Research Ethics, Education Research Ethics, Cross Cultural Research, Value Exchange, Informed Consent, Value Ethics, Bioethics

Perverse effects of other-referenced performance goals in an information exchange context

by Nico W. Van Yperen

Tipos de ansiedad de parejas tratadas con fecundación asistida frente a la donación hipotética de embriones para investigación en una clínica privada en …

by Jorge Alberto Álvarez-Díaz

Verso il consenso informato inteso correttamente (Published in Italian, translation of the title: «Toward a Correct Understanding of Informed Consent »)

by ALBERTO GIUBILINI

Bioetica. Rivista Interdisciplinare,  (2011), (1): 121-127

Mesures médicales préliminaires en vue d’un prélèvement d’organes - Avis de droit sur des questions en rapport avec la loi fédérale sur la transplantation

by Melanie Mader

(with Olivier Guillod), Legal opinion mandated by the Federal Office of Public Health, Switzerland, March 2010.

Methodological Issues in Studying an Insular, Traditional Population: A Women's Health Survey among Israeli Haredi (Ultra-Orthodox) Jews

by David Rier

D. Rier, A. Schwartzbaum, and C. Heller, 2008. Women & Health 48(4):363-81.

This paper describes special issues involved in planning and conducting a national telephone health survey (n = 459)... more This paper describes special issues involved in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses how special characteristics of this population influenced study design, sampling, data collection, and interpretation. Sampling employed polling data to identify haredi concentrations. Despite haredim’s reputation for low survey participation, we achieved a 71-74% response rate (depending on the unknown eligibility of 24 phones never answered) in interviews conducted 2003-2004. We describe our systematic attention, throughout the study, to special aspects of haredi culture such as: its calendar; modesty and speech codes; the need for rabbinic endorsement; and the importance of female, haredi interviewers. This research was initiated and managed by a community-based women's health non-governmental organization (NGO), in partnership with trained researchers. Our experiences can guide others surveying insular communities, such as traditional Muslim and Christian societies.

Keywords: women's health; cross-cultural; ultra-Orthodox; survey research; haredi; cultural sensitivity

2009: O wybranych wartościach w aspekcie działalności dydaktycznej i naukowej

by Marek Nowosad

About chosen values in the aspect of the didactic and scientific activity (in Polish) [in:] Geography and values (Geografia i wartości), editors Janicki G., Łanczont M., Wyd. UMCS, Lublin 143-155.

motto:
„Zadaniem uniwersytetu jest także uczyć, ale w gruncie
rzeczy jest on po to, żeby człowiek, który do... more motto:
„Zadaniem uniwersytetu jest także uczyć, ale w gruncie
rzeczy jest on po to, żeby człowiek, który do niego
przychodzi, który ma swój własny rozum już co nieco rozwinięty i pewien zasób doświadczenia życiowego, nauczył się myśleć sam”.
Jan Paweł II do profesorów i studentów KUL
Częstochowa, 6 czerwca 1979 r.

Some quoted authors (in alphabetic order): Covey, Dalajlama, de Mello, Dostatni, Eichelberger, Evatt, Glasser, Jahn, Jäger, Kępiński, McDermott, Neill, Niwiński, O’Connor, Robbins, Ruiz, Sedlak, Seymour, Sisson, Tischner, Vallés, Waters, Wojtyła (John Paul II).

Proceduralisation, choice, and parental reflections on decisions to accept newborn bloodspot screening

by Stuart Nicholls

Forthcoming in Journal of Medical Ethics: doi:10.1136/medethics-2011-100040

Newborn screening is the program through which newborn babies are screened for a variety of conditions shortly after... more Newborn screening is the program through which newborn babies are screened for a variety of conditions shortly after birth. Programs such as this are individually oriented but resemble traditional public health programs because (a) they are targeted at large groups of the population and (b) they are offered as preventive interventions to a population considered healthy. As such an ethical tension exists between the goals of promoting high uptake of supposedly ‘effective’ population oriented programs and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. In this paper I address this issue and present data to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.

Beyond biologicization: bioethics and the new demands on Higher Education/PARA ALÉM DA BIOLOGICIZAÇÃO: BIOÉTICA E AS NOVAS DEMANDAS DA FORMAÇÃO UNIVERSITÁRIA

by Valeria Trigueiro Santos Adinolfi

portuguese texto only

Ongoing processes of managing consent: the empirical ethics of using video-recording in clinical practice and research

by Michelle O'Reilly

with Nicola Parker and Ian Hutcbhy  - in press with Clinical Ethics

Using video to facilitate data collection has become increasingly common in health research. Using video in research,... more Using video to facilitate data collection has become increasingly common in health research. Using video in research, however, does raise additional ethical concerns. In this paper we utilise family therapy data to provide empirical evidence of how recording equipment is treated. We show that families made a distinction between what was observed through the video by the reflecting team and what was being recorded onto videotape. We show that all parties actively negotiated what should and should not go ‘on the record’ with particular attention to sensitive topics and the responsibility of the therapist. Our findings have important implications for both clinical professionals and researchers using video data.  We maintain that informed consent should be an ongoing process and with this in mind we present some arguments pertaining to the current debates in this field of health care practice.

Between Overt and Covert Research: Concealment and Disclosure In An Ethnographic Study of Commercial Hospitality

by Peter Lugosi

This is the accepted version. The final version was published as Lugosi, P., 2006. Between overt and covert research: Concealment and disclosure in an ethnographic study of commercial hospitality. Qualitative Inquiry, 12 (3), pp. 541-561. DOI: 10.1177/1077800405282801. Please consult the published version if citing.

This article examines the ways in which problems of concealment emerged in an ethnographic study of a suburban bar,... more This article examines the ways in which problems of concealment emerged in an ethnographic study of a suburban bar, and considers how disclosure of the research aims, the recruitment of informants and elicitation of information was negotiated throughout the fieldwork. The case study demonstrates how the social context and the relationships with specific informants determined overtness or covertness in the research. It is argued that the existing literature on covert research and covert methods provides an inappropriate frame of reference with which to understand concealment in fieldwork. The article illustrates why concealment is sometimes necessary and often unavoidable, and concludes that the criticisms leveled against covert methods should not stop the fieldworker from engaging in research that involves covertness.

Parental selection and use of information when learning about newborn bloodspot screening

by Stuart Nicholls

Nicholls, S.G., Southern, K.W., (2011) Parental selection and use of information when learning about newborn bloodspot screening. Pediatric Pulmonology: forthcoming. (published abstract)

Participant information clips: a role for digital video technologies to recruit, inform and debrief research participants and disseminate research findings

by Simon Hammond

Draft only

To cite this Article Hammond, Simon P. and Cooper, Neil J.(2010) 'Participant information clips: a role for digital video technologies to recruit, inform and debrief research participants and disseminate research findings', International Journal of Social Research Methodology,, First published on: 19 November 2010 (iFirst) To link to this Article: DOI: 10.1080/13645579.2010.530029
URL: http://dx.doi.org/10.1080/13645579.2010.530029

Etre, Ethique et Spiritualité

by Georges NAHAS

Nahas, G. N. (December 1-3, 2008). Etre, Ethique et Spiritualité. In Bioethics : The Need for Paradigm Shift ? Saint John of Damascus Institute of Theology – University of Balamand. Lebanon.

          L'objectif de cet article, dans le cadre de ce séminaire, est de poser les jalons... more           L'objectif de cet article, dans le cadre de ce séminaire, est de poser les jalons d'une réflexion sur l'Ethique (la Bioéthique n'étant qu'une des composantes les plus étudiées actuellement) qui se base sur une approche chrétienne du sens de la personne comme un être entier indivisible, faisant de l'Ethique une partie intégrante de la Spiritualité en tant que Vie en Christ.
          En posant la problématique créée par une certaine ambiguïté au niveau du discours, des références ainsi que de la pratique, cette intervention veut proposer une optique ouverte: (i) revalorisant le discours sur le Corps, (ii) consolidant le référence aux sources comme vécues pleinement dans l'Eglise, Corps du Christ Un dans sa divinité et multiple par les charismes de ses membre, (iii) et redonnant à la Spiritualité son sens dynamique.
          Après avoir posé la problématique, cette intervention développera une lecture du sens du Corps, suivie d'une optique de l'unité intrinsèque de l'Etre, pour terminer sur la façon dont l'Ethique peut être vécue comme partie intégrante de la Croissance en Christ.

Can science tell us what's objectively true?

by Brian Earp

Earp, B. D. (2011). Can science tell us what’s objectively true? The New Collection, Vol. 6., No. 1, 1-9. Featured article in the graduate journal of New College, Oxford.

Can science tell us what’s objectively true? Or is it merely a clever way to cure doubt – to give us something to... more Can science tell us what’s objectively true? Or is it merely a clever way to cure doubt – to give us something to believe in, whether it’s true or not? In this essay, I look at the pragmatist account of science expounded by Charles Sanders Peirce in his 1877 essay, ‘The Fixation of Belief’. Against Peirce, I argue that science does not come naturally to our species, nor does the doubting open-mindedness upon which its practice relies. To the extent that science is successful in ‘curing’ doubt, it’s because it tracks the real state of the world; and I argue that Peirce himself – his pragmatist narrative notwithstanding – is implicitly committed to this view as well.

Beyond “misunderstanding”: Written information and decisions about taking part in a genetic epidemiology study

by Clare Jackson

Dixon-Woods M, Ashcroft RE, Jackson CJ, Tobin MD, Kivits J, Burton PR, Samani NJ.

Although the need to obtain “informed” consent is institutionalised as a principle of ethical practice in research,... more Although the need to obtain “informed” consent is institutionalised as a principle of ethical practice in research, there is persistent evidence that the meanings people attribute to research tend to be substantially at variance with what might be deemed “correct”. One dominant account in the ethics literature has been to treat apparent “misunderstandings” as a technical problem, to be fixed through improving the written information given to research candidates. We aimed to explore theoretically and empirically the role of written information in “informing” participants in research. We conducted a qualitative study involving semi-structured interviews with 29 unpaid healthy volunteers who took part in a genetic epidemiology study in Leicestershire, UK. Data analysis was based on the constant comparative method. We found that people may make sense of information about research, including the content of written information, in complex and unexpected ways. Many participants were unable to identify precisely the aim of the study in which they had participated, saw their participation as deriving from a moral imperative, and had understandings of issues such as feedback of DNA results that were inconsistent with what had been explained in the written information about the study. They had high levels of confidence in the organisations conducting the research, and consequently had few concerns about their participation. These findings, which suggest that some “misunderstanding” may be a persistent and incorrigible feature of people's participation in research, raise questions about the principle of informed consent and about the role of written information. These questions need to be addressed through engagement and dialogue between the research, research participants, social science, and ethics communities.

Seeking consent to tissue banking: a survey of health professionals in childhood cancer

by Clare Jackson

Jackson CJ, Dixon-Woods M, Tobin M, Young B, Heney D, Pritchard-Jones K.

To identify the views of health professionals working in childhood cancer on seeking consent to tissue banking from... more To identify the views of health professionals working in childhood cancer on seeking consent to tissue banking from potential donors. Self-completion questionnaires sent to 553 UK paediatric oncology health professionals. The response rate was 60%. Respondents (100%) were in favour of using tissue samples from children with cancer for research. A substantial minority (30%) had concerns about the impact of the law on their professional role in relation to tissue banking. Almost all (90%) reported that both the parent(s) and the child, if able, should be asked for consent, though the UK Human Tissue Act provides that a competent child's consent is sufficient. Most (94%) supported 'generic' rather than 'specific' consent. Barriers to obtaining consent included: (1) timing of the approach to families; (2) availability of suitable staff; (3) sensitivity of the issues; (4) difficulties of managing the process; and (5) problems of maintaining a paper trail. Many would welcome training on seeking consent. Personal knowledge and relationships with families are often seen as important in guiding the proper approach to consent rather than formalized rules. There is widespread support among health professionals for tissue banking in childhood cancer. In sensitive situations, disciplined exercise of professional discretion might better deliver on aspirations for regulation than rigid procedures.