Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Scientists, humanists, and art lovers alike value art not just for its beauty, but also for its social and epistemic importance; that is, for its communicative nature, its capacity to increase one's self-knowledge and encourage personal growth, and its ability to challenge our schemas and preconceptions. However, empirical research tends to discount the importance of such social and epistemic outcomes of art engagement, instead focusing on individuals' preferences, judgments of beauty, pleasure, or other emotional appraisals as the primary outcomes of (...) art appreciation. Here, we argue that a systematic neuroscientific study of art appreciation must move beyond understanding aesthetics alone, and toward investigating the social importance of art appreciation. We make our argument for such a shift in focus first, by situating art appreciation as an active social practice. We follow by reviewing the available psychological and cognitive neuroscientific evidence that art appreciation cultivates socio-epistemic skills such as self- and other-understanding, and discuss philosophical frameworks which suggest a more comprehensive empirical investigation. Finally, we argue that focusing on the socio-epistemic values of art engagement highlights the important role art plays in our lives. Empirical research on art appreciation can thus be used to show that engagement with art has specific social and personal value, the cultivation of which is important to us as individuals, and as communities. (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...) of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

Background: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal, and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional (...) contexts on ELSI and other bioethics research agendas. Methods: We reviewed 642 ELSI publications (appearing between 2003 and 2008) for reported sources of funding, forum for dissemination, empirical and nonempirical methods, and topics of investigation. Results: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding. Funding is acknowledged more frequently in empirical than nonempirical publications and more frequently in publications in public health journals than in any other ELSI research dissemination forums. Dominant research topics vary by publication forum and by reported funding. Conclusions: ELSI research is surprisingly independent of direct grant-based funding, yet correlations are apparent between this type of funding and publication placement, topics addressed, and methods used, implying a not insignificant influence on ELSI research agenda setting. However, given the relatively low percentage of publications acknowledging external grant-based funding, as well as other significant correlations between publication placement and topics addressed, additional institutional contexts, perhaps related to professional advancement or valuation, may shape research agendas in ways that potentially exceed the direct influences of grant-based funding in this area. In some cases, grant-based funding may actually counter other potentially problematic institutional influences. (shrink)

Purpose: We sought to examine the ethical, legal, and social implications (ELSI) literature research and scholarship types, topics, and contributing community fields of training as a first step to charting the broader ELSI community’s future priorities and goals. Methods: We categorized 642 articles and book chapters meeting inclusion criteria for content in both human genetics or genomics and ethics or ELSI during a 5-year period (2003–2008) according to research and scholarship types, topics, and the area of advanced training of the (...) first-listed author. Research and scholarship type categories were developed and characterized through in-depth review of 95 randomly sampled publications from the larger group. Results: There is a single dominant approach to ELSI, which focuses on ethical and other social issues “downstream” of advances in genomics, the contributors to which predominately have advanced training in medicine or science fields other than social science. A comparatively low percentage of publications primarily offer policy recommendations, and these are much more likely to be written by those with advanced training in law than is the case for the literature as a whole. Social science studies predominately employ qualitative methods and vary significantly with respect to the extent and types of recommendations offered. Two further types of ELSI research and scholarship offer alternative models for so-called “normative” work in this field. Conclusion: Considering topics, training, and types of ELSI research and scholarship from the most recent past allows for a baseline perspective that is sorely needed in charting this field’s future course. (shrink)

This paper describes a novel approach to teaching introductory-level students how to engage with philosophical texts, developed in the context of a philosophy of art course. We aimed to enhance students’ motivation to read philosophy well by cultivating habits of active reading. To this end we created a structured set of three assignments: instructor created digitally annotated reading assignments, a student digital annotation assignment, and required student participation in a collective GoogleDoc “repository of artworks, examples, ideas, and questions.” Student feedback (...) suggests that this set of teaching tools enhanced their sense of agency in approaching philosophical texts. (shrink)

We suggest a fuller understanding of the obligation to respect patient autonomy can be gained by recognizing patients as historically and socially situated agents, whose values are developed, challenged, and changed, rather than merely applied, in their decision-making about their use of preimplantation genetic diagnosis or preimplantation genetic screening (PGD/PGS). We ground this discussion in empirical research on the patients experiences with PGD/PGS, and conclude by suggesting that promoting patients’ self-respect is a useful ethical standard for providers and practices to (...) recognize. (shrink)

Embedding research ethics education into apprenticeship-model undergraduate research experiences can contribute to creating, and maintaining, ethical and inclusive research cultures. Occidental College’s Biology and Philosophy Departments collaborated to develop a model for undergraduate ecological field research ethics education focused on promoting students’ understanding of ethics as embedded within scientific research practices. The model has two primary components: (a) a philosophical reading, reflective journaling, and discussion group for both philosophy and ecology undergraduate researchers about ecological research ethics; and (b) philosophy faculty (...) and undergraduate researchers embedded within and assisting with ecological fieldwork, while also pursuing their philosophical fieldwork projects. This project highlights a range of ways of embedding ethics in research experiences that can be adapted to other contexts, including sustained and structured reflective journaling focused one’s scientific practice and regular philosophical discussions involving the entire research group. (shrink)

The discussion of the nature and value of dignity in and for bioethics concerns not only the importance of the concept but also the aims of bioethics itself. Here, I challenge the claim that the concept of dignity is useless by challenging the implicit conception of usefulness involved. I argue that the conception of usefulness that both opponents and proponents of dignity in bioethics adopt is rooted in a narrow understanding of the role of normative theory in practical ethical thinking. (...) I then offer an alternate understanding of the nature and value of dignity. I begin by recognizing that claims that one’s dignity has been violated point to an important difference between “respect for autonomy” and “respect for persons.” I then suggest three different conceptions of how dignity can be normatively guiding for bioethics, and conclude that, ultimately, understanding dignity as the cornerstone of a reflective perspective that frames moral reflection and deliberation is valuable for doing bioethics well. (shrink)