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Life Sciences, Society and Policy

Federico Ferretti
The emergence of Do-It-Yourself (DIY) science movements is becoming a topic widely discussed in academia and policy, as well as by the general public and the media. While DIY approaches enjoy increasing diffusion even in official research, different social actors frequently talk about them in different ways and circumstances. Interaction and negotiation processes amongst actors (e.g. policy makers and DIY communities) define the premises upon which different conceptualisations of DIY science are deployed.In this paper we offer a framework for analysing the discourse on DIY science...
January 14, 2019: Life Sciences, Society and Policy
Giovanni Tagliabue
Critics of the use of advanced biotechnologies in the agri-food sector ("New Breeding Techniques", comprising CRISPR) demand a strict regulation of any such method, even more severe than rules applied to so-called "Genetically Modified Organisms" (i.e. recombinant DNA processes and products). But their position is unwarranted, since it relies on faulty arguments.While most life scientists have always explained that the trigger for regulation should be the single product and its phenotypic traits, opponents insist that the target should be certain biotech processes...
December 10, 2018: Life Sciences, Society and Policy
Leah Ceccarelli
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...
November 13, 2018: Life Sciences, Society and Policy
Simona Giordano
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...
October 1, 2018: Life Sciences, Society and Policy
Matthew Kearnes, Declan Kuch, Angus Johnston
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...
September 17, 2018: Life Sciences, Society and Policy
Afke Wieke Betten, Virgil Rerimassie, Jacqueline E W Broerse, Dirk Stemerding, Frank Kupper
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...
September 10, 2018: Life Sciences, Society and Policy
Harriet J A Teare, Federico de Masi, Karina Banasik, Anna Barnett, Sanna Herrgard, Bernd Jablonka, Jacqueline W M Postma, Timothy J McDonald, Ian Forgie, Piotr J Chmura, Emil K Rydzka, Ramneek Gupta, Soren Brunak, Ewan Pearson, Jane Kaye
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...
September 4, 2018: Life Sciences, Society and Policy
Manuel Porcar, Juli Peretó
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"...
August 20, 2018: Life Sciences, Society and Policy
Víctor de Lorenzo
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...
August 12, 2018: Life Sciences, Society and Policy
Gabrielle Bertier, Yann Joly
BACKGROUND: 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. OBJECTIVES: 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? METHOD: 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...
August 1, 2018: Life Sciences, Society and Policy
Erika Amethyst Szymanski
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...
July 14, 2018: Life Sciences, Society and Policy
Patty Kostkova
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...
July 4, 2018: Life Sciences, Society and Policy
Martin Döring
Synthetic biology (SynBio) represents a relatively young field of research which has developed into an important scientific endeavour. Characterised by a high degree of interdisciplinary work crossing disciplinary boundaries, such as biology, mathematics and engineering, SynBio has been, since its beginning, devoted to creating new biological functions, metabolic pathways or even minimal organisms. Although its often-articulated aim of developing new forms of life has so far not been archived, SynBio nowadays represents a well-established biotechnological approach and it has also attracted public concern, especially since Craig Venter's work on Mycoplasma Mycoides JCVI-syn1...
June 24, 2018: Life Sciences, Society and Policy
Silja Samerski
This article examines how digital epidemiology and eHealth coalesce into a powerful health surveillance system that fundamentally changes present notions of body and health. In the age of Big Data and Quantified Self, the conceptual and practical distinctions between individual and population body, personal and public health, surveillance and health care are diminishing. Expanding on Armstrong's concept of "surveillance medicine" to "quantified self medicine" and drawing on my own research on the symbolic power of statistical constructs in medical encounters, this article explores the impact of digital health surveillance on people's perceptions, actions and subjectivities...
June 14, 2018: Life Sciences, Society and Policy
Joachim Boldt
The extent to which machine metaphors are used in synthetic biology is striking. These metaphors contain a specific perspective on organisms as well as on scientific and technological progress. Expressions such as "genetically engineered machine", "genetic circuit", and "platform organism", taken from the realms of electronic engineering, car manufacturing, and information technology, highlight specific aspects of the functioning of living beings while at the same time hiding others, such as evolutionary change and interdependencies in ecosystems...
June 4, 2018: Life Sciences, Society and Policy
Oktawian Nawrot
The Council of Europe's legal regulation concerning development of biology and medicine undoubtedly form the most interesting, but certainly not perfect, over-national system of protection of human beings in prenatal stages of development. The strength of the mentioned system is that it based on well-known and common acceptable values and rules such as human dignity and its protection. The aim of the paper is to present the reasons behind adopting such a system, as well as the consequences of the latter.The author argues that in such a way a revolution within the human rights system of the Council of Europe took place...
May 16, 2018: Life Sciences, Society and Policy
Hub Zwart
Metaphors allow us to come to terms with abstract and complex information, by comparing it to something which is structured, familiar and concrete. Although modern science is "iconoclastic", as Gaston Bachelard phrases it (i.e. bent on replacing living entities by symbolic data: e.g. biochemical and mathematical symbols and codes), scientists are at the same time prolific producers of metaphoric images themselves. Synthetic biology is an outstanding example of a technoscientific discourse replete with metaphors, including textual metaphors such as the "Morse code" of life, the "barcode" of life and the "book" of life...
May 14, 2018: Life Sciences, Society and Policy
Brent Mittelstadt, Justus Benzler, Lukas Engelmann, Barbara Prainsack, Effy Vayena
This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of data...
May 9, 2018: Life Sciences, Society and Policy
Reginald Boersma, Bart Gremmen
We investigate how people form attitudes and make decisions without having extensive knowledge about a technology. We argue that it is impossible for people to carefully study all technologies they encounter and that they are forced to use inferences to make decisions. When people are confronted with an intangible abstract technology, the only visible attribute is the name. This name can determine which inferences a person will use. Considering these inferences is important: first, a name will reach consumers before detailed information, if any, will...
April 17, 2018: Life Sciences, Society and Policy
Edward Velasco
Inequalities persist when it comes to the attention, resource allocation and political prioritization, and provision of appropriate, adequate, and timely health interventions to populations in need. Set against a complex socio-political backdrop, the pressure on public health science is significant: institutions and scientists are accountable for helping to find the origins of disease, and to prevent and respond effectively more rapidly than ever. In the field of infectious disease epidemiology, new digital methods are contributing to a new 'digital epidemiology' and are seen as a promising way to increase effectivity and speed of response to infectious disease and public health events...
April 1, 2018: Life Sciences, Society and Policy
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