The Decision-Making Process for Individuals at Risk for Hereditary Diffuse Gastric Cancer

Hereditary diffuse gastric cancer (HDGC) is caused by mutations in the CDH1 gene. Individuals who carry mutations in the CDH1 gene have as high as an 80% lifetime risk for gastric cancer. To reduce the high lifetime risk of gastric cancer, CDH1 mutation carriers are recommended to undergo a prophylactic total gastrectomy (TG). Individuals within this at-risk population face a difficult task of deciding whether to have genetic testing for the CDH1 mutation and to have a prophylactic TG. Currently, there is little research that examines the factors influencing decision-making for this population and their specific informational and support needs. We conducted semi-structured telephone interviews on 26 individuals at different points of this decision-making process. Participants were recruited from the No Stomach for Cancer online support group and other social media websites. To be included in the study, the participants had to be 18 years or older, have a family history of hereditary diffuse gastric cancer, and have not had clinical symptoms of HDGC. A family history of HDGC was defined as having one or more first or second degree relatives who 1) had diffuse gastric cancer and/or 2) tested positive for a CDH1 mutation. Eleven participants had already undergone a TG, nine were identified as CDH1 mutation carriers but were currently evaluating their prophylactic options, and six had a family history of CDH1 but had not yet pursued genetic testing. The interviews were analyzed using grounded theory to determine themes. These interviews illuminated that the four main factors influencing decision-making were the avoidance of cancer, family, the inadequacies of endoscopic surveillance, and viewing a post-TG family member’s experience. Additionally, many participants were frustrated with the lack of awareness for the condition and were concerned they had to become their own advocate for their healthcare. The results of this study can provide insight to genetic counselors and other medical professionals of how to help facilitate this decision-making process and how to provide appropriate psychosocial support for this population

Re-Envisioning Member Checking and Communicating Results as Accountability Practice in Qualitative Research: A South African Community-Based Organization Example

Ethical considerations in communicating results to participants in community-based qualitative research are scrutinized less than in medical or genetics research. We report on ethical issues considered in planning, preparing and returning of study findings to members of a community-based organization who provide care and support services in their community in rural area in KwaZulu-Natal, South Africa. Using returning results as fulcrum, we explore the ethics of member checking and dissemination of findings. We propose revising these activities through ritual criticism aiming for the re-examination of routine ethics systems for the evaluation and improvement of practice. A case example illustrates how returning results comprise accountability practices through methods that are relevant, accessible, meaningful and useful to study participants. Finally, we consider how the dissemination of results to a wider audience might also be performed as accountability practices with deference to participants. Attention to representing results in forms that resonate with participants' frames of reference is called for. The term accountability practices or taking-it-back practices might describe the acts more authentically than current conventions motivating researchers to review current philosophical, ethical and methodological positions on member checking, returning results and dissemination practices.Die Kommunikation von Ergebnissen an Studienteilnehmende wird in der qualitativen Forschung weniger häufig in Betracht gezogen als beispielsweise in der medizinischen oder genetischen Forschung. Wir besprechen ethische Aspekte der Planung, Vorbereitung und Umsetzung der Rückgabe von Studienergebnissen an Mitglieder einer lokalen, Community-basierten Organisation in Südafrika. Die Organisation leistet Betreuungs- und Unterstützungsangebote in der ländlichen Gegend von KwaZulu-Natal. Wir begreifen die Rückgabe von Ergebnissen als Dreh- und Angelpunkt der Rechenschaftspflicht von Forschenden und schlagen die kommunikative Validierung und Verbreitung von Studienergebnissen in den beteiligten Communities als ethischen Imperativ vor. Wir propagieren eine rituelle Kritik, die gängige Ethik-Systeme hinterfragt und in eine Neubewertung und Verbesserung der Praxis mündet. Anhand eines Fallbeispiels veranschaulichen wir, wie Ergebnisse auf eine Art und Weise zurückgegeben werden können, die für Studienteilnehmende möglichst relevant, zugänglich, sinnvoll und nützlich ist. Schließlich überlegen wir, wie die Verbreitung von Ergebnissen auch an ein breiteres Publikum verantwortungsvoll gestaltet werden kann. Es ist grundsätzlich geboten, die Ergebnisse in einer Form darzustellen, die mit den Bezugsrahmen der Studienteilnehmenden übereinstimmt. Die Begriffe "Rechenschaftspflicht" oder "Rückgabepraxis" sind passende Bezeichnungen, um Forschende zu ermutigen, die philosophischen, ethischen und methodologischen Positionen zu kommunikativer Validierung zu überprüfen und Praxen der Rückgabe und Verbreitung von Ergebnissen zu reflektieren

'Spectacles within doors': panoramas of London in the 1790s

Edinburgh University Press allows authors to retain the right to post the definitive version of the contribution, as published by EUP, in the Institutional Repository or in a disciplinary repository one year following publication in print. This article was originally published in ROMANTICISM [VOL 14, ISSUE 2, (2008)] and is available at

Table of Contents and Prologue

Editorial board, Table of contents, and Prologue, an introduction to volume 1

Det danske mindretals engagement i mindretalssamarbejdet i Weimarrepublikken

I 1924 sluttede mindretallene i Tyskland sig sammen i Forbundet af Nationale Mindretal i Tyskland. Formålet med dette forbund var blandt andet at arbejde sammen for at forbedre mindretallenes rettigheder og at sætte en dagsorden på europæisk plan. Fra 1925 udgav forbundet derfor et tidsskrift Kulturwille (senere Kulturwehr). Det danske mindretal engagerede sig op igennem Weimarrepublikken i mindretalssamarbejdet, hvilket vakte opsigt både i Tyskland og Danmark. I den følgende  artikel belyses, hvordan det danske mindretals engagement i samarbejdet blev fremstillet i mindretalstidsskriftet Kulturwehr, og hvorledes dette engagement blev vurderet i den danske og den tyske regering

Cross-cultural medical education: Using narratives to reflect on experience

Introduction. Educating students in a multi-cultural society is a challenge as teachers, students and the community they serve all tend to representvarious social groups. Skills alone are not adequate for competency in understanding cultural aspects of consultations. A combination of knowledge, skills and attitude is the most widely accepted current approach to teaching culturally competent communication to medical students. Collaborative reflection on narratives of experienced clinicians’ cultural encounters served to construct an understanding of how to develop these attributes.Process. An interest group of medical teachers met to address the specific needs of teaching a relevant cross-cultural curriculum. Participants offerednarratives from their professional life and reflected on these encounters to understand how to improve the current curriculum to better address theneeds of the students and patients they serve.Results. Through narratives, participants were able to reflect on how their experience had allowed them to develop cultural awareness. All storiesrepresented how attitudes of respect, curiosity and unconditional positive regard were held above all else. The process of collaborative reflection withpeers unpacked the complexity and potential in the stories and different learning opportunities were discovered. Learning was personalised becausethe stories were based on real experiences.Conclusion. The use of collaborative reflection on narratives of clinical encounters could facilitate insights about cultural aspects of medical practice. Elements such as curiosity, respect and unconditional positive regard are illustrated in a unique way that allows students to appreciate the real-life aspects of cross-cultural clinical encounters

Proceedings of the 14th Annual Meeting of the Society for Pediatric Dermatology Quebec City, Quebec, Canada June 22–24, 1989

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/73710/1/j.1525-1470.1989.tb00922.x.pd