Articles

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

Early detection of criminality concerns and the social link

In modern societies, rhetoric focused on body and health is common as biomedical sciences have taken a big place in people’s lives. They must enhance the society, health and living conditions of citizens. Solv...

Authors: Laurence Perbal

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

Obituary for Herbert Gottweis, Professor of Political Science, University of Vienna: Born 8 February 1958 in Vienna, died 31 March 2014 in Vienna

No abstract

Authors: Barbara Prainsack

The role of philosophy of science in Responsible Research and Innovation (RRI): the case of nanomedicine

Research on ethical, legal and social aspects (ELSA) of life sciences and new technologies has mainly been focused on impacts and consequences, while the emerging framework of Responsible Research and Innovati...

Authors: Gry Oftedal

We have never been ELSI researchers – there is no need for a post-ELSI shift

This article criticizes recent suggestions that the current ELSI research field should accommodate a new direction towards a ‘post-ELSI’ agenda. Post-ELSI research seeks to avoid the modernist division of resp...

Authors: Bjørn Kåre Myskja, Rune Nydal and Anne Ingeborg Myhr

Limiting and facilitating access to innovations in medicine and agriculture: a brief exposition of the ethical arguments

Taking people’s longevity as a measure of good life, humankind can proudly say that the average person is living a much longer life than ever before. The AIDS epidemic has however for the first time in decades...

Authors: Cristian Timmermann

Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan

As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently a...

Authors: Jusaku Minari, Tetsuya Shirai and Kazuto Kato

Challenges for the European governance of synthetic biology for human health

Synthetic biology is a series of scientific and technological practices involved in the application of engineering principles to the design and production of predictable and robust biological systems. While po...

Authors: Conor MW Douglas and Dirk Stemerding

The intersection of relational autonomy and narrative ethics for the patient unwilling to disclose genetic diagnosis information

The rare case of the patient unwilling to disclose genetic data to his or her family provides an opportunity to expand the atomistic conception of the autonomous individual in medical decision-making. Medical ...

Authors: Michael Gallagher

Resuscitation and resurrection: The ethics of cloning cheetahs, mammoths, and Neanderthals

Recent events and advances address the possibility of cloning endangered and extinct species. The ethics of these types of cloning have special considerations, uniquely different from the types of cloning comm...

Authors: Sariah Cottrell, Jamie L Jensen and Steven L Peck

Open Genetic Code: on open source in the life sciences

The introduction of open source in the life sciences is increasingly being suggested as an alternative to patenting. This is an alternative, however, that takes its shape at the intersection of the life scienc...

Authors: Eric Deibel

Institutionalising ELSA in the moment of breakdown?

This article discusses outcomes of a dialogue conference on ‘The road ahead for ELSA in Norway: Issues of quality, influence and network cooperation’ held in Oslo in December 2012. Norwegian researchers in the...

Authors: Ellen-Marie Forsberg

Perceptions of nature, nurture and behaviour

Trying to separate out nature and nurture as explanations for behaviour, as in classic genetic studies of twins and families, is now said to be both impossible and unproductive. In practice the nature-nurture ...

Authors: Mairi Levitt

Forensic DNA databases in European countries: is size linked to performance?

The political and financial investments in the implementation of forensic DNA databases and the ethical issues related to their use and expansion justify inquiries into their performance and general utility. T...

Authors: Filipe Santos, Helena Machado and Susana Silva

Bringing in the controversy: re-politicizing the de-politicized strategy of ethics committees

Human/animal relations are potentially controversial and biotechnologically produced animals and animal-like creatures – bio-objects such as transgenics, clones, cybrids and other hybrids – have often created ...

Authors: Lonneke Poort, Tora Holmberg and Malin Ideland

The lore of low methane livestock: co-producing technology and animals for reduced climate change impact

Methane emissions from sheep and cattle production have gained increasing profile in the context of climate change. Policy and scientific research communities have suggested a number of technological approache...

Authors: Ann Bruce

Frankenstein 2.0.: Identifying and characterising synthetic biology engineers in science fiction films

Synthetic biology (SB) has emerged as one of the newest and promising areas of bio-technology. Issues typically associated to SB, notably in the media, like the idea of artificial life creation and “real” engi...

Authors: Angela Meyer, Amelie Cserer and Markus Schmidt

The bioinformatics of genetic origins: how identities become embedded in the tools and practices of bioinformatics

In the life sciences, where large data sets are increasingly setting the stage for research, the role of bioinformatics is expanding. This has far-reaching consequences, not only for the way research is done, ...

Authors: Jan van Baren-Nawrocka

Motivation in the age of genomics: why genetic findings of disease susceptibility might not motivate behavior change

There is a growing consensus that results generated through multiplex genetic tests, even those produced as a part of research, should be reported to providers and patients when they are considered “actionable...

Authors: Tinsley HG Webster, Sarah J Beal and Kyle B Brothers

Review of “Reframing Rights: Bioconstitutionalism in the Genetic Age” byS. Jasanoff (ed.)

Authors: Atina Krajewska

Relatively (im) material: mtDNA and genetic relatedness in law and policy

Mitochondrial donation poses the latest regulatory challenge for policy-makers in the context of assisted conception. Since 2010 the Human Genetics Commission, the Human Fertilisation and Embryology Authority ...

Authors: Caroline Jones and Ingrid Holme

New life sciences innovation and distributive justice: rawlsian goods versus senian capabilities

The successful decoding of human genome and subsequent advances in new life sciences innovation create technological presuppositions of a new possibility of justice i.e. the just distribution of both social (i...

Authors: Theo Papaioannou

From ELSA to responsible research and Promisomics

Authors: Ruth Chadwick and Hub Zwart

Patient and family trajectories of mitochondrial disease: diversity, uncertainty and genetic risk

Mitochondrial disease can be a devastating, degenerative illness, with limited treatment and no cure. Novel reproductive techniques involving mitochondria donation present an opportunity for women with mitocho...

Authors: Rebecca Dimond