Articles

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

Evaluating determinants of rural Villagers’ engagement in conservation and waste management behaviors based on integrated conceptual framework of Pro-environmental behavior

This study aims to evaluate determinants of villagers’ engagement in pro-environmental behavior (PEB), including ecological conservation behavior (ECB) and waste management behavior (WMB). An integrated explor...

Authors: Piyapong Janmaimool and Chaweewan Denpaiboon

‘Mr Cummings clearly does not understand the science of genetics and should maybe go back to school on the subject’: an exploratory content analysis of the online comments beneath a controversial news story

An article published in the UK Guardian on 11/10/2013 with the headline ‘Genetics outweighs teaching, Gove advisor tells his boss’ reported a leaked document written by special advisor Dominic Cummings to the ...

Authors: Madeline Crosswaite and Kathryn Asbury

Mars ain’t the kind of place to raise your kid: ethical implications of pregnancy on missions to colonize other planets

The colonization of a new planet will inevitably bring about new bioethical issues. One is the possibility of pregnancy during the mission. During the journey to the target planet or moon, and for the first co...

Authors: Haley Schuster and Steven L. Peck

Integrated assessment of emerging science and technologies as creating learning processes among assessment communities

Emerging science and technologies are often characterised by complexity, uncertainty and controversy. Regulation and governance of such scientific and technological developments needs to build on knowledge and...

Authors: Ellen-Marie Forsberg, Barbara Ribeiro, Nils B. Heyen, Rasmus Øjvind Nielsen, Erik Thorstensen, Erik de Bakker, Lars Klüver, Thomas Reiss, Volkert Beekman and Kate Millar

Continental philosophical perspectives on life sciences and emerging technologies

Authors: Hub Zwart, Laurens Landeweerd and Pieter Lemmens

DIY-Bio – economic, epistemological and ethical implications and ambivalences

Since 2008, we witness the emergence of the Do-It-Yourself Biology movement, a global movement spreading the use of biotechnology beyond traditional academic and industrial institutions and into the lay public...

Authors: Jozef Keulartz and Henk van den Belt

Turning the tide or surfing the wave? Responsible Research and Innovation, fundamental rights and neoliberal virtues

The notion of Responsible Research and Innovation (RRI) has increasingly attracted attention in the academic literature. Up until now, however, the literature has focused on clarifying the principles for which...

Authors: Simone Arnaldi and Guido Gorgoni

Towards a phronetic space for responsible research (and innovation)

The term Responsible Research and Innovation has recently gained currency, as it has been designated to be a key-term in the European research framework Horizon 2020. At the level of European research policy, ...

Authors: Emanuele Bardone and Marianne Lind

A strategic stakeholder approach for addressing further analysis requests in whole genome sequencing research

Whole genome sequencing (WGS) can be a cost-effective and efficient means of diagnosis for some children, but it also raises a number of ethical concerns. One such concern is how researchers derive and communi...

Authors: Bradley Steven O. Thornock

The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have mor...

Authors: Raymond G. De Vries, Tom Tomlinson, H. Myra Kim, Chris D. Krenz, Kerry A. Ryan, Nicole Lehpamer and Scott Y. H. Kim

Erratum to: Islet Xeno/transplantation and the risk of contagion: local responses from Canada and Australia to an emerging global technoscience

Authors: Myra Cheng

Parental perspectives on consent for participation in large-scale, non-biological data repositories

Data sharing presents several challenges to the informed consent process. Unique challenges emerge when sharing pediatric or pregnancy-related data. Here, parent preferences for sharing non-biological data are...

Authors: Kiran Pohar Manhas, Stacey Page, Shawn X. Dodd, Nicole Letourneau, Aleta Ambrose, Xinjie Cui and Suzanne C. Tough

Ethical acceptability of research on human-animal chimeric embryos: summary of opinions by the Japanese Expert Panel on Bioethics

Human-animal chimeric embryos are embryos obtained by introducing human cells into a non-human animal embryo. It is envisaged that the application of human-animal chimeric embryos may make possible many useful...

Authors: Hiroshi Mizuno, Hidenori Akutsu and Kazuto Kato

Unexpected tissue and the biobank that closed: an exploration of value and the momentariness of bio-objectification processes

Unanticipated situations can arise in biobanking. This paper empirically documents unexpected situations at the anonymous biobank ‘Xbank’. Firstly, Xbank received an unexpected and significant quantity of tiss...

Authors: Neil Stephens and Rebecca Dimond

Bio-objectifying European bodies: standardisation of biobanks in the Biobanking and Biomolecular Resources Research Infrastructure

The article traces the genealogy of the Minimum Information About Biobank Data Sharing model, created in the European Biobanking and Biomolecular Resources Research Infrastructure to facilitate collaboration a...

Authors: Sakari Tamminen

Islet Xeno/transplantation and the risk of contagion: local responses from Canada and Australia to an emerging global technoscience

This paper situates the public debate over the use of living animal organs and tissue for human therapies within the history of experimental islet transplantation. Specifically, the paper compares and contrast...

Authors: Myra Cheng

Cord blood banking – bio-objects on the borderlands between community and immunity

Umbilical cord blood (UCB) has become the focus of intense efforts to collect, screen and bank haematopoietic stem cells (HSCs) in hundreds of repositories around the world. UCB banking has developed through a...

Authors: Nik Brown and Rosalind Williams

‘Pop-Up’ Governance: developing internal governance frameworks for consortia: the example of UK10K

Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by l...

Authors: Jane Kaye, Dawn Muddyman, Carol Smee, Karen Kennedy and Jessica Bell

Services in the self: embodied labor and the global bioeconomy

This review article discusses Melinda Cooper and Catherine Waldby’s recent book, Clinical Labor. Tissue donors and research subjects in the global bio-economy (Duke, 2014), as a topical contribution to the litera...

Authors: Christian Haddad

Reflections on different governance styles in regulating science: a contribution to ‘Responsible Research and Innovation’

In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of ...

Authors: Laurens Landeweerd, David Townend, Jessica Mesman and Ine Van Hoyweghen

Governing the research-care divide in clinical biobanking: Dutch perspectives

Biobanking, the large-scale, systematic collection of data and tissue for open-ended research purposes, is on the rise, particularly in clinical research. The infrastructures for the systematic procurement, ma...

Authors: Martin Boeckhout and Conor M.W. Douglas

Could the organ shortage ever be met?

The organ shortage is commonly presented as having a clear solution, increase the number of organs donated and the problem will be solved. In the light of the Northern Ireland Assembly’s consultation on moving...

Authors: Mairi Levitt

Constructing populations in biobanking

This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? W...

Authors: Aaro Tupasela, Karoliina Snell and Jose A. Cañada

Direct to consumer testing in reproductive contexts – should health professionals be concerned?

Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer’s own health professional. Eth...

Authors: Heather Skirton

Challenges of web-based personal genomic data sharing

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In p...

Authors: Mahsa Shabani and Pascal Borry

ELSA and RRI – Editorial

This editorial presents the background for the article collection ‘ELSA and RRI’. It sets the stage for the topics discussed in the collection and briefly presents the different contributions. It concludes by ...

Authors: Ellen-Marie Forsberg

Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?

This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consen...

Authors: Dara Hallinan and Michael Friedewald

Precaution, governance and the failure of medical implants: the ASR^(TM) hip in the UK

Hip implants have provided life-changing treatment, reducing pain and improving the mobility and independence of patients. Success has encouraged manufacturers to innovate and amend designs, engendering patien...

Authors: Matthias Wienroth, Pauline McCormack and Thomas J Joyce

The past and future of RRI

Within the space of a few years, the idea of Responsible Research and Innovation, and its acronym RRI, catapulted from an obscure phrase to the topic of conferences and attempts to specify and realize it. How ...

Authors: Arie Rip

The evolution of withdrawal: negotiating research relationships in biobanking

The right to withdraw from research, along with the necessity of adequately informed consent, is at the heart of the post-Nuremburg code of ethical safeguards in biomedical research on human participants. As b...

Authors: Karen Melham, Linda Briceno Moraia, Colin Mitchell, Michael Morrison, Harriet Teare and Jane Kaye

Health research access to personal confidential data in England and Wales: assessing any gap in public attitude between preferable and acceptable models of consent

England and Wales are moving toward a model of ‘opt out’ for use of personal confidential data in health research. Existing research does not make clear how acceptable this move is to the public. While people ...

Authors: Mark J Taylor and Natasha Taylor

The use of agrobiodiversity for plant improvement and the intellectual property paradigm: institutional fit and legal tools for mass selection, conventional and molecular plant breeding

Focused on the impact of stringent intellectual property mechanisms over the uses of plant agricultural biodiversity in crop improvement, the article delves into a systematic analysis of the relationship betwe...

Authors: Fulya Batur and Tom Dedeurwaerdere

Nature is (a) mine: conceptions of nature in the Dutch ecogenomics community

Every field of science, but especially biology, contains particular conceptions of nature. These conceptions are not merely epistemological or ontological, but also have normative dimensions; they provide an etho...

Authors: Sanne Van der Hout

Adapt or perish? Assessing the recent shift in the European research funding arena from ‘ELSA’ to ‘RRI’

Two decades ago, in 1994, in the context of the 4^th EU Framework Programme, ELSA was introduced as a label for developing and funding research into the ethical, legal and social aspects of emerging sciences and t...

Authors: Hub Zwart, Laurens Landeweerd and Arjan van Rooij