Articles

Broad consent under the GDPR: an optimistic perspective on a bright future

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...

Authors: Dara Hallinan

Souled out of rights? – predicaments in protecting the human spirit in the age of neuromarketing

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, ...

Authors: Alexander Sieber

Addressing research integrity challenges: from penalising individual perpetrators to fostering research ecosystem quality care

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...

Authors: Hub Zwart and Ruud ter Meulen

Questioning the rhetoric of a ‘willing population’ in Finnish biobanking

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 t...

Authors: Karoliina Snell and Heta Tarkkala

Understanding social oocyte freezing in Italy: a scoping survey on university female students’ awareness and attitudes

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 t...

Authors: Pamela Tozzo, Antonio Fassina, Patrizia Nespeca, Gloria Spigarolo and Luciana Caenazzo

Digital epidemiology and global health security; an interdisciplinary conversation

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 f...

Authors: Tim Eckmanns, Henning Füller and Stephen L. Roberts

Mapping do-it-yourself science

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 diffus...

Authors: Federico Ferretti

Scientific mistakes from the agri-food biotech critics

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-ca...

Authors: Giovanni Tagliabue

CRISPR as agent: a metaphor that rhetorically inhibits the prospects for responsible research

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...

Authors: Leah Ceccarelli

Understanding the emotion of shame in transgender individuals – some insight from Kafka

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....

Authors: Simona Giordano

How to do things with metaphors: engineering life as hodgepodge

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 eth...

Authors: Matthew Kearnes, Declan Kuch and Angus Johnston

Constructing future scenarios as a tool to foster responsible research and innovation among future synthetic biologists

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 d...

Authors: Afke Wieke Betten, Virgil Rerimassie, Jacqueline E. W. Broerse, Dirk Stemerding and Frank Kupper

The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

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...

Authors: 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 and Jane Kaye

Creating life and the media: translations and echoes

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 ...

Authors: Manuel Porcar and Juli Peretó

Evolutionary tinkering vs. rational engineering in the times of synthetic biology

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 i...

Authors: Víctor de Lorenzo

Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold?

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 personal...

Authors: Gabrielle Bertier and Yann Joly

Who are the users of synthetic DNA? Using metaphors to activate microorganisms at the center of synthetic biology

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 mak...

Authors: Erika Amethyst Szymanski

Disease surveillance data sharing for public health: the next ethical frontiers

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 opport...

Authors: Patty Kostkova

Synthetic biology in the German press: how implications of metaphors shape representations of morality and responsibility

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 discipli...

Authors: Martin Döring

Individuals on alert: digital epidemiology and the individualization of surveillance

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 Quantifi...

Authors: Silja Samerski

Machine metaphors and ethics in synthetic biology

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 suc...

Authors: Joachim Boldt

The biogenetical revolution of the Council of Europe - twenty years of the Convention on Human Rights and Biomedicine (Oviedo Convention)

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 p...

Authors: Oktawian Nawrot

Scientific iconoclasm and active imagination: synthetic cells as techno-scientific mandalas

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 Bachelar...

Authors: Hub Zwart

Is there a duty to participate in digital epidemiology?

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, digit...

Authors: Brent Mittelstadt, Justus Benzler, Lukas Engelmann, Barbara Prainsack and Effy Vayena

Genomics? That is probably GM! The impact a name can have on the interpretation of a technology

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 a...

Authors: Reginald Boersma and Bart Gremmen

Disease detection, epidemiology and outbreak response: the digital future of public health practice

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 agains...

Authors: Edward Velasco

Editors introduction: biobanks as sites of bio-objectification

Authors: Neil Stephens, Nik Brown and Conor Douglas

I’m shocked: informed consent in ECT and the phenomenological-self

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 significa...

Authors: Patrick Seniuk

Crisis Communication in Public Health Emergencies: The Limits of ‘Legal Control’ and the Risks for Harmful Outcomes in a Digital Age

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 possi...

Authors: Paul Quinn

How medical technologies shape the experience of illness

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 (tran...

Authors: Bjørn Hofmann and Fredrik Svenaeus

Unscripted Responsible Research and Innovation: Adaptive space creation by an emerging RRI practice concerning juvenile justice interventions

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 g...

Authors: Irja Marije de Jong, Frank Kupper and Jacqueline Broerse

Digital epidemiology: what is it, and where is it going?

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...

Authors: Marcel Salathé

Teilhard de Chardin’s oeuvre within an ongoing discussion of a gene drive release for public health reasons

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 f...

Authors: Anto Čartolovni

A statistician’s perspective on digital epidemiology

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 ha...

Authors: Michael Höhle

An ethical assessment model for digital disease detection technologies

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 surveillanc...

Authors: Kerstin Denecke

The social dimension of biobanking: objectives and challenges

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 o...

Authors: E. V. Bryzgalina, K. Y. Alasania, T. A. Varkhotov, S. M. Gavrilenko and E. M. Shkomova

Creative tensions: mutual responsiveness adapted to private sector research and development

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 l...

Authors: Matti Sonck, Lotte Asveld, Laurens Landeweerd and Patricia Osseweijer

Synthetic biology, metaphors and responsibility

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...

Authors: Carmen McLeod and Brigitte Nerlich

Ethical sharing of health data in online platforms – which values should be considered?

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 (...

Authors: Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo and Vojin Rakic

How biological background assumptions influence scientific risk evaluation of stacked genetically modified plants: an analysis of research hypotheses and argumentations

Scientific risk evaluations are constructed by specific evidence, value judgements and biological background assumptions. The latter are the framework-setting suppositions we apply in order to understand some ...

Authors: Elena Rocca and Fredrik Andersen

Transformation of intimacy and its impact in developing countries

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 pers...

Authors: MD. Muniruzzaman

Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students

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...

Authors: Pamela Tozzo, Antonio Fassina and Luciana Caenazzo

Farmer-suicide in India: debating the role of biotechnology

Indian Biotech opponents have attributed the increase of suicides to the monopolization of GM seeds, centering on patent control, application of terminator technology, marketing strategy, and increased product...

Authors: Gigesh Thomas and Johan De Tavernier

“A good collaboration is based on unique contributions from each side”: assessing the dynamics of collaboration in stem cell science

The rise of ‘big biology’ is bringing academic and industrial scientists together in large consortia to address translational challenges in the life sciences. In order to assess the impact of this change, this...

Authors: Michael Morrison

The body as constitutive element phenomenology and psychoanalysis on our view of ourselves and others

The aim of this manuscript is to highlight that from the phenomenology and psychoanalysis point of view, the meaning of the notion of the body is different from the medical biologicist discourse. In psychoanalysi...

Authors: Paulina Monjaraz Fuentes, María del Carmen Rojas Hernández, Stefano Santasilia and Fernanda Monjaraz Fuentes

Towards new human rights in the age of neuroscience and neurotechnology

Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise impor...

Authors: Marcello Ienca and Roberto Andorno

The oblique perspective: philosophical diagnostics of contemporary life sciences research

This paper indicates how continental philosophy may contribute to a diagnostics of contemporary life sciences research, as part of a “diagnostics of the present” (envisioned by continental thinkers, from Hegel...

Authors: Hub Zwart

Product, not process! Explaining a basic concept in agricultural biotechnologies and food safety

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 varieti...

Authors: Giovanni Tagliabue

A paedophile scan to prevent child sexual abuse in child care? A thought experiment to problematize the notion of alignment in Responsible Research and Innovation

Responsible Research and Innovation (RRI) is a science policy concept that gained traction from 2000 onwards in the EU and US, in which alignment on purposes and values between different stakeholders is a key ...

Authors: Irja Marije de Jong, Frank Kupper, Corine de Ruiter and Jacqueline Broerse

Sharpening the cutting edge: additional considerations for the UK debates on embryonic interventions for mitochondrial diseases

In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germline-altering, IVF-based embryonic techniques: pronuclear transfer and maternal spindle transfer (PNT and MST). The...

Authors: Erica Haimes and Ken Taylor