Life Sciences, Society and Policy最新文献

{"title":"CRISPR as agent: a metaphor that rhetorically inhibits the prospects for responsible research.","authors":"Leah Ceccarelli","doi":"10.1186/s40504-018-0088-8","DOIUrl":"10.1186/s40504-018-0088-8","url":null,"abstract":"<p><p>In 2015, a group of 18 scientists and bioethicists published an editorial in Science calling for \"open discourse on the use of CRISPR-Cas9 technology to manipulate the human genome\" and recommending that steps be taken to strongly discourage \"any attempts at germline genome modification\" in humans with this powerful new technology. Press reports compared the essay to a letter written by Paul Berg and 10 other scientists in 1974, also published in Science, calling for a voluntary deferral of certain types of recombinant DNA experimentation. A rhetorical analysis of the metaphors in these two documents, and in the summary statements that came out of the respective National Academy of Sciences conferences they instigated, shows that while they have a lot in common, they are different in at least one important way. The more recent texts deploy conceptual metaphors that portray the biotechnology in question as an autonomous agent, subtly suggesting an inevitability to its development, in contrast to the earlier texts, which portray the scientists who are using the technology as the primary agents who take action. Rhetorical moves depicting biotechnology as an agent in the 2015 texts hint at contemporary skepticism about whether humans can restrain the forward momentum of science and technology in a global context, thus inhibiting scientists from imagining a consequential role for themselves in shaping the future of responsible research.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6233552/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36723730","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":"Understanding the emotion of shame in transgender individuals - some insight from Kafka.","authors":"Simona Giordano","doi":"10.1186/s40504-018-0085-y","DOIUrl":"https://doi.org/10.1186/s40504-018-0085-y","url":null,"abstract":"<p><p>Both clinical literature and biographical accounts suggest that many transgender individuals experience shame or have experienced shame at some point in their life for reasons related to their gender identity. In clinical psychology, at least until the 1960s, shame has not received much attention; focus was on guilt and shame was regarded mainly as a 'by-product' of guilt. From the 1960s shame has been identified as an emotion not necessarily related to guilt and with unique features, and has been studied in connection with a number of situations, such as domestic abuse, trauma, illness, and sexual orientation. However shame has been studied less in connection with gender variance. Shame has however intrigued philosophers, writers and artists for a very long time. Yet, the importance of the contribution of various disciplines to the understanding of the experience of shame in vulnerable individuals has been overlooked. This paper attempts to explore the meaning of shame for transgender individuals, by making reference not only to clinical studies, but also to artworks and literary novels. Franz Kafka, named \"the poet of shame\" is particularly salient to the analysis of shame, and some of his works will enable us to shed light on the complexities of the experience of shame in transgender individuals which may defy clinical observation.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0085-y","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36537821","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":"How to do things with metaphors: engineering life as hodgepodge.","authors":"Matthew Kearnes, Declan Kuch, Angus Johnston","doi":"10.1186/s40504-018-0084-z","DOIUrl":"10.1186/s40504-018-0084-z","url":null,"abstract":"<p><p>This paper presents a collaboration between social scientists and a chemist exploring the promises for new therapy development at the intersection between synthetic biology and nanotechnology. Drawing from ethnographic studies of laboratories and a recorded discussion between the three authors, we interrogate the metaphors that underpin what Mackenzie (Futures 48:5-12 2013) has identified as a recursive relationship in the iconography of the life sciences and its infrastructure. Focusing specifically on the use of gene editing techniques in synthetic biology and bio-nanotechnology, we focus our analysis on the key metaphors of 'evolutionary life as hodge-podge' within which 'cutting' of DNA and the 'sticking' and 'binding' of engineered particles to proteins can be performed by researchers in laboratory settings. Taken together, we argue that these metaphors are consequential for understanding metaphors of life-as-machine and the prevalence of notions of 'engineering life'. Exploring the ways in which notions of cutting, targeting and life as an evolutionary hodgepodge prefigure a more contingent notion of engineering and synthesis we close by considering the interpretive implications for ethnomethodological approaches to contemporary life science research.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6389216/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36497014","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":"Constructing future scenarios as a tool to foster responsible research and innovation among future synthetic biologists.","authors":"Afke Wieke Betten,&nbsp;Virgil Rerimassie,&nbsp;Jacqueline E W Broerse,&nbsp;Dirk Stemerding,&nbsp;Frank Kupper","doi":"10.1186/s40504-018-0082-1","DOIUrl":"10.1186/s40504-018-0082-1","url":null,"abstract":"<p><p>The emerging field of synthetic biology, the (re-)designing and construction of biological parts, devices and systems for useful purposes, may simultaneously resolve some issues and raise others. In order to develop applications robustly and in the public interest, it is important to organize reflexive strategies of assessment and engagement in early stages of development. Against this backdrop, initiatives related to the concept of Responsible Research and Innovation (RRI) have also appeared. This paper describes such an initiative: the construction of future scenarios to explore the plausibility and desirability of potential synthetic biology innovations. We guided teams of synthetic biology students who participated in the large international Genetically Engineered Machines (iGEM) competition, in constructing scenarios aimed at exploring the plausibility and desirability of potential synthetic biology innovations. In this paper we aim to examine to what extent, and how, constructing such future scenarios contributes to RRI. In order to do so, we conducted observations and interviews to understand what kind of learning and reflection was promoted by constructing the scenarios in terms of four dimensions, which are discussed prominently in the literature on RRI: anticipation, inclusion, reflexivity and responsiveness. While we focus on how constructing future scenarios can contribute to strengthening RRI at a project (and individual) level, we also consider how far our experiment may foster RRI in the iGEM competition in general, and perhaps even inspire constructive collaboration between 'social scientists' and 'natural scientists' in the context of larger scientific research programmes.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0082-1","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36471933","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 governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project.","authors":"Harriet J A Teare,&nbsp;Federico de Masi,&nbsp;Karina Banasik,&nbsp;Anna Barnett,&nbsp;Sanna Herrgard,&nbsp;Bernd Jablonka,&nbsp;Jacqueline W M Postma,&nbsp;Timothy J McDonald,&nbsp;Ian Forgie,&nbsp;Piotr J Chmura,&nbsp;Emil K Rydzka,&nbsp;Ramneek Gupta,&nbsp;Soren Brunak,&nbsp;Ewan Pearson,&nbsp;Jane Kaye","doi":"10.1186/s40504-018-0083-0","DOIUrl":"10.1186/s40504-018-0083-0","url":null,"abstract":"<p><p>Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiered Data Access Committee. The process was intended to allow quick access to data, whilst enabling strong oversight of how data were being accessed and by whom, and any subsequent analyses, to contribute to the overall objectives of the consortium.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0083-0","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36460248","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":"Creating life and the media: translations and echoes.","authors":"Manuel Porcar,&nbsp;Juli Peretó","doi":"10.1186/s40504-018-0087-9","DOIUrl":"https://doi.org/10.1186/s40504-018-0087-9","url":null,"abstract":"<p><p>Synthetic biology is the engineering view on biotechnology that ultimately aims at fulfilling the quest of building an artificial cell. From the very first attempts of synthesizing life, this subject has made an impact on the media through, very often, misleading headlines and news. We review here the historical journalistic approach on synthetic biology and related disciplines, from the early twentieth century to the lastest achievements on designing protocells or genome reduction. However, it would be very naive to consider the research community and the media to be unidirectionally linked, with the latter being mere displayers (and disrupters) of the research \"reality\". On the contrary, the research community has also received a strong influence from the media, as evidenced by statements from researchers, common metaphors and, even, a trend to unconsciously develop shared techno-social paradigms. We conclude that, beyond overstatements from researchers and journalists' misunderstandings, both communities provide strong feedback to each other and, together, contribute to define the dream that synthetic biologists are aiming for.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0087-9","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36411705","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":"Evolutionary tinkering vs. rational engineering in the times of synthetic biology.","authors":"Víctor de Lorenzo","doi":"10.1186/s40504-018-0086-x","DOIUrl":"https://doi.org/10.1186/s40504-018-0086-x","url":null,"abstract":"<p><p>Synthetic biology is not only a contemporary reformulation of the recombinant DNA technologies of the last 30 years, combined with descriptive language imported from electrical and industrial engineering. It is also a new way to interpret living systems and a statement of intent for the use and reprogramming of biological objects for human benefit. In this context, the notion of designer biology is often presented as opposed to natural selection following the powerful rationale formulated by François Jacob on evolution-as-tinkering. The onset of synthetic biology opens a different perspective by leaving aside the question about the evolutionary origin of biological phenomena and focusing instead on the relational logic and the material properties of the corresponding components that make biological system work as they do. Once a functional challenge arises, the solution space for the problem is not homogeneous but it has attractors that can be accessed either through random exploration (as evolution does) or rational design (as engineers do). Although these two paths (i.e. evolution and engineering) are essentially different, they can lead to solutions to specific mechanistic bottlenecks that frequently coincide or converge-and one can easily help to understand and improve the other. Alas, productive discussions on these matters are often contaminated by ideological preconceptions that prevent adoption of the engineering metaphor to understand and ultimately reshape living systems-as ambitioned by synthetic biology. Yet, some possible ways to overcome the impasse are feasible. In parallel to Monod's evolutionary paradox of teleo-logy (finality/purpose) vs. teleo-nomy (appearance of finality/purpose), a mechanistic paradox could be entertained between techno-logy (rational engineering) vs techno-nomy (appearance of rational engineering), all for the sake of understanding the relational logic that enables live systems to function as physico-chemical entities in time and space. This article thus proposes a radical vision of synthetic biology through the lens of the engineering metaphor.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0086-x","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36388768","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":"Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold?","authors":"Gabrielle Bertier,&nbsp;Yann Joly","doi":"10.1186/s40504-018-0081-2","DOIUrl":"10.1186/s40504-018-0081-2","url":null,"abstract":"<p><strong>Background: </strong>The decreasing cost of next-generation sequencing technologies (NGS) has resulted in their increased use in research, and in the clinic. However, France and Quebec have not yet implemented nation-wide personalized medicine programs using NGS. To produce policies on the large-scale implementation of NGS, decision makers could benefit from a detailed understanding of how these technologies are currently used, their limitations, and the benefits they could bring to patients.</p><p><strong>Objectives: </strong>We aimed at answering two research questions: How are patients' NGS data currently managed in healthcare institutions in Quebec and in France? What issues do technology users identify which should be solved in order to implement clinical genomics at the national level?</p><p><strong>Method: </strong>Through a multiple case study method, we analysed interviews and documentation from four teams that use whole-exome sequencing in hybrid clinical research projects focusing on cancer and rare diseases.</p><p><strong>Results: </strong>Interviewees detailed numerous challenges linked with managing the complexity of the process of collecting and interpreting data in a relevant manner for patients, and described how obtaining buy-in from multiple stakeholders was necessary.</p><p><strong>Conclusion: </strong>A strong political will is essential for personalized medicine to be implemented efficiently in France and Quebec.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0081-2","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36362559","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":"Who are the users of synthetic DNA? Using metaphors to activate microorganisms at the center of synthetic biology.","authors":"Erika Amethyst Szymanski","doi":"10.1186/s40504-018-0080-3","DOIUrl":"10.1186/s40504-018-0080-3","url":null,"abstract":"<p><p>Synthetic biology, a multidisciplinary field involving designing and building with DNA, often designs and builds in microorganisms. The role of these microorganisms tends to be understood through metaphors making the microbial cell like a machine and emphasizing its passivity: cells are described as platforms, chassis, and computers. Here, I point to the efficacy of such metaphors in enacting the microorganism as a particular kind of (non-)participant in the research process, and I suggest the utility of employing metaphors that make microorganisms a different kind of thing-active participants, contributors, and even collaborators in scientific research. This suggestion is worth making, I argue, because enabling the activity of the microorganism generates opportunities for learning from microorganisms in ways that may help explain currently unexplained phenomena in synthetic biology and suggest new experimental directions. Moreover, \"activating the microorganism\" reorients relationships between human scientists and nonhuman experimental participants away from control over nonhuman creatures and toward respect for and listening to them, generating conditions of possibility for exploring what responsible research means when humans try to be responsible toward and even with creatures across species boundaries.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6045561/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36312271","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":"Disease surveillance data sharing for public health: the next ethical frontiers.","authors":"Patty Kostkova","doi":"10.1186/s40504-018-0078-x","DOIUrl":"https://doi.org/10.1186/s40504-018-0078-x","url":null,"abstract":"<p><p>In the recent years, we have been witnessing a digital revolution in public and global health creating unprecedented opportunities for epidemic intelligence and public health emergencies. However, these opportunities created a double edge sword as access to data, quality monitoring and assurance, as well as governance and regulation frameworks for data privacy are lagging behind technological achievements.In this paper we identify three ethical challenges: sharing data across various early warning tools to support risk assessment. Secondly, define the challenges to be addressed by the legal frameworks for public health data sharing to unlock the potential of population-level datasets for research with no impact on citizens privacy. The third challenge lies with stricter regulation of the IT industry with regards to manipulating user data - such an initiative, GDPR, comes to force in the EU in May 2018.</p>","PeriodicalId":37861,"journal":{"name":"Life Sciences, Society and Policy","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2018-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1186/s40504-018-0078-x","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"36283258","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}