There were two types of stakeholder groups in Sweden – the groups that were keen to see XTP evolve into an available medical technology and those who believed that the research should not continue. The first group, consisting of patient organisations, was already collaborating with researchers. They are not visible in our media material. It may be that they were happy with the relationship they had and they did not need to affect other groups in society concerning this question. It may also be that this group had no culture of exerting pressure on public funders.

The second group, the animal rights organisations, were not satisfied with how XTP developed. They primarily saw this technology as resulting in more suffering for the animals;

this was how they framed XTP as a policy problem. We looked closer at Animal Rights Sweden, and they had another view of XTP technology that they tried to communicate to other groups in society. As shown in the interview, they had difficulty reaching out to the media. But they were able to have input in the committee because they were interviewed and they later commented on the Official Report. What impact their input actually had on the committee is hard to say, but the interview with Staffan Persson indicates that the input was rather minor.

8 Conclusions

In this case study we were interested in how experts and elites frame the issue of biotechnology – that it is controversial and risky – and thus create an allocation of responsibility where the public‘s voice is not heard (Pellizzoni, 2001a and 2001b; Pellizzoni and Ylönen, 2008). This case study shows how the XTP researchers (the experts) and the politicians (the elite) established a power relationship in the 1990s, through the XTP commission, where they could give various parties a legitimacy to speak about problems related to XTP research. They developed a language and arguments that stated how to talk about XTP. In addition, the asymmetries between the voice of the general public and experts/elite was not problematized to any greater extent. Instead the relation to the public was traditional in the sense that the public voice were heard through the studies carried through by the scientists from the humanities and social sciences alternatively directly through the survey.

This development had already started in the XTP research community, where the researchers framed the XTP policy problems. When this biotechnology began to be perceived as controversial and risky, the XTP researchers first began collaborating with researchers from the humanities and social sciences. These researchers had the task of studying the ethical questions linked to the XTP questions and also to come up with a solution on how XTP research could continue to a clinical phase. In this collaboration as well, there was a relationship established on who could speak and how they might speak, which meant that the public‘s voice was heard through the researchers‘ articles and presentations to the XTP researchers.

When the risk of the PERV virus became apparent, XTP scientists and researchers from the humanities and social sciences could not solve the ethical problems on their own, so a new collaboration was started with the politicians. This collaboration took place in the parliamentarian commission that was assigned to investigate how XTP could move from basic research to clinical trials. It was not a primary task for this commission to consistently hear the public‘s voice. As a parliamentarian commission, it was rather a representative of the public. They had the privilege of formulating problems that would be discussed at a later stage, though this later stage did not occur in Sweden. The only time the public was heard was when the commission did a survey, in which the individual answers were translated to the public‘s interests.

Both the Green Party of Sweden and Animal Rights Sweden had views on XTP that did not agree with the commission. They had the opportunity to communicate their views to the commission and to the public. At the same time, it seems their perspective on XTP did not appear in this specific policy process. They were heard, but their language and knowledge styles were too different. Taking the perspective of Jean-François Lyotard, we hypothesise

that the Green Party and Animal Rights Sweden became “the Other”, someone with a life perspective that was not in line with the experts and elites at this time (Lyotard, 1983).

Naming them “the Other” gave experts and elites the chance to frame the biotechnology issue and simultaneously determine who is entitled to have a say and who is not (c.f.

Pellizzoni, 2001b).

Our hypothesis is that by defining “the Other” we can also discuss the policy-making processes from a gender perspective that focus more on the cultural structures and less on the representation of women and men in different expert bodies and policy-making. Central for Sweden is also that the representation in for example the XTP committee is equal from a gender perspective - seven women and eight men. In our material we can see that “the Other” is all people and groups that do not see the possibility of overcoming technology problems. As Carolyn Merchant indicates, there is a long history in the West where nature, like women, has been seen as something that could be chastened and controlled (Merchant, 1989). XTP technology fits into such a perspective, where nature and animals can and should be controlled by humans and for humans‘ benefit. “The Other‟s” perspective cares more about nature and animals – which throughout history have been defined as feminine.

Our hypothesis is that the power relationship between the XTP researchers (the experts) and the politicians (the elite) can be understood from this perspective. It is not a question of gender equality, but that the system is based on a specific view of what is nature and what is culture. Thus, what is seen as controversial and risky has its origin in the cultural division between nature and culture. If we want to understand how the public‘s voice can be heard, we need to understand how this division is constructed and what the power relationship is between the experts and the elites.

9 Annexes


Political System

Cabinets: Coalition governments with minority or majority governments, with cooperation between the parties. Much of the policy is based on agreement between the government and other parties, with little conflicts. In the 1991 election it was a majority government, consisting of a multi-party government with the Conservatives, the Liberal Party, the Centre Party and the Christian Democrats. In the 1994 election the Social Democratic Party formed a one-party government in minority, with a broad cooperation between the party blocks. In the 1998 election Social Democratic Party formed a one-party government in minority, with support from the Left Party and the Green Party.

Legislature: One chamber that is representing the citizens, called ―Riksdagen‖. Consists of 349 members and is headed by a speaker (―talman‖). It takes at least four percent of the votes for a party to take place in the Parliament. The politicians in the Parliament get their information from own staff, federal ministries and interest groups/social partners.

Consideration of proposals for new laws is done by propositions, which are written proposal by the government, and motions, which are proposals authored by the parliamentary politics.

Executive-legislative relationship: Consensual were the laws are steered through Parliament. Proposals and motions are addressed in specific committees in charge of the proposed topic. The decision from the committee is presented in a committee report. Much of the work the parliamentary politics do is done in the specific committees.

Bureaucracy: The Swedish Constitution Act distinguishes between two types of public bodies: the decision-making bodies and government agencies. All state and municipal agencies, with the exception of the decision-making assemblies as for example the Parliament, are government agencies. The government agencies are rather large in Sweden and operate at arms length from government; they are not governed by the politicians. They have the authority to execute the policy decisions from the Parliament.

Judicial review: The courts are less important for political decisions in Sweden.

Party system: Around 7 parties are represented in parliament. Social Democratic Party and Moderaterna are the two biggest parties in Sweden.

The election in 1991: the Conservatives, the Liberal Party, the Centre Party, the Christian Democrats, the Social Democratic Party, the Left Party and the New Democracy.

The election 1994: the Social Democratic Party, the Left Party, the Green Party, the

Conservatives, the Liberal Party, the Centre Party and the Christian Democrats.

The election 1998: the Social Democratic Party, the Left Party, the Green Party, the Conservatives, the Liberal Party, the Centre Party and the Christian Democrats.

Interest group system: Sweden has a corporatist system meaning that the politicians listen to what the interest group has to say.

Direct democracy: There were no instruments for direct democracy in Sweden concerning the XTP-case. To get the public and interest groups views on the question there were a survey done and the committee interviewed interest groups. There were also an XTP-conference were expert presented their views on XTP, but this did not lead to a broader discussion. When the XTP-committee was finished with their report, it went on referral to authorities and interest groups.

It is similar for other policy processes concerning biotechnology.

Political culture: Sweden has little tradition of participation in politics from the civil society.

The decision-making is rather open but there is no tradition of participation in it. The attitude (or culture) in Sweden has been that politicians are representing the public in decisions concerning complicated technology. In this way there was no direct citizen involvement in the policy-making concerning XTP.

Science-society relations: Scientific experts play a big role in policy-making concerning XTP and other policy processes concerning biotechnology: it was the XTP-scientist who ran the issue and made it a policy issue. The scientist was also part of the XTP-committee and had considerable potential to influence the politicians and the XTP-committee.

Some of the scientist also tried to create relations to the society, for example through mass media.

It is similar for other policy processes concerning biotechnology.

Constitutional division of territorial power: Concerning XTP the state was central when it came to the policy-making process. But the country council (landsting) are independent when it comes to controlling the healthcare. They can decide how the healthcare shall prioritize between different expenditures. Under the last years the state has intervene more and more in healthcare policy questions.

Electoral system: The electoral system is disproportional, were also minority rights can be strong.

In document CIT-PART: Report Case Study Sweden Hansson, Kristofer; Lundin, Susanne (Page 94-100)