Life Sciences, Society and Policy最新文献

{"title":"Young people's awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students.","authors":"Pamela Tozzo,&nbsp;Antonio Fassina,&nbsp;Luciana Caenazzo","doi":"10.1186/s40504-017-0055-9","DOIUrl":"https://doi.org/10.1186/s40504-017-0055-9","url":null,"abstract":"<p><p>Current policy approaches to social and ethical issues surrounding biobanks manifest lack of public information given by researchers and government, despite the evidence that Italian citizens are well informed about technical and other public perspectives of biotechnologies. For this reason, the focus of our survey was to interview our University's students on these aspects. The sample consisted of Padua University students (N = 959), who were administered a questionnaire comprising eight questions covering their knowledge about biobanks, their perception of the related benefits and risks, their willingness to donate samples to a biobank for research purposes, their attitude to having their own DNA profile included in a forensic DNA database, and the reasons behind their answers. The vast majority of the students invited to take part in the survey completed the questionnaire, and the number of participants sufficed to be considered representative of the target population. Despite the respondents' unfamiliarity with the topics explored, suggested by the huge group of respondents answering \"I don't know\" to the questions regarding Itaian regulation and reality, their answers demonstrate a general agreement to participate in a biobanking scheme for research purposes, as expressed by the 91% of respondents who were reportedly willing to donate their samples. As for the idea of a forensic DNA database, 35% of respondents said they would agree to having their profile included in such a database, even if they were not fully aware of the benefits and risks of such action.This study shows that Italian people with a higher education take a generally positive attitude to the idea of donating biological samples. It contributes to empirical evidence of what Italy's citizens understand about biobanking, and of their willingness to donate samples for research purposes, and also to have their genetic profiles included in a national forensic DNA database. Our findings may have clear implications for the policy discussion on biobanks in Italy, in particular it is important to take into account the Italian population's poor consciousness of forensic DNA database, in order to ensure a better interaction between policy makers and citizens and to make them more aware of the need to balance the individual's rights and the security of society.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0055-9","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35077717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transformation of intimacy and its impact in developing countries.","authors":"M D Muniruzzaman","doi":"10.1186/s40504-017-0056-8","DOIUrl":"https://doi.org/10.1186/s40504-017-0056-8","url":null,"abstract":"<p><p>Nowadays intimacy or intimate relationship is very familiar and widely used term all over the world. The term 'Intimacy' generally denotes a close interpersonal relationship or feeling of being in a close personal association and belonging together from both physical and mental point of view. It also denotes very close and effective connection with one another which may exist for whole life or may not. This article has been prepared on the basis of secondary sources and it tries to explore how this intimacy or intimate relationship has been gradually transforming from pre-modern society to modern society and from modern society to post-modern society for over the eras. This article also tries to explore the impact of transformed intimacy or intimate relationship, especially in the developing countries, like Bangladesh. Intimate relationship plays very significant role in the overall life style of any human being. This relationship includes feelings of liking, romance, sexuality or sexual relationship, emotional or personal support between mates. But the role of sexuality or sexual relationship is gradually increasing in intimacy, not only in the western countries but also in the developing countries. Nowadays people are involved with many kinds of premarital and extramarital relationships and they try to avoid the risk of reproduction. This tendency creates many problems in the developing countries, as most of the people of such developing countries are poor and illiterate. They are not aware about the dangerous impact of unsafe physical or sexual relationship. So the people of developing countries like Bangladesh are very vulnerable in the aspect of erosion of values and spreading different types of sexually transmitted diseases.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0056-8","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35286432","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Product, not process! Explaining a basic concept in agricultural biotechnologies and food safety.","authors":"Giovanni Tagliabue","doi":"10.1186/s40504-017-0048-8","DOIUrl":"https://doi.org/10.1186/s40504-017-0048-8","url":null,"abstract":"<p><p>Most life scientists have relentlessly recommended any evaluative approach of agri-food products to be based on examination of the phenotype, i.e. the actual characteristics of the food, feed and fiber varieties: the effects of any new cultivar (or micro-organism, animal) on our health are not dependent on the process(es), the techniques used to obtain it.The so-called \"genetically modified organisms\" (\"GMOs\"), on the other hand, are commonly framed as a group with special properties - most frequently seen as dubious, or even harmful.Some social scientists still believe that considering the process is a correct background for science-based understanding and regulation. To show that such an approach is utterly wrong, and to invite scientists, teachers and science communicators to explain this mistake to students, policy-makers and the public at large, we imagined a dialogue between a social scientist, who has a positive opinion about a certain weight that a process-based orientation should have in the risk assessment, and a few experts who offer plenty of arguments against that view. The discussion focuses on new food safety.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0048-8","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34779069","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Towards new human rights in the age of neuroscience and neurotechnology.","authors":"Marcello Ienca,&nbsp;Roberto Andorno","doi":"10.1186/s40504-017-0050-1","DOIUrl":"https://doi.org/10.1186/s40504-017-0050-1","url":null,"abstract":"<p><p>Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise important challenges to human rights principles that need to be addressed to prevent unintended consequences. This paper assesses the implications of emerging neurotechnology applications in the context of the human rights framework and suggests that existing human rights may not be sufficient to respond to these emerging issues. After analysing the relationship between neuroscience and human rights, we identify four new rights that may become of great relevance in the coming decades: the right to cognitive liberty, the right to mental privacy, the right to mental integrity, and the right to psychological continuity.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0050-1","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34942821","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A statistician's perspective on digital epidemiology.","authors":"Michael Höhle","doi":"10.1186/s40504-017-0063-9","DOIUrl":"https://doi.org/10.1186/s40504-017-0063-9","url":null,"abstract":"<p><p>We address the question \"does digital epidemiology represent an epistemic shift in infectious disease epidemiology\" from a statistician's viewpoint. Our main argument is that infectious disease epidemiology has not changed fundamentally as it always has been data-driven. However, as the data aspect has become more prominent, we discuss the statistical toolbox of the modern epidemiologist and argue that problem solving in the digital age, more than ever requires an interdisciplinary quantitative approach.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0063-9","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35641448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An ethical assessment model for digital disease detection technologies.","authors":"Kerstin Denecke","doi":"10.1186/s40504-017-0062-x","DOIUrl":"https://doi.org/10.1186/s40504-017-0062-x","url":null,"abstract":"<p><p>Digital epidemiology, also referred to as digital disease detection (DDD), successfully provided methods and strategies for using information technology to support infectious disease monitoring and surveillance or understand attitudes and concerns about infectious diseases. However, Internet-based research and social media usage in epidemiology and healthcare pose new technical, functional and formal challenges. The focus of this paper is on the ethical issues to be considered when integrating digital epidemiology with existing practices. Taking existing ethical guidelines and the results from the EU project M-Eco and SORMAS as starting point, we develop an ethical assessment model aiming at providing support in identifying relevant ethical concerns in future DDD projects. The assessment model has four dimensions: user, application area, data source and methodology. The model supports in becoming aware, identifying and describing the ethical dimensions of DDD technology or use case and in identifying the ethical issues on the technology use from different perspectives. It can be applied in an interdisciplinary meeting to collect different viewpoints on a DDD system even before the implementation starts and aims at triggering discussions and finding solutions for risks that might not be acceptable even in the development phase. From the answers, ethical issues concerning confidence, privacy, data and patient security or justice may be judged and weighted.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0062-x","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35422088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The social dimension of biobanking: objectives and challenges.","authors":"E V Bryzgalina, K Y Alasania, T A Varkhotov, S M Gavrilenko, E M Shkomova","doi":"10.1186/s40504-017-0059-5","DOIUrl":"10.1186/s40504-017-0059-5","url":null,"abstract":"<p><p>The present article allows to explore, analyze and reflect on the consequences and problems posed by biobanks and attempts to prove the need of social and humanitarian support in establishing and functioning of biobanks as a new type of scientific institutions. The basis of the article is the latest publications devoted to social and humanitarian aspects of biobanking and Russian experience of the initial formation of this subject domain (before the first professional biobanks were established in Russia in the 2010-s, the only highly specialized collections of bio-samples had been registered). The article marks and classifies different aspects of biobanking that objectively demands the participation of specialists in ethics and social sciences. The cases of biobanking development and risks are estimated; the objective need of applied ethics and social sciences specialists' participation in biobanking is proved.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595704/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35398215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Creative tensions: mutual responsiveness adapted to private sector research and development.","authors":"Matti Sonck,&nbsp;Lotte Asveld,&nbsp;Laurens Landeweerd,&nbsp;Patricia Osseweijer","doi":"10.1186/s40504-017-0058-6","DOIUrl":"https://doi.org/10.1186/s40504-017-0058-6","url":null,"abstract":"<p><p>The concept of mutual responsiveness is currently based on little empirical data in the literature of Responsible Research and Innovation (RRI). This paper explores RRI's idea of mutual responsiveness in the light of recent RRI case studies on private sector research and development (R&D). In RRI, responsible innovation is understood as a joint endeavour of innovators and societal stakeholders, who become mutually responsive to each other in defining the 'right impacts' of the innovation in society, and in steering the innovation towards realising those impacts. Yet, the case studies identified several reasons for why the idea of mutual responsiveness does not always appear feasible or desirable in actual R&D situations. Inspired by the discrepancies between theory and practice, we suggest three further elaborations for the concept of responsiveness in RRI. Process-responsiveness is suggested for identifying situations that require stakeholder involvement specifically during R&D. Product-responsiveness is suggested for mobilising the potential of innovation products to be adaptable according to diverse stakeholder needs. Presponsiveness is suggested as responsiveness towards stakeholders that are not (yet) reachable at a given time of R&D. Our aim is to contribute to a more tangible understanding of responsiveness in RRI, and suggest directions for further analysis in upcoming RRI case studies.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0058-6","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35479843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Synthetic biology, metaphors and responsibility.","authors":"Carmen McLeod,&nbsp;Brigitte Nerlich","doi":"10.1186/s40504-017-0061-y","DOIUrl":"https://doi.org/10.1186/s40504-017-0061-y","url":null,"abstract":"<p><p>Metaphors are not just decorative rhetorical devices that make speech pretty. They are fundamental tools for thinking about the world and acting on the world. The language we use to make a better world matters; words matter; metaphors matter. Words have consequences - ethical, social and legal ones, as well as political and economic ones. They need to be used 'responsibly'. They also need to be studied carefully - this is what we want to do through this editorial and the related thematic collection. In the context of synthetic biology, natural and social scientists have become increasingly interested in metaphors, a wave of interest that we want to exploit and amplify. We want to build on emerging articles and books on synthetic biology, metaphors of life and the ethical and moral implications of such metaphors. This editorial provides a brief introduction to synthetic biology and responsible innovation, as well as a comprehensive review of literature on the social, cultural and ethical impacts of metaphor use in genomics and synthetic biology. Our aim is to stimulate an interdisciplinary and international discussion on the impact that metaphors can have on science, policy and publics in the context of synthetic biology.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0061-y","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35453861","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical sharing of health data in online platforms - which values should be considered?","authors":"Brígida Riso, Aaro Tupasela, Danya F Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C H Kongsholm, Silvia Zullo, Vojin Rakic","doi":"10.1186/s40504-017-0060-z","DOIUrl":"10.1186/s40504-017-0060-z","url":null,"abstract":"<p><p>Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME 'Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives' (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals' trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2017-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-017-0060-z","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35427252","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}