Paper short abstract:

Great claims have been made for synthetic biology, yet being based on genetic modification techniques, societal concerns might be expected. Working with a team of synthetic biologists we have created both formal and informal discursive spaces in which Responsible Innovation concepts can be applied.

Paper long abstract:

Synthetic biology has had extraordinary claims made for its importance. It will 'heal us, heat and feed us' according to the then UK Chancellor of the Exchequer in 2012. And yet, as a direct development of genetic modification (GM) technology, the socio-ethical concerns provoked by synthetic biology might well be anticipated. The development of strategies for the amelioration of such concerns has often fallen to bioethicists engaged on Ethical, Legal and Social Issues (ELSI) programmes. However, recognition of the limitations of the ELSI approach has led to developments around the concept of Responsible Research and Innovation (RRI). Where ELSI programmes are conducted by specialists working in parallel with scientists, RRI approaches aim for the scientists themselves to anticipate and reflect on socio-ethical concerns and work with stakeholders to shape the direction of research.

Working with a team of synthetic biologists, we are developing a model for the creation of discursive spaces in which we act as facilitators for scientists; encouraging them to consider social and bioethical aspects of their work. In this way we become collaborators in, rather than appendages to, the development of the science. Empirical research with these scientists suggested ways in which RRI might be fostered and recognised. A relatively informal scheme, whereby routine laboratory meetings set aside some time to consider RRI issues has been instigated. Additionally, a more formal space has been created with the establishment of a project-based 'Responsible Innovation Directorate'. This presentation will report on the work begun by that more formal approach.

Paper short abstract:

Based on empirical data gathered from public engagement events addressing biobanking in Austria, this paper elaborates how citizens assign value to biomaterials and data, and how they conceptualize the relationship between participants and biobanks in terms of reciprocity and care.

Paper long abstract:

Biobanks have become core infrastructures for providing access to human materials and health information for biomedical research. Processing these materials for research purposes is dependent on participants' agreement to donate and on the informed consent (IC) they are willing to give. Yet, making an informed decision about the use of samples/data is a particular challenge in the biobank context, fueling debates about ethically appropriate consent forms, control and ownership, data protection and privacy, as well as about how to improve the involvement of publics and patients in biobanking governance. In our paper, we analyze how citizens relate to biobank-based research and how they conceptualize this relationship in terms of responsibility and care, as well as regarding normative ideals of "gift-giving" for the common good. We draw on data from a public engagement format of the Austrian Biobank infrastructure, namely 15 "citizen-expert-panels" (CEPs), bringing together citizens, patient representatives and professionals from the field. In our analysis, we are going beyond the evaluation of CEPs' capability to engage publics, but will rather carve out how citizens (re)construct value of biomaterials and data within situated knowledge-building about "appropriate" biomedical research. This happens within an imagination of reciprocity that requires mutual engagement instead of unidirectional information, which is codified in the IC. By illustrating how biobanks are situated in a wider context of biomedical and societal developments, we conclude with discussing how this could inform a more value-oriented policy-making. This research has been carried out in the framework of BBMRI.at (funding: BMWFW).

Paper short abstract:

Empirical imaginaries are proposed as a tool to look into desirable scenarios of the use of care robots in health care. Vision Assessment methods are used in order to explore fears about, and challenges of, the use of care robots in a children's hospital.

Paper long abstract:

For some time, artefacts and technologies have been used in hospitals and health care environments. However, the recent development of care robots designed to interact with people has opened some controversies. The evocative potential of robots to make us to think about our own humanity (Suchman, 2011) facilitates the emergence of ethical debates and questions related to its adequacy or desirability, especially in its use with vulnerable collectives. Some voices warn about the reduction of human contact (Sparrow & Sparrow, 2006), while other advocate designing moral machines capable to make ethical decisions (Anderson & Anderson, 2007). Beyond catastrophic or utopic scenarios of robotics in our daily life, we want to grasp those imaginaries related to the use of care robots in a children's hospital. Inspired by empirical ethics, "empirical imaginaries" are understood as tools to approach the way people envisage social and ethical controversies in the use of social care robots in a particular context, a children's hospital. To better understand these imaginaries, we conducted a set of interviews and focus groups using an approach similar to Vision Assessment (VA). In order to make possible the emergence of a more meaningful public debate on social and ethical issues, VA proposes a method to articulate visions about robotics in a direction more desirable for people, trying to overcome speculative ethics (van der Plas et al., 2010).

Paper short abstract:

Research within a large-scale project called BioSHaRE-EU shows that those engaged in collaboration struggle with aspects of collaboration and respond by creating new bureaucratic procedures, because of ethical concerns, however, these concerns are about authorship, not confidentiality.

Paper long abstract:

International multi-disciplinary collaboration would be expected to run into different problems than collaborations of smaller scope. This paper is based on research within a large-scale project called BioSHaRE-EU (Biobank Standardisation and Harmonisation for Research Excellence in the European Union). What can the view from the ground in an international infrastructural epidemiology project tell us about ethics, power and knowledge production within the European scientific research community? Based on analysis of audio and video data from a BioSHaRE meeting held in Amsterdam in 2012, the concerns expressed by those engaged in efforts to advance non-disclosive virtual pooling of data among studies in Europe are explored. Deliberations about disclosure are evident, however, the only ethical concerns articulated are about other researchers using data, not about the confidentiality of the data, signalling ethical concerns distinct from the research ethics which are considered by the now-ubiquitous ethics committees set up over the past half-century. The researchers opt for bureaucratic mechanisms to limit the scope of collaboration in response to these concerns. Bureaucracy may be an indigenous strategy for safely-reinscribing power structures attractive for European researchers when faced with uncertainty and appears to have the inherent appeal of appearing to be doing things 'properly'. This helps clarify why a free and open collaboration which requires no collaboration is both attractive and hard to achieve in practice. In particular, an exploration of the relationship between the structural and the individual levels offers a glimpse of why and how disinclination to collaborate manifests.

Paper short abstract:

In this presentation I highlight an important distinction that has so far been underemphasised in empirical bioethics: between interpretive and deliberative methodologies, and in particular, the difference in the epistemic authority to which each can lay claim.

Paper long abstract:

The flourishing of the empirical bioethics literature over the last two decades has led to numerous attempts at developing typologies of different approaches. In this presentation I highlight an important distinction that has so far been underemphasized: between interpretive and deliberative methodologies, and in particular, the difference in the epistemic authority to which each can lay claim.

This is a short 'impulse presentation' for the roundtable following the longer paper presentations in this session.

Paper short abstract:

Intersectoral and transdisciplinary participatory or collaborative research necessarily involves researchers 'getting our hands dirty'. So how does such meddlesome work square with STS's critical mindset when relationships are dependent on good rapport, trust and reciprocity?

Paper long abstract:

Contemporary STS is often engaged in co-productive sociotechnical projects which include a normative dimension or are frankly ethical in scope; take for example, the co-production of technologies and ethical governance for sharing health and social care data in the 'Learning Health System' approach to health care. Such projects are often characterised by their intersectorality and interdisciplinarity: researchers working alongside citizens, bioinformaticians, care workers, patient and public advocates, statisticians, clinicians, communications and engagement specialists and others. This is a potentially thorny mix! That it is also practise-oriented rather than research-oriented may raise tensions as the motivations, expectations, cultures and assumptions of its heterogeneous actors intersect and sometimes collide. If co-production in deliberative spaces is an end in itself for empirical bioethics (and that is an open question) what then of the necessary tensions that working 'with' presents? How does this meddlesome work square with STS's critical mindset, when working relationships are dependent on good rapport, trust and reciprocity?

This short 'impulse presentation' precedes the roundtable discussion following full paper presentations in this session.

Paper short abstract:

This short impulse presentation leads into the roundtable discussion. It juxtaposes the negotiation of ethical concepts - such as reproductive right, health risk management, and identity - of stakeholders involved in reproductive donation in Taiwan and Japan.

Paper long abstract:

Assisted reproductive technologies (ARTs) are co-shaped with regulation, societal values, and understandings of human dignity that make diverse practices in different societies. In this paper, I compare the negotiations of ethical concepts such as reproductive right, health risk management, and identity of those involved in reproductive donation in Taiwan and Japan. Drawing from archival documents and interviews, my findings show prioritisation of differing ethical concerns in these two governance regimes. ART legislation in Taiwan (Artificial Reproduction Act) emphasises anonymity and autonomy of donors and recipient couples while avoiding the anxiety of incest probability among half-siblings at any expense. The absence of discussions about donor-conceived children's rights to know their origins is one outcome of this. Taiwan also sets the strictest use of donated eggs and sperms: a donor's gametes can only produce one baby. In Japan, ART regulation takes the form of consent guidelines rather than law. The Japan Institution for Standardizing Assisted Reproductive Technology (JISART) highlights the welfare of donor-conceived children, especially with respect to their identity and origin. Societal values of biological relationship highly affect gamete donations in Japan. Such a comparison of value-oriented national ART regulations is necessary in order to understand and inform transnational ART use.