It is predicted that the rapid acquisition of new genetic knowledge and related applications during the next decade will have significant implications for virtually all members of society. Currently, most people get exposed to information about genes and genetics only through stories publicized in the media. We sought to understand how individuals in the general population used and understood the concepts of ???genetics??? and ???genes.??? During in-depth one-on-one telephone interviews with adults in the United States, we asked questions exploring their (...) basic understanding of these terms, as well as their belief as to the location of genes in the human body. A wide range of responses was received. Despite conversational familiarity with genetic terminology, many noted frustration or were hesitant when trying to answer these questions. In addition, some responses reflected a lack of understanding about basic genetic science that may have significant implications for broader public education measures in genetic literacy, genetic counseling, public health practices, and even routine health care. (shrink)

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In (...) this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing. (shrink)

Traditional liberalism's blindness to cultural concerns has often come under fire, while so‐called “liberal multiculturalism” has made it its business to take a good look at the place of culture within liberal law. According to them, cultural minorities should be recognized. In my opinion, however, their proposals, in fact, almost entirely preclude the possibility that cultural minorities would receive recognition within liberal society. In what follows, I explain my view of these matters and, above all, argue for a more vital (...) understanding of cultural minorities. This will entail presenting a comprehensive view of minority rights within liberal society. (shrink)

Volume 195 in the North Carolina Studies in the Romance Languages and Literatures series.

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery will (...) fail in its aims. In this article, we challenge, in an evidence-based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion. (shrink)

Social networking sites such as MySpace and virtual communities such as on-line support groups can be a rich source of data for researchers. These sites can be an effective way of reaching and researching young people in order to address their particular health needs. Internet-based research is also potentially risky and exploitative. There is some guidance for conducting research online, but there are no detailed or universally accepted ethics guidelines for research of webspaces such as MySpace or virtual communities in (...) which young people participate. One question that arises is — If MySpace is a public webspace, can research be done without consent? In this paper I investigate ethical issues surrounding young people’s consent in cyber research. I identify issues that help determine whether consent is needed, offer suggestions for dealing with consent in cyberspace and add my voice to the call for a resource of case studies — indispensible in the development of guidelines and the education of researchers and research ethics committees. (shrink)

Future automated vehicles of different sizes will share the same space with other road users, e. g., pedestrians. For a safe interaction, successful communication needs to be ensured, in particular, with vulnerable road users, such as pedestrians. Two possible communication means exist for AVs: vehicle kinematics for implicit communication and external human-machine interfaces for explicit communication. However, the exact interplay is not sufficiently studied yet for pedestrians' interactions with AVs. Additionally, very few other studies focused on the interplay of vehicle (...) kinematics and eHMI for pedestrians' interaction with differently sized AVs, although the precise coordination is decisive to support the communication with pedestrians. Therefore, this study focused on how the interplay of vehicle kinematics and eHMI affects pedestrians' willingness to cross, trust and perceived safety for the interaction with two differently sized AVs. In this experimental online study, the participants interacted with the AVs in a shared space. Both AVs were equipped with a 360° LED light-band eHMI attached to the outer vehicle body. Three eHMI statuses were displayed. The vehicle kinematics were varied at two levels. Moreover, “non-matching” conditions were included for both AVs in which the dynamic eHMI falsely communicated a yielding intent although the vehicle did not yield. Overall, results showed that pedestrians' willingness to cross was significantly higher for the smaller AV compared to the larger AV. Regarding the interplay of vehicle kinematics and eHMI, results indicated that a dynamic eHMI increased pedestrians' perceived safety when the vehicle yielded. When the vehicle did not yield, pedestrians' perceived safety still increased for the dynamic eHMI compared to the static eHMI and no eHMI. The findings of this study demonstrated possible negative effects of eHMIs when they did not match the vehicle kinematics. Further implications for a holistic communication strategy for differently sized AVs will be discussed. (shrink)

The Oxford University Studies in the Enlightenment series, previously known as SVEC, has published over 500 peer-reviewed scholarly volumes since 1955 as part of the Voltaire Foundation at the University of Oxford. International in focus, Oxford University Studies in the Enlightenment volumes cover wide-ranging aspects of the eighteenth century and the Enlightenment, from gender studies to political theory, and from economics to visual arts and music, and are published in English or French.

The new prominence given to science for economic growth and industry comes with an increased policy focus on the promotion of commodification and commercialization of academic science. This paper posits that this increased interest in commodification is a new steering mechanism for governing science. This is achieved by first outlining what is meant by the commodification of scientific knowledge through reviewing a selection of literatures on the concept of commodification. The paper concludes with a discussion of how commodification functions as (...) a means for governing science. (shrink)

Promoting collaboration between university researchers and practitioners from the business and public sectors has emerged as an important tool of science policy. This article examines the discourses that policy makers employ in promoting this strategy by analyzing the narratives about the social relevance of science and its role vis-à-vis the industrial sector in the context of strategic research funding in Sweden. Four dominant discourses on science are identified and discussed. It is argued that these policy frames construct a boundary between (...) research and practice, which is in turn used as rhetorical justification for research funding policies that seek to increase business influence and input to university research at the expense of academic autonomy in this sphere. (shrink)

Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child (...) co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-... (shrink)