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Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance Life Sciences, Society and Policy Pub Date : 2021-12-13 Akyüz, Kaya, Chassang, Gauthier, Goisauf, Melanie, Kozera, Łukasz, Mezinska, Signe, Tzortzatou, Olga, Mayrhofer, Michaela Th.
Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review
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“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource Life Sciences, Society and Policy Pub Date : 2021-12-10 Quigley, Etain, Holme, Ingrid, Doyle, David M., Ho, Aileen K., Ambrose, Eamonn, Kirkwood, Katie, Doyle, Gerardine
As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated
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Investigating the effectiveness of nanotechnologies in environmental health with an emphasis on environmental health journals Life Sciences, Society and Policy Pub Date : 2021-09-13 Aghalari, Zahra, Dahms, Hans-Uwe, Sillanpää, Mika
The use of nanotechnologies is important to reduce environmental health problems in Iran, so the present study was conducted to determine the effectiveness of nanotechnologies in environmental health. This is a cross-sectional descriptive study for 11-year periods (2008–2018) on all articles published in three specialized journals of environmental health with emphasis on the use of nanotechnologies
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Limits of data anonymity: lack of public awareness risks trust in health system activities Life Sciences, Society and Policy Pub Date : 2021-07-26 Felix Gille, Caroline Brall
Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and
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The use of digital twins in healthcare: socio-ethical benefits and socio-ethical risks Life Sciences, Society and Policy Pub Date : 2021-07-05 Eugen Octav Popa, Mireille van Hilten, Elsje Oosterkamp, Marc-Jeroen Bogaardt
Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system (human or non-human). A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to
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Willingness of youth without disabilities to have romantic love and marital relationships with persons with disabilities Life Sciences, Society and Policy Pub Date : 2021-06-21 Bewunetu Zewude, Tewodros Habtegiorgis
People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities
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Research under the GDPR – a level playing field for public and private sector research? Life Sciences, Society and Policy Pub Date : 2021-03-01 Paul Quinn
Scientific research is indispensable inter alia in order to treat harmful diseases, address societal challenges and foster economic innovation. Such research is not the domain of a single type of organization but can be conducted by a range of different entities in both the public and private sectors. Given that the use of personal data may be indispensable for many forms of research, the data protection
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Identifying violence against the LGTBI+ community in Catalan universities Life Sciences, Society and Policy Pub Date : 2021-02-22 Jorge-Manuel Dueñas, Sandra Racionero-Plaza, Patricia Melgar, Paquita Sanvicén-Torné
Social struggles have led to the legal recognition of the rights of LGTBI+ people in some countries. Even so, violence against LGTBI+ people is a social problem throughout the world, and has resulted in the vulnerability and victimization of the members of this group. In Spain, no research has been published to date that analyzes this problem in the university context. Considering the scarcity of studies
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A secure procedure for early career scientists to report apparent misconduct Life Sciences, Society and Policy Pub Date : 2021-01-25 Baruch Fischhoff, Barry Dewitt, Nils-Eric Sahlin, Alex Davis
Early career scientists sometimes observe senior scientists engage in apparent scientific misconduct, but feel powerless to intervene, lest they imperil their careers. We propose a Secure Reporting Procedure that both protects them, when pursuing those concerns, and treats the senior scientists fairly. The proposed procedure is, we argue, consistent with the ethical principles of the scientific community
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The funhouse mirror: the I in personalised healthcare Life Sciences, Society and Policy Pub Date : 2021-01-05 Mira W. Vegter, Hub A. E. Zwart, Alain J. van Gool
Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail
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Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe Life Sciences, Society and Policy Pub Date : 2020-11-16 Michael Morrison, Miranda Mourby, Heather Gowans, Sarah Coy, Jane Kaye
Responsible Research and Innovation (‘RRI’) is a cross-cutting priority for scientific research in the European Union and beyond. This paper considers whether the way such research is organised and delivered lends itself to the aims of RRI. We focus particularly on international consortia, which have emerged as a common model to organise large-scale, multi-disciplinary research in contemporary biomedical
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THE FUTURE OF MEDICINE, healthcare innovation through precision medicine: policy case study of Qatar Life Sciences, Society and Policy Pub Date : 2020-11-01 M. Walid Qoronfleh, Lotfi Chouchane, Borbala Mifsud, Maryam Al Emadi, Said Ismail
In 2016, the World Innovation Summit for Health (WISH) published its Forum Report on precision medicine “PRECISION MEDICINE - A GLOBAL ACTION PLAN FOR IMPACT”. Healthcare is undergoing a transformation, and it is imperative to leverage new technologies to generate new data and support the advent of precision medicine (PM). Recent scientific breakthroughs and technological advancements have improved
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Good problems to have? Policy and societal implications of a disease-modifying therapy for presymptomatic late-onset Alzheimer’s disease Life Sciences, Society and Policy Pub Date : 2020-10-12 Misha Angrist, Anna Yang, Boris Kantor, Ornit Chiba-Falek
In the United States alone, the prevalence of AD is expected to more than double from six million people in 2019 to nearly 14 million people in 2050. Meanwhile, the track record for developing treatments for AD has been marked by decades of failure. But recent progress in genetics, neuroscience and gene editing suggest that effective treatments could be on the horizon. The arrival of such treatments
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The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes? Life Sciences, Society and Policy Pub Date : 2020-10-01 Violeta Argudo-Portal, Miquel Domènech
Freezers with biospecimen deposits became biobanks and later were networked at the pan-European level in 2013 under the Biobanking and BioMolecular Resources Research Infrastructure—European Research Infrastructure Consortium (BBMRI-ERIC). Drawing on document analysis about the BBMRI-ERIC and multi-sited fieldwork with biobankers in Spain from a science and technology studies approach, we explore what
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What is the impact of patient recruitment on offshoring of clinical trials? Life Sciences, Society and Policy Pub Date : 2020-09-21 Maryam Kermanimojarad
The issue of globalization of research is receiving considerable attention due to the increasing number of offshored R&D activities from the United States, Europe, and Japan. This paper explores this phenomenon and provides a model to analyze the factors that will likely contribute to a global transformation of clinical trials. By identifying the main characteristics of clinical trials, I aim to clarify
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Consolidating RRI and Open Science: understanding the potential for transformative change Life Sciences, Society and Policy Pub Date : 2020-09-01 Clare Shelley-Egan, Mads Dahl Gjefsen, Rune Nydal
In European research and innovation policy, Responsible Research and Innovation (RRI) and Open Science (OS) encompass two co-existing sets of ambitions concerning systemic change in the practice of research and innovation. This paper is an exploratory attempt to uncover synergies and differences between RRI and OS, by interrogating what motivates their respective transformative agendas. We offer two
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Just data? Solidarity and justice in data-driven medicine Life Sciences, Society and Policy Pub Date : 2020-08-25 Patrik Hummel, Matthias Braun
This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such
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How should researchers cope with the ethical demands of discovering research misconduct? Going beyond reporting and whistleblowing Life Sciences, Society and Policy Pub Date : 2020-08-06 Knut Jørgen Vie
In this paper, I will argue that making it mandatory to report research misconduct is too demanding, as this kind of intervention can at times be self-destructive for the researcher reporting the misconduct. I will also argue that posing the question as a binary dilemma masks important ethical aspects of such situations. In situations that are too demanding for individual researchers to rectify through
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Health is a political choice: why conduct healthcare research? Value, importance and outcomes to policy makers Life Sciences, Society and Policy Pub Date : 2020-07-27 M. Walid Qoronfleh
This paper offers the Eastern Mediterranean Region (EMR) viewpoint with Qatar as a case for lasting transformation of health systems. The Qatar case study illustrates the importance of research in the development of health policy. It provides description of a series of projects that have been undertaken in relevant national areas such as autism, dementia, genomics, palliative care and patient safety
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Allonymous science: the politics of placing and shifting credit in public-private nutrition research Life Sciences, Society and Policy Pub Date : 2020-06-22 Bart Penders, Peter Lutz, David M. Shaw, David M. R. Townend
Ideally, guidelines reflect an accepted position with respect to matters of concern, ranging from clinical practices to researcher behaviour. Upon close reading, authorship guidelines reserve authorship attribution to individuals fully or almost fully embedded in particular studies, including design or execution as well as significant involvement in the writing process. These requirements prescribe
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Sociological factors influencing the performance of organic activities in Iran Life Sciences, Society and Policy Pub Date : 2020-05-11 Mahsa Fatemi, Kurosh Rezaei-Moghaddam
The conventional production model based on extensive use of chemical inputs such as pesticides is increasingly challenged. Organic agriculture is considered as one of the most important alternative agricultural systems to produce healthy food without any chemicals. Current models are not suitable for prediction of environmental behaviors. The current study aims to analyze the diffusion of organic agriculture
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A socio-psychological model of laser levelling impacts assessment Life Sciences, Society and Policy Pub Date : 2020-02-17 Somayeh Tohidyan Far, Kurosh Rezaei-Moghaddam
Application of technologies has an important role in agricultural development. Identifying and assessing the impacts of agricultural technologies is necessary. This study aimed at assessing the impacts of laser levelling economically, socially, environmentally, and technically in the viewpoint of the agricultural experts and identifying factors determining their perception of the impacts. The study
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Broad consent under the GDPR: an optimistic perspective on a bright future Life Sciences, Society and Policy Pub Date : 2020-01-06 Dara Hallinan
Broad consent – the act of gaining one consent for multiple potential future research projects – sits at the core of much current genomic research practice. Since the 25th May 2018, the General Data Protection Regulation (GDPR) has applied as valid law concerning genomic research in the EU and now occupies a dominant position in the legal landscape. Yet, the position of the GDPR concerning broad consent
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Souled out of rights? – predicaments in protecting the human spirit in the age of neuromarketing Life Sciences, Society and Policy Pub Date : 2019-11-22 Alexander Sieber
Modern neurotechnologies are rapidly infringing on conventional notions of human dignity and they are challenging what it means to be human. This article is a survey analysis of the future of the digital age, reflecting primarily on the effects of neurotechnology that violate universal human rights to dignity, self-determination, and privacy. In particular, this article focuses on neuromarketing to
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Addressing research integrity challenges: from penalising individual perpetrators to fostering research ecosystem quality care Life Sciences, Society and Policy Pub Date : 2019-06-10 Hub Zwart, Ruud ter Meulen
Concern for and interest in research integrity has increased significantly during recent decades, both in academic and in policy discourse. Both in terms of diagnostics and in terms of therapy, the tendency in integrity discourse has been to focus on strategies of individualisation (detecting and punishing individual deviance). Other contributions to the integrity debate, however, focus more explicitly
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Questioning the rhetoric of a ‘willing population’ in Finnish biobanking Life Sciences, Society and Policy Pub Date : 2019-05-27 Karoliina Snell, Heta Tarkkala
According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks,
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Understanding social oocyte freezing in Italy: a scoping survey on university female students’ awareness and attitudes Life Sciences, Society and Policy Pub Date : 2019-05-03 Pamela Tozzo, Antonio Fassina, Patrizia Nespeca, Gloria Spigarolo, Luciana Caenazzo
In Western countries, a social trend toward delaying childbearing has been observed in women of reproductive age for the last two decades. This delay is due to different factors related to lifestyle, such as the development of a professional career or the absence of the right partner. As a consequence, women who defer childbearing may find themselves affected by age-related infertility when they decide
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Digital epidemiology and global health security; an interdisciplinary conversation Life Sciences, Society and Policy Pub Date : 2019-03-19 Tim Eckmanns, Henning Füller, Stephen L. Roberts
Contemporary infectious disease surveillance systems aim to employ the speed and scope of big data in an attempt to provide global health security. Both shifts - the perception of health problems through the framework of global health security and the corresponding technological approaches – imply epistemological changes, methodological ambivalences as well as manifold societal effects. Bringing current
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Mapping do-it-yourself science Life Sciences, Society and Policy Pub Date : 2019-01-14 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
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Scientific mistakes from the agri-food biotech critics Life Sciences, Society and Policy Pub Date : 2018-12-01 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
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CRISPR as agent: a metaphor that rhetorically inhibits the prospects for responsible research Life Sciences, Society and Policy Pub Date : 2018-11-13 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
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Understanding the emotion of shame in transgender individuals – some insight from Kafka Life Sciences, Society and Policy Pub Date : 2018-10-01 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
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How to do things with metaphors: engineering life as hodgepodge Life Sciences, Society and Policy Pub Date : 2018-09-17 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
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Constructing future scenarios as a tool to foster responsible research and innovation among future synthetic biologists Life Sciences, Society and Policy Pub Date : 2018-09-10 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
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The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project Life Sciences, Society and Policy Pub Date : 2018-09-04 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
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Creating life and the media: translations and echoes Life Sciences, Society and Policy Pub Date : 2018-08-20 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
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Evolutionary tinkering vs. rational engineering in the times of synthetic biology Life Sciences, Society and Policy Pub Date : 2018-08-12 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
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Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold? Life Sciences, Society and Policy Pub Date : 2018-08-01 Gabrielle Bertier, Yann Joly
BackgroundThe 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
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Who are the users of synthetic DNA? Using metaphors to activate microorganisms at the center of synthetic biology Life Sciences, Society and Policy Pub Date : 2018-07-14 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
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Synthetic biology in the German press: how implications of metaphors shape representations of morality and responsibility Life Sciences, Society and Policy Pub Date : 2018-06-24 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
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Individuals on alert: digital epidemiology and the individualization of surveillance Life Sciences, Society and Policy Pub Date : 2018-06-14 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
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Machine metaphors and ethics in synthetic biology Life Sciences, Society and Policy Pub Date : 2018-06-04 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
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The biogenetical revolution of the Council of Europe - twenty years of the Convention on Human Rights and Biomedicine (Oviedo Convention) Life Sciences, Society and Policy Pub Date : 2018-05-16 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
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Scientific iconoclasm and active imagination: synthetic cells as techno-scientific mandalas Life Sciences, Society and Policy Pub Date : 2018-05-14 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
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Is there a duty to participate in digital epidemiology? Life Sciences, Society and Policy Pub Date : 2018-05-09 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
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Genomics? That is probably GM! The impact a name can have on the interpretation of a technology Life Sciences, Society and Policy Pub Date : 2018-04-17 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
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Disease detection, epidemiology and outbreak response: the digital future of public health practice Life Sciences, Society and Policy Pub Date : 2018-04-01 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
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Editors introduction: biobanks as sites of bio-objectification Life Sciences, Society and Policy Pub Date : 2018-02-21 Neil Stephens, Nik Brown, Conor Douglas
* Correspondence: Neil.Stephens@Brunel.ac.uk Brunel University London, London, UK Full list of author information is available at the end of the article Biobanks and biorepositories have become increasingly important and prevalent since the 1990s as holders and distributors of biological material. They exhibit significant diversity in form and function, from the very small to the very large, from the
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I’m shocked: informed consent in ECT and the phenomenological-self Life Sciences, Society and Policy Pub Date : 2018-02-13 Patrick Seniuk
This paper argues that phenomenological insights regarding selfhood are relevant to the informed consent process in the treatment of depression using electro-convulsive therapy (ECT). One of the most significant side-effects associated with ECT is retrograde amnesia. Unfortunately, the current informed consent model does not adequately appreciate the full extent in which memory loss disturbs lived-experience
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Crisis Communication in Public Health Emergencies: The Limits of ‘Legal Control’ and the Risks for Harmful Outcomes in a Digital Age Life Sciences, Society and Policy Pub Date : 2018-02-06 Paul Quinn
Communication by public authorities during a crisis situation is an essential and indispensable part of any response to a situation that may threaten both life and property. In the online connected world possibilities for such communication have grown further, in particular with the opportunity that social media presents. As a consequence, communication strategies have become a key plank of responses
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How medical technologies shape the experience of illness Life Sciences, Society and Policy Pub Date : 2018-02-03 Bjørn Hofmann, Fredrik Svenaeus
In this article we explore how diagnostic and therapeutic technologies shape the lived experiences of illness for patients. By analysing a wide range of examples, we identify six ways that technology can (trans)form the experience of illness (and health). First, technology may create awareness of disease by revealing asymptomatic signs or markers (imaging techniques, blood tests). Second, the technology
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Unscripted Responsible Research and Innovation: Adaptive space creation by an emerging RRI practice concerning juvenile justice interventions Life Sciences, Society and Policy Pub Date : 2018-01-24 Irja Marije de Jong, Frank Kupper, Jacqueline Broerse
Emerging RRI practices have goals with respect to learning, governance and achieving RRI outcomes (action). However, few practices actually achieve the action phase as actors lack room to manoeuvre, and lack guidance on how to move forward because of the inherent unscriptedness of the emerging RRI practice. In this explorative research an emerging RRI practice is studied to identify factors and barriers
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Digital epidemiology: what is it, and where is it going? Life Sciences, Society and Policy Pub Date : 2018-01-04 Marcel Salathé
Digital Epidemiology is a new field that has been growing rapidly in the past few years, fueled by the increasing availability of data and computing power, as well as by breakthroughs in data analytics methods. In this short piece, I provide an outlook of where I see the field heading, and offer a broad and a narrow definition of the term.
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Teilhard de Chardin’s oeuvre within an ongoing discussion of a gene drive release for public health reasons Life Sciences, Society and Policy Pub Date : 2017-12-01 Anto Čartolovni
Within the domain of public health, vector-borne diseases are among the most vehemently discussed issues. Recent scientific breakthroughs in genome editing technology provided a solution to this issue in the form of a gene drive that might decrease and even eradicate vector-borne diseases. Gene drives are engineered, and designed genes that can break typical inheritance rules and be passed to almost
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A statistician’s perspective on digital epidemiology Life Sciences, Society and Policy Pub Date : 2017-11-24 Michael Höhle
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
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An ethical assessment model for digital disease detection technologies Life Sciences, Society and Policy Pub Date : 2017-09-20 Kerstin Denecke
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
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The social dimension of biobanking: objectives and challenges Life Sciences, Society and Policy Pub Date : 2017-09-13 E. V. Bryzgalina, K. Y. Alasania, T. A. Varkhotov, S. M. Gavrilenko, E. M. Shkomova
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
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Creative tensions: mutual responsiveness adapted to private sector research and development Life Sciences, Society and Policy Pub Date : 2017-09-07 Matti Sonck, Lotte Asveld, Laurens Landeweerd, Patricia Osseweijer
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
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Synthetic biology, metaphors and responsibility Life Sciences, Society and Policy Pub Date : 2017-08-29 Carmen McLeod, Brigitte Nerlich
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
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Ethical sharing of health data in online platforms – which values should be considered? Life Sciences, Society and Policy Pub Date : 2017-08-21 Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo, Vojin Rakic
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