Open Education opens up learning opportunities to, potentially, every person in the world. Additionally, it allows teachers, researchers, and practitioners to find, share, reuse, and improve existing resources under a dependable legal framework. Aiming to spread and foster the introduction of open policies in Higher Education institutions, the gamified interactive learning experience Catch the Open! was developed. Catch the Open! targets HE educators who wish to learn, or who wish to deepen their existing knowledge, about OE and Open Educational Practices. (...) Within the gamified learning experience, the user becomes an educator, Alex, the game character, who receives a task from the Rector: to investigate how to best include OE and OEP in teaching and learning practice within the institution. Alex proceeds to explore and gather information in a web-based 2D virtual HE institution where students, colleagues, and guest researchers will help her to develop a comprehensive understanding of OE and the practical application of OEP. The educational content within Catch the Open! is underpinned by an OE competences framework for HE educators, developed in a previous phase of the Erasmus+ OpenGame project. In this paper, the design process to link pedagogical and technological approaches, which results in the Catch the Open! gamified web-based interactive application, is presented as well as the application itself. Moreover, two phases of piloting with 153 HE educators from six different HE institutions are presented. The obtained findings showed that the gamified environment helped in learning about OE. On the other hand, learners also suggested several improvement aspects of the gamified environment, such as the length of finishing a learning mission while playing. (shrink)

It seems trivial to identify sound sequences as music or speech, particularly when the sequences come from different sound sources, such as an orchestra and a human voice. Can we also easily distinguish these categories when the sequence comes from the same sound source? On the basis of which acoustic features? We investigated these questions by examining listeners’ classification of sound sequences performed by an instrument intertwining both speech and music: the dùndún talking drum. The dùndún is commonly used in (...) south-west Nigeria as a musical instrument but is also perfectly fit for linguistic usage in what has been described as speech surrogates in Africa. One hundred seven participants from diverse geographical locations (15 different mother tongues represented) took part in an online experiment. Fifty-one participants reported being familiar with the dùndún talking drum, 55% of those being speakers of Yorùbá. During the experiment, participants listened to 30 dùndún samples of about 7s long, performed either as music or Yorùbá speech surrogate (n= 15 each) by a professional musician, and were asked to classify each sample as music or speech-like. The classification task revealed the ability of the listeners to identify the samples as intended by the performer, particularly when they were familiar with the dùndún, though even unfamiliar participants performed above chance. A logistic regression predicting participants’ classification of the samples from several acoustic features confirmed the perceptual relevance of intensity, pitch, timbre, and timing measures and their interaction with listener familiarity. In all, this study provides empirical evidence supporting the discriminating role of acoustic features and the modulatory role of familiarity in teasing apart speech and music. (shrink)

The pandemic significantly raised the stakes for the translation of bioethics insights into policy. The novelty, range and sheer quantity of the ethical problems that needed to be addressed urgently within public policy were unprecedented and required high‐bandwidth two‐way transfer of insights between academic bioethics and policy. Countries such as the United Kingdom, which do not have a National Ethics Committee, faced particular challenges in how to facilitate this. This paper takes as a case study the brief career of the (...) Ethics Advisory Board (EAB) for the NHS Covid‐19 App, which shows both the difficulty and the political complexity of policy‐relevant bioethics in a pandemic and how this was exacerbated by the transience and informality of the structures through which ethics advice was delivered. It analyses how and why, after EAB's demise, the Westminster government increasingly sought to either take its ethics advice in private or to evade ethical scrutiny of its policies altogether. In reflecting on EAB, and these later ethics advice contexts, the article provides a novel framework for analysing ethics advice within democracies, defining four idealised stances: the pure ethicist, the advocate, the ethics arbiter and the critical friend. (shrink)

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...) and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)

Gerechtigkeit ist ein zentraler Wert in Politik und Gesellschaft. Trotzdem ist sie im Hinblick auf ihren Gehalt und ihre Reichweite höchst umstritten. Die Autorinnen und Autoren diskutieren grundlegend ethische und konkret praktische Fragen der Gerechtigkeit in Bezug auf Gesundheitswesen, Medizin, Pflegebeziehungen und Biotechnologien. Wie sieht eine gerechte Verteilung knapper Ressourcen in der Gesundheitsversorgung aus? Was sind die ethischen Grundlagen und worauf zielt eine gerechte Verteilung von Gesundheitsleistungen? Welche besonderen Problemstellungen zur Frage der Gerechtigkeit ergeben sich im Verlauf eines menschlichen Lebens? (...) In welchem Verhältnis stehen Gerechtigkeitsfragen zu anderen Themen der Medizin-, Bio- und Pflegeethik? (shrink)

Although the therapeutic misconception (TM) has been well described over a period of approximately 20 years, there has been disagreement about its implications for informed consent to research. In this paper we review some of the history and debate over the ethical implications of TM but also bring a new perspective to those debates. Drawing upon our experience of working in the context of translational research for rare childhood diseases such as Duchenne muscular dystrophy, we consider the ethical and legal (...) implications of the TM for parental consent to research. In this situation, it is potentially the parent who is vulnerable to TM. In our analysis we not only consider the context of informed consent for research but also the wider environment in which the value of research is promoted, more broadly through the media but also more specifically through the communication strategies of patient organizations. All dissemination about developments in research for health runs the risk of portraying an overly optimistic view of the promise of biotechnological solutions and has the potential to encourage a ‘collective’ TM. In this paper we consider the challenge that TM presents to parents as well as explore the ethical and legal responsibilities of researchers to ensure an appropriately informed consent: compatible with a hopeful disposition of parents who consent for the their children whilst avoiding a blind and misleading optimism. (shrink)

How many words—and which ones—are sufficient to define all other words? When dictionaries are analyzed as directed graphs with links from defining words to defined words, they reveal a latent structure. Recursively removing all words that are reachable by definition but that do not define any further words reduces the dictionary to a Kernel of about 10% of its size. This is still not the smallest number of words that can define all the rest. About 75% of the Kernel turns (...) out to be its Core, a “Strongly Connected Subset” of words with a definitional path to and from any pair of its words and no word's definition depending on a word outside the set. But the Core cannot define all the rest of the dictionary. The 25% of the Kernel surrounding the Core consists of small strongly connected subsets of words: the Satellites. The size of the smallest set of words that can define all the rest—the graph's “minimum feedback vertex set” or MinSet—is about 1% of the dictionary, about 15% of the Kernel, and part-Core/part-Satellite. But every dictionary has a huge number of MinSets. The Core words are learned earlier, more frequent, and less concrete than the Satellites, which are in turn learned earlier, more frequent, but more concrete than the rest of the Dictionary. In principle, only one MinSet's words would need to be grounded through the sensorimotor capacity to recognize and categorize their referents. In a dual-code sensorimotor/symbolic model of the mental lexicon, the symbolic code could do all the rest through recombinatory definition. (shrink)

Ever since its first documented live birth in 2014, the use of uterine transplantation (UTx) for the treatment of absolute uterine factor infertility (UFI) has seen major clinical advances, which include the use of alternative surgical approaches, different donor states, and diverse patient populations. In addition to the thorough research programs that developed the technique, this accomplishment has occurred in large part following a number of ethical frameworks, such as the Montreal Criteria and the Indianapolis Consensus, which paved the way (...) to transition from experimental animal trials to human ones. To date, over 60 uterine transplants have been performed in the world, and at least 18 births have been thus far confirmed. While the procedure remains experimental, the vast knowledge and procedural experience amassed over the last 20 years of rigorous research have hinted at the next step of discovery. In particular, advancing social circumstances have prompted the question regarding the use of this technology in transgender individuals. Though the potential use of uterine transplants in the transgender population has been hypothesized, no in‐depth ethical framework has been developed towards this purpose. Herein, we explore the ethical issues revolving around the use of this technology in this patient population and provide key insights that may advance this cause. (shrink)

Lors de la conquête d’Algérie par la France, à partir de 1827, et tout au long du xixe siècle, de nombreux ingénieurs, universitaires et militaires ont été envoyés pour installer et développer le pouvoir colonial. Nombre d’entre eux étaient formés aux sciences dans les grandes écoles comme l’École polytechnique et ont réalisé des activités scientifiques en Algérie, en connexion ou en dehors des missions qui leur étaient prescrites. Dans cet article, nous proposons de circonscrire ces activités spécifiques et les situer (...) individuellement et collectivement, au travers d’études de cas dans un espace social aussi particulier et singulier que la société algérienne du xixe siècle. (shrink)

Lors de la conquête d’Algérie par la France, à partir de 1827, et tout au long du xixe siècle, de nombreux ingénieurs, universitaires et militaires ont été envoyés pour installer et développer le pouvoir colonial. Nombre d’entre eux étaient formés aux sciences dans les grandes écoles comme l’École polytechnique et ont réalisé des activités scientifiques en Algérie, en connexion ou en dehors des missions qui leur étaient prescrites. Dans cet article, nous proposons de circonscrire ces activités spécifiques et les situer (...) individuellement et collectivement, au travers d’études de cas dans un espace social aussi particulier et singulier que la société algérienne du xixe siècle. (shrink)

Lehren und Lernen, verstanden als komplexe Vermittlung und Verarbeitung von Inhalten, finden immer in räumlichen Kontexten statt, die hinderlich oder förderlich sein können. Diese Räume können von ganz verschiedener Art sein und sie müssen sich keineswegs auf den Hörsaal und Seminarraum beschränken. Der Sammelband, der aus zwei Symposien des Münchner-Dozierenden-Netzwerks in den Jahren 2020 und 2021 hervorgegangen ist, möchte diese Räume erkunden, medial reflektieren und zugleich neue Räume für die Lehre eröffnen. Folgende Fragen stehen dabei im Zentrum: Welche Lehr- und (...) Lernräume innerhalb und außerhalb der Hochschule haben sich bislang bewährt? Wo liegen ihre Grenzen, wo ihre Möglichkeiten? Wie lassen sich Lehr- und Lernräume gestalten? Welche Materialien, welche Technik und welche Medien haben sich bewährt oder bieten neue Möglichkeiten? Die Herausgebenden PD Dr. Jörg Noller lehrt Philosophie an der LMU München. Dr. Christina Beitz-Radzio ist Tierärztin und Trainerin (Sprachraum eG)und arbeitet im Studiendekanat der Tierärztlichen Fakultät der LMU München. Melanie Förg, M.A., promoviert in Philosophie an der Universität zu Kielund arbeitet an der Technischen Universität München (TUM) im Team der TUM Talent Factory. Dr. Sandra Eleonore Johst ist Philosophin, wissenschaftliche Mitarbeiterin der FernUniversität in Hagen und selbstständige Beraterin. Dr. Daniela Kugelmann ist akademische Oberrätin am Lehrstuhl für vegetative Anatomie und Zellbiologie an der LMU München. Dr. Sabrina Sontheimer ist freiberufliche Trainerin für Hochschuldidaktik, E-Learning, wissenschaftliches Schreiben und Kommunikation. Am Schreibzentrum der Ludwig-Maximilians-Universität München ist sie für die Weiterbildung der Lehrenden zuständig. Dr. Sören Westerholz ist Biologe und lehrt am Biomedizinischen Centrum der LMU München. (shrink)

Access to communication is critical for individuals with late-stage amyotrophic lateral sclerosis and minimal volitional movement, but they sometimes present with concomitant visual or ocular motility impairments that affect their performance with eye tracking or visual brain-computer interface systems. In this study, we explored the use of modified eye tracking and steady state visual evoked potential BCI, in combination with the Shuffle Speller typing interface, for this population. Two participants with late-stage ALS, visual impairments, and minimal volitional movement completed a (...) single-case experimental research design comparing copy-spelling performance with three different typing systems: commercially available eye tracking communication software, Shuffle Speller with modified eye tracking, and Shuffle Speller with SSVEP BCI. Participant 1 was unable to type any correct characters with the commercial system, but achieved accuracies of up to 50% with Shuffle Speller eye tracking and 89% with Shuffle Speller BCI. Participant 2 also had higher maximum accuracies with Shuffle Speller, typing with up to 63% accuracy with eye tracking and 100% accuracy with BCI. However, participants’ typing accuracy for both Shuffle Speller conditions was highly variable, particularly in the BCI condition. Both the Shuffle Speller interface and SSVEP BCI input show promise for improving typing performance for people with late-stage ALS. Further development of innovative BCI systems for this population is needed. (shrink)

The informed consent process presents challenges for psychological trauma research (e.g. Institutional Review Board [IRB] apprehension). While previous research documents researcher and IRB-member perspectives on these challenges, participant views remain absent. Thus, using a mixed-methods approach, we investigated participant views on consent guidelines in two convenience samples: crowdsourced (N = 268) and undergraduate (N = 265) participants. We also examined whether trauma-exposure influenced participant views. Overall, participants were satisfied with current guidelines, providing minor feedback and ethical reminders for researchers. Moreover, (...) participant views for consent were similar irrespective of trauma-exposure. Our study has implications for IRBs and psychological researchers. (shrink)

ObjectiveTo determine the impact of the affiliate stigma on mental well-being of relatives caring for a person with dementia.DesignThe study was conducted in a cross sectional design.SettingThe study was conducted in a public setting, addressing relatives caring for a person with dementia.ParticipantsParticipants were relatives of patients with a formal diagnosis of dementia. Relatives were defined as caring or living closely to a patient. Participants were recruited with the help of care and welfare organizations.Outcome MeasuresThe main outcome measure was the impact (...) of the affiliate stigma on mental well-being of caring relatives.Results228 participants fully completed the survey. Women, relatives with a higher education and partners experienced more impact of the affiliate stigma on mental well-being than man, relatives with a lower education and relatives with another relationship to the person with dementia. The duration of dementia and the age of the caregiver had a clear significant effect on affiliate stigma.ConclusionThis study revealed that caregiver related features are predicting the presence of an affiliate stigma. Interventions to prevent or reduce the impact of this stigma might focus on these groups. Education about dementia and the impact on patients, relatives and the broader social context might alter the affiliate stigma surrounding dementia. (shrink)

nsights on shared society reflect the nexus between collective actions and durable policy for the common good. The study’s core subject is the deeper understanding of the shared society in theory and practice. It helps overcome conflicting perceptions and divides. The main focus is on reasoning challenged by dynamics in democratic societies. The article aims to highlight its framework avoiding simplistic variations of main theses, but presenting new insights into the applications of this theory. It examines the ontological essence within (...) cross-cutting varieties and dimensions of its profile. The philosophy of shared society is also represented in several practical perspectives. These vectors reflect various motivations and perils as links to practice. These links are: reflections on conflict resolution at municipal level in Germany, electoral participation and vote-buying practices in Bulgaria, EU economic integration and reforms to promote a shared and cohesive living. (shrink)

Completed shortly before her death in 2019, _Tragedy and Philosophy. A Parallel History_ is the sum of Agnes Heller’s reflections on European history and culture, seen through the prism of Europe’s two unique literary creations: tragedy and philosophy.

In lucid dreams the dreamer is aware of dreaming and often able to influence the ongoing dream content. Lucid dreaming is a learnable skill and a variety of techniques is suggested for lucid dreaming induction. This systematic review evaluated the evidence for the effectiveness of induction techniques. A comprehensive literature search was carried out in biomedical databases and specific resources. Thirty-five studies were included in the analysis , of which 26 employed cognitive techniques, 11 external stimulation and one drug application. (...) The methodological quality of the included studies was relatively low. None of the induction techniques were verified to induce lucid dreams reliably and consistently, although some of them look promising. On the basis of the reviewed studies, a taxonomy of lucid dream induction methods is presented. Several methodological issues are discussed and further directions for future studies are proposed. (shrink)

Economic development approaches are increasingly entailing local geographic scales and encouraging the mobilization and organization of territorial actors given local conditions and resources. Lebanon is a country facing frequent uncertainty with recent economic and social difficulties. Its popular cuisine may play a key role in its development and that of its rural space. In fact, that cuisine incorporates a traditional cultural practice called “Mouneh” which consists of preserved pantry foods, historically used to ensure household nutrition. Today, rural food cooperatives are (...) engaging in that practice using agricultural produce from local farmers and are employing women. Despite strong internal and external challenges, they remain attractive actors as their principles of collective benefit, participation and democracy form a strong link with sustainable development goals. This study transversally analyzes the status of food cooperatives in a major agricultural region in Lebanon, the Bekaa valley. Findings mainly quantified size and production and provided a mapped representation of the spatial dependencies on local farmers versus urban markets for trade. With 75% women members and firm reputation in authenticity, food cooperatives in the Bekaa specifically and Lebanon generally are also extensively supported by donors but are being labeled as donor-dependent. Yet, cooperatives are localized in a largely agricultural territory with sufficient evidence of differentiation that could potentially be valorized. Hence, with optimal framing, regulation and networking of cooperatives, one can assume a protection of culinary heritage is possible with scalable contribution to food security and needed local development given major recent setbacks. (shrink)

With the outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), global researchers were confronted with major challenges. The German National Pandemic Cohort Network (NAPKON) was launched in fall 2020 to effectively leverage resources and bundle research activities in the fight against the coronavirus disease 2019 (COVID-19) pandemic. We analyzed the setup phase of NAPKON as an example for multicenter studies in Germany, highlighting challenges and optimization potential in connecting 59 university and nonuniversity study sites. We examined the ethics application (...) process of 121 ethics submissions considering durations, annotations, and outcomes. Study site activation and recruitment processes were investigated and related to the incidence of SARS-CoV-2 infections. For all initial ethics applications, the median time to a positive ethics vote was less than two weeks and 30 of these study sites (65%) joined NAPKON within less than three weeks each. Electronic instead of postal ethics submission (9.5 days (Q1: 5.75, Q3: 17) vs. 14 days (Q1: 11, Q3: 26), p value = 0.01) and adoption of the primary ethics vote significantly accelerated the ethics application process. Each study center enrolled a median of 37 patients during the 14-month observation period, with large differences depending on the health sector. We found a positive correlation between recruitment performance and COVID-19 incidence as well as hospitalization incidence. Our analysis highlighted the challenges and opportunities of the federated system in Germany. Digital ethics application tools, adoption of a primary ethics vote and standardized formal requirements lead to harmonized and thus faster study initiation processes during a pandemic. (shrink)

Theory and practice are interconnected and analogous to each other. Theory gives rise to action, and action precipitates or begets new theories which may lead to further actions and so on, even though, some people try to force reality to fit into their preconceived theories. Discrepancies between theory and practice, word and action have caused disaffection, rifts and conflicts. Matching words with action inspires trust just as duplicity, i.e. saying one thing and doing another, generates bad blood. The problem of (...) the world is the discrepancy between theory and practice or between the spoken word and action. When people (all over the world) begin to match word with action there will be peace, harmony and resounding success in global affairs, especially international relationships. The bridging of the gap requires the concerted efforts of one and all. In this paper, we shall take a critical look at the interrelatedness of theory and practice. We will seek also how to enable philosophy to transform the human world just as science transforms the physical world. (shrink)

Crisis means “decisive moment,” a dangerous time when action must be taken to avoid a complete disaster. In the digital age, the influx of information is extremely rapid. Many people lack the wisdom and prudence to process data correctly and to take timely moral decisions. Too much information is driving people crazy as increase in knowledge goes with an upsurge in crime rate, particularly cybercrime. This historic period is an era of multiple crises, especially crisis of human values, particularly moral (...) ones. What is so special about the crisis of this age? Why does increase in knowledge not correspond to a rise in civility and economic power for all? Is knowledge no longer empowering? Can humans co-exist in tranquility without moral values? This paper will critically reflect on the concerns raised, the challenges and prospects of the digital age, ask seminal questions and proffer invaluable solutions. And also assert the functional role of philosophy, which is needed in order to stem the moral and social crises of the information age. (shrink)

The woman being is a human being. This paper critiques gender politics and questions the mistreatment, the second class status and some of the socio-cultural gender roles of women. It posits critical education of men and women, sensitivity and sensibleness as the surest way out of the quagmire.

Mobile social media have become a widespread means to participate in everyday social and professional life. These platforms encourage the disclosure and exchange of personal information, which comes with privacy risks. While past scholarship has listed various predictors and consequences of online privacy concerns, there has been to date no empirical investigation of a conceivable relationship with perceived stress. Using a longitudinal panel study, we examined the reciprocal relationship between mobile social media privacy concerns and perceived stress. Results supported the (...) hypothesis that mobile social media privacy concerns at T1 are associated with higher perceived stress at T2. However, we found no evidence for the reverse association, that is, perceived stress at T1 was not related to mobile social media privacy concerns at T2. The findings are discussed based on two models—the “Antecedents privacy concerns outcomes” model and the “Privacy calculus” model. (shrink)

The question of consumption emerged as a major focus of research and scholarship in the 1990s but the breadth and diversity of consumer culture has not been fully enough explored. The meanings of consumption, particularly in relation to lifestyle and identity, are of great importance to academic areas including business studies, sociology, cultural and media studies, psychology, geography and politics. The SAGE Handbook of Consumer Culture is a one-stop resource for scholars and students of consumption, where the key dimensions of (...) consumer culture are critically discussed and articulated. The editors have organised contributions from a global and interdisciplinary team of scholars into six key sections: Part 1: Sociology of Consumption Part 2: Geographies of Consumer Culture Part 3: Consumer Culture Studies in Marketing Part 4: Consumer Culture in Media and Cultural Studies Part 5: Material Cultures of Consumption Part 6: The Politics of Consumer Culture. (shrink)

BackgroundIt is becoming increasingly apparent that the COVID-19 pandemic not only poses risks to physical health, but that it also might lead to a global mental health crisis, making the exploration of protective factors for mental well-being highly relevant. The present study seeks to investigate religious/spiritual well-being as a potential protective factor with regard to psychiatric symptom burden and addictive behavior.Materials and MethodsThe data was collected by conducting an online survey in the interim period between two national lockdowns with young (...) adults in Austria. The primary study variables were assessed through the Brief Symptom Inventory 18, the Alcohol, Smoking and Substance Involvement Screening Test and the Multidimensional Inventory for Religious/Spiritual Well-Being short version, with its sub-dimensions Hope, Forgiveness, General Religiosity, and Connectedness.ResultsWe observed HO and FO as substantial negative predictors of psychiatric symptom burden. With regard to addictive behavior, HO in particular but also GR seem to have a protective function. Furthermore, we found positive connections between CO, psychiatric symptom burden, and addictive behavior.ConclusionIn line with our assumptions, HO, FO and to a minor extent GR were confirmed as negative predictors regarding psychiatric symptom burden or addictive behavior in young adults, coping with the psychological threat of COVID-19 pandemic. These dimensions might be further considered as potential resources in clinical treatment. However, the positive prediction of mental illness parameters by increased feelings of CO could also be interpreted as an expression of exhaustion and alienation from the real world. (shrink)

BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...) is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia.MethodsWe adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis.ResultsWe found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk.ConclusionThe study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration. (shrink)