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)

Short overview of the From Small Beginnings Project and its relevance for resisting eugenics in contemporary society.

Introduction Future HIV vaccine efficacy trials with adolescents will need to ensure that participants comprehend study concepts in order to confer true informed assent. A Hepatitis B vaccine trial with adolescents offers valuable opportunity to test youth understanding of vaccine trial requirements in general. Methods Youth reviewed a simplified assent form with study investigators and then completed a comprehension questionnaire. Once enrolled, all youth were tested for HIV and confirmed to be HIV-negative. Results 123 youth completed the questionnaire (mean age=15 (...) years; 63% male; 70% Hispanic). Overall, only 69 (56%) youth answered all six questions correctly. Conclusions Youth enrolled in a Hepatitis B vaccine trial demonstrated variable comprehension of the study design and various methodological concepts, such as treatment group masking. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Child's Creation of a Pictorial WorldEllen Handler SpitzThe Child'S Creation of a Pictorial World, by Claire Golomb. Mahwah, New Jersey: Erlbaum, 2004, 388 pp.Children's drawings fill us with wonder and delight. They may tend, however, to puzzle us, especially if we seek to comprehend them in terms appropriate to the drawings of mature artists or in terms relevant for other pictorial forms and expressions. Likewise, they may (...) puzzle us if we make the mistake of supposing that they represent in any direct or obvious way the cognitive development of young children or if we see them only as comical, inept efforts at depicting external reality. Children's drawings stimulate many nagging questions, among them the one as to why it should be that a child who knows so much and who is verbally so articulate may be graphically capable of depicting so little.Claire Golomb's work has proven extraordinarily helpful here as a corrective because Golomb, after many years of research and reflection, writes about these youthful creations not as "print-outs" of a child's mind. She sees them, rather, as exemplars of particular visual representational schemata that are generally available to and employed by young children. And although she regards these schemata as universal, she acknowledges that they are clearly subject to a wide range of individual variability. Over all, the value of Golomb's work lies in her extensive, descriptive research. Acknowledging her intellectual debt to her mentor, Rudolph Arnheim, Golomb reminds her readers that representation is never mimesis pure and simple. Representation is never, she tells us, the result of an "intention to copy nature." Therefore, when young children do otherwise, they ought not to be seen as failing. Their drawings ought not to be viewed as unsuccessful attempts to imitate nature or to depict with faithful realism what appears before their eyes. Rather, as Golomb states and attempts to demonstrate throughout the pages of her well-illustrated volume, children employ graphic schemata that develop over time in terms of shape, color, content, and composition. Ever seeking meaning, children create pictorial worlds that, while they have no one-to-one correlation with the perceptual world, are tied to it, importantly, nonetheless.Golomb assiduously describes and illustrates each of her studies so that her readers are treated to a panorama of this "orderly progression," as she puts it, this evolution of children's graphic work. Her book, moreover, is characterized by a certain social scientific aura; that is to say, she proffers statistics and quantifies her data to prove her points. She takes pains to argue, for example, from research conducted in tandem, apparently, with her daughter, that it is extremely difficult to differentiate, prima facie, the drawings of children who have been diagnosed as disturbed from those who are considered normal. Having worked for a couple of years in a residential treatment center for schizophrenic children, I would aver that this claim might be debatable. However, were one to be [End Page 120] able to so differentiate, this might constitute a challenge to Golomb's theory that the representational schemata are, as she puts it, "robust." According to her findings, they remain more or less in tact. Likewise with regard to the issue of cultural variables. Here Golomb argues, gently and respectfully, against positions taken by two other well-known scholars in the field, Brent and Marjory Wilson, who accord a higher priority than she does to cultural differences. According to the Wilsons, children's drawings are importantly influenced by whatever graphic models are made available to them in a given culture. For Golomb, however, these variables, while significant, do not interfere substantially with the universal classifications she proposes. As she writes, "The drawings of young children are as different one from another as fingerprints, yet they can be classified" (357).In general, then, the body of work Golomb offers in this second edition of her first volume published under the same title in 1992 by the University of California Press importantly contributes, as it initially did, to ongoing research in numerous fields, including art education, early childhood studies, art history, developmental psychology, anthropology, and art... (shrink)

Interdisciplinary hospital ethics committees have been the most common response to the mandates for ethical review procedures set forth by the Joint Commission for the Accreditation of Health Care Organizations, the American Hospital Association, and within institutions themselves. A 1989 national survey reported that 60% of hospitals had ethics committees. However, little is still known about the current state of these committees in hospitals, their composition, what functions are performed, or what issues are discussed.

Myriad Genetics holds a patent on testing for the hereditary breast and ovarian cancer genes, BRCA1 and BRCA2, and therefore has a forced monopoly on this critical genetic test. Myriad launched a Direct-to-Consumer (DTC) marketing campaign in the Northeast United States in September 2007 and plans to expand that campaign to Florida and Texas in 2008. The ethics of Myriad's patent, forced monopoly and DTC campaign will be reviewed, as well as the impact of this situation on patient access and (...) care, physician liability, and the future of DTC campaigns for genetic testing. (shrink)

Courtship conventions are premised on widespread and deeply held cultural beliefs that men and women need and want different things from their romantic relationships. Yet queer relationships challenge the notion of distinct gendered behaviors in romantic relationships, and queer people often explicitly seek to undermine conventional relationship practices. Using interview data from 40 LGBTQ-identified respondents, I examine how queer people negotiate culturally dominant gendered dating and courtship practices. My findings show that, rather than replicate heterosexual norms, respondents actively reject them, (...) seeking new and more egalitarian ways of building romantic relationships. Significantly, the narratives drawn on to justify egalitarian dating practices are similar to those used in their committed relationships. Respondents emphasized egalitarian, flexible, and non-gendered care work in committed relationships, indicating that how people date may potentially set the stage for the dynamics in their relationships. The importance placed on these alternative norms in queer communities, however, contradicts respondents’ assertions that they can create relationships free from cultural constraints, demonstrating how emerging norms can breed their own pressures for conformity. (shrink)

There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP research within the (...) Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

Business Ethics, the Environment & Responsibility, Volume 31, Issue 2, Page 546-561, April 2022.

“Our acts shall be misunderstood [falsch verstanden], as Epicurus is misunderstood! […] I want to be misunderstood for a long time”.1 So proclaims Nietzsche in a notebook passage from 1883, thereby making one of several positive claims for identification with the Hellenistic Greek philosopher from Samos.2 Epicurus, the full remark suggests, was untimely—misunderstood, unappreciated by his contemporaries—much as Nietzsche himself aims to be untimely; and this point is hardly the only moment of convergence between the two thinkers. Although he is (...) not quite the most discussed Greek philosopher in Nietzsche’s writing—Plato and Socrates appear more frequently— Epicurus is an undeniably persistent.. (shrink)

To provide rigour when preparing a research design, the researcher needs to carefully consider not only the methodology but also the philosophical intent of the study. This, however, is often absent from reported research and provides the reader with little evidence by which to judge the merits of the chosen methodology and its influence on the study. The purpose of this paper is to set out the case for critical realism as a framework to guide appropriate action in practice development (...) and realistic evaluation for understanding the consequences of those actions.It is evident that critical realism and critical social science share common ground. Emancipatory practice development (ePD) is based on the philosophy of critical social science and therefore by virtue is linked to the tenets of critical realism. Until now, the evaluation of ePD programme has been well served by 4th-generation evaluation. However, this paper outlines the need for a different approach to evaluation, one that is based on critical realism, that is concerned with emancipation, and that can be used in the ever-changing environment of clinical practice. Realistic evaluation not only links strongly to ePD programmes, but also serves as the basis for effective research questions that will test the outcomes of the research and inform the transferability of ePD mechanisms into differing contexts. (shrink)

One of the most significant studies of Descartes in recent times. It concentrates on the Meditations to show Descartes' philosophy in the context of his overall scientific objectives, not all of them fully explicit in the texts.

This article reconsiders the issue of Luce Irigaray's proximity to Jacques Derrida on the question of woman. I use Derrida's reading of Nietzsche in Spurs: Nietzsche's Styles (1979) and Irigaray's reading of Heidegger in L'Oubli de l'air (1983) to argue that reading them as supplements to one another is more accurate and more productive for feminism than separating one from the other. I conclude by laying out the benefits for feminism that such a reading would offer.

Women’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands (...) of commercially-funded groups now dominate the advocacy landscape. As pharma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the ability of pharma-funded groups to dominate the discourse and override less well-resourced patient and health advocacy groups. Although industry-funded groups argue that funding allows them to provide useful services, the trade-off in health risks, exorbitant prices and distorted information is far too high. Sincerity is beside the point; patients and the industry have differing interests when it comes to drug safety and efficacy, drug information and drug prices. A growing resistance movement is asserting the values of its activist predecessors and opposing the prevailing culture of pharma-funded advocacy. (shrink)

One of the most significant studies of Descartes in recent times. It concentrates on the _Meditations_ to show Descartes' philosophy in the context of his overall scientific objectives, not all of them fully explicit in the texts.