This study is the first to examine the understandings that participants have of the consent process in a pharmacogenetic trial of anti-depressant medication.

Although ethical guidelines for doing Internet research are available, most prominently those of the Association of Internet Researchers, ethical decision-making for research on publ...

Joseph Priestley, the eighteenth-century scientist who discovered oxygen, was one of the most remarkable thinkers of his time. This collection of essays by a team of experts covers the full range of his work in the fields of education, politics, philosophy, and theology, and firmly re-establishes him as a major intellectual figure.

Generally, online support groups are viewed as low-threshold services. We challenge this assumption with an investigation, based on Conversation Analysis and Membership Categorization Analysis, of contributions to an online support group on eating disorders. In this analysis we show how a new member interacts with existing members in order to display legitimacy for membership of the group. The group operates as a Community of Practice, since membership is organized as joined participation in a writing practice. It becomes clear that becoming (...) a member involves subscribing to normative requirements, centrally, displaying the insight that you are ill. In the case we focus on, this involves the requirement to leave pro-anorexia as a membership category behind. The novice does not yet seem ready to subscribe to this norm and thus the threshold for seeking support is heightened. (shrink)

Oliver Cromwells historical reputation underwent significant change during the nineteenth century. Writers such as Thomas Carlyle were prominent in this reassessment, creating a Cromwell that found particular support among Nonconformists in the north of England. Projects to memorialize Cromwell included the raising of public statues. This article traces the history of the Manchester statue, the first major outdoor statue of Cromwell to be unveiled in the country. The project originated among Manchester radical Liberal Nonconformists in the early 1860s but was (...) not realized until 1875. It was the gift of Elizabeth Heywood; the sculptor was Matthew Noble. The project, including its intended site in Manchesters new Town Hall, was contentious, exposing political and religious divisions within the community, reinforcing the view that the reassessment of Cromwells place in the making of modern Britain was far from settled. (shrink)

Previous conversation analytic studies of institutional interaction included analyses of empathy in interaction. These studies revealed that professionals may use empathy displays not only to validate the client’s worry, but also to perform actions oriented to other institutional goals and tasks such as closing off a troubles-telling sequence. In this article, we present an analysis of empathically designed responses in Dutch telephone counseling. The data consist of 36 calls from the Alcohol and Drugs Info Line. In some of the calls, (...) clients’ troubles-telling includes ‘emotion discourse’, that is, descriptions of their feelings/emotions. Counselors may respond to these descriptions using conventional empathy displays like ‘I can imagine that’ and ‘I understand that’ in a range of verbal and prosodic variations. The analysis reveals that these responses open up advice sequences that vary in the extent to which they treat the client’s articulated feelings as valid. Most are affiliating, treating the client’s feelings as the basis for advice, while some are less affiliative, putting the client’s feelings into perspective or implicitly questioning their legitimacy. Hence, empathically designed responses are pivots to advice-giving. (shrink)

Twelve of the greatest voices from ancient Greece and Rome - and why they still inspire and affect us in the 21st century. A book for all readers who want to know more about the literature that underpins Western civilization.

What is ethics? -- How the Bible guides Christian ethics -- Moral agent -- Sin -- Virtue -- Conscience -- Moral norms -- Biblical norms -- Moral consequences -- Ultimate ends.

When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts when it becomes (...) part of a socio-technical network in an Intensive Care Unit. Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on the way patient outcomes are constructed, the kind of decision support these outcomes provide, and how cEEG affects communication between professionals and relatives. We argue that cEEG can take away or decrease the intensity of the dilemma in some cases, while increasing uncertainty for others. It also raises new concerns. Since its actual impacts furthermore hinge on how cEEG is designed and implemented, we end with recommendations for ensuring responsible development and implementation. (shrink)

Aim: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. Methods: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2-tests for (...) dierences between countries. Results: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17–44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). Conclusions: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests. (shrink)

Formålet med nærværende oversigtsartikel er at undersøge den stigende digitalisering og deling af personlige informationer i sundhedsvæsenet, samt hvilke etiske udfordringer denne udvikling har for den enkelte borger. Mere præcis vil vi rammesætte denne diskussion i en dansk kontekst eksemplificeret ved Det Fælles Medicinkort. Det Fælles Medicinkort er en obligatorisk database for danske borgere indeholdende informationer om patienters medicinske historie to år tilbage. Denne database kan tilgås af en bred vifte af sundhedsprofessionelle i Danmark.På trods af lovede sundhedsmæssige fordele, såsom (...) en højere grad af sikkerhed i forbindelse med medicinering, en øget effektivisering af sundhedsvæsenet og dermed besparelser på de offentlige budgetter, plæderer vi i artiklen for, at implementeringen af Det Fælles Medicinkort kompromitterer den enkeltes privathed. Den enkelte borger er ikke i tilstrækkelig grad informeret om brugen af Det Fælles Medicinkort. Ydermere finder vi ikke, at borgerens autonomi i forhold til indholdet af personlige oplysninger i Det Fælles Medicinkort er opretholdt på en tilfredsstillende måde.Artiklens primære perspektiv er deontologisk, men for at nuancere vores diskussion inddrages lejlighedsvist også utilitaristiske argumenter. Endvidere inddrages i artiklen Helen Nissenbaum, Tom L. Beauchamp og James F. Childress samt John Rawls. I artiklen vil tre konkrete problemstillinger blive diskuteret i relation til Det Fælles Medicinkort: Deler vi relevante og passende data? Er distributionen af disse data til en så bred vifte af sundhedsprofessionelle på sin plads? Og slutteligt: Er den enkelte borgers beslutningsdygtighed, og dermed mulighed for autonomi i forhold til personrelaterede informationer, tilstrækkelig.Nøgleord: digitalisering, privathed, Danmark, sundhedsvæsen, Det Fælles MedicinkortEnglish summary: The right to privacy in Danish healthcareThe scope of this paper is to assess the growing digitalization of personal information in healthcare and the ethical challenges this development poses to the citizen. Specifically the paper discusses the right to privacy in a Danish context, namely in relation to the use of The Shared Medical Record. The Shared Medical Record is a default digital health record consisting of every patient’s medical history for the previous two years, accessible to a broad range of health professionals in Denmark.In this paper we discuss three aspects of The Shared Medical Record, primarily from a normative point of view: 1) Are the personal data shared by The Shared Medical Record relevant and appropriate? 2) Is the distribution of this information to the current array of health professionals appropriate? And 3) Does The Shared Medical Record adequately support and account for the quorum and autonomy of the individual citizen with regards to personal information?We argue that, advantages such as heightened security, efficiency and convenience aside, the citizens’ right to privacy is to some extent compromised by the terms and use of this record. The citizen is not extensively informed on the use of the record, and does not hold a sufficient degree of autonomy over the content and distribution of their personal data. The primary ethical perspective of the paper is deontological, but in order to properly nuance our stance we have chosen to include traditionally utilitarian points of view throughout our discussions.In the paper we introduce Helen Nissenbaum’s notion of contextual integrity in order to thoroughly assess the service’s ethical implications for Danish citizens and their future privacy, as well as points from John Rawls, Tom L. Beauchamp and James F. Childress. (shrink)

I Norge har vi hatt kontroverser omkring regulering avhumanmedisinsk bioteknologi siden 1980-tallet. Denneartikkelen analyserer et lite utsnitt av disse reguleringsdebattene,nærmere bestemt kontroversen omkring forskningpå befruktede egg. Med utgangspunkt i skriftlig materialeknyttet til tre reguleringsrunder undersøker vi her hvordan ulike aktører arbeidet forå ramme inn denne kontroversen, bl.a. ved hjelp av ulikevitenskapelige og politiske representasjoner av det befruktedeegget.Vi finner at det i perioden 1987–2007 ble arbeidet medulike innramminger som utgangspunkt for retoriske ogpolitiske strategier: På den ene siden ser vi forsøk på (...) å innrammekontroversen i et risikorammeverk som først ogfremst fokuserte på de potensielle negative sidene vedhumanmedisinsk bioteknologi, og som spesielt vektlarespekten for det ufødte liv. På den andre siden ser vi atman arbeidet med en forventningsinnramming som lahovedvekten på håpet om nye behandlingsregimer foralvorlig syke mennesker.Forbudet mot forskning på befruktede egg som ble vedtatti 1987, ble opprettholdt i 1994 og 2003. Med lovendringeni 2008 fikk vi imidlertid et markant brudd i dennorske lovgivningspraksisen, da forskning på befruktedeegg ble tillatt på visse premisser. Vi argumenterer for at den viktigste årsaken til denne lovendringen var Mehmet-saken, en sak som medførtesåkalte «oversvømmelser» i begge innrammingsforsøkenesom er omtalt ovenfor. Mehmet-saken eksponerte samtidig et generelt demokratiskdilemma. Saken illustrerte hvor sårbare lovregler og etiske prinsippkan være for det som for allmennheten fremstår som helt urimelig, og dennesaken etterspør slik sett mer hybride måter å tenke forholdet mellom det universelleog det partikulære, mellom prinsipiell etikk og lekmannsskjønn, mellomfakta og verdier som utgangspunkt for politikkutforming.Nøkkelord: humanmedisinsk bioteknologi, forskning på befruktede egg,kontrovers, representasjoner, Mehmet-sakenEnglish abstract: Effective representations? Concerns and expectationsregarding research on fertilized eggsSince the 1980s, there have been several debates and controversies concerningthe regulation of medical biotechnology. In this article, we analyze three suchinstances in Norway, mainly the debates concerning research on fertilizedeggs. Analyzing the debates surrounding the regulations of 1994, 2003/2004and 2008, we investigate how different stakeholders strived to mobilize whatwe call different framings of the controversy, utilizing the different scientificand political representations of the fertilized egg.Framing involves creating baselines for rhetorical and political stratagems.Two framings appear more pronounced than others in the Norwegian debate.On one hand, we find attempts of framing the controversy in a risk centricframework, which mostly emphasizes the potential negative effects of medicalbiotechnology as it focuses on the universal reverence for the unborn life. Onthe other hand, we see attempts to mobilize a positive frame of expectationthat emphasizes on the hope of finding new and effective treatment options forthe severely ill.The ban against research on fertilized eggs that was passed in Norway in1987 was repeated in 1994 and 2003. However, with the changes introducedto the law in 2008, there was a noticeable shift in Norwegian legislation, asresearch on fertilized eggs became permissible if specific conditions were met.We argue that the turning point in this regulative change was the Mehmentcase, a particular case that entailed the so-called «overflowing» in both the negative and the positive frame. The Mehmet case exposed a moregeneral democratic and political dilemma. In our opinion, it illustrates howvulnerable can regulation that is based on general ethical principles be in theface of what appears to the laity as unreasonable. Thus, we argue that thisactualizes the need for more hybridized ways to view the relationship betweenthe universal and the particular, between principle-based ethics and theunderstandings of lay people, between facts, and values and actual cases inpolicy shaping and practice. (shrink)

Couples need to make their wishes explicit if we are to allow postmortem gamete donation.