426 research outputs found

    Returning genome sequences to research participants:Policy and practice

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    Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data

    DataSHIELD: resolving a conflict in contemporary bioscience—performing a pooled analysis of individual-level data without sharing the data

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    Background Contemporary bioscience sometimes demands vast sample sizes and there is often then no choice but to synthesize data across several studies and to undertake an appropriate pooled analysis. This same need is also faced in health-services and socio-economic research. When a pooled analysis is required, analytic efficiency and flexibility are often best served by combining the individual-level data from all sources and analysing them as a single large data set. But ethico-legal constraints, including the wording of consent forms and privacy legislation, often prohibit or discourage the sharing of individual-level data, particularly across national or other jurisdictional boundaries. This leads to a fundamental conflict in competing public goods: individual-level analysis is desirable from a scientific perspective, but is prevented by ethico-legal considerations that are entirely valid

    Ethics and biobanks

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    Biobank research has been the focus of great interest of scholars and regulatory bodies who have addressed different ethical issues. On the basis of a review of the literature it may be concluded that, regarding some major themes in this discussion, a consensus seems to emerge on the international scene after the regular exchange of arguments in scientific journals. Broad or general consent is emerging as the generally preferred solution for biobank studies and straightforward instructions for coding will optimise privacy while facilitating research that may result in new methods for the prevention of disease and for medical treatment. The difficult question regarding the return of information to research subjects is the focus of the current research, but a helpful analysis of some of the issues at stake and concrete recommendations have recently been suggested

    A strong CO<sub>2</sub> sink enhanced by eutrophication in a tropical coastal embayment (Guanabara Bay, Rio de Janeiro, Brazil)

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    In contrast to its small surface area, the coastal zone plays a disproportionate role in the global carbon cycle. Carbon production, transformation, emission and burial rates at the land–ocean interface are significant at the global scale but still poorly known, especially in tropical regions. Surface water pCO2 and ancillary parameters were monitored during nine field campaigns between April 2013 and April 2014 in Guanabara Bay, a tropical eutrophic to hypertrophic semi-enclosed estuarine embayment surrounded by the city of Rio de Janeiro, southeast Brazil. Water pCO2 varied between 22 and 3715 ppmv in the bay, showing spatial, diurnal and seasonal trends that mirrored those of dissolved oxygen (DO) and chlorophyll a (Chl a). Marked pCO2 undersaturation was prevalent in the shallow, confined and thermally stratified waters of the upper bay, whereas pCO2 oversaturation was restricted to sites close to the small river mouths and small sewage channels, which covered only 10 % of the bay's area. Substantial daily variations in pCO2 (up to 395 ppmv between dawn and dusk) were also registered and could be integrated temporally and spatially for the establishment of net diurnal, seasonal and annual CO2 fluxes. In contrast to other estuaries worldwide, Guanabara Bay behaved as a net sink of atmospheric CO2, a property enhanced by the concomitant effects of strong radiation intensity, thermal stratification, and high availability of nutrients, which promotes phytoplankton development and net autotrophy. The calculated CO2 fluxes for Guanabara Bay ranged between −9.6 and −18.3 mol C m−2 yr−1, of the same order of magnitude as the organic carbon burial and organic carbon inputs from the watershed. The positive and high net community production (52.1 mol C m−2 yr−1) confirms the high carbon production in the bay. This autotrophic metabolism is apparently enhanced by eutrophication. Our results show that global CO2 budgetary assertions still lack information on tropical, marine-dominated estuarine systems, which are affected by thermal stratification and eutrophication and behave specifically with respect to atmospheric CO2

    Diversity work in community sport organizations: Commitment, resistance and institutional change

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    Diversity is a key term used in a range of public and private organizations to describe institutional goals, values and practices. Sport is a prominent social institution where the language of diversity is frequently and positively used; yet, this rhetoric does not necessarily translate into actual practice within sport organizations. This paper critically examines diversity work in community sports clubs. Drawing upon qualitative research at 31 amateur sports clubs in Australia, the findings show that diversity work in community sport organizations is often haphazard and accidental, rather than a strategic response or adaptation to policy. This paper concludes that while individual champions are critical to the promotion of diversity, persistent tensions and resistance arise when they seek to translate the language of diversity into institutional practice and culture change

    Smart Distance Lab’s art fair, experimental data on social distancing during the COVID-19 pandemic

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    In the absence of a vaccine, social distancing behaviour is pivotal to mitigate COVID-19 virus spread. In this large-scale behavioural experiment, we gathered data during Smart Distance Lab: The Art Fair (n = 839) between August 28 and 30, 2020 in Amsterdam, the Netherlands. We varied walking directions (bidirectional, unidirectional, and no directions) and supplementary interventions (face mask and buzzer to alert visitors of 1.5 metres distance). We captured visitors’ movements using cameras, registered their contacts (defined as within 1.5 metres) using wearable sensors, and assessed their attitudes toward COVID-19 as well as their experience during the event using questionnaires. We also registered environmental measures (e.g., humidity). In this paper, we describe this unprecedented, multi-modal experimental data set on social distancing, including psychological, behavioural, and environmental measures. The data set is available on figshare and in a MySQL database. It can be used to gain insight into (attitudes toward) behavioural interventions promoting social distancing, to calibrate pedestrian models, and to inform new studies on behavioural interventions
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