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.

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)

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)

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)

Incidental fndings of potential medical signifcance are seen in approximately 5-8 percent of asymptomatic subjects and 16 percent of symptomatic subjects participating in large computed tomography colonography studies, with the incidence varying further by CT acquisition technique. While most CTC research programs have a well-defned plan to detect and disclose IFs, such plans are largely communicated only verbally. Written consent documents should also inform subjects of how IFs of potential medical signifcance will be detected and reported in CTC research studies.

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)

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)

Rapid advancements in machine learning techniques allow mass surveillance to be applied on larger scales and utilize more and more personal data. These developments demand reconsideration of the privacy-security dilemma, which describes the tradeoffs between national security interests and individual privacy concerns. By investigating mass surveillance techniques that use bulk data collection and machine learning algorithms, we show why these methods are unlikely to pinpoint terrorists in order to prevent attacks. The diverse characteristics of terrorist attacks—especially when considering lone-wolf terrorism—lead (...) to irregular and isolated footprints. The irregularity of data affects the accuracy of machine learning algorithms and the mass surveillance that depends on them which can be explained by three kinds of known problems encountered in machine learning theory: class imbalance, the curse of dimensionality, and spurious correlations. Proponents of mass surveillance often invoke the distinction between collecting data and metadata, in which the latter is understood as a lesser breach of privacy. Their arguments commonly overlook the ambiguity in the definitions of data and metadata and ignore the ability of machine learning techniques to infer the former from the latter. Given the sparsity of datasets used for machine learning in counterterrorism and the privacy risks attendant with bulk data collection, policymakers and other relevant stakeholders should critically re-evaluate the likelihood of success of the algorithms and the collection of data on which they depend. (shrink)

Contemporary Western societies are obsessed with the “obesity epidemic,” dieting, and fitness. Fat people violate the Western conscience by violating a thinness norm. In virtue of violating the thinness norm, fat people suffer many varied consequences. Is their suffering morally permissible, or even obligatory? In this paper, I argue that the answer is no. I examine contemporary philosophical accounts of oppression and draw largely on the work of Sally Haslanger to generate a set of conditions sufficient for some phenomena to (...) count as oppression, and I illustrate the account’s value using the example of gender oppression. I then apply the account to fat people, examine empirical evidence, and argue that the suffering of fat people counts as oppression. (shrink)

Knowledge of the ethical and legal basis of medicine is as essential to clinical practice as an understanding of basic medical sciences. In the UK, the General Medical Council requires that medical graduates behave according to ethical and legal principles and must know about and comply with the GMC’s ethical guidance and standards. We suggest that these standards can only be achieved when the teaching and learning of medical ethics, law and professionalism are fundamental to, and thoroughly integrated both vertically (...) and horizontally throughout, the curricula of all medical schools as a shared obligation of all teachers. The GMC also requires that each medical school provides adequate teaching time and resources to achieve the above. We reiterate that the adequate provision and coordination of teaching and learning of ethics and law requires at least one full-time senior academic in ethics and law with relevant professional and academic expertise. In this paper we set out an updated indicative core content of learning for medical ethics and law in UK medical schools and describe its origins and the consultative process by which it was achieved. (shrink)

Next SectionFollowing the influential Gifford and Reith lectures by Onora O’Neill, this paper explores further the paradigm of individual autonomy which has been so dominant in bioethics until recently and concurs that it is an aberrant application and that conceptions of individual autonomy cannot provide a sufficient and convincing starting point for ethics within medical practice. We suggest that revision of the operational definition of patient autonomy is required for the twenty first century. We follow O’Neill in recommending a principled (...) version of patient autonomy, which for us involves the provision of sufficient and understandable information and space for patients, who have the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We test it against the patient–doctor relationship in which each fully respects the autonomy of the other based on an unspoken covenant and bilateral trust between the doctor and patient. Indeed we consider that the dominance of the individual autonomy paradigm harmed that relationship. Although it seems to eliminate any residue of medical paternalism we suggest that it has tended to replace it with an equally (or possibly even more) unacceptable bioethical paternalism. In addition it may, for example, lead some doctors to consider mistakenly that unthinking acquiescence to a requested intervention against their clinical judgement is honouring “patient autonomy” when it is, in fact, abrogation of their duty as doctors. (shrink)

In _Violence and Civility_, Étienne Balibar boldly confronts the insidious causes of violence, racism, nationalism, and ethnic cleansing worldwide, as well as mass poverty and dispossession. Through a novel synthesis of theory and empirical studies of contemporary violence, the acclaimed thinker pushes past the limits of political philosophy to reconceive war, revolution, sovereignty, and class. Through the pathbreaking thought of Derrida, Balibar builds a topography of cruelty converted into extremism by ideology, juxtaposing its subjective forms and its objective manifestations. Engaging (...) with Marx, Hegel, Hobbes, Clausewitz, Schmitt, and Luxemburg, Balibar introduces a new, productive understanding of politics as antiviolence and a fresh approach to achieving and sustaining civility. Rooted in the principles of transformation and empowerment, this theory brings hope to a world increasingly divided even as it draws closer together. (shrink)

A significant proportion of conservationists' work is directed towards efforts to save disappearing species. This relies upon the belief that species extinction is undesirable. When justifications are offered for this belief, they very often rest upon the assumption that extinction brought about by humans is different in kind from other forms of extinction. This paper examines this assumption and reveals that there is indeed good reason to suppose current anthropogenic extinctions to be different in kind from extinctions brought about at (...) other times or by other factors. Having considered – and rejected – quantity and rate of extinction as useful distinguishing factors, four alternative arguments are offered, each identifying a way in which anthropogenic extinction is significantly different from other forms of extinction, even mass extinction: (1) Humans are a different kind of natural cause from other causes of extinction; (2) Extinctions brought about by humans are uniquely persistent; (3) Anthropogenic extinctions are effectively random whereas past mass extinctions are rule-bound; (4) The impact of the current anthropogenic extinction event differs from the impact of other extinction events of the past, such that future recovery may not follow past patterns. Together, these four arguments suggest that the present-day extinction event brought about by humans may be unprecedented and that we cannot clearly extrapolate from past to present recovery from extinctions. Although insufficient as justification for the claim that present-day extinctions are undesirable, the arguments provide some ammunition for conservationists' conviction that species extinction – in which humans play an accelerating role – ought to be prevented. (shrink)

In this paper we consider an intuitionistic variant of the modal logic S4 (which we call IS4). The novelty of this paper is that we place particular importance on the natural deduction formulation of IS4— our formulation has several important metatheoretic properties. In addition, we study models of IS4— not in the framework of Kirpke semantics, but in the more general framework of category theory. This allows not only a more abstract definition of a whole class of models but also (...) a means of modelling proofs as well as provability. (shrink)

Aristotle argued that you need some wealth to live well. The Stoics argued that you could live well with or without wealth. But the Cynics argued that wealth is a hinderance. For the Cynics, a good life consists in self-sufficiency, or being able to rule and help yourself. You accomplish this by living simply and naturally, and by subjecting yourself to rigorous philosophical exercises. Cynics confronted people to get them to abandon extraneous possessions and positions of power to live better. (...) And while the Cynics were experts in living in this way, their ascetic lifestyles made their message curious to some audiences. This paper reflects on Cynic ascetic practices and the ways others perceived them. (shrink)

Horace Williams received a B.A. and an M.A. simultaneously at the University of North Carolina around 1883, taught in a preparatory school, received a Bachelor of Divinity degree at Yale in 1888, studied at Harvard for three years without working for a Ph.D., taught philosophy at the University of North Carolina from 1890 to 1940, and died in the latter year. His students included Senator Sam Ervin and U.S. Representative to the United Nations Frank Graham. Thomas Wolfe, who called (...) Williams the "Hegel of the cotton patch," modeled the character Virgil Weldon, in Look Homeward, Angel, after Williams. In 1968, a profile of Williams was published in the Reader’s Digest series "My Most Unforgettable Character.". (shrink)

Research ethics committees are charged with providing an opinion on whether research proposals are ethical. These committees are overseen by a central office that acts for the Department of Health and hence the State. An advisory group has recently reported back to the Department of Health, recommending that it should deal with inconsistency in the decisions made by different RECs. This article questions the desirability and feasibility of questing for consistent ethical decisions.

Traditionally clinicians have determined their patients' resuscitation status without consultation. This has been condemned as morally indefensible in cases where not for resuscitation (NFR) orders are based on quality of life considerations and when the patient's true wishes are not known. Such instances would encompass most resuscitation decisions in elderly patients. Having previously involved patients in CPR decision-making, we chose formally to explore the reasons behind the choices made. Although the patients were not upset, and readily decided at the time (...) of initial consultation, on later analysing the decision-making we found poor understanding of the procedure, poor recall of information given and in some cases evidence of harm. This may be attributed to impaired decision-making capacity of elderly hospitalised patients as previously shown, or to the discomfort precipitated by having to contemplate the apparent immediacy of cardiac arrest by these patients. We propose that subscribing to autonomy as a general principle needs to be balanced against particular cases where distress may be caused by, or result in, diminished competence and limited autonomy. (shrink)

“Free riding,” used as a descriptive term, refers to taking a jointly produced benefit without contributing towards its production. Used as a term of criticism, it refers to the wrongful failure to contribute towards the joint production of benefits that one receives. On either usage, the central interest of moral philosophy in free riding is the same: to specify the conditions under which not contributing towards the joint production of benefits that one receives is wrong, and to explain why.

To speak of ‘the real subject’ or ‘the primary aim’ of a Platonic dialogue usually means to magnify one aspect of it at the expense of other aspects as important. Such is not my intention. It is quite clear, however, without prejudice to the philosophic value of any of the topics discussed, that the Protagoras is an attack upon the sophists as represented by Protagoras, the greatest of them. Hippias and Prodicus are present and some of the great man's glory (...) is reflected upon them; they are also no doubt to some extent implicated in his defeat, though they seem quite unaware of the fact. (shrink)

This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession.

Grote's powerful defence of Thrasyllus' canon should have taught us at least not to reject lightly any dialogue which, like the Hippias Maior, is there classed as genuine. The burden of proof lies with those who attack our dialogue. Raeder, Ritter, and Apelt consider it to be genuine, while Ast, Jowett, Horneffer, and Röllig declare against it, as also Gomperz, Zeller, and Lutoslawski.

Traditionally, surgical practice has been experiential and based on the contemporary understanding of basic mechanisms of disease. It was both a science and an art and depended to far too great an extent on the individualism and self belief of its main exponents. “Evidence based medicine” emerged in the 1980s and a new gospel of “Rules of Evidence” was introduced. There is no doubt that the net effect of EBM has been beneficial, but over reliance on randomised controlled trials and (...) the lack of generalisability of scientific evidence to individual patients has perhaps led to less enthusiasm for its tenets among surgeons. There are valid and spurious reasons for this that are discussed. The situation is improving but inevitable tensions remain between the surgeon committed to the individual patient here and now, and the clinical researcher whose focus is the benefit of future patients in the larger community. (shrink)

The classical Athenian philosopher Socrates was tried in 399 BCE on the basis of two notoriously ambiguous charges: corrupting the youth and impiety (in Greek, asebeia). A majority of the 501 dikasts (Athenian citizen-jurors) voted to convict him. Socrates was ultimately sentenced to death by drinking a hemlock-based liquid. This well-known account of the trial is by Plato, one of Socrates' students and a famous philosopher in his own right. Whether Socrates was punished unjustly is a contested issue which to (...) this day inspires discussions about the nature and meaning of justice. (shrink)