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Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants' needs in the research process. We report on families' motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families' decisions to participate in autism genetic research and provide points to consider for this population of research participants. Keywords Autism * Parent experiences * Genetic research * Motivations * Expectations * Genetic result, Introduction Recently, there has been an expansion in research focused on uncovering underlying biological and genetic causes of autism. Strong evidence from twin and family studies points to the important [...]

An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are--in effect--required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits. (Am J Public Health. 2008;99:210-215. doi: 10.2105/AJPH.2008. 136614)

Norma Henrietta Carswell Ford Walker (nee Norma Ford) was one of Canada's pioneers in human and medical genetics. She was trained as an invertebrate zoologist at the University of Toronto [...]

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.socscimed.2005.11.015 Byline: Fiona Alice Miller, Catherine Ahern, Christopher A. Smith, Erin A. Harvey Keywords: Genetic medicine; New genetics professionals; Metaphors; Attitudes; Science media Abstract: Developments in genetics are expected to have a profound impact on health and health care, yet much remains to be learned about how leaders of the research and clinical communities view and frame these expectations. We conducted a comprehensive review of editorials about developments in genetic medicine published in scientific journals, to understand what this elite group of commentators anticipate. Editorials are an important resource for understanding how the new genetics is understood and portrayed. They allow leaders of the research and clinical communities to communicate to each other and informed publics, and are a forum for the expression of widely shared elite beliefs and opinions. We analyzed selected editorials for content and metaphoric language to explore attitudes and expectations concerning developments in genetic science and technology. Our analysis suggests that a diverse group of leaders of the research and clinical communities are remarkably uniform in their discourse about the future of genetic medicine. Editorialists have great expectations for developments in basic science and in the comprehension and management of disease. They also anticipate important effects on health care, notably the health care professions, and on wider society. Yet editorialists do not discuss these prospects in a consistently positive or optimistic manner, and they utilize metaphoric imagery that emphasizes the inexorable nature of progress, and the sometimes ominous manner in which developments emerge. The dominant discourse of editorialists claims authority for clinicians and researchers and asserts a broad sphere of expertise, but it also positions these leaders as handmaidens of a science they do not control, and insists that their ultimate contribution is to prepare themselves and others for the inexorable march of progress. Author Affiliation: McMaster University, Hamilton, Ontario, Canada

We report on a qualitative analysis of interviews with 14 genetic counsellors in Ontario, Canada about the implications of developments in molecular genetic knowledge for disease definition and classification. Genetic counsellors express a restrained set of hopes and expectations about the utility of genetic diagnoses. They identify several limitations faced by available genetic tests, limitations that constrain the significance of genetic information in disease identification and clinical management. Yet they also emphasize the fundamental nature of genetic information, its decisive role in specifying disease causation, and its significance for disease classification. The decisive nature of genetic information means that, in some cases, genetic tests foster change in disease categories. Diseases are redefined by the 'ruling in' of atypical cases demonstrating a broader spectrum of clinical effects, or the 'ruling out' of typical cases with classic clinical presentations that are better assigned to other (or no) causes. These redefinitions can be profoundly consequential, producing several kinds of uncertainty: What do we call this state of being? How do we manage it clinically? And, what are the social entitlements of individuals in this state? Though limited today, such complex effects can be expected to increase, alongside the growing diagnostic power of molecular genetics. Keywords: Canada; Genetics; Disease classification (nosology); Diagnosis; Genetic counsellors

In this article, on behalf of The Shadow Places Network, we outline a working manifesto of politics and practice. We mobilise the format of the manifesto to speak to an uncertain and damaged future, to begin to imagine other possible worlds. For feminist philosopher Val Plumwood, whose thinking inspires this network, shadow places are the underside of the capitalist fantasy, 'the multiple disregarded places of economic and ecological support'. In turning towards shadow places, and the unjust and unsustainable processes that produce them, we call for an environmental humanities that reaches beyond abstraction, fosters new responsibilities, considers the uncomfortable, and generates reparative possibilities and alternative futures. We aim to continue to trace out a world of shadow places. We acknowledge that these shadow places cannot be known in full, but through a willingness to engage in careful conversation with the beings and places harmed by (or strategically shielded from) processes of the Anthropocene, we can learn how to relate to each other and these places in more just ways. Recognising that shadow places are impermanent and contingent, this working manifesto does not look to predetermine or prescribe but rather invites conversation, encounter and exchange. In so doing we choose to contribute to making different worlds possible by pursuing new collaborations, new methods and new politics. [ABSTRACT FROM AUTHOR]