parliamentarians advocate their party‘s line, but at the same time have a great understanding for the other parties‘ views and the experts‘ views. The result is that when a parliamentary committee presents its official report, the outcome of the committee, it is established among a majority of the political parties in the parliament.
XTP treatment? The latter perspective was a key element of early discussions, and Marie Omnell Persson and Nils H Persson suspected that severe illness would affect attitudes towards XTP.
Nils H Persson: ―Marie and I discussed this a lot, how we could capture this.
We chose to ask both the general public and individuals who would be directly affected. We thought that there would be a quite big difference between a public that is not directly involved in this and those who are in a vulnerable position, but as I recall, it was not a big difference.‖
Kristofer Hansson: ―No, it was not, a slight difference but not remarkable.‖
Nils H Persson: ―Perhaps it was statistically significant, but it was not as impressive as we thought it would be. This was because the public was quite positive. But many of the patients were positive and that says something about their desperate situation.‖
Kristofer Hansson: ―Yes, of course. You thought these two groups would be interesting to compare?‖
Nils H Persson: ―Yes.‖
Kristofer Hansson: ―In order to?‖
Nils H Persson: ―To show that you cannot ask people in general how important something is if they do not have the need. It is much easier to say yes to something when one is in a life-threatening situation, than to say yes to something that someone else might find useful, especially if there is a risk with it. We tried to cover both the opportunities and the risk adequately, which is not so easy to do in a survey.‖
The committee suspected that the perspectives on XTP of the general public and of those directly affected would vary more than it did. The primary hypothesis was that the relation between opportunity and risk would be different between the two groups, and that this difference was vital to explore. What the committee found was that there was no great difference and that the public was positive to further research to develop XTP. But it is interesting to see how the “public interest” is transformed in a society with biotechnologies that are risky, turning into something that must relate to the “affected interests”. Jürgen Habermas states that modern society focuses on how to translate the ―public interest‖ into general laws, equal for all (Habermas, 2009). Surveys have always been a way of determining the ―public interest‖ where the citizens are not a part of the decision-making process, but instead a mass whose views can be examined and valued. Our hypothesis is
that this relationship between the state and the public changes when the relationship between opportunities and risk in biotechnologies become more tangible. We feel that this is what Nils H Persson is saying when he comments that affected parties have a vested interest that is different from the ―public interest‖.
At the same time, the committee‘s task was not to investigate the public‘s view in this question in more depth, but to present a solution as to how the researchers could continue with XTP research. A more informed political discussion, in which the public would hopefully be more integrated, would come later in the process.
Bertil Persson: ―I did not perceive that our task was to identify in detail the public‘s perception of this matter, but to develop, from as many angles as possible, a factual basis for a political decision. If this had come through as a bill, then we would have had a debate, and then the political parties would have had to respond to the public debate that had cropped up because of the bill.‖
If the committee‘s proposal had led to a political decision, there would, and rightly so, be more discussions and maybe the public would also have become a part of these discussions.
From this perspective, the results of the survey confirmed to the committee that it could, under certain circumstances, be okay to continue with XTP research and clinical trials. The survey was a litmus test for the committee that let them know it was meaningful to continue the investigation in the direction they had begun. What the committee found is summarised below:
• There was no massive resistance to XTP.
• Those who were waiting organs for transplantation were more positive than the general public.
• The attitude towards transplantation from animals was affected only to a small extent by a life-threatening situation.
• Greater uncertainty about XTP breeds insecurity and negative attitude.
• There was a high acceptance for the use of animal cells, tissues and research.
These results were presented in chapter 14 of the Swedish Government Official Report, followed by discussions of psychological, social and cultural aspects in chapter 15, using the studies of Margareta Sanner and Susanne Lundin (see chapter 2). Chapter 13 of the report presented international studies on the public‘s relationship to XTP. These three chapters of the report covered public opinion, but the committee members also dealt with public opinion on other occasions that were not included in the report. For example, some people phoned Marie Omnell Persson after receiving the survey and talked with her about XTP, and the
politicians in the committee met people in a range of contexts. One of these occasions was the XTP conference that was arranged by the Swedish Gene Technology Advisory Board in 1998 in collaboration with the committee and twelve other organisations.