Articles

The funhouse mirror: the I in personalised healthcare

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...

Authors: Mira W. Vegter, Hub A. E. Zwart and Alain J. van Gool

Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe

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 l...

Authors: Michael Morrison, Miranda Mourby, Heather Gowans, Sarah Coy and Jane Kaye

THE FUTURE OF MEDICINE, healthcare innovation through precision medicine: policy case study of Qatar

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...

Authors: M. Walid Qoronfleh, Lotfi Chouchane, Borbala Mifsud, Maryam Al Emadi and Said Ismail

Good problems to have? Policy and societal implications of a disease-modifying therapy for presymptomatic late-onset Alzheimer’s disease

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 A...

Authors: Misha Angrist, Anna Yang, Boris Kantor and Ornit Chiba-Falek

The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes?

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 Infrastru...

Authors: Violeta Argudo-Portal and Miquel Domènech

What is the impact of patient recruitment on offshoring of clinical trials?

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 phenomeno...

Authors: Maryam Kermanimojarad

Consolidating RRI and Open Science: understanding the potential for transformative change

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 an...

Authors: Clare Shelley-Egan, Mads Dahl Gjefsen and Rune Nydal

Just data? Solidarity and justice in data-driven medicine

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 develo...

Authors: Patrik Hummel and Matthias Braun

How should researchers cope with the ethical demands of discovering research misconduct? Going beyond reporting and whistleblowing

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...

Authors: Knut Jørgen Vie

Health is a political choice: why conduct healthcare research? Value, importance and outcomes to policy makers

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 developm...

Authors: M. Walid Qoronfleh

Allonymous science: the politics of placing and shifting credit in public-private nutrition research

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 attrib...

Authors: Bart Penders, Peter Lutz, David M. Shaw and David M. R. Townend

Sociological factors influencing the performance of organic activities in Iran

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 agricultura...

Authors: Mahsa Fatemi and Kurosh Rezaei-Moghaddam

A socio-psychological model of laser levelling impacts assessment

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 lase...

Authors: Somayeh Tohidyan Far and Kurosh Rezaei-Moghaddam

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