-level-wants, differing in structure and in the mode of acquisition. Charles Taylor explores "what is involved in the notion of self, of a responsible human agent" in his paper, "What is Human Agency". A person is found to be essentially characterized by the capacity for reflective self-evaluation. "Self-Knowledge" is discussed in the following two articles. Kenneth J. Gergen defends "The Social Construction of Self-Knowledge" in line with ideas of George Herbert Mead. Self-knowledge is "primarily a socially mediated and essentially arbitrary construction of experience". In its case "there is virtually nothing to know". This socio-cognitive conception of the self is emphatically rejected by David W. Hamlyn in his "Self-Knowledge". Knowledge about oneself as studied in psychology and sociology is essentially different from self-knowledge in the full sense, "connected with some kind of commitment to oneself". Different scientific views of certain aspects of human existence are presented in "Self-Development and Its Failures". Freud’s conception of the human person finds a realistic correction in the theoretical and practical work of contemporary psychoanalysts insisting upon the need of the concept of a "cohesive self," as described in Ernest S. Wolf’s "'Irrationality’ in a Psychoanalytic Psychology of the Self". This need is denied in behavioristic psychology, as Willard F. Day, Jr. shows in "On the Behavioral Analysis of Self-Deception and Self-Development". "To a behaviorist, there is no such thing" as the self. Consequently, there cannot be a genuine self-development as distinguished from a progress toward creating a desirable environment. Self-deception means fighting the environment. "A Critique of the Behavioral Paradigm and an Alternative Conceptualization" is offered by Paul F. Secord in an analysis of "Making Oneself Behave". Meaning and deficiencies of the understanding of the self in sociological social psychology are outlined by George J. McCall in "The Social Looking-Glass: A Sociological Perspective on Self-Development". The self is seen as essentially a social self or looking-glass self. Problems with regard to an explanation of the personal choice of behavior of a determined social role, however, seem to demand impulses as well as institutions as a locus of self-appraisal. "The Meaning of ’self’ and the Multiplicity of Selves" is the title of the last section of the book. Various uses of the term ’self’ are distinguished by Stephen E. Toulmin in "Self-Knowledge of the Self". The author is primarily concerned with establishing the relations of even the sophisticated psychological and psychiatric uses of the term to the everyday experience and language of reflective conduct. Rom Harré finally hopes to interpret "the syntax of much of the talk of ‘I’ and ‘me', ‘thou’ and ‘we'... as monodramatic performances" in "The Self in Monodrama". (shrink)

_Philosophy and Animal Life_ offers a new way of thinking about animal rights, our obligation to animals, and the nature of philosophy itself. Cora Diamond begins with "The Difficulty of Reality and the Difficulty of Philosophy," in which she accuses analytical philosophy of evading, or deflecting, the responsibility of human beings toward nonhuman animals. Diamond then explores the animal question as it is bound up with the more general problem of philosophical skepticism. Focusing specifically on J. M. Coetzee's _The Lives (...) of Animals_, she considers the failure of language to capture the vulnerability of humans and animals. Stanley Cavell responds to Diamond's argument with his own close reading of Coetzee's work, connecting the human-animal relation to further themes of morality and philosophy. John McDowell follows with a critique of both Diamond and Cavell, and Ian Hacking explains why Cora Diamond's essay is so deeply perturbing and, paradoxically for a philosopher, he favors poetry over philosophy as a way of overcoming some of her difficulties. Cary Wolfe's introduction situates these arguments within the broader context of contemporary continental philosophy and theory, particularly Jacques Derrida's work on deconstruction and the question of the animal. _Philosophy and Animal Life_ is a crucial collection for those interested in animal rights, ethics, and the development of philosophical inquiry. It also offers a unique exploration of the role of ethics in Coetzee's fiction. (shrink)

ABSTRACTIn this paper, I examine the arguments against physician assisted suicide . Many of these arguments are consequentialist. Consequentialist arguments rely on empirical claims about the future and thus their strength depends on how likely it is that the predictions will be realized. I discuss these predictions against the backdrop of Oregon's Death with Dignity Act and the practice of PAS in the Netherlands. I then turn to a specific consequentialist argument against PAS – Susan M. Wolf's feminist critique (...) of the practice. Finally, I examine the two most prominent deontological arguments against PAS. Ultimately, I conclude that no anti‐PAS argument has merit. Although I do not provide positive arguments for PAS, if none of the arguments against it are strong, we have no reason not to legalize it. (shrink)