Objective The study evaluated patient informed consent for the Quad screen and examined differences in IC between test acceptors and test refusers. A multidimensional model of IC was used. Methods Women seeking prenatal care at nine obstetrics clinics in a large Midwestern city completed surveys between February and December 2006. Surveys contained measures for three dimensions of IC: intention, understanding and controlling influence. Results 56.2% of women did not meet criteria for all three of our dimensions of IC and therefore (...) failed to give it. The failure rate was higher among women who choose to screen than women who choose not screen. Women who met all criteria for IC were over three times less likley to choose to screen ) than women who did not meet criteria for IC. Conclusion The decision to screen for fetal anomalies is less of a deliberated action than the decision not to screen. Women who lack a fundamental understanding of the purpose and nature of the screen may be operating on the belief that the screen is part of standard care and presents no need to deliberate. (shrink)

Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical (...) implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations. (shrink)

Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study.

Intrinsic value and animal integrity are two key concepts in the debate on the ethics of the genetic engineering of laboratory animals. These concepts have, on the one hand, a theoretical origin and are, on the other hand, based on the moral beliefs of people not directly involved in the genetic modification of animals. This ‘external’ origin raises the question whether these concepts need to be adjusted or extended when confronted with the moral experiences and opinions of people directly involved (...) in the creation or use of transgenic laboratory animals. To answer this question, 35 persons from the practice of biomedical research who are directly involved in genetic engineering (scientists, biotechnicians, animal caretakers and laboratory animal scientists) were interviewed. They were asked to give their moral opinion on different aspects of the genetic engineering of animals and to react to statements about the concepts of intrinsic value and animal integrity. Analysis of the interviews showed that, contrary to what is often assumed, the respondents embraced these concepts, even those senses that (more) specifically apply to genetic engineering. And although the respondents raised some objections that go beyond issues of animal welfare, these objections could quite well be expressed in terms of the concepts of intrinsic value and animal integrity. In short, the results of the present study strongly suggest that these concepts do not have to be adjusted or extended in the light of the moral experiences and opinions from practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 12.4 (2005) 301-305 [Access article in PDF] The Beauty of Psychotherapy R. D. Hinshelwood Keywords awe, psychotherapy, representation, self-esteem The Enlightenment was devoted to clear uncontaminated reason; its success has given us the terrific achievements of science and technology. However, it has bequeathed problems too. Untrammeled reason has led to the devaluing and exclusion of emotions. Emotions are irrational—self-deception, akrasia, and so on. They were (...) a problem for the eighteenth-century philosopher Kant and right through to the modern therapist Aaron Beck. Callender rightly looks around the edges of rationalist thought to see what can be said about the emotional and subjective side of mankind. He argues that there is more to the human mind than cognition. Something has been left out. What can be found to fill the gap?Callender has searched for the missing link that might complete our view of human nature. And he came back with aesthetics. Meaning The Enlightenment failing is writ large for therapists who are confronted with people who feel things. So we need to ask what place the emotions have in understanding the nature of man? It is not a hypothetical question, but a very practical one for a therapist. Emotions, Callender says, and most people would agree with him, are what gives meaning to life, a sense of purpose in living, even an ill-defined or delusional purpose.He presents Kant's description of aesthetics. Aesthetic judgements have a number of features, the most enigmatic and perhaps profound is a "purposiveness without purpose." A work of art, say a portrait, may have a purpose insofar as it represents a person for his aggrandizement or for his descendents through many generations, but the aesthetic quality does not come from that purpose. The aesthetic purpose involves a different set of judgements. They are about the painting as a piece of art in itself. If it is possible to compare this kind of aesthetic judgement with a judgement of a person's life, then I find myself reminded of Wollheim's definition of a person: The simplest way of putting the matter, which is not to be taken as a metaphysical claim, is this: There are persons, they exist; persons lead lives; and as a result, in consequence—in consequence that is, of the way they do it—there are lives, of which those who lead them may, for instance, be proud, or feel ashamed. So there is a thing, and there is a process, and there is a product. (Wollheim 1984, 2) Although many things do not lead lives, we do. And our lives have a process and a product. Like an aesthetic product, our lives have a sense of emotional meaning, without it having a clear purpose.Aesthetic judgements are therefore of a particular and somewhat peculiar kind. They judges talent for producing "that for which no determinate [End Page 301] rules can be given," as the paper quotes Kant. Other kinds of judgements do have determinate rules. First are empirical judgements for getting practical things done; and moral judgements for assessing ethical good from bad. Aesthetic beauty does not have clear rules, although many systems of rules have been proposed starting with the rules of perspective as they were laid out by renaissance painters, through to systems of color, such as that proposed by Paul Klee, once color was correlated with electromagnetic wavelengths. However, artists have always kept one jump ahead and evaded imprisonment in codified rules. So too it is with leading a life, perhaps. The really creative life is not lead according to rules. The art of life is to live meaningfully without simply running along tramlines. Although moral conduct and the practicalities of life remain significant, perhaps leading a life implies simply a "flare for living." Representation Of these three kinds of judgements that a mind makes, two do have sets of rules. Only one based on rationality, empirical evidence, and reason. Reason judges what can be done and achieved in the real physical world. It is about pragmatics and the usefulness of action. Moral judgements, about what... (shrink)

In this issue of The Journal of Clinical Ethics, we offer a variety of perspectives on the moral and medical responsibilities of professionals with regard to a woman’s choice of where she will birth her baby. The articles in this special issue focus on place of birth, but they have larger resonance for clinicians whose decisions about providing the best possible care require them to sort through evidence, consider their own possible biases and the limitations of their training, and balance (...) the wishes of their patients with the demands of colleagues, hospitals, and insurers. The articles published in this special issue of The Journal of Clinical Ethics will help those who wrestle with such dilemmas in everyday clinical decision making. (shrink)

Intrinsic value and animal integrity are two key concepts in the debate on the ethics of the genetic engineering of laboratory animals. These concepts have, on the one hand, a theoretical origin and are, on the other hand, based on the moral beliefs of people not directly involved in the genetic modification of animals. This ‘external’ origin raises the question whether these concepts need to be adjusted or extended when confronted with the moral experiences and opinions of people directly involved (...) in the creation or use of transgenic laboratory animals. To answer this question, 35 persons from the practice of biomedical research who are directly involved in genetic engineering (scientists, biotechnicians, animal caretakers and laboratory animal scientists) were interviewed. They were asked to give their moral opinion on different aspects of the genetic engineering of animals and to react to statements about the concepts of intrinsic value and animal integrity. Analysis of the interviews showed that, contrary to what is often assumed, the respondents embraced these concepts, even those senses that (more) specifically apply to genetic engineering. And although the respondents raised some objections that go beyond issues of animal welfare, these objections could quite well be expressed in terms of the concepts of intrinsic value and animal integrity. In short, the results of the present study strongly suggest that these concepts do not have to be adjusted or extended in the light of the moral experiences and opinions from practice. (shrink)

Ethical arguments about caregiver responsibility and the limits of client autonomy rely on best evidence about the risks and benefits of medical interventions. But when the evidence is unclear, or when the peer-reviewed literature presents conflicting accounts of the evidence, how are clinicians and their clients to recommend or decide the best course of action? Conflicting evidence about the outcomes of home and hospital birth in the peerreviewed literature offers an opportunity to explore this question. We present the contrary evidence (...) and describe the social and cultural elements that influence the production of the science of birth, including professional, publication, and critical bias. We then consider how the science of birth has been used an misused in making ethical arguments about preferred place of birth. We conclude with a number of recommendations about the responsible use of the evidence, arguing for an “ethics of information” that can be drawn on to guide caregivers and clients in the use of evidence for clinical decision making. (shrink)

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This (...) theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as 'intentionally taking the life of another person by a physician, upon that person's request' can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:R. D. Ackerman BELIEVING IN A FICTION: WALLACE STEVENS AT THE LIMITS OF PHENOMENOLOGY The "ring of men" of "Sunday Morning" will chant their "devotion to the sun, / Not as a god, but as a god might be, / Naked among them, like a savage source" (CP, pp. 69-70).' Solar nakedness is deferred even as it is named. The problem for belief is the question of appearance and (...) representation. Things appear as and like.... The phenomenological return to things is also a turn to fiction, as Husserl understood: "If anyone loves a paradox, he can really say... that the element which makes up the life of phenomenology... is fiction. ' " The sun is divine, and it is not; it is both naked and clothed, savage and civilized, source (or end) and means. But such paradox is ultimately unsatisfying, and as we will see with Stevens, the need for belief—for an image or idea of totality—forces the issue of fiction and reality. The Stevens we will have in view is not the Stevens—as if there were such a creature. Our Stevens is the one most persuaded by promises such as those of phenomenology, the one most concerned with decreation (reduction) and fresh beginnings, with discovery and recognition, with imagination, the body, and the earth. This is the Stevens for whom the barrier of language presages at last not absence and difference but fictive recovery of presence and identity, the one for whom poetry represents a way of belief beyond mysticism even as it bodes mythic proximity. Finally, this is the Stevens who predominates throughout the prose (as well as in much of the poetry), who tries mightily to secure a belief while disencumbering himself of metaphysics—but alas, I think, with small success. Although Stevens's association of the problem of belief with the idea of fiction occurs in early poems such as "A High-Toned Old Christian 79 80Philosophy and Literature Woman" and "To the One of Fictive Music," his most intensive involvement with fiction as belief dates from the early 1940s and spans the period of his major essays and his last four volumes of poems. He recounts, for instance, a 1942 conversation with a student: "I said that I thought that we had reached a point at which we could no longer really believe in anything unless we recognized that it was a fiction. The student said that that was an impossibility, that there was no such thing as believing in something that one knew was not true. It is obvious, however, that we are doing that all the time" (L, p. 430). What does it mean to believe in a fiction? That is my main subject here, as we seek out the limits of the phenomenological Stevens. His letters of this period are preoccupied with the problem of fictive belief: "If one no longer believes in God (as truth), it is not possible merely to disbelieve; it becomes necessary to believe in something else.... A good deal of my poetry recently has concerned an identity for that thing.... In one of the short poems that I have just sent to the harvard advocate, I say that one's final belief must be in a fiction. I think that the history of belief will show that it has always been in a fiction" (L, p. 370). The poem referred to, "Asides on the Oboe," begins: The prologues are over. It is a question now, Of final belief. So, say that final belief Must be in a fiction. It is time to choose. (CP, p. 250) Acknowledging that "in the long run, poetry would be the supreme fiction" (L, pp. 430-31), Stevens nonetheless singles out the nominative function of poetry as the essence of its claim to supremacy: "Poetry means not the language of poetry but the thing itself.... The subject matter is what comes to mind when one says of the month of August... 'Thou art not August, unless I make thee so'" (L, p. 377). The quoted line (also from "Asides") underscores the paradox that for Stevens the essence of fiction (the nontrue) is its capacity to nominate the true or the real. This... (shrink)