13 research outputs found

    Genuine participation in participant-centred research initiatives : the rhetoric and the potential reality

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    The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of ‘participation’—where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) ‘participation’ should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.Peer reviewe

    Bottom up ethics - neuroenhancement in education and employment

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    Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/Protective highlights counter normative consequences and opposes the use enhancers. The Individual/Proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern

    Self-interest, deregulation and trust

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    In this paper I will discuss Milton Friedman’s thesis that the social responsibilityof business is to maximize the shareholders’ profit. I examine the underlyingassumption of self-interest and argue, contrary to the neoliberal thesis ofderegulation, that the profit motive must be constrained by strong state regulations.Furthermore it facilitates keeping the division between business andgovernment intact. The financial crisis shows that the emphasis on a profitmotive without the external constraints of tight regulations has serious implicationsfor the trustworthiness of business. In the latter part of the paper I willdiscuss trust in relation to self-interest. The overemphasis on self-interest isparticularly unfortunate in connection with business, and not least the financialsector, as this institution is grounded in trust, without which it cannot survive.Seen from this angle, it can be claimed that a business model, celebratingprimarily self-interest, profit-motive and deregulation, is not going to be sustainablein the long run

    Privacy as a Social Concept

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    In this thesis I critically examine the traditional account of privacy as a negative right of non-interference and offer instead an alternative framework based on obligations and trust. Privacy is most often described as a value best protected as a right, more accurately as a negative right of non-intrusion. This means that privacy is associated with the private sphere: the individual should be left to decide when he wants to be alone and what he wants to share with others. I begin with an examination of three different distinctions between the public and the private and then I go on to examine two models of privacy: the separation model, where privacy consists of restricted access, and the control model which consists in individual control over certain aspects of one's life. I argue that these models fail to meet many privacy concerns. This becomes most apparent when examining the privacy challenges associated with information technology and biobanks. My alternative account of privacy recognizes how deeply privacy is embedded in social norms and structure. Privacy does not apply to situations where an individual is in isolation, but rather depends on relations to others. This means that privacy is a relational concept: it is an important value in structuring relations between individuals or social institutions. I argue that the framework of rights does not provide an appropriate framework for protecting privacy. Instead, I introduce a framework based on obligations and trust, inspired by Onora O’Neill’s account of perfect and imperfect obligations

    Mannvélar og miðlun: Um ábyrgar vísindarannsóknir og samtal við almenning

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    Framfarir á sviðum vísinda vekja oft upp vandasamar siðferðilegar spurningar sem taka þarf afstöðu til. Þessar spurningar varða meðal annars hversu langt megi ganga í rannsóknum og hvernig nota eigi nýja tækni sem kemur fram á sjónarsviðið. Mikilvægt er að rannsóknir séu gerðar með ábyrgum hætti og nýttar á þann hátt að þær komi samfélaginu öllu til góða. Vandinn er sá að oft eru þessi siðferðilegu álitamál samofin flóknum tæknilegum eða vísindalegum forsendum, sem ekki er endilega auðvelt að skilja og eru jafnvel ekki að fullu komnar í ljós. Af þessum sökum hafa ákvarðanir um rannsóknirnar oftast verið teknar af vísindamönnum eða sérfræðingum án aðkomu almennings. Siðfræðistofnun hefur undanfarin 2 ár tekið þátt í NERRI (Neuro-Enhancement: Responsible Research and Innovation) samevrópsku verkefni þar sem fjallað er um nýjustu rannsóknir á sviði heila- og taugaeflingar og þau siðferðilegu álitamál sem þær vekja. Í verkefninu er einnig fjallað um það hvernig ný tækni á þessu sviði getur haft áhrif á samfélagið og jafnræði borgaranna. Eitt af markmiðum verkefnisins er að efna til umræðu við almenning um þessar mikilvægu siðferðilegu spurningar. En hvernig er best að standa að slíkri umræðu og hvernig er það gert án þess að hafa of mikil áhrif á innihald umræðunnar? Í þessari grein eru aðferðir sem reyndar hafa verið í verkefninu til umfjöllunar og athyglinni beint að spurningum eins og þeim hvernig best er að stofna til samtals við almenning og hvað beri að varast þegar fengist er við flókin vísindaleg viðfangsefni í almennri umræðu

    Responsibility, institutions and administration. Lessons from Iceland’s banking crisis

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    FræðigreinÁbyrgð er það siðferðilega hugtak sem hefur verið í hvað einna mestri umræðu hér á landi frá bankahruninu. Einkum hefur sjónum verið beint að því hverjir beri ábyrgð á hruni bankanna og hvað í þeirri ábyrgð felist. Í þessari grein verður fjallað um ábyrgð út frá einu tilteknu dæmi úr íslenskri stjórnsýslu. Í fyrsta hluta greinarinnar verður fjallað um greinarmun á tvenns konar ábyrgð og lögð sérstök áhersla á ábyrgð sem dygð. Þá er einnig fjallað um mikilvægi stofnana með tilliti til þess hvernig við greinum ábyrgð einstaklinga og jafnframt um það hvernig auka megi vægi ábyrgðar innan stjórnkerfis, fyrirtækja og í samfélaginu almennt. Í öðrum hluta greinarinnar er fjallað ítarlega um dæmi sem finna má um vinnubrögð úr íslenskri stjórnsýslu eins og henni er lýst í rannsóknarskýrslu Alþingis um samráðshóp um fjármálastöðugleika. Dæmið verður greint út frá hugmyndum um fagmennsku og ábyrgð en það sýnir ljóslega hvernig hið flókna samspil innan stofnana, og ekki síður milli stofnana, undirstrika mikilvægi virkrar ábyrgðar. Í þriðja hluta greinarinnar verður fjallað um þau álitaefni sem koma fram í dæminu út frá fagmennsku og stofnunum og þeirri greiningu sem sett er fram í fyrsta hluta. Rætt verður um hvernig auka megi vægi ábyrgðar innan stjórnkerfis, fyrirtækja og í samfélaginu almennt.Since the financial crisis there has been a focus on responsibility or accountability in Icelandic society and people have asked if some individuals were responsible for the fall of the Icelandic banks. This article discusses individual responsibility and the role of institutions in relation to a case of the consultative group on financial stability and contingency planning established in 2006 as described in the Special Investigation Commission report. The first part of the article discusses the distinction between passive and active responsibility and the role of institutions in defining roles and responsibility. In the second part, I will offer a detailed discussion of the case of the consultative group on financial stability in relation to responsibility. In the third part the case will be analyzed from the criteria of active responsibility and well structured institutions. The conclusion is that the consultative group failed as a structure to meet its task and give their members opportunity to behave responsibly prior to the financial crisis

    Reproductive Technology and Surrogacy : A Global Perspective

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    During the past few years, reproductive technology and surrogacy have emerged in a number of European countries as issues of debate. There has been a steady increase in the use of reproductive technology in the Nordic countries, as well as an increase in the use of cross-border medical treatment in order to achieve pregnancy. At the same time, a number of ethical issues have been raised concerning the rights of the participants, including the children. In the fall of 2013, the Nordic Committee on Bioethics organised a conference in Reykjavik that focused on the current situation in the Nordic countries and on the global aspects of reproductive technology and surrogacy, including the market that is emerging in this field. This conference summary highlights the main ethical issues facing researchers, policymakers and practitioners who deal with these issues

    Reproductive Technology and Surrogacy

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    During the past few years, reproductive technology and surrogacy have emerged in a number of European countries as issues of debate. There has been a steady increase in the use of reproductive technology in the Nordic countries, as well as an increase in the use of cross-border medical treatment in order to achieve pregnancy. At the same time, a number of ethical issues have been raised concerning the rights of the participants, including the children. In the fall of 2013, the Nordic Committee on Bioethics organised a conference in Reykjavik that focused on the current situation in the Nordic countries and on the global aspects of reproductive technology and surrogacy, including the market that is emerging in this field. This conference summary highlights the main ethical issues facing researchers, policymakers and practitioners who deal with these issues
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