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Daniele Navarra

Innovation, Risk and Governance

Home > Daniele Navarra > Experiments Without Borders? Ethical and Participatory Approaches to New Technologies

Experiments Without Borders? Ethical and Participatory Approaches to New Technologies

by Redazione FGB [1], 26 November 2006

Sheila Jasanoff delivered with the utmost elegance of a Harvard Professor the BIOS Annual Lecture chaired by Nikolas Rose at the London School of Economics the 15th of June 2006. The title: "Experiments Without Borders: biology in the labs of life" parallels some of the issues that have been recently discussed by the Giannino Bassetti Foundation's web-site (see Science, Politics & Responsibility: An Agenda for the Governance of Innovation and Technology [2] and the call for comments Which Responsibility? [3]).

The lecture, which offered the initial input for this piece, started by reiterating Prince Charles's question of the reason why if genetically modified (GM) food can pose as many ethical concerns as genetically engineered drugs, the controls over GM food have been less stringent?Jasanoff quoted Derek Burke, perhaps one of the most famous advocates of GM food and biotechnology to provide an answer to that question, saying that it is not true that the regulations concerning GM food are less stringent, but different. Due to the different nature of the subject of the experiment as well as the effects such experiments may cause at the scale required to undertake them, unlike genetically engineered drugs, experiments related to GM food cannot be undertaken only in the laboratory.

Sheila Jasanoff commented that there has been no trial over GM foods in humans and for good reasons. These issues are at the centre of controversial debate which is polarising the European Union concerning the development and application of new technologies that can potentially affect, alter and/or enhance the functioning and capabilities of the human body including stem cell research, genetic manipulation (from food or directly on human genes), biotechnology and 'underskin' or 'wearable' technologies.

On the 25th of September 1996, the Group of Advisors on the Ethical Implications of Biotechnology to the European Commission (GAEIB) adopted on the 'Ethical Aspects of patenting inventions involving elements of human origin'. They stressed the ethical principle of non-commercialisation of the human body; that informed and free consent should be respected; and that the granting of an invention derived from the knowledge of a human gene (or a sequence of it) is acceptable only if, on one hand, the identification of the function associated with the gene allows for new possibilities (for instance the production of new drugs), and on the other hand, if the intended use of the patent is sufficiently specific and identified.

More recently, the new European Group on Ethics in Science and New Technologies (EGE) agrees that it is necessary to secure the right balance between the inventors interests and the society's interest, in the sense that 'one task for the community is to secure ethical principles and values in the context of possible conflicting interests of stakeholders', namely: patients and patients' associations, inventors, and other researchers, donors, industry, inventors, healthcare providers and social insurance and supporting the need of new regulations since these issues are not explicitly covered by existing legislation, particularly in terms of privacy and data protection.

We should perhaps remember the readers that in 2003 the Swiss parliament approved a new framework, which allows the use of stem cells grown in vitro (i.e. not humanly grown) for research. This law was approved by a referendum in November 2004, three years after the approval of the law on artificial insemination. However, it is different from the one applied in Great Britain, where the production of embryos is allowed only for research, whereas Germany does not allow research on in vitro, but only on imported stem cells. The doctrine applied in Switzerland is also agreed in similar terms also in France, Holland, Denmark and Finland. However, all these countries forbid the creation of clones to produce embryos and stem cells can be used only up to the seventh day of growth. The fines for non-compliance can be truly severe and range up to 200,000 Swiss Francs and five years in jail.

Jasanoff raised strong concerns over the use of such experiments in the first place inferring that if Burke's answer point out an important difference existing in GM organisms as opposed to stem cell research for instance, it is also perplexing that nearly 3/4 of the American population has been involved since 1980s in an unusual 'clinical trial' with the introduction in the food chain of genetically modified soy beans. She advocates for the need to for a generative discourse for discussing the role of science and technology in society. In her paper on 'Ordering Knowledge, Ordering Society' she makes clear that 'what happens in science and technology today is interwoven with issues of meaning, values, and power in ways that demand sustained critical inquiry'.

Admittedly, as Jasanoff suggests, the traditional disciplinary discourses fall short in understanding the complicated interplay of the cognitive, the institutional, the material and the normative dimensions of society, especially in understanding the intersection of science and technology with politics and culture. Thus, she continued, the engagement of the public is paramount and should happen also across borders. However realising this ambition needs ex ante an ongoing process of re-calibration, which could be facilitated by the use of forums across borders in a move towards what she defined as 'cross-national bioethics', which would mean 'not only to probe values, but to expose the non-paradigmatic dimensions of experimental design'.

Towards the end of the lecture a call was made for the necessity not to forget the importance of the principle of informed consent and the continuous engagement of the public necessary to deliberate and legislate around these issues. To be sure, the biopower of GM organisms could forebody catastrophic and unforeseeable outbreaks, unless the debate is framed including an ethical perspective and a definition of the field of enquiry. As Rita Levi Montalcini would say 'not everything that can be has to be done'.

However, 'underskin' technologies such as cardiovascular pacers for patients with conduction disorders or heart failure have been around for a while and yet are widely used and accepted whereas identification and location devices offer a rather different set of issues for debate. In particular, there would be a series of cross-national issues that would need to be considered in the drafting of such experiments across borders.

Bridget Hutter of the Centre for the Analysis for Risk and Regulation at the London School of Economics and Political Science, points out in her paper on 'The Regulation of Economic Life', that this could raise issues on whether this would be achievable with little de jure discretion, or if it could be broadly framed with a scope flexible enough for local, or national, interpretation. But it would, perhaps most fundamentally, question the way in which different 'legal' as well as 'risk' cultures can be accomodated within one framework. Therefore, if that is possible and desirable some questions are worth asking and especially: should there be hamronisation, subsidiarity and flexibility? How much national differences should be taken into account?

Discussing the electronic provision of health care services, for instance, Cornford and Klecun-Dabrowska (1996) point out how heterogeneous technology and services can be linked up remotely to provide health services 'at a distance' over various telecommunication networks.
Their governance therefore becomes relevant not just for the structuring of service-delivery activities, but it is a political plan, a vision or a 'glue', which links together the actions and responsibilities of the organisations and institutions involved in the extension of such experiments and their structuring, scope and evaluation.

To be sure, the symbolic and grounded character of such experiments would need to take into account the interests of all the parties involved in the design of the experimental process as well as the differences that could exist in local priorities, while as move closer to the international realm design and compliance become riddled also with questions of disclosure of sensitive information to those outside. These issues should be considered also with respect to the contradictory nature of national citizenship in a globalised risk society for the implementation of experiments of this type.

According to Ulrich Beck, citizenship in the West is conceived in terms of national rights and national duties used as the underlying assumption upon which risk is regulated within the national territory. On the other hand, a path towards such type of experimental institutional design is provided by the Bassetti Foundation's in the research project on 'Public Participation and Governance of Innovation', which sought to activate new experimental methods for decisions making in the area of GM food and biotechnology, favoring the encounter of experts, administrators and citizens, networking a diverse pool of expertise as a way to bring forward their perceptions to aid the regulation concerning the introduction (or not) of GM food, as well as for the future market activities that these technologies could introduce.

In a final comment, we would like to point out that although Jasanoff's suggestion is perhaps a realistic one, more could have been said about the organisational and governance challenges that would need to be addressed in order to produce such design and especially the risks and challenges faced in taking stock of the recent debate in this web-site on 'which responsibility'? where Mariachiara Tallacchini has brought forward some of the issues addressed in my previous paper in her article about From Causality to Responsibility: Steps towards the Unknown [4].

Casting these issues as Global ICT Programmes [5] could cater for a much broader inter-disciplinary significance and interest of the issues involved in the creation of such a 'laboratory across borders' and could perhaps provide a lens through which to suggest more ethical and participatory approaches to new technologies.

Information about the speaker:
Sheila Jasanoff is Pforzheimer Professor of Science and Technology Studies at Harvard University's John F Kennedy School of Government. She has served on the Board of Directors of the American Association for the Advancement of Science and as president of the Society for Social Studies of Science.

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  1. 1] /schedabiografica/Redazione FGB
  2. 2] /en/navarra/2006/03/science_politics_and_responsib.html
  3. 3] /en/grasseni/2006/02/quale_responsabilita_parte_1_i.html
  4. 4] /en/grasseni/2006/06/ancora_su_responsabilita_secon.html
  5. 5] http://www.lse.ac.uk/collections/informationSystems/PhDProgramme/abstractsOfPhDTheses/since1995/navarra.htm
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