The making of a moral economy: women\u27s views of monetary transactions in an ‘egg sharing for research’ scheme*

There are growing debates about the appropriateness of offering money in exchange for the provision of bodily materials for clinical treatment and research. The bioethics literature and many practice guidelines have generally been opposed to such entanglement, depicting the use of money as contaminating, creating undue inducement, exploitation and commodification of the human body. However, two elements have been missing from these debates: (i) the perspectives of those people providing bodily materials when money is offered; and (ii) systematic empirical engagement with the notion of ‘money’ itself. This article seeks to fill those gaps in knowledge by providing detailed insights from a project investigating the views and experiences of women who volunteered to provide eggs for research in exchange for reduced fees for fertility treatment. Analysis of 29 semi-structured interviews reveals multiple ways in which volunteers reason through the involvement of ‘money’ in this domain and shows how their accounts diverge from pessimistic understandings of the role of monies in everyday life. When volunteers speak in detail about the monetary aspects of their participation they draw major, recurring, distinctions in five overlapping areas: their depiction of the monetized world of fertility treatment; their views of the different forms that money can take; a distancing of their actions from their understandings of how markets and commodities work; their location of the transactions within a particular clinic, and the ongoing importance of their eggs, post-transaction.This article: (i) responds to calls for concrete case studies to assist understandings of the inter-relationships of money and specific aspects of social life; (ii) adds to the sociology of money literature by providing empirical insights into how notions of money are deployed; (iii) presents much-needed perspectives from providers of bodily materials; and (iv) contributes to ongoing conversations between bioethics and sociology

Attitudes on the donation of human embryos for stem cell research among Chinese IVF patients and students

Bioethical debates on the use of human embryos and oocytes for stem cell research have often been criticized for the lack of empirical insights into the perceptions and experiences of the women and couples who are asked to donate these tissues in the IVF clinic. Empirical studies that have investigated the attitudes of IVF patients and citizens on the (potential) donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study (n=427). The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research are typical for Western societies but absent in China cannot be upheld. The article shows that research into the situated perceptions and cultural specificities of human tissue donation can play a crucial role in the deconstruction of politicized bioethical argumentation and the (often ill-informed) assumptions about “others” that underlie socio-ethical debates on the moral dilemmas of technology developments in the life sciences

A Randomized Trial to Identify Accurate and Cost-Effective Fidelity Measurement Methods for Cognitive-Behavioral Therapy: Project FACTS Study Protocol

Background: This randomized trial will compare three methods of assessing fidelity to cognitive-behavioral therapy (CBT) for youth to identify the most accurate and cost-effective method. The three methods include self-report (i.e., therapist completes a self-report measure on the CBT interventions used in session while circumventing some of the typical barriers to self-report), chart-stimulated recall (i.e., therapist reports on the CBT interventions used in session via an interview with a trained rater, and with the chart to assist him/her) and behavioral rehearsal (i.e., therapist demonstrates the CBT interventions used in session via a role-play with a trained rater). Direct observation will be used as the gold-standard comparison for each of the three methods. Methods/design: This trial will recruit 135 therapists in approximately 12 community agencies in the City of Philadelphia. Therapists will be randomized to one of the three conditions. Each therapist will provide data from three unique sessions, for a total of 405 sessions. All sessions will be audio-recorded and coded using the Therapy Process Observational Coding System for Child Psychotherapy-Revised Strategies scale. This will enable comparison of each measurement approach to direct observation of therapist session behavior to determine which most accurately assesses fidelity. Cost data associated with each method will be gathered. To gather stakeholder perspectives of each measurement method, we will use purposive sampling to recruit 12 therapists from each condition (total of 36 therapists) and 12 supervisors to participate in semi-structured qualitative interviews. Discussion: Results will provide needed information on how to accurately and cost-effectively measure therapist fidelity to CBT for youth, as well as important information about stakeholder perspectives with regard to each measurement method. Findings will inform fidelity measurement practices in future implementation studies as well as in clinical practice. Trial registration: NCT02820623, June 3rd, 2016

Decisional Conflict and User Acceptance of Multicriteria Decision-Making Aids *

Despite the development of increasingly sophisticated and refined multicriteria decision-making (MCDM) methods, an examination of the experimental evidence indicates that users most often prefer relatively unsophisticated methods. In this paper, we synthesize theories and empirical findings from the psychology of judgment and choice to provide a new theoretical explanation for such user preferences. Our argument centers on the assertion that the MCDM method preferred by decision makers is a function of the degree to which the method tends to introduce decisional conflict. The model we develop relates response mode, decision strategy, and the salience of decisional conflict to user preferences among decision aids. We then show that the model is consistent with empirical results in MCDM studies. Next, the role of decisional conflict in problem formulation aids is briefly discussed. Finally, we outline future research needed to thoroughly test the theoretical mechanisms we have proposed.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/73461/1/j.1540-5915.1991.tb00371.x.pd

Legal, medical and lay understanding of embryos in Portugal: alignment with biology?

Pretende-se contribuir para o debate em torno dos processos de circulação de conhecimentos e sentidos entre especialistas e “leigos” no que concerne ao estatuto dos embriões humanos em Portugal. Reflete-se sobre as expectativas e preocupações manifestadas quanto à confiança, qualidade, segurança e eficácia das tecnologias médicas de reprodução assistida. O estudo assenta na realização de entrevistas individuais, com vistas a explorar as complexidades, similitudes e diferenças entre as visões e os valores de juristas, médicos e casais envolvidos em tratamentos de fertilização in vitro. Trata-se de uma análise qualitativa em um estudo de caso. Se os juristas e os médicos enquadram o estatuto dos embriões em categorias de índole biológica, técnica e/ou jurídico-legal, já os casais estabelecem com os mesmos diversas relações ontológicas de índole moral, afetiva e social, pelo que estes podem ser representados como seres éticos face à biologização médico-legal dos embriões.Our aim is to contribute towards the debate about the processes through which knowledge and meanings regarding the status of human embryos circulate among experts and laymen in Portugal. Expectations and concerns expressed regarding the reliability, quality, safety and efficacy of medical technologies for assisted reproduction were assessed. This study is based on data from individual interviews that sought to explore the complexities, similarities and differences among the views and values of jurists, doctors and couples involved in in vitro fertilization treatments. It consists of a qualitative analysis on a case study. If jurists and doctors frame the status of embryos as categories of a biological, technical and/or legal nature, couples establish between themselves a variety of ontological relationships of a moral, affective and social nature. Through these, they can be represented as ethical beings, thus contrasting with the medical-legal biologization of the embryos.To the jurists, doctors and women and men who we interviewed and who shared with us their views and experiences, our sincere thanks. We also thank Helena Lima and Filomena Louro (Scientific Editing Programme, University of Minho) for the translation of the Portuguese text into English; and the revision of David George Elliff. The authors thank the Foundation for Science and Technology (Portuguese Ministry of Science, Technology and Higher Education) for the financial support for this research, through a PhD fellowship (SFRH/BD/10396/2002) and a post-doctoral fellowship (SFRH/BPD/47020/2008).info:eu-repo/semantics/publishedVersio

Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse