The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...) Consortium, one of the first international collaborative genomics research projects in Africa. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

L'historiographie française s'est pleinement intéressée aux cultures populaires après 1960, pour en identifier les corpus spécifiques, les traits rémanents et la symbolique des rituels . Mais dès 1970, la controverse surgit à propos du découpage entre savant et populaire , dans un contexte de plus grande prise en compte des modes d'échange, de circulation, d'usages. La question de la réification du peuple sous-tendait ces débats vifs. Plus récemment, la disparition du terme «populaire» au profit d'expressions de substitution témoigne du malaise (...) des historiens face à une culture populaire mal identifiable, mais qui possède des pratiques culturelles propres, trop peu inventoriées. C'est le défi de la jeune histoire culturelle.French historiography fully was interested in popular cultures after 1960, to identify specific productions, main issues and symbolics of ritual . But since 1970, the controversy emerges concerning cutting between high and low , in a context of rethinking the modes of exchange, of circulation, of uses. The question of the reification of the people underlay these sharp debates. More recently, the disappearance of the term "popular" with the profit of expressions of substitution testifies to the faintness of the historians against a popular culture not much identifiable, but which has own cultural practices, too little inventoried. There is the challenge for the young cultural history. (shrink)

Positive events play an essential role in people’s wellbeing. Capitalisation – disclosing such events to others – bolsters such salutary effects. To understand capitalisation-related motivational processes in romantic partners’ daily lives, we adopted Higgins’ motivational perspective; namely, that people’s primary motivation is to feel effective with respect to Value (achieving the desired outcome), Truth (understanding what is true), and Control (managing what happens). We were particularly interested in clarifying how these aspects of effectiveness are reflected in people’s daily positive experiences, (...) their partners’ responses to their disclosure, and the matching between the two. The role of subject’s motivational regulatory mode (assessment vs. locomotion) in these processes was also examined. The results of a diary study of 83 couples showed that assessors (those with motivation to engage in critical evaluation) characterised their positive experiences as high on truth effectiveness but reported greater benefits from partner’s responses focusing on control effectiveness. Locomotors (those with motivation to initiate action) were more likely to characterise their positive experiences as high on control effectiveness, but reported greater benefit from partner’s responses focusing on value effectiveness. Finally, response mismatching, in particular an “under-focused” response (partner’s response effectiveness focus < recipient’s event-related motivational effectiveness focus) was rated as less beneficial. (shrink)